Mesothelioma - Jan's Journey

Trial Clinic

2012-01-27T09:10:00.000Z

It's been one of those weeks. I upgraded my computer last weekend to 7 but didn't realise I had a 64 bit computer, it had previously been running on Vista but 32 instead of 64! So it kept crashing, hubby went on the internet and purchased me a brand new one. Sweet!

I use to be good with computers etc, but not any more I didn't set the new one up right, we hit the button 'easy transfer', which didn't ask what we wanted and started transferring everything over, old programs the lot, so we crashed it and tried to restore to factory settings, didn't work properly so ended up calling in our IT guy to put it right. So Tuesday night I got to be at 11.45 and couldn't warm up, Wednesday was all day again over the new computer and then it was Trial Clinic on Thursday.

We drove up to the Bobby Robson Cancer Centre which is situated at the Freeman in Newcastle. We weren't sure what to expect or really why we were there but Dr Plummer was a lovely young lady who explained how trials work from Phase I, which is what she does.

She was pleased to see someone reasonably healthy in front of her and said I would probably be offered a trial and I would go on a list. We asked questions, but stupidly neither of us were really prepared with questions.

Phase I is where the drug has just completed it's rodent toxcity and ready for the first human to give it a whirl. This is where they start 3 people on a low dose, if it doesn't have side effects and cancer growth isn't too much the next 3 get a larger dose, if the side effects aren't to difficult and the cancer growth is stable they increase again and again until the either hit terrible side effects or the cancer didn't stop. It is a big risk on these, but at the same time just as much risk as having a placebo on a phase 3 trial.

The first trial is also a blanket trial, so it isn't just for meso, maybe 21 or 48 people could be enrolled with various cancers, it could work with one type and not with another. Apparently that's how alimta was found, one of the patients on a trial had meso and alimta only worked on his tumour.

When I was on alimta I felt guilty that some Rat had gone through such terrible pain and wasn't able to tell anyone or get any comfort, I guess you could say if I go ahead the Rat is getting its own back on me. I don't like the thought of drugs being tried on animals, they can't say no or don't have a choice and I was really shocked to hear that Apes and Dogs are still used in the USA, I only hope I have never had something tried on either of them.

I was just thinking yesterday how I just took this whole meeting as if it were a normal everyday event, shows how after so long with meso you just become adjusted to living with it. If this had taken place 6 years ago I would have been on the phone to my friends discussing it etc but we just came home and continued with life.

I had a great skype conversation the other evening with Lisa, how marvellous skype is, after all these years I am getting back into techno. It was great to put a face to someone I am in communication with. As I said a couple of years ago in My Letter to Meso, I have met some wonderful people because of this disease, and I hope that all of us keep expanding those circles and help each other through one of the worst cancers out there.

We still have what is classed as a rare cancer, I don't know how with so many people dying from it every year, I guess its rare because it is so untreatable. Asbestos is hard to kill and yesterday was another learning curve for me, our cells try to kill this fibre but it keeps irriating our cell structure until the cell structure collapses and becomes damaged, then it turns on itself and the rest of our cells, hence cancer is born. Because the fibre is damage proof, thats why we used it for everything, the body just can't break the structure down. Let us hope out there somewhere is a natural asbestos killer and one that will be found before too long.

Work today, back to the grind stone, so looking forward to having a day off

Infuriating pain

2012-01-22T10:47:00.000Z

It's been an odd ball last 9 days or so. My heart pain subsides then returns then subsides, its like a merry go round but much worse. I had a course of antibiotics, for a chest infection, which bloods must have confirmed as no other action was needed, but I fear that this new heaviness is here to stay. The headaches haven't improved that much either, both signs of meso prior the operation. I know that I shouldn' complain because I can still function and although I have other pain issues they seem to have faded into the background and let these stand out!

I haven't been out with the dogs the only good day we didn't have any wind was Tuesday but it was freezing, I only went back to work on Thursday and did a couple of hours, and felt guilty because my desk was piling up with work that I must get sorted. The accountants rang and asked when my 3 year ends would be done for one of the groups ... only 1 month left to complete them so I must get them done, and already its year end of our main Company end of Jan. I just can't focus long enough to complete a single task!

Lexi has come into season early and the last couple of days Bear has stalked her every move, back to the ear washing and the constant sniffing. It is terrible for the boy, Lexi is too old for the op and I don't want to chop Bear. Hopefully another day and their hormones will settle down, I have suggested sending Bear on holiday while she's in season but hubby doesn't think it will do him any harm. I said to him it must be similar to a man on Viagra and no woman in sight.

Scan date has come through end of Feb, so it will be 4 months since the last one, I know I'm worried but haven't discussed it with anyone. If it comes back the same as the last one I will be over the moon but I daren't think to much especially with all this chest nonsense that I have at the moment.

And life carries on, at times I can't believe that meso can be so destructive in such a short time and then you get reminded when someone dies within a short period of finding out. A friend's friends father died within 10 days of being diagnosed just before Christmas, they had the shock of meso then loosing him all within 14 days, that's a lot to come to terms within.

Looking out at the tree's I know I wouldn't be stepping over the threshold today, another blustery day up North. At least Hubby and dogs will have fun over the fields.......

Feeling better

2012-01-16T17:10:00.000Z

After having such a nightmare of a weekend with pain I decided to help the situation and took a temezapem last night to help ease the nasty heart pain and give me a good nights sleep, which it did and I felt a lot better this morning. My heart felt 100% better than it did on Friday, so as arranged on Saturday by my GP I was getting ready to go to the surgery to collect a form for an xray at 10am. While I was in the shower the surgery rang to say I had an appointment at 11.10 for bloods, so thought just go then. When I checked my phone (some time later) my GP had rang at 10.20 asking where was I? Strange how he never mentioned he'd rang and he'll think strange how I never said anything. I never have my mobile anywhere near me, infact I'm not sure why I really have one.

The antibiotics have kicked in as the pain has been tolerable today, although still a mean headache, but I really shouldn't moan. The problem is I remember these nasty pains from 07 and it worries me, but I am trying to be positive and think it certainly is an infection of sorts. After all it has been lingering for a week and the cold weather doesn't help, every time you breath in cold air it always affects your chest. So my heart, ironbar across my back and headache will be an infection, I can't bear to think of it as being anything else.

The problem with mesothelioma is it can be extremely painful and as it grows the pains get worse and trying to find the right painkiller is just as hard as trying to buy the 'latest most have which is out of stock' and its been promised as a gift! I did try severdol yesterday but that didn't help either, but the heart pain seems more severe in the morning, eases off as I move around and is back by 4 on an afternoon. I just can't bear the thought of if this is the meso how will I cope, I have become a wimp where pain is concerned, I use to be able to withstand it, after all I laid patio's and paths with full on pleurisy without knowing it, now I just can't deal with it.

I envy those who suffer no pain with this cancer, I can't understand why I have been so unlucky, I remember being told once that opening someone's chest can bring on a whole load of pain problems on their own, having someone do that twice obviously must cause 2 lots of the same problem. Am I feeling sorry for myself, yes, I should know better but I am worrying about the future and how on earth I will deal with more pain as this mesothelioma progresses through my chest. It's no fun when your heart feels heavy and you have an ironball in their, together with feeling like your insides are carrying a iron bar across your back. Also I feel like I'm being lazy, I haven't cooked for a week, I can't bear the kitchen it feels like an ice box, so hubby is cooking on his own, he's making me a hot water bottle for bedtime, and on a morning lighting a fire in the office so its nice and warm. I wonder where he gets all the energy from and would I be doing the same if the boot was on the other foot? I know I would but I feel guilty non the less because he is taking care of me. In some ways I think it is easier when its the man who is ill rather than the woman.

I know I will not be allowed to go to work tomorrow, part of me is thankful the other not, my workload is filling up plus there are so many decisions to be made on the housing side. I honestly don't know how my brother does it, he isn't well yet seems to cope much better than I. Maybe men are the stronger sex after all.

Time to face the ice box, maybe I should make dinner tonight.

My Oncologist doing this for us

2012-01-16T13:50:00.000Z

I must admit I have not kept up with the news recently and I will probably go on my Rant and Rave to finish off but here is what the bma have published:
Two consultants have embarked on an ambitious 160-mile run to ‘defend the NHS’.

BMA council member Clive Peedell (pictured centre) and North Yorkshire consultant David Wilson (pictured left) are running from Cardiff to the Department of Health in London, to protest about the Health and Social Care Bill.

The clinical oncologists started their run at a statue of Aneurin Bevan in Cardiff city centre today (10/01/2012).

A ‘nervously excited’ Dr Peedell said: ‘We’re doing this to inform members of the public about the dangers of this bill and to put pressure on the government to get this stopped, if possible, by embarrassing them.

‘If we do not achieve that, this is important as it will put down a historic marker to say that, when things go wrong in the future, the majority of doctors wanted this bill withdrawn and opposed it in its entirety.

‘This run will increase awareness of the fact the bill will damage the medical profession and the doctor-patient relationship.’
To read further please follow the link below:

http://web2.bma.org.uk/nrezine.nsf/wd/BSKN-8QDJL2?OpenDocument&C=14+January+2012

Iguess I should start reading the daily papers again, to be honest I have stayed away from the News and papers since beginning of December .. shocking I know.

2012-01-14T09:47:00.000Z

I got in to see the GP and he had a quick listen, the pain doesn't seem so bad once I get moving around but I have a stuffy nose and a rotten headache. He said it sounds flat, but to be honest I don't exactly have an easy chest area to listen to. He prescribed Clarithromycin so I came out hoping it's an infection. I took the tablets after dinner and then 3 hours later was ill, feeling sick, diarrhoea, stomach pains etc. My mouth tasted terrible and I knew I was having a reaction to the tablets.

This morning my heart feels heavier and my head not so good, I text my doc who wants me to go to urgent care but its Saturday and I know I will end up spending at least 4 hours sitting there with lots of bugs floating around. Having hunted through the medicine cupboard have found some flucloxacillin so text back and said will try these but will need more on Monday if they work as I don't have a full course. I have had intermittent pain in this area for quite a while, which I know will be the meso, but to have it full on like this I really pray it is an infection. The pain is terrible and as I am waking up my brain is trying to deal with it by trying to categorise it in my mind, I know I am strange. I don't have shortness of breath it just hurts if I breath deeply, guess I will be spending the weekend bored rigid on the sofa.

Its 3 years tomorrow since I had surgery, 3 years, the time has flown by so fast, it took me forever to recover from the pain, but then again I did push myself too much by being back at work 3 months later. I am the worst patient for being ill. But as Lyn keeps saying I can't go back and change anything I did what I did and that's that.

Scan is booked for end of February, then I guess see what is out there, if this is meso then I need to shrink it or stop it so I don't have pain and that means taking action. I know I do have growth and I have thickening around the heart area as well as those naughty nodules, but could they grow so fast to cause so much pain in such a short period? And action - what action is left out there for me?

My sofa is calling, have a few Dvd's to watch so maybe today will fly as well.

Heaviness in Chest

2012-01-13T09:04:00.000Z

I know I should never hope this but I am hoping I have a chest infection, although I doubt it will be that. Back in 07 I started to get this heavy feeling around my heart and as time went on headaches. I was going to read back over my diaries but thought better of it as at the moment so I am hoping that the chest is an infection and the headaches the excess skin I have over my eyes.

Debbie did a great bit of explaining on her blog the other day of the different types of meso, the cells which construct the cancer type we have. When first diagnosed I was mixed, its nice (in a way) to see they have a name Biophasic, I didn't know they were named until I read Debbies Blog, but now I am sure I only have the Epithelioid - not that they are good to have either! Sometimes we all take that time out and reflect on how things are and Debbie did a great post on it.

I contacted my surgeon who suggested I go and see my GP, heaviness in the heart area is a common symptom with meso patients, it isn't the heart but the structures holding the heart in place that can be affected by the meso, I just hope it hasn't decided to grow on the false membrane around my heart. I had the pericardium removed because the meso was on it, I can't see anyone going in and replacing this. So I am hoping its a chest infection, although the only thing I have is a stuffy nose with a lot of aches and pains in my back.

Will keep you posted, if it is the meso you know all I will do is moan about pain again! Just as life begins again something has to happen to knock us off our track.

I was also interested to hear from a friend in Poland who sent info on the NRGO trial, I didn't realise it was being carried out in the UK, so thank you. I wonder if I can get some one up North to do it for us.

Oh well its shower time and then off to work.

Out in the Woods

2012-01-09T08:47:00.000Z

Yesterday I finally got to do what I love best, going off in the fields with dogs and hubby in tow. It was great to be out in the fresh air, no wind and enjoy the things in life that are free.

Fresh Air and good clean fun.

The dogs really enjoyed me being with them and we had a good 90 minutes out, I took my camera and tried to get some shots of Bear running, I love it when his eye's are bouncing and his tongue hanging out. He doesn't look like any other dog I have ever seen.

My brother drove up to meet us to inform us that my eldest had managed to chop his foot off while chain sawing some damaged trees down. All he knew at that time was he was in surgery! I just can't believe the luck our family has, but luckily we later learnt that he had only sown through the top part of his foot and not completely managed to severe the tendons. At least no major damage done, just he'll probably be in the office for a week and will be hell to work with. He hates being inside and prefers to be out and about.

I haven't seen my GP for a while so have promised myself I will make an appointment. I know that I said I wasn't going to chase scans and live on a three monthly cycle but I still need to organise the next scan and keep upto date with what is going on.

I feel quite privileged to still be alive after so many years, but there again we should expect to live a lot longer. Since I was first diagnosed we are suppose to have come a long way, so as my friend Lisa keeps asking, why do they still keeping saying 3 to 9 months? And the way time flies that doesn't give you long does it!

On such a note I hope everyone on treatment hits the goal and remission is happening, for those starting my heart goes out to you, for us slow growers, may that keep lasting, (Lyn my fingers are always crossed for you,) and lastly those in remission may you stay that way and have no nasty surprises.

3 Year Wonder

2012-01-07T10:11:00.001Z

It is nearly 3 years since I put my body and myself through the 9 hour gruelling operation to clear my chest of mesothelioma. Ok the meso didn't hold up its end of the bargain by staying away but my body certainly worked to get on top of the intrusion, learning to live with an air leak and fluid and not forgetting that membrane which replaces the pericardium and diaphragm. Not forgetting the stress and anxiety my hubby went through wondering whether I would make it out of surgery, then out of hospital etc. I will celebrate the 15th, even though the meso is back it hasn't won yet and in time another war will begin to try and hold it back.

I jumped on the scales and am now at a healthy 9st 4, that is 16 lbs I have put on and I am no longer scraggy looking, only problem is I could do with staying at 9st because extra weight brings about more to carry around and extra work on the heart. I know under today's standards that would still be underweight but I was normally around this. I look healthy, even though my finger nails are still heavily ridged and flaky, my hair has thickened up, only taken 4 years! To me this means all the tramua of surgery, chemo and cryo is finally out of my system and the body has relaxed back at feeling normal. Shame the meso is back in there, otherwise I would be on top of the world.

My 3rd Boob has become more annoying since I last wrote and then last Tuesday night I had a Flight or Fight session again. After sitting so long in the office, Bear had the front door wide open, I most have got cold on my back, it went right into the core of me. Neither the bath or hot water bottle could warm me up, then it started, so I knocked myself out with meds, Wednesday I didn't see work as I was worn out but at least the session had gone, I also think I missed my pain killers on Tuesday morning so a touch of Cold Turkey as well?

I have told myself that I am not chasing the meso this year, I need a rest from worrying about it but I know that should things progress I will do something if possible, I just can't help it. There are so many of us out there at the moment with slow progression who have tried so much and done so much to hold it back and each time we think we are ahead of it the meso smacks us back to reality - it will never die.

I think we are still in for a rough weather front ahead, the birds around our house are emptying 9 containers of seed every 2 days, not only do the Blue Tit's knock on the window now to remind us to fill them but now so are the rest of the collection. Personally I would be happy if the winds would go so I can join hubby and the dogs over the fields.

That's all from me today, just one quick note, I hope Tom is doing ok at the Bahamas Centre, when I get my memory into gear I will post the website address, but first I want to see if he benefits first.

Good luck to us all with Meso, let this year be the one we all have remission and keep the meso down.

New Thoughts

2012-01-03T09:47:00.000Z

For the first time since I can really remember I really do not want to go back to work. Normally I would be chumping at the bit to get back to work after a week off, even when I was recovering from surgery I just wanted to be out of the house and back at work. Yet the thought of returning to work is not on my Want To Do List.

I have enjoyed been in the house, maybe because it hasn't been an enforced one I don't know, but I wonder whether it would last if I did pack in altogether.

My stomach is still playing up and for the first time in a couple of weeks so is my 3rd Boob, its nipping but I am going to ignore it. I am going to stick with what I have pledged myself, not living from scan to scan, but enjoying the time and try not to worry or jump the gun on any news about them. Although for the past week I haven't had any discomfort to remind me I have meso until this morning.

Hubby and I spent hours yesterday trying to understand Lightroom 3, 2 manuals later and I think I am non the wiser, there again I have never been one that reads the manuals, I usually just load a program and play with it, that's probably why it takes me years to work out the easy routes on things!

Stay at home with us

The wind is blowing so bad outside, even the birds are struggling holding up, we had planned to go shopping today but I am bowing out, not only could I not walk in this but breathing would be difficult. Just have to find something else to do. Although the dogs are sick of photo lens's being in the faces every five minutes!

Today I think I will try out photoshop, I have never used it before so this should be fun, although I can't really take the fine lines out of Lexi's face!

One last day of freedom so I plan on making the most of it.

Happy New Year

2011-12-31T17:29:00.000Z

I hope that the new year brings new hope and new treatments for us, what a wonderful start to the New Year if a Miracle Drug was released and didn't just help 40% of us but 100% without having side effects, surgery or sitting in hospital waiting rooms for ever and a day.

I must admit I have enjoyed not going to work and spending time at home, although most of my time has been trying to get an Ipad 2 to work correctly (I'm sure its faulty), practising with my Camera (the dogs are fed up with a great big lens being shoved in their faces) and of course drinking lots of Tea.

I have heard from a guy in Poland that is looking at a trial in Finland see the link below

http://www.docrates.fi/en/docrates-cancer-treatment/oncolytic-viral-therapy

It is a virus therapy and the above link will take you to the address to enrol. I take my hat off to this gentleman, it's his mam that has the meso and he flew to China to get drugs to help her.

Another meso friend is off to the Bahamas to take her husband for Immune therapy treatment, seems quite a few of you are on the move. I have also heard from someone else who has been stable for 3 years since diagnose and is only now having to look for treatment. This makes me wonder whether we do get on the treadmill too early. The problem with meso is that it doesn't follow those patterns of other cancers and doing right or wrong doesn't come into the equation on when to do treatment or wait.

I have certainly enjoyed spending time with hubby but I have to admit I haven't been across the door step. This morning Lexi licked my face at 6am, she wanted me to come downstairs and feed her biscuits, it didn't occur to her that she had biscuits in her dog bowl!

I nearly put myself through cold turkey with regard to the pregablin, because of the 7 day rule I couldn't order my tabs on line, then I remembered on Thursday ordered them and then I forgot to collect them yesterday. Thankfully the chemist was open this morning otherwise hubby may have had to hide the knives again.

I wish you well for 2012 and say goodbye to 2011.

Dishes All Done

2011-12-27T11:13:00.000Z

Christmas Day 2011, would I have dreamed I would still be here back in 2008. I am still unsure whether the operation was too early and if delayed, would it have brought more time this side or was it too late hence its return. Wish we had a crystal ball sometimes.

Last night I had a strange dream, I was talking to myself in the mirror and I was saying 'it wouldn't have made any difference' so it is obviously on my mind when I don't even think it is!

I hardly ever go back and read what I have written but I was checking out my thoughts in 2008 at Christmas, I wonder if I had started it back in 04 what would I have written then. I believe the blogs have been a way of helping me through these days of happiness and torment. We live 3 monthly always waiting for the next scan date, the next scan results, the next line of treatment. We can never let go of the 3 monthly cycle that we have become apart of.

I seem to live in hindsight and always seem to wish I had done this or that. Since October my stomach has been fine, but 21st December I woke up with that horrible feeling, so once again back on the sulfcrate or whatever its called. I have got use to not waking up with it that I have forgotten how good it feels, until it has come back. Its the same with the meso, you forget how good life is when you are in remission - probably because we are always worrying that in 3 months we will be told its back!

Come what may I aim to enjoy this next year, I have so much I want to accomplish - new designs for a small housing development is the main one (that's if I can sell the ones we have built!), learn how to use my D3s camera and take mountains of photo's of the dogs and whatever else I can catch.

I take my hat off to those on trials at the moment, Tess Gulley seems to be doing ok and maybe this drug just might be the answer to our prayers. In the meantime I was told that it would be unlikely for any hospital to allow a non UK registered Doc to work in any of our hospitals. No wonder we never get far in advancements!

On that note I am off to enjoy my day, lunch out with old friends (in both ways!)

Merry Christmas 2011 - My 8th since diagnosed with Mesothelioma

2011-12-24T19:37:00.000Z

While I visited the blogs this morning, hubby took the dogs over the field and then it was time to start what hubby has looked forward to all month ... baking day.

Our neighbour arrived just before we got started to exchange gifts, then in the mist of making the sweet pastry we had another visitor. Every Christmas Eve Mark arrives with a beautiful bunch of flowers, he has done this since I was diagnosed. As we stood and chatted I mixed one of the pastries and hubby measured out quantities for the inside. I think Mark was amazed as his wife never lets him in the kitchen and to see both of us baking together was quite an eye opener. We baked non stop for 6 hours and looking at what we achieved I wonder where all the time went!

The rich sweet pastry was a nightmare but well worth doing, I can't wait to eat the sweet things but I had to make do with licking the spoons clean and wait until the family arrive tomorrow to get tucked in. Of course the dogs weren't far away hoping for something to fall their way.

Bear, who can't stand the heat refused to leave the kitchen, thankfully he sat on the flooring that hasn't underfloor heating but he was still getting the heat from both ovens going!

Only two last jobs left, one - put the presents under the tree for the dogs and two - remember to put the Turkey in .. hope I remember!

For my 50th hubby bought a bottle of Krug Clas d'Ambonney 1995, we decided tonight we would celebrate all our hard work and open it.

So as I absorb the bubbles I wish you all a MERRY CHRISTMAS and I hope we will all be around next year to celebrate another.

Christmas Spirit

2011-12-22T19:51:00.000Z

The Christmas elves out delivering their gifts

I was just looking at some old photo's to start a new blog for those photos that never get aired and the door bell rang, no wonder Bear was doing a weird bark - seeing these two under the lights at the gate would make any dog wary. They will certainly have helped the shoppers at Tesco's get in the mood as they went shopping like this.

I want to thank Liz at Mesothelioma UK for assistance in tracking down a Doc to give a review of my seeding. I am trying to find a hospital that may be interested in looking at cryo-ablation and allowing Dr Abtin to demonstrate his technique. I strongly believe cryo to be a good way of reducing pain where those nodules stick in your back or rest on a few nerves but also for de-bulking.

The problem with our doc's are that if it doesn't give a cure its not worth looking at, but lets face it, chemo isn't a cure, radiotherapy isn't a cure, yet we go down that route. Surgery is hard but still not a cure, please let us give cryo a chance over here and prove it can add value to our quality of life. To be honest the cryo doesn't make you as tired as radiotherapy, yet radiotherapy will be used in severe cases for palliative care.

Those of us who are still alive after more than 3 years have a hard time trying to get Doctors to look at us as other than lucky. We are stuck between a rock and a hard place. I don't want to jump into any treatments at the moment but I do want the plans in place for when that next move has to be taken.

My wish for Christmas is Hope, Hope for cryoablation to be used on mesothelioma, Hope for a golden bullet to destroy the cancer cells, Hope for a new Chemo that doesn't kill us, but above all

HOPE that all of us get through Christmas and The New Year and still be here Next Christmas

Merry Christmas

One miserable day and then

2011-12-18T19:26:00.000Z

After starting the day in a real downer and being miserable I finally shoved myself in the shower and set about deciding whether I was going to let meso get me down or find some christmas cheer, the latter won. I also noticed that yesterday the hours didn't fly like they usually do and we seemed to accomlish quite a lot.

While Gary went to the butchers and do some errands I took the time to wash down Bear's marks off the walls, run the vac round and dust in those places that don't see the light of day. We decided that we would put up the tree's, I say tree's because we usually do 4! This year we cut it back and only did 3, thankfully only 2 have decorations as such the other is a white fibre optic thing that flashes and just needs some red beads wrapped round.

Of course when Bear came in after demanding to be out in the cold most of the day he went mad, I am sure he remembers Christmas from last year and went in search of the nodding dog. You know the thing, they were big a couple of years ago, well he found it and dragged it into the middle of the living room, gave its ears a good washing out then pawed the front door to be back outside again.

Lexi has managed to clear a good 5inch diameter of hair away from her thigh and it looks tender and sore. Cleaning it causes her pain but what else can I do. I have rubbed E45 into it hoping to ease the itchiness it must be causing. We don't know whether the tablets she is on for her bum are making her skin so sore, but its that maddening circle if she doesn't have the tablets her bum is worse.

Today we went to Pets at Home, talk about Christmas costs for children, the cost for dogs is nearly as bad. We laughed about bringing Bear into the store, his tail with enthusiasm for meeting people would have everything knocked to the floor. There was a little husky pup and it had its tail between its legs and growled quietly at everyone that past it, I stopped and chattered to the owners who said they were trying it out, never heard of that before. I felt like picking him up and bringing him home.

I know that I shouldn't moan in comparison to a lot of meso sufferers I have done well. I read in the BLF about a man who only lived 6 months after diagnosis, it kind of puts things back into perspective but then we shouldn't be in this position to start with.

Don't forget to light the candles on the 28th, follow the link

http://www.asbestosdiseaseawareness.org/archives/3196

For those on chemo I hope and pray that you have some relief from the side effects over Christmas and for those in remission I pray it stays that way and for us who have growth may something be out there.

Christmas Blues caused by mesothelioma

2011-12-17T10:47:00.000Z

Each Christmas this miserable feeling keeps taking over, is this my last one? I know this is not the way to think but this year more than ever I feel at a loss. Xmas 08 I was sure was my last and I was saved by surgery in the January, Christmas 09 I didn't worry, after all I had gone through major chop chop and all the meso was removed. Christmas 10 I started tothink the same, the results had been confirmed that the meso had returned, now Christmas 11 the meso is still growing. Yet last Christmas I was thin and gaunt, this Christmas I am carrying weight and look healthy, yet I feel unwell for want of a better word.

I should be starting this blog on a high note. A few of my meso circle have had good results, all stable and I am so happy for them and I had intended to point out the positive side of how treatments can work and the stats are wrong.

Has my negativity about this disease brought it back? I remember hearing that Alan's and Danny's had turned nasty and then suddenly I was worrying about my own and feeling guilty that I was clear and then before I knew it I had changes. After completing surgery and probably only gaining 18 months of a clear chest the odds in my favour of out witting this aren't great.

I need to shake off this feeling of doom and start getting into the spirit of life, never mind Christmas! Strange as well, knowing Lexi has cancer I am watching her like a hawk, she doesn't look that well in her eyes or is it just the cataracs, she is constantly chewing her thigh as if to get into something and rip it out, which makes her walking painful. I couldn't bear it if Gary lost both Lexi and I the same year it would be heartbreaking.

We are planning on putting up the Christmas tree's today, one week to go and I still haven't sorted many presents out, let alone got Gary a card....What's that internet one called, maybe I will just hook up on that and get one done! I did spend a couple of hours last night creating a photo collage for L & C, pictures of themselves from when we went on holiday. It actually worked and fitted well into the multiple photo frames.

My heart seems a lot heavier at the moment, which doesn't help, and probably made worse by the fact that I know the meso is growing back on the pericardium (or false one in my case). My breathing isn't the problem its this feeling of a large lead ball in the centre of my chest that is causing the discomfort and I have no idea what to do to get rid of it.

I can't believe this was us in 1996, looking forward to such a bright future, I wonder if we had known then what would happen now would we have done things differently. Gary was told he had 1 year to live 11 days before we got married, (it turned out to be a false alarm 2 days later,) and I swore I would make that 1 year the best he ever had.

What I should be doing is making his time with me the best he ever has so instead of being married to a whinge bag he will remember the good times.

Note to self .. get happy

We are lucky

2011-12-13T08:36:00.000Z

I was at work yesterday and released that over the years nothing much has really changed in my life, apart from taking painkillers, having had major surgery and all that comes with meso but there I was still sitting at my desk where I have been for at least the last 24 years.

Its past 12 years since I first collapsed at work where I couldn't get any oxygen and my lung felt totally stuck, but in those 12 years my life in its day to day routine hasn't really altered that much, apart from if I don't feel right or am cold I just don't go to the office.

How could I not be lucky having such a great hubby and when you look at this fellow how can you not smile when he comes bounding over like an exocet missile.

The worry of this cancer and its growth is never far away from us, even if we don't think about it or mention it, someone throughout the day will. My new approach is to have a picture in my mind to make me smile.

Countdown is on for Steve's next X-Ray, I like the rest of your readers are rooting that the results are once again stable so you can relax for Christmas.

To everyone else with meso I hope that your results are stable or at worst be the same as me, slow growing just wish we could starve it!

Have a good day

Christmas Thoughts

2011-12-11T20:18:00.000Z

It's that time of year again when the planning of Christmas is the talk on everyone's lips. Our Christmas list has reduced greatly over the years, with the loss of my parents, the nephews and nieces all grown up (and who prefer to have money). I use to love the days out shopping choosing this and that, these days its flowers delivered to friends and to the last of our elderly Aunts and Uncles. The internet is a saviour for shopping, keeps us from the germs that are flying round but it just isn't the same.

Our Christmas tree will be full, not for us, but for the dogs. Although we haven't even started buying them two anything yet! Hubby reminded me its only 2 weeks to the day yet for the last few years Christmas seems to come and go without the fun or excitement beforehand.

This weekend has been a weekend totally spent together, I missed work out on Saturday and we took the dogs for a wander. Coming home we decided to have a baking day, my gosh the flour was here, there and everywhere. Neither of us really eat a lot of sweet things yet me made chocolate mud pie, maple and pecan tart, flapjack, sweet scones and cheese scones. I felt stuffed before I even tasted the finished goods.

Today was another good day for dog walking, no wind and it was so quiet over the woods every few seconds the dogs kept stopping and going on point as if to expect something to happen. I think they were expecting a deer or fox to pop out.

Lexi seems fine, I guess being a dog she doesn't understand what is wrong or potentially what could be wrong. Often over the few weeks before her operation Lexi was always trying to eat grass yet since she hasn't bothered. This has given us an idea, must dogs eat grass when they aren't well, its instinct to get rid of anything nasty going on inside. Next time she starts eating grass she will have a full body check! We gave them both a blast to clear their dead skin, Lexi loved it but Bear just thought it was a game. The blaster looks like a small jet engine but certainly blows the air out at some rate. The dust held within their fur was amazing, white dust flying everywhere.

My job tonight, to give them both a good brush, just need to hold Bear down so I can get to his under carriage - an impossible job.

Hope your weekend has been as entertaining and normal as ours, the best in life is free, spending time with those who are close to you and those you care about.

Another Cancer Case

2011-12-09T09:15:00.000Z

I can't believe I missed out something so important to me on my last post. Our Lexi's opertion went really well and her lump was removed from just next to her nipple by her hind legs. Even the vet was pleased and thought it was clean.

When we went Monday to have her stitches out, Ian gave us the news that it was cancer of the mammory glands. It had managed to enter the mammory duct. To look at Lexi she doesn't look affected by cancer, mind saying that who ever does?

We have the decision of leaving things as they are, removing all her mammory glands or one at a time if they become lumps. The problem with cancer is that it can spread to other regions before the lumps appear! She is 10 1/2 we already have problems with her bum, her skin is sensitive and now to have to think about putting her through a mammoth op is unbearable.

We have made the decision to leave things as they are at the moment, I know too well the jumping in and ripping out of cancer and other organs. This will be my 3rd dog that has died of cancer, Jagar being the 2nd at only 2 years old, and our Dana at 10. I only hope it is slow growing for Lexi and we have another full year of her running through the fields and lazying around in the house.

Try and be Stable Meso

2011-12-06T09:22:00.000Z

I went to see my oncologist last night, the one who organised my radiotherapy for the 3rd Boob. We discussed me having a NHS team back in place and what everyone's views were. Importantly, he asked what mine were about what is happening or not.

In my own mind I am giving chasing the treatments a break, It has been 3 months since the last treatment and 9 since needles were prodded inside. I left a copy of the scan and asked him to review it, and give his thoughts. Whether he does give them to me is another question and I kind of know the answer because he never does.

I have this terrible habit of going back over everything and wondering did I do that too soon, should I have waited or did I do it too late! I waste my energy on things I can't do anything about. It's like the operation, I was ill at the time, but looking back I wonder if I was as ill as I was .. you know what I mean. Could I have held back but then would I still be here? My oncologist tells me he wouldn't have dreamed going through it before but after knowing me, if he had to make a choice he would seriously consider it.

So at the moment I am just going to enjoy the forthcoming months, keep checking up on what is going on out there, but then I am still worried that I miss out on getting on a trial that would work and miss the boat! I pray this friend of mine stays slow and starved of whatever it needs to grow.

I keep being told I am one of a few to have survived like this, I say I know quite a few, but out of the 20 or so I know, how many others don't we know how haven't made it past 2 years? Not everyone blogs and no specialist will ever tell you.

On that cheery note, better get in the shower and off to earn my keep!

Meso Panic Attack

2011-12-03T11:02:00.000Z

I've had a long week at work, both with the housing and my regular work. Although I seem to meet myself coming backwards these days. Yesterday was no exception but I came home at 4pm to find hubby in the kitchen. I thought it would be great if we messed on a little and did a bit of baking inbetween getting dinner on. We tried those sugar baskets, burnt the first lot! Then we made raspberry souffle's, while our Maltese lasagna cooked.

On celebrating a long week we opened a bottle of bubbly too. Nothing on TV so we watched some taped bits and ended up (believe this or not) till 11.45 watching TV. I was overtired by the time I climbed the stairs to bed and was out like a light.

At 12.15 I woke up too hot, I nipped to the loo and got back into bed, At 12.50 I awoke again from a dream where I was walking and couldn't breath to find I was struggling to breath, from there it went downhill. I tried to get myself settled, everytime I laid down my heart was booming in my rib cage and I could feel anxiety stepping in. Hubby was quietly sleeping at my side.

The wind was howling outside as well and I remembered the night my poor mam sat on the toilet with her prolapsed bowl and then guilt settled in because she didn't ring me and how terrible it must have been for her in the winter months freezing in the bathroom. By 2.30 still awake and I was clammy, either too hot or too cold and still I couldn't settle. Lying down I could hear my heart pounding and couldn't seem to breathe, sitting up I was freezing and tired. I was stressed and ended up talking out loud and hubby woke up. Down stairs he went for bp machine and the trusted temp taker. Temp was at 34.5, back in the fight or flight syndrome, bp was a healthy 127 over 77 and heart beat 77. Downstairs again for a diazapam and an anti sickness tablet. He sat and talked with me until I finally went to sleep while he stayed awake another hour to watch over me.

I finally surfaced at 10am, my body aching from being in bed, my rib cage like a solid tin box but temp back up to 36.3. I am relieved its daylight and hopefully it will be a long time before this event happens again. Maybe I am run down, I have the light sniffles, maybe too much sugar (I ate 2 souffle's!), who knows what brings them on. I only know that I have had 2 in a short period of time.

No fresh air today either, the wind is strong, and although I feel wiped out the need to have had a good walk would have done me the world of good, can only hope the wind settles over the next few hours.

I also want to pass on some good news too, Lyn has had another stable scan result - good news lifts us all.

Lung Damage Explained

2011-11-27T10:58:00.001Z

Can you believe it I finally get to the surgeon and I can't find my lump! the hard core has disappeared again and the soft squashy tissue isn't squashy. I don't know whether its because my Doc is (in my opinion) one that gets your heart rate going or the healing did a damn good job.

The lump does move and after forcing a few coughs it came up and down from the ribs, Aha lung tissue being forced by underlying meso. Can't do it and this is why:

To remove the meso would mean cutting away alot of healthy tissue to ensure it was clean, because of its situation part of my rib and muscle would need to come out too. A lot of pain to follow and another year for the body to adapt. Then, once in how far does the meso go, if the lung needs cutting then serious risks of it not repairing, its close to the air leak and fluid department which makes even more complications. Hence, unless the lump explodes and goes red and sore and weeps it stays where it is.

At least explained in nice normal understandable terms. I do feel helpless and left to ransom with this cancer though. We talked about the other tumours, not so much the tumours but procedures to remove them. Cryo although good at freezing, not proven as a procedure here, like thermal can explode and kill the tumour, but what about the outlying damage around the tumour it causes. Everytime I stick something into the lung it leaves scarring, increases the risk of collapse completely or another lung disease. Radiotherapy needs a decent sized target to ensure it doesn't damage other tissue. The waste of the cells gets washed away in your blood, the hope, although not proven, is that it triggers something in the immune that suddenly sees what a cancer cell is and stops helping them for a while.

I apologise if my doc reads this and I haven't understood it correctly!

The progression at the mo is slow, does that make me feel any better, no as I was looking for something the other morning and I found a report from the radiologist in 07 which said something along the lines of although progression was stable and slow in 06 within the last 3 months the disease has become aggressive.

I know my name has been put forward for any trials that may pop up, but hubby isn't keen on this idea. The meeting was also interesting because I do expect to much from my body. When you have an operation you expect to feel better the next day because you have got rid of the symptoms, although after the problems I have had with surgery over the years I should know better. But cutting into the chest region takes an awful long time to recover (not the few months I pushed myself into), meso causes a lot of pain naturally - for some reason it always finds nerves to sit on and muscles to grow from. The lung is simply covered in nerves and anything that doesn't belong keeps sending alarm bells to the brain which in turn makes it pain. Then there's the additional fighting going on within the body, making us tried, other organs don't get as much protection because our immune system is busy working in our chest, it goes on and on.

Each person I know is looking for something that can help them, and the rest of us. Again with meso what works with one seems to have no effect on another, hence the trials never get the results because overall it isn't a benefit to the masses.

All I can do now is hope that the meso doesn't grow (likely chance of that happening) or when it gets to 2cm I get them blown apart and my body picks up being a garbage man and clears the rest away.

Oh and believe it or not but the scan arrived about 3pm on Friday, just as we got home!

No walking for me and the dogs today either, the wind out there is terrible so guess its a day in the house and the dogs in a sulk with their mother! Enjoy your day

No Hard Scan Copy

2011-11-25T08:59:00.000Z

Today I am off to see the surgeon about my lump, but as usual have been let down my the system as my copy of the scan has not arrived. Strange really as our local hospital does all the scans for James Cook yet they can't access the system to see them on screen. How am I going to try and convince my doc, even though the odds are already against me from the oncologist, that removing this damn thing is better for me than leaving it!

After all this time my operation has settled, could you imagine the way I would be feeling right now if the meso hadn't come back, I would be normal, yeah better than normal, because I would be appreciating what feeling good was about. Instead, I have new pain and twinges!

I am happy to report that Lexi flew through her operation yesterday and although tender when she walks, she is fine. She did sleep most of yesterday on the sofa and didn't want to eat or drink but this morning she was up with the larks and wagging her tail. Lorraine nearly lost her German shepherd on Monday evening due to a womb abscess, thankfully the vets did an emergency operation and saved her life. This week has been spent worrying over both dogs. I don't now how but pets always seem to bounce back that much better than we do.

When we dropped Lexi off at the Vets and came home without her Bear was utterly lost, he searched outside looking for her and then sniffed both hubby and I from top to bottom looking for clues of where she might be. When Lexi returned home instead of Bear doing his bouncing and getting in her face he gently went up to her and gave her one of his sniff kisses, it was lovely to see. I did take the opportunity of Lexi being knocked out to get her nails clipped right back and her teeth cleaned. Terrible aren't I putting her through that as well! I had asked them to push her pile back in but when they checked her bum it was decided to leave it be as the furonculouces isn't doing that well.

I'm wishing myself good luck today, on the other hand it will be nice to catch up with Dr Owens for a chat as he has been a life line of advice over the last few years, and not forgetting he near enough carried out a pluerectomy decortication in 04.

Mesothelioma and sugar craving

2011-11-21T17:06:00.000Z

Today I met a new oncologist and he is quite refreshing, he says he will be my advocater and help guide me to stay alive. Unfortunately for both parties that is not exactly an easy job. All doc's can do is quote proven treatments and for me that is Alimta, which I just can't do. We discussed radiotherapy, cyberknife and ablation. I can understand that statistics can't be proven to show that any of the three can help towards long levity and really can only be done for palliative care, and under the NHS it really has to be proven for palliative care before you can have the treatments.

The quandary of a meso sufferer is how do we prove that such a treatment unproven can become proven if they aren't carried out? You all know that I believe debulking is helping towards keeping the cancer back by having the larger tumours removed by ablation or direct radiotherapy. If the dead cells travel through our blood our immune system can help pick up the code and prevent a little bit of growth for a while, but this isn't totally proven, therefore it isn't used as prevention.

I have been getting tired of late and eating fruit gums and midget gems as if there is no tomorrow, even planets and choc biscuits have been added to my list. Today I read an article given from Lisa which says that cancer thrives on glucose 10 times more than the rest of our cells, could this be what is causing my addiction to sweet things? As for the tiredness that is part of the meso affecting my cells, infact much of what he says I could match outright over the last few years. Weight loss, sweats, cold, tiredness, loss of appetite, food tasting different, to name but a few.

We had a look at the scan on screen and I have some abnormalities in the nodes under my arm, I knew really because my chinaman has returned, although at present he isn't using his blunt axe. The three in my right lung are so small but there is a nice large one waiting for the picking in my left. He also pointed out the nodule that is my 3rd Boob and it does look like its attached to the muscle. I doubt Dr Owens will be wanting to remove it when I see him. I could do with some treatment to it though because it does cause a lot of grief, especially the erupting volcano pains it gives.

On a high note he is quite willing to put me forward for Phase I and Phase II trials and is writing to our local cancer research unit to see if there is anything on going, together with that he will read the ADAMS trial and if he thinks I am suitable will put me forward.

I said the usual, I am not ready to give in and I asked the question we don't want to hear the answer to, how long. It is hard to say how long because the average is 12 months but then none of us have been average have we? He would hope I would still be here this time next year - but there again we all know how fast the growth pattern of this cancer can change.

I wish we could take a razor blade again and just go around my lung and peel off the new growth, it will never happen nor could it. I also learnt something new today, he showed me the patch of air and fluid that remains in my lung area so when I get the scan copy I will put a pic of it up!

Yesterday we found a lump on lexi just under her last nipple so neither of us slept well last night with worry. Thursday can't come soon enough for her operation, I wouldn't care but we check her bum twice daily so I don't know how I missed it! Poor Lexi, she has been biting her fur again too, this time on her thighs - she is back in the wars!

On that cheery note I think I will sign off.

Let's start proving that we do live past 12 months and get those stats lifted!

Jan

The week

2011-11-17T08:21:00.001Z

Thanks to those who have voted for Jeff, I am sure he will appreciate it when I let him know.

I have been in communication with a lovely lady in the States this week who's husband was diagnosed just 2 months ago. They don't want to do the standard chemo route and are looking at alternative ways. She very kindly gave me the address of a trial he is currently on which is still open for enrolment. I know it is in the USA but this is the title

Pilot Study of Bisphosphonate Therapy (Zoledronic Acid) in Patients With Malignant Mesothelioma (UAB 0901)

and here is the link http://clinicaltrials.gov/ct2/show/NCT01204203

I actually contacted the co-coordinator and have been invited to enter if I clear all the tests. If it wasn't for flying I would certainly give it a go. I did surf the net and tried to see if someone in the UK was running it but no luck so far.

There seems to be a lot more trials now in the USA than ever before and I wonder if this is something to do with the Twin Towers?

I myself am not so great, I don't know whether its the cold weather, the flu jab, both or the meso or maybe not the meso but because I got the scan imagining its the meso. My back feels like the little pea is sticking further in and my chest itself feels heavier. I have noticed I seem to have a little more pain when I have done the stairs and need to take a moment before jumping in the shower after the climb on a morning.

I am hoping to see Dr Owens through the NHS shortly to see about the last scan and My 3rd Boob. I don't know what he will make of it and depending on the time of the day and what I have been upto whether the thing will be big or small on the outside of the ribs. I don't think he will remove it but there is no harm in trying.

Having caught up on other meso blogs as I was saddened to hear that Anita had died, it seems at the moment that quite a few of us 'old timers' are having a hard time of it at the moment, and I say 'old' being the length of time we have had this cancer active within our bodies.

I think that shortly I will have to make a decision on what I am going to do, I hope that maybe I can get on the ADAMS trial in London if they accept me or if nothing else is available, but it does worry me having the placebo because that could have been time wasted not having treatment to hold back the cancer. It is such a crux in the mind. I am totally back to living in the 3 month cycle, if it grows more than 5mm next time then thats over 3 cm in places and I don't have 3cm worth of lung. You know how your mind works!

Last week I deleted a whole load of code from one of my databases by accident - nearly 2 weeks of writing gone (which was done 4 years ago) - but for some strange reason yesterday I remembered my network home directory is now backed up and this was stored on it! See stupid mistakes and forgetfulness will not do - hubby is telling me that I am run down and need a rest, and I keep responding that its not even cold yet so how will I survive when winter sets in, will my one brain cell completely freeze up. Stranger still is the worry over the last couple of days that my bones are aching because of the meso not because I could be coming down with a cold. See my imagination is running wild! My blood pressure is on the low side too so that's why I am having dizziness when I bend down .. I am totally dropping to pieces.

Had better attempt those stairs and get in the shower, time will wait for no man and I have a busy schedule today, lets hope the brain cell can deal with it!

A Big Favour from Face Book Users

2011-11-15T08:16:00.000Z

You know we have some great friends in Dubai and Jeff is a great photographer friend of ours, I'm sure that's how Gary started into his hobby. Anyway in Dubai Sony have released a competition and Jeff has been invited to participate.

This is his request on his blog page:

"once more, please help me win by giving me a pixel. to vote, you need to have a facebook account and this can only be accessed through a desktop/laptop computers. next is just follow these few simple steps:

1. access the SONY DI CHALLENGE app on facebook
2. if you’re visiting the app for the first time, click “LIKE” to allow access.
3. next is click through “VOTE FOR YOUR FAVORITE”, then “CHALLENGE 2″ tab on the right
4. finally, under the “PROFFESIONALS” section, just “GIVE A PIXEL” in order for your vote to be counted
5. if you haven’t voted for the first challenge, now would be a great time to vote my other entry."

To see his work, if photography interests you then visit his own blog site http://www.dubaichronicles.com/

As you all know I don't have a face book account, neither does my hubby so I am begging, neigh pleading with you all to have a look and if you like his work, as he asks, give him a pixel.

Thanking you all in advance of viewing these photo's.

MARS Trial

2011-11-09T09:01:00.000Z

By all accounts the MARS trial showed that surgery wasn't a winner. I'm not surprised really, in all trials due to the way the patient is selected, not many become a success. Why can't trials be done or handled in a different way. I was reading the outcome in Mesothelioma UK, many might not have recovered enough from chemo to want to undergo surgery, infact it said that a third of the group selected for surgery didn't go ahead. So that surely affects the figures.

What we need is a full database where patients (if they wish to) and specialists fill out info for all to see, this would be a much better gauge as to how long and what difficulties patients had. The usual trial way doesn't work and I don't believe ever really will. We still need new releases but give options to the parties not random selection. If someone has no chance of remission and offers them self as a placebo they can't but could end up taking the drug and someone that has every chance could end up on the list that doesn't receive.

If surgery is withdrawn what happens to patients like me that had no where else to go, yes my pain went up but I am still here to moan about it and lets face it we have to have something in life to moan about! I know several who have had surgery and had no pain and are still here too.

Why put someone through a gruelling chemo before surgery? if you are going to chop it out do that first, then maybe just follow up with tomotherapy. Keeping the chemo on the back burners. I don't know whether this would work better or not, but this is the stuff that doesn't happen in trials but in life in general. If it was recorded country or worldwide. We need something that states the growth of the tumours at the time of treatments, how many people have had almita and survived a good 2 years before remission was over, many have had surgery and lived a cancer free life for more than 2 years, how many choose not to have anything etc. If a database was set up correctly it could be queried in such a way that you could find out the remission periods over counts much easier. I know I am rambling but trials annoy the every essence of my soul.

As for my own situation I am no wiser reading the report, there again it isn't written for joe bloggs is it, its to be deciphered by the specialists as that's why they went to college for. The gist is that it is growing. One thing I did notice is some are growing faster than others. I am currently investigating the worth of getting 'My 3rd Boob' cut out. Hopefully, a referral will go this week to one of the best surgeons I know. I am hoping that it can be removed without too much trouble. Less cancer = longer life is my belief. As for the right lung, once I receive a copy of this scan and it doesn't take 3 months to arrive I will send it off to London and see what they make of it.

The problem with protocol is it stops people trying new things, there are rules and regulations. It amazes me how we have managed to progress through medicine when so many boxes have to be crossed. Why can't seeding be removed as the norm if the person is healthy enough for it. The lumps get bigger, and I believe its because new cells grow but old cells don't die. Therefore, its only tissue at the end of the day not some organ that we need to live with. Whether this is the case with meso I am unsure, but again it must do something strange with our old cells.

I heard from Cher yesterday and was sorry to hear that she had such a terrible time after her first dose of chemo. To spend the entire 21 days in pain and being unable to eat or drink is no fun and I am sure all our thoughts will be with her over the next 4 months.

I have also been asked if there is a Meso Warrior group in Spain, if you know of anyone out there can you please let me know so I can pass on the information.

Enough for now, work is calling not that I fancy going out into such a dark and dank day.

Bonfire - instead of guy fawkes it would be nice to burn the mesothelomia

2011-11-06T19:50:00.000Z

Although I had my scan on Tuesday in the back of my mind I knew the results would be in by Friday, so I ignored the fact. I knew when the phone rang about 6.15 on Friday it was my GP. The scan is in, things aren't great, apply for a copy straight away. He will print out a copy of the Radiologist's report and leave it for me to collect. Would we like to talk about it, is there anything I can do? You all know how the conversations go, although most have a team in place to help them through these times, once again its just hubby, GP's and me.

I wasn't shocked to hear that the radiotherapy has done nothing to stop the mass that is growing outwardly, indeed I joked the other day about having to buy a bra filler for the right to even me up. I wonder if the mass is more like those solid fibrous type than the baked beans type I had removed along with the rest of my chest. Strange though, because I feel really good and I do mean good. My pain down my left side seems to have settled into mild discomfort, my tin box inside my left side is only annoying when I get up, the only thing that has been painful or maybe more annoying is my new mass, I may need to think of a name for this one - following in Debbie's shoes here - but to me its not really my meso as my meso is inside my chest not outside! I suppose 'My 3rd Boob' would be appropriate considering where it is residing. As for the rest it sounds like the invasion in my right side is continuing and the left is growing, I don't know whether its in numbers or just size. Some thickening continuing around the pericardium (false one in my case). He did tell me that some are showing slow progress, well that's a relief!

Even harder for me to understand is how the radiologist knows that 'My 3rd Boob' hasn't responded considering I didn't have a scan before radiotherapy and he had done my last scan in July - only a few weeks before this appeared. Had it shown up on the Scan and he didn't report on it? Has my 4cm square become 5. I know its heavy as my boob has a new substance about it and I do wish it was me putting on weight.

Typical, I finally come through the pain of the surgery and get lumbered with something else. This meso is becoming more strategic than I anticipated.

Even with such news we had a wonderful weekend again and nothing was going to spoil it.

I had forgotten it was bonfire night and hubby decided we would have our own big family party, Bear, Lexi and us. He prepared our bonfire in our burning bin, planted fireworks in various spots around the garden, we made curried parsnip soup, followed by hot dogs and BBQ spare ribs. Bear wasn't bothered about the few bangs from the fire works but spent most of the time running round the kitchen at times looking for the lights that had shot up from the ground. The noise doesn't affect either of the dogs, which I must say I am so pleased about. It was also the first time it didn't rain on bonfire night for many a year.

Today we went to Seal Sands and watched the local inhabitants battle it out for the love of a woman

These two males were fighting for the affections of the female in the background. She preferred the one at the front and kept nudging his wounds every time the other one hurt him. I think we spent about 30 minutes watching and snapping photos. Hubby has become a really keen photographer and is trying to teach me .. Good luck with that.

To you all, keep living life - no matter how hard it gets remember something to make you smile.

Trick or Treat

2011-11-01T19:15:00.000Z

Living out of a town in a small hamlet we miss out on the trick or treat which took over from "penny for Halloween" in my youth. Every year we have always made our pumpkins and for once herewith is our effort to ward off the dark spirits that roam on the 31st of October.

Spooky

After the hard work of carving out the features on the pumpkins some of us needed a little nap and how could I not go and be cuddled by such a wonderful Bear.

I hope everyone had an enjoyable time and the families that went trick or treating collected plenty of sweets.

Just five more minutes

Back in the real world today was my scan and seems its a week of appointments as tomorrow its the flu jab and the dentist. I suppose its better getting them all over and done with at once. I would like to get my teeth veneered, considering at times I think I don't have that much longer left it is a waste of money but then why shouldn't we look our best, if you look ok sometimes it makes you feel alot better. Would be different to go through pain for vanity rather than for cancer.

Time to go and dig out my chores for this evening, I need to do some work on the new housing site at Howden. When we went to site yesterday I think the ensuite in the spare bedroom is too big taking space from the bedroom so I need to see if I can adjust it somehow. One thing for sure is that each of the houses at Howden will certainly be different inside.

Looking on the bright side in 4 months we will be looking forward to the arrival of spring, I know I shouldn't wish time away because it is here before we know it, but already the dark nights are soul destroying.

Life between Mesothelioma (filing away the memories)

2011-10-30T09:59:00.000Z

I spent most of yesterday transferring photos from the hard drive of the computer to a separate hard drive. As hubby is determined to get me into photography I thought I had better tidy up the computer. Our digital photo's start at Xmas 04 and it was strange going back over the dates. Here we went to Dubai after Radiotherapy, then in the middle of Chemo, here was the safari, then the cruise etc.

It has made me wonder, for the thousandth time if I did make the most of my cancer free days. Looking at the photo's I did more in 05 than I have done from the Op in 09 to today. I know that I have, even if I haven't holidayed all over the world, but I think I spend to much time worrying over things than living them. Even my aromatherapist said I seemed more at home with myself recently, her meaning since the meso has returned as I'm not on edge all the time wondering what the next scan will say. Even though now it is the worry of how much the mesothelioma has grown I wonder if she has a point.

I have so much still to do with my life, yet I keep procrastinating because somewhere in my brain I think I will reach old age!

I am wondering what will happen to my growth and re-read Ronnie's posts when she had hers on her back, problem was I couldn't find the post that said how it went after the radiotherapy. If someone out there knows could they let me know. I said to hubby the other night, if it keeps growing at least it might just grow into my boob, although I will be lopsided!

This time of year the birdfeeders are full and my windowsill in the office has its plate of birdseed. I love watching the greenfinch, blue tits and robins come to the window. Especially when they tap the window because the plate is empty. I wonder how many years left I will have the privilege of watching this.

Funny but I do feel comfortable with myself, I am more like my old self and think that maybe lifting the pregab to its proper dose of 2 has put back the balance of signals in my brain cell.

Bear stealing our cuppa

I am going to have to watch Bear's chin again, last night he put his head in my hands and rubbed his chin. On inspection I didn't find anything but I don't want him having those hot spots again. Although I have clipped a mass of hair just above his tail because he had dry spots and I want to get air to the skin. Now he looks deformed!

But he does love a cup of tea if he gets a chance so should you ever visit, never put your mug down otherwise his nose is in it.

Sitting here isn't getting the most out of today, still have to do more at mam's and finish our task of yesterday. For years I have been saying I am going to make DVD's of our time together, pulling info off old camcorder tapes and rescan old photo's etc, but I never seem to find that time because it is a dedicated project and I doubt I will ever complete it. Life is just too short, not just for us with meso but for everyone.

Wisdom for today meso warriors, enjoy the moment!
Jan

Hope its not in the Pericardium

2011-10-28T09:03:00.001+01:00

I was thinking about Debbie undergoing her gall bladder operation and it brought back terrible memories of the pain I went through from 06 to 09.

I remember what I called a near heart attack session every 10 to 12 weeks. I had asked if it was the cancer in my heart and my oncologist said no and it was unheard of, the new chest man I was seeing said my heart was sound so my GP thought it wise to see if it was gall stones.

I did have gallstones so in the hope it would be one less pain to have organise around I had the gall bladder removed. As we drove up to the hospital I wanted to turn around and go home. Also I had arranged to do an interview for Action Day 3 days after surgery - which I still did only I was drugged up with so many painkillers and a friend came and did my makeup so I didn't look ill.

While I was in recovery I went into a session, the pain in my heart area was terrible and for the rest of the night in hospital I was in pain. It also didn't help that they had nicked a vein so I had internal bleeding too.

The 10 - 12 week sessions continued until the operation where the culprit had been the meso living around my heart. (It had attached to the heart sac - the pericardium) I guess the sessions were caused by growth, and I honestly think in my case the meso had a growth pattern, hence every 10 to 12 weeks. Through the entire experience pre-diagnosis I had sessions, usually every 12 weeks.

I said to my Doc "that was a waste of time" but he assured me that had the stones started causing problems I was better off loosing the gallbladder while I was reasonably healthy.

I hope and pray that it is the stones causing Debbie's problems.

Remember mesothelioma isn't the same in everyone I am A-Typical which means non of my illness has not gone the way the text books explain - but when patterns form I believe we should always take notice.

Debbie probably will not know whether its the stones or the meso until she has gone through 4 months of no pain and I for one will keep my fingers crossed for her.

Yesterday I kept my appointment and had my mammogram, I did manage to have my left breast squashed in the vice, painful, but I thought it could be helpful to see how far (if they report back on it) the meso has travelled and if it is affecting anything in there. I am having a lot of pain both where the extended mass has grown and where it travels down. The lump thankfully just missed the vice as it is flatish against the ribs - very thoughtful of meso wasn't it!

On that note I had better get moving, I have a busy day ahead with site visits and then hopefully catch up on some office work.

Quickly adding having raised the pregab to 2 I am starting to feel more human, long may that continue.

Meso Scan on the horizon

2011-10-23T19:49:00.000+01:00

We are all coming up to the time of scans again, the 3 or 4 months fly past. I still can't believe some still only get an x ray every 3 months, which we all know doesn't actually show much, especially with meso.

Hubby sat me down on Saturday and discussed how I am doing on the pregabin, not good in his eyes, and to be honest not good in my own mind. Nevertheless I have increased the dose to 2 to see if it helps, then maybe think about dropping them and going back to increasing my daily pain. We don't seem to have much choice pain or tablets!

My breast screening is on Thursday, that is surely going to be fun and I do hope that they excuse my left side completely, although if they do just an ultra sound of it maybe the tumour might show up.

This time 3 years ago no one thought I had much time left, it still amazes me that I am still here even though I started out with mixed Epithelioid and Sarcomatoid cells, thankfully I believe only the Epithelioid ones have remained, the slow growing variety instead of the intense aggressive ones. Yet meso can change so fast from being dormant or slow to all out war, regardless of strain.

Hubby got into photography a couple of years ago and has asked for a new camera for Christmas, his aim is to get me to use his old one so we can share a hobby together. He is into taking photos of birds whereas my choice would be animals or scenery, maybe if I get ok at it then I might sweetheart him to go back on a safari one day.

I went back down mam's this weekend and we spent a couple of hours going through her things, each time I picked something up I could smell her aroma and I am finding it emotionally hard to pack her clothes up for charity. Each time I walk in I expect her to be sat there and I doubt that will ever go. I said to hubby "Maybe when we get old we should down size" the hurt that shot across his eyes was painful. I wish I could think sometimes before I speak.

I still have slight backache and it occurred to us both today that maybe the flight helped increase the fluid in my lung, if that is what it is. Now that some of the meso is visible and I can actually touch it, it puts the cancer in a different light. I find because it aches and has fire sparks I keep touching it and am sure it is growing, I should draw a line around it so I can keep track but then if it grew out of the line I would be gutted.

On such a terrible thought I will sign off for today. Keep your chins up everyone, we will keep fighting back and somewhere out there a cure will come through.

Jan

Hopefully a higher place

2011-10-21T10:25:00.000+01:00

I was saddened to hear that Ronny had lost her fight with meso, another warrior who kept a blog of her fight with meso. It came as a shock as I had just visited her blog to see how the chemo was going and then Lyn my meso mate send me a txt telling me the bad news. I wish there were words we could say that made everything alright but there isn't and all I can do is send her family my respect and condolences.

We are fighting this cancer with everything we have got and yes we can starve off the disease for a while, each person I know has hit this cancer with everything in their reach, putting themselves through pain, illness and what do we get at the end of the treatments, maybe years or maybe just a few short months. I know that I am not ready to go, and I know that everyone else I know feels the same.

I know that I have been unlucky where major pain has besieged most of my time with meso and there are days when I do feel enough is enough, but that lasts at the most just that day. I get scared of what is to come, if there is nothing else I can do, if I had the operation too early and maybe I could have waited longer which would then have given me more time this side of the operation before the bloody cancer started growing back. We are unfortunate not to have foresight and hindsight is of no use to us because we just can't alter our decisions once they have been executed.

On Wednesday I knew I was out of sorts, whether it was just me or the meso at that time I didn't know and I was scared. Having no MDT on my side, an oncologist who is private and mostly not available and a GP that you just can't call on isn't much help. My temp did what it use to do and dropped to 35, meso is on the war path and my body went into overdrive to fight it off, causing adrenalin to rush through my veins, my stomach and I was in a state. I finally managed to get in to see a doc at 6pm and was prescribed antibiotics but all I wanted him to do was knock me out so I didn't feel this rush that was taking over my body and mind. I remember years ago I was told that our bodies don't drop that low, well believe me they do. Has anyone else out there gone through this? Hubby has banned me from going to work so here I am at home, I can't be bothered to do anything but at the same time I'm bored because I want to do something.

I keep telling myself I am going to do a photo album for hubby from the time we met and yes today would be an ideal time to start it but once I start doing that then I will be awash with grief because it will remind me that I won't be here to see my twilight years with him.

I'm not sure whether my emotions are running high due to the possible infection, the pregabin or just life itself, or is it the fact that another person has lost the battle and nearly everyone in the meso circle has new growth.

I hate loosing a day to nothingness but I fear that that is what today will be, which adds nothing to our lives especially as our days are numbered.

I hope there is a higher life and Ronny is now whole, cleansed of meso and watching over her family.

Jan

No Pain in Warmth

2011-10-15T11:24:00.001+01:00

Back 3 days and already the aches begin, is it the warmth on the bones or the fact that I don't do anything on holiday that affects it. I still felt stomach yak (But again not so bad, even though we didn't eat till 8.30 each night).

It was good to be in the heat, although I know I jinxed the weather again as 2 1/2 days in the clouds came and we had storms. The temperature was still in the early 20's though so walking around was ok. It is pretty flat around all the popular resort areas so for breathing and walking Kos is ideal.

Why I have been away an appointment has come for my next CT Scan, 1st November, and a Breast Cancer screening appointment. That is going to be fun due to the lump I have - I am wondering whether they will just do my right and forget about the left!

I should count my lucky stars that I am still here and able to do the things I pretty much want to and after catching up on my fellow meso's blogs it made that point much more poignant. Hubby has been planning hols for next year while I have been away and I hope to God I will still be here to enjoy them. In all the years since this started we have never booked anything more than 10 weeks ahead expect once and we had to cancel, but I am going to stay positive.

For saying the weather was cloudy we still got a reasonable colour between the three of us. We booked the holiday so we could get some girlie time together, we have known each other over 30 years and these days we don't seem to get that girlie time anymore. Infact since July 10 we haven't spent that much time together at all.

Cancer does change you, your outlook changes, what you want from life is higher because you prioritise things differently and of course, you aren't as fit as everyone else.

I guess back to the grindstone full on next week and all this positive energy will be gone and my pains will be ruling my life again. I am still toying with the idea of leaving work but then what would I do with myself all day and even more importantly how would we fund medical costs if I need to go down the thermal ablation route or whatever other treatment that comes up that costs money?

While I was away hubby had the bedroom decorated and most of the carpets cleaned - it was an ideal opportunity so I didn't breathe in fumes or have to freeze to death with the doors wide open. I am sure the carpets won't stay clean long with Bear and Lexi, but the house certainly smelt a lot fresher.

To be honest I would love to go on holiday again just after Christmas, I so need that sun, wonder who I could rope in to dog sit, but I hate the travelling side of things. Waiting around at airports and sitting on planes isn't my idea of fun anymore. At least when we came home from Kos we were in the fresh air until 30 minutes before the plane took off.

Back to planet earth and the reality of living with meso ....

Jan

Conference Day - USA

2011-10-14T08:54:00.000+01:00

I missed our patient\carers day in London due to hols and preparation time but have just received an email where we can watch the USA one on line today.

If you are interested click on the link below:

http://www.asbestos.com/news/2011/10/13/watch-the-3rd-focus-on-mesothelioma-conference-from-home-this-friday/

Will catch up later with news and gossip but I just want to quickly say to Amanda that I am so pleased all went well recently. Although it could have been better, that section on the bottom of our lung is such a damn nuisance isn't it!!! As for the Gabapenten and its son of, Pregab I still haven't lifted the tablets to more than 1, I think hubby now feels safe enough to display the knives again on the kitchen top I am still mood swinging. As for pain I still have some stabbing pains in my arm, but less where my new lump is - but it could be from the radiation rather than change in tablets. I need to lift to 2 but haven't had the guts yet. Overall I think I am coping better on the pregab though - if that's any help. Any tablet that plays with your head causes some other problems, especially when they weren't originally designed as pain killers.

For those who are totally lost off visit Amanda's blog on

http://ajandray.wordpress.com/

Amanda could you email me directly if possible?

Catch up later, felt so much better in the sun, been back 2 days and already feeling achy.

Jan

Summers here!

2011-10-02T10:33:00.000+01:00

What a week, the warmth has really cheered me up and I do feel better for it. Yesterday was carer's day but with so much going on I knew I won't have the energy left to get to it and be ready for hols on Tuesday, that is one of the things that annoys me now, not being able to run from one thing to another without thinking about it. I hope it was a good and informative day for those who attended.

I also received my scan on Thursday, the password came Friday so last night I had a quick look. I look so deformed, my heart is somewhere over my left, my right lung being so big. I can see the singular lumps but not sure what is thickening and what isn't.

Could that top arrow point to the mass now outside my body (I did the arrows but they didn't come out right) or is it that lighter grey underneath and my three arrows below point to small raised lumps.

This lump has really grown, but overall I don't think to my inexperienced eye that the meso is that bad, sure there are several lumps like this one around parts of the lung but I have decided to remain cool about it all.

I know these comments will change next week but at the moment I have decided as long as it remains slow growing I can get on with life.

The only really problem I am having with the meso is the mass just above my breast and my breast itself. I so want the radiation to still be working and killing it off but I doesn't feel any better - unless that has something to do with the seatbelt giving it a thud! Hubby thinks I should see about getting it cut out to help ease the pain -something to ask about again but how many operations can a body endure!

Although after the last knock on my already ugly looking nose I am seriously considering a nose job, my luck would be that it would be broke within a few months of having it fixed! Wouldn't mind my eye lines being removed, a new pair of boobs, a face lift .... the list goes on!

Wednesday is fast approaching and after sitting out in the sun for a full day yesterday I am so looking forward to the 6 lazy days ahead, no work just pure rest.

I went to see the stomach specialist, he told me I was on the best medicine for my stomach and that it was best to leave things as they are unless I get worse. He doesn't know why I have excessive acid and he didn't want to start running scans etc.

My moods are all over again (so my husband tells me), maybe I should increase the pregabin back up to the same dosage as the gabapentin but then if I ever get to come off it, its a long journey back down. Decisions we have to make - why can't they be simple ones like what should I buy the black or the brown shoes!

On that note I had better get moving, as its raining I thought I should try and go and sort some of mam's stuff out, still haven't done anything, its like she is just away for a couple of weeks - ok its been months, but we have decided to rent her house out and I really must pack her things away, so I guess today will not be an easy day emotionally.

Keep stable everyone, don't let the meso grind us down.

Meso Pills take away the fun

2011-09-28T08:12:00.000+01:00

It was truly great to feel the sun on my bones although like normal I jinxed the weather and we had a thunderstorm on Saturday. Why is it that our lives are so different now to before. I had a couple of drinks on Friday afternoon while travelling to have the worst headache on Friday night. I left hubby and friends in the bar enjoying the warmth of the evening air and went to bed. The only thing I can complain about the hotel was the hard pillows and beds. My back ached the next morning and so did everyone else's.

My stomach wasn't that great either on the first morning away and the panic of am I doing the right thing booking a week away with the girls jumped into my mind but on Sunday I felt a lot better and thought Jan get on with it. Live girl otherwise what's the point. At least if you have rotten guts in Greece you have the warmth and the sunshine!

I looked at every picture I could of the hotel outside - each sunbed looked covered in a 2inch mattress instead of just plastic, by the pool they had soft ones but on the Sunday by the sea front we had to request a mattresses from the pool area. (No sun on the pool area until 2pm) We were granted to have one after tracking down the Assistant manager but then I started other guests requesting them, so if I go next year I doubt they will comply. Why can't we have comfort on sunbeds? Although I guess many people don't have skinny bones that are misshapen and hurt to lie on!

On the way home I managed to whack my tender meso tumour with the seat belt buckle and it brought tears to my eyes (I don't wear seatbelts in cars) and for hours the thing ached. When we got home Bear was so excited he knocked me flying and nearly broke my nose, sending blood spurting all over the place! Was it worth it, yes just for 2 days of lying in sunshine I did feel better. Food wasn't too much of a problem as I eat very little but the choice is much easier in Spain than Dubai, did I drink - no after having such a rotten headache on Friday I sipped one drink for hours on an evening.

Hubby thinks I have changed and wants the olde me back, what can I say, I can't come off the minding\mood changing tablets without cold turkey and that my friend will not happen again, but these same tablets also don't agree with alcohol for me so Tea Total looks like the only way forward unless I want the worst headaches - I have had 2 of them now and both after having just a couple of drinks.

Whoever said life was easy was a total liar, honestly some people don't know they are born when they roll out of bed and feel normal, I truly wish I was one of them, I can taste the envy in my mouth!

6 days and I do it all again with the girls, although I don't fancy the longer flight to Greece, but then we are staying for 7 nights and not 3.

On another bad note, my CT scan still hasn't arrived, it will be so out of date by the time I receive it, if ever.

Keep up the good fight, wherever possible, and yes I am luckier than some at the moment as I'm not having to deal with chemo and for that I should be and I truly am grateful.

Holidays are coming

2011-09-22T08:26:00.000+01:00

I have been trying to find as much info out on Excessive Bile as possible and believe it or not but there isn't really that much out there. Lots on acid reflux but not alot for my newly diagnosed condition. I think the chemo set it off and the removal of my gall bladder finished if off for me. Whether I will be allowed chemo in the future will depend on what the stomach specialist says next Thursday but I know for certain I couldn't go through the last chemo scenario again with my insides opening up like a ripe tomato, yet I am worrying before I need to because chemo isn't on the table at the moment.

My lump is still a lump - did I expect it to go down - yes! Although the burns have returned they are slight in comparison of prior to the radiotherapy so at least I am having some reprieve from burning pain, although my left boob is back feeling un-normal (for want of a better word). I haven't heard from my oncologist or the specialist that carried out my radiotherapy and believe it or not but I still haven't received a copy of the scan from July.

Our Nev was told he is on a 2 year waiting list for a lung biopsy can you believe that, I'm not sure whether the doctors around here just have it in for our family! He has been told he has plaques from asbestos but how do they know they are plaques?

Good to know that Steve's results were good last week, always a pick me up when we hear good fortune for others, just a shame they have to have meso to start with!

I received an email back from Dr Gilliams, the cost of thermal is approx £13,000 plus £150 for reading the scans. Inflation has risen quite a bit in 4 years as I am sure it was £10,000 in 08 and no charge for reading scans. I may as well wait until after the next scan to think about it otherwise it will cost me another £150 to see whether its worth waiting till after Christmas or doing beforehand. I know I keep saying I am going to hold off treatment and take a relax but then I am always afraid I leave it all too late. If I hadn't had cryo in March I would hate to think how large those 4 tumours would have grown to.

I am so looking forward to tomorrow, it will be our first holiday this year, ok its a long weekend, but to feel sun on my bones will be wonderful. Have a lot to do today as well as throw our stuff in a suitcase tonight, thankfully the girls are coming over to dogsit so no worries there.

Seems the sun has even come out up North, even though it still manages to rain at least once a day we have had blue sky's for the last week .. first ones since summer started!

I hope you all have a good weekend, don't let the meso ground you down and if it does write it down - get it out of your system.

Friday High's

2011-09-16T20:58:00.000+01:00

I can't believe it but for the first time in months I overslept. We had company arriving today but at 8.30 my stomach felt lousy and I didn't want to get up, I turned over and went back to sleep. I only hope this doesn't happen next weekend otherwise we'll miss the plane! Hubby got me up and after a coffee that sat heavily I started feeling somewhat human. I know why my stomach was off, we had chips both Wednesday and Thursday night so my own fault.

Mirela and her sister came up for a quick visit, we weren't sure who she was visiting as the majority of the time Alex and Mirela were with Bear on the floor. He posed all day for photo's and certainly enjoyed all the fuss, leaving Lexi a little jealous.

It has been some 2 years since we have seen Mirela and to see her in the UK was wonderful. It will be a long time before she visits again so I hope she enjoyed seeing the North East for a few hours.

My lump isn't improving, the fire flame pains have returned for sure. I remember meeting a guy at a carers day who had had mistletoe injected directly into his meso lumps and they disappeared - if anyone out there knows how this is done by whom please let me know. I haven't been a full on advocate of mistletoe but in this case I think it is worth a shot.

I have also emailed Dr Gilliams to get some further information on the thermal ablation, I can feel 2 little peas in my back on the right side when I lie down, and a couple in my left. I am still wondering what happens to this lump - now the radiotherapy has been over 1 week will it shrink and go down or stay the same size as it is now? Usually my radiotherapy has only been on drain sites for prevention and usually hits my bones.

For the first time in weeks I am pouring myself a B & C so time for a drink and hopefully my excessive bile will give me a break for a day.

Jan

Picked myself up

2011-09-12T08:33:00.000+01:00

I managed to pick myself up on Saturday, whether it was will power or not I don't know but after I had a shower I put one of those pain patches on my left bottom ribs and that seemed to remove the feeling of being stuck.

Sunday was a much better day, even managed to walk the dogs in the wind, although it did take my breath away a couple of times. Although walking the dogs wasn't that difficult as Bear didn't want to wander far from Lexi and she didn't want to wander far from us. Poor Bear is so frustrated, he hasn't a clue really what to do just knows that his body has to do something.

I had quite a disturbed night with him, he was barking on and off all night crying for her to come to him and scratching at doors. At one point when I came down the stairs to him I slipped and fell back over, giving my head a whack on the stairs.

Since Wednesday the meso lump felt like it was really improving but last night I noticed I had quite a few fire flare pains and the lump seemed to weigh heavy on my chest. I do hope the treatment has worked. Over the weekend I spoke to Chris Scott who was diagnosed the same time as me, he is half way through his 3rd round of Alimta. The nausea seems worse this time was his only complaint, not sure whether there is more to that but Chris always seemed to tolerate the treatment well.

Alimta seems to do the job with his meso, he was telling me he had growth of some 7mm and that they decided to start the chemo straight away. Fingers crossed it carries on doing its job for him.

Better try and get a work head on this morning, not that I feel like going in at all. Think I might take Bear in with me and give both dogs a break, Lexi from having her ears washed out and Bear from panting constantly.

live for the moment as they say .....

Nothing Day looming

2011-09-10T10:01:00.000+01:00

After suffering the nightmare pains the other night I didn't take my pregabalin (only on 1 a day) and then last night I forgot again. From such a careful routine to out of the window isn't normal for me. This morning I woke up with that terrible anxiety feeling. I know why - I am going on a cold turkey route so I have taken the pregabalin, if I am to come off them then I guess its one every other day - so I am a dumbie for forgetting last nights. Should I come off them I don't really know, did they do any good I can't really say.

Having visited a few of the meso warriers sites this morning I feel happier knowing that everyone is on an up beat, its only me that's ever miserable!!!

Bear is chasing Lexi everywhere she goes and she is flirting outragiously with him, moving her tail and letting him lick her ears .. this started at about 4 am this morning so I guess it will be dog patrol for the next 5 days. The minute she snaps at him the time is over, so unfair on Bear but Lexi is far to old to have an operations and I doubt Bear would forgive me if his bits were cut, good grief it took him months after his bits were shaved for him to come near me.

The sky is so grey and reflecting my mood perfectly, I haven't even had a shower yet and its nearly 10, just can't seem to get motivated. I got up, went back to bed then got back up this morning all by 9 am. Maybe pushing myself will do some good.

On a bright note one of our friends from Dubai is visiting next weekend, her sister is starting Manchester Uni so we shall have a house full. At least when you are around people you always make the effort and no one ever really see's how bad you feel. All I can say is I am really pleased it isn't today because I don't think I could find that false wellness.

Neville came through his operation ok on Thursday and nothing sinnister was discovered so I am pleased, just wish he would find out what was happening with his lungs. MS is a terrible disease causing so many off shoots of problems.

I should move from this spot and try and force a something day, but alas I really do feel like I am in a nothing day and all I want to do is curl up, if my side didn't ache at the bottom of my ribs I would certainly be curled up on the sofa but the need to stretch it out is winning. Think I'll find one of those magic pain patches and shove it on.

Lets hope Sunday lifts the weather and my mood!

Unsettling feeling

2011-09-09T14:14:00.000+01:00

After having my 4 treatments without any tingling on my bones or redness to my skin I was relieved, tired but happy. I thought there you are see how you like being blasted a scene from Dirty Harry came to my mind as I sat in the car coming home.

Then suddenly as I sat watching something on TV I started with a pain between my heart and right breast, by the time I had really acknowledged it the pain was spreading out to my shoulder through into my back and down to my kidney area. The velocity of it was unbelievable and unbearable, back to pre 2009 with heart session pains. Thankfully I have a stock of morphine, but 20 didn't touch it, I hung out for 20 minutes before taking another 20, but the pain was tearing through me and I felt sick, whether it was from the pain or not I will never know. After another 25 minutes I took another 10 of morphine, enough to finally take me to the otherside of the pain. With hotwater bottle held against my kidney\back I went to bed. The pain eased slowly in my chest and I was left shaken. It brought back all those terrible memories of sessions when I didn't know whether my heart would hold out, only this time it wasn't in that area.

I woke this morning feeling drained and totally washed out, I am sure the extra morphine hasn't helped either but I am left uncertain as to whether the pain was caused by maybe a muscle being inflamed by the radiotherapy or a quick bout of growth from the meso in my right lung. I had forgotten how bad the pains I went through were and I know now that as I am older and physically a lot weaker I doubt I can handle to many of these again.

The burning flares have calmed down since I started treatment on Monday, so has the burning that was in my side and left armpit. I contacted Dr Abtin and asked if the needle could have brought back a meso cell and he doesn't believe it could have as they freeze the area from all punctures, he did tell me that I had a large nodule in that area but would need to see the SCAN. I said to my Doc this morning everytime a scan is an important one I never seem to get it in time do I. I think I am becoming paranoid about doctors and me.

The touble with getting to know your body so well is that you know things aren't right, the burning flares I feel are the small tumours growing, it probably means its the nerves that are getting touched in medical terms but to us that means something has to be growing for the nerves to be put under pressure. At least the Doc has put my request in for the next scan, hopefully it should come through for October!

As I can be ruled out from most of trials going on at the moment, chemo is for emergency, if the right lung has started to go then I will certainly try out London's thermal ablation - at least it doesn't involve a long flight to LA and stopping away for more than 1 night. I know I am jumping the gun again and as much as I put meso into the back of my mind it keeps popping right back into the forefront at the moment.

On that cheery note I think I should close, take care everyone we shall not be beaten.

Treatments

2011-09-03T08:18:00.000+01:00

I didn't get blasted on Thursday as I had hoped but nevertheless the radiation treatment starts on Monday. To my shock and horror the tumour is a mass 4cm x 4cm and still growing. How could I miss this, all I can feel is a hard walnut but the tissue underneath is tender and the Specialist had a good probe.

The bad news is that the treatment will shrink it only, no killing off the root of the matter and I feel sick to my stomach. All those drains and one needle has caused this. Now I am paranoid in case it is growing everywhere and I don't know.

Gary and I have asked the question of putting alimta directly into the mass but this is unheard of, we have also asked about still having it removed after the shrinkage but the response so far isn't favourable.

I will have to start thinking of the future shortly, do I seriously think about requesting places on trails or just take a chemo that has been used for meso. The thought of chemo makes my insides cringe, after all I went through last time and the time before that I don't think I have the strength of mind let alone a strong enough body to cope with it.

Then again maybe I am jumping the gun and this isn't a sign of it getting out of hand, its just a one off. I know I have the other tumours growing but hopeful they stay singular and slow, just your mind starts you off on a path and your imagine takes over.

Just in case I have booked a holiday with my best friends and we are going to Kos for a week in October. I have never left Gary before and I found it awkward at first saying I wanted to do it. I do hope the weather is still hot then. At least I don't have to worry about dog sitters for this. I have talked Gary into a long weekend, hopefully Lexi is out of season by then otherwise Chris and Lorraine are going to have a hard time!

I know I think it all the time but I do hope that something soon comes out and everyone agrees its a good way to deal with meso.

Blasting Day

2011-09-01T08:10:00.000+01:00

Today's the day my friend will get a blasting. I am due at the Freeman's Cancer Centre at 10 to get measured and zapped. I have no idea whether it's 1 or 5 sessions at the moment, all I do know is that the lump has grown.

The oddest thing I am noticing is the little fire spots I keep getting inside, not just where the lump is though and I fear its probably the rest of the tumours talking to each other. Its like little red hot needles suddenly igniting in your body then going out. I have had them on and off for a while but now they seem to be more noticeable and much more often. My biggest fear is that once it gets a hold again there is no stopping this damn cancer.

On a brighter note I had an email from Ben Leer asking if I could ask other meso sufferers to get in touch with him. He set up the website for pleuramesothelioma and is now working on the mother website asbestos.com. They are asking for a small questionnaire to be completed, if you would like to take part could you email him on

Ben Leer <bleer@asbestos.com>

Oh well, time is looming so I had better get my act together, I am not a morning person anymore and the thought of rushing around doesn't appeal at all.

Lyndia, am doing something positive and finally getting a few days away!!!

Lumpy debate

2011-08-26T08:35:00.000+01:00

This lump is causing some trials and tribulations. I saw my onco who thinks it is seeding, I went back to the docs on Thursday and we didn't remove it. The local surgeon had a feel as I was explaining that it could be meso. The lump has attached itself to the muscle as well as the rib - he thinks, therefore removing it would need to be under a general. My GP was a little disappointed because he is in the same vein of thought as I am, remove any cancer if at all possible but neither of us really had thought of any further consequences last Friday.

I am now waiting for a radiologist to see me and see what he thinks. If we had a copy of the CT Scan that may have helped but things have changed in that area up here too. My Doc can't request it, neither can my lung nurse so I had to fill in the forms and wait to see if they post it out.

I want to thank Cliff for reminding me that we are all human and after what he has gone through I am humbled, there are a lot of people out there fighting this everyday and we all react differently to circumstances - thats what makes the human race unique, so thanks Amanda for reminding me of that too.

On a good note I got in touch with a lady who went through surgery with me and she is doing great, no return, no pain and out living her life to the full. The one thing that tells me over and over again is that this meso operates differently with every person it affects. It is always good to hear the good stories because it does drive us on.

If my lump stays around I will have to find a name for it, maybe my friends brat! On that cheery note better start thinking about going to work.

Thanks for the support guys, I really do appreciate it.

Meso Seeding?

2011-08-23T08:36:00.000+01:00

I don't know why I was quite up about this lump, over the last couple of days it has felt worse and the antibotics are killing me. I took yesterday off work as I just felt crap, my insides feel like they are being eaten away and the lump feels sore.

I emailed a friend and took the advice of seeing my oncologist. After having a discussion on the telephone he doesn't think its the lymph node but more like seeding from when I had cryo. Around my walnut lump the soft tissue is extremely tender - I tend not to have a feel around. My aim is hopefully it can be removed but maybe I will need radiotherapy to a) treat it all or b) after having it removed.

On Sunday I actually broke down in tears in the shower, something I hardly ever done, but I am scared and I am worn out from things going wrong. How many battles do we have to keep fighting. What with excessive bile that makes mornings rotten, my burning that has continually got worse and now to find that my last attempt at vapourising these tumours may have led to seeding in my left chest area. I hope it isn't seeding but what else can it be. My doc has reduced the strength of the antibotics down to 250 instead of 500's, and that has made a difference to how I feel overall, but it isn't helping the lump.

I read somewhere today that seeding is extremely painful, my lump and area is painful - so it isn't leaving much to my imagination is it.

After all these years I really feel that I am on the downhill battle, I know positive thinking brings positive outcome but I don't feel positive. My world feels like it has turned upside down and I can't stop it. Hubby doesn't understand how I feel. In bed the other night he said how are you, I responded not very well, he goes why? Why does he think why? We don't really discuss the meso, He is all there for support through doctors appointments etc but he doesn't really want to know how I feel, what pain I am in. He once said he lives with it everyday so why talk about it. Sometimes not talking about it makes the whole situation worse, not just for me but for him to. How can he release pent up emotion if he doesn't discuss it? Wives to husbands that have it are much more supportive than Husbands to wives that have it. From all the reading and research I have done it seems that the wife does it all, in my case I have done it all. He thinks giving me a hug makes everything alright, well he is really going to have to wake up to the fact now isn't he.

When I had the operation I asked him if he would gently touch over the scar to help mend the nerves, that never happened. I have asked him various times to check my scar for lumps - because I can't see but sometimes feel them - he doesn't. Because I have got on with things I think he thinks everything will be ok. Right now I want to run away, do something different, not have to face meso.

I want to go and sit in the sun somewhere, hubby was going to sort a long weekend out, still waiting for that too! I don't mean to sound harsh or ungrateful because I'm not but just for once I need some support from him other than having a hug. I know that men are different to us, they do bottle things up and never discuss them, or is it they have an ability just to ignore and brush things away!

My brother rang yesterday and called me a whimp because I didn't go into work, maybe I am in comparison with him. I don't know how he copes with his ms and bowel problems and then this chest problem (still no word of what it is - 8 weeks since his scan), but I doubt anyone I work with would have gone into work yesterday feeling like I did.

Better get moving, I am going in today. .. hopefully will feel better emotionally later.

My lump!

2011-08-20T10:34:00.000+01:00

Gosh three times in one week, I never usually do the blog more than once a week. My lump is a lymph node and I guess it is the meso. It's good to have the meso circle as Debbie really cheered me up this morning when I rang her about it.

My doc is on about having it cut out at the surgery and I go back next Thursday to speak to the doctor that removes lumps and bumps in house. I am also on antibotic's to see if it brings down the inflamation. By it is sore, the more you prod the worse it feels. At least I do think it will cure the burning if it goes.

As I was lying in bed this morning with my burning and my heavy weight in my stomach and then the iron box feeling at the bottom of my left rib and tip of my left lung I thought "wouldn't it be nice to wake up without having to move your body in a certain position to get out of bed and just to feel good" I have to hold my ribs to try and stretch them away from my lung so I can move. I find I wake up during the night doing the same if I move in my sleep. We seem to stick together inside!

I guess I am know praying for a miracle that the node is just infected with a bug, the burning will go when the infection clears and no more gabapentine or brother or mother of the same tablet again. This means my memory might come back to somewhere good and I won't be such a moody mare either, the downside of dropping the tablets is doing the extracting off them. I hear coming off is as bad as going on, bit like when I went cold turkey off those tablets back in 09!

Oh well, life goes on as they say. Have a nice weekend folks, and to quote Lyndia & Steve 'Do something positive'

Jan

Camera

2011-08-19T08:49:00.000+01:00

Yesterday was the most pleasant medical experience I have ever undergone. Mind it would have been a different story if the admission nurse had got her way. When I went to sign in and they take you into the cupboard she was telling me that having sedation didn't mean I would be asleep I and I would know everything that was going on but would be unable to stop it. The younger and unwise me would have said oh well I won't bother, but I stuck to my guns and got the sedation. They did have some trouble getting the needle in but once it was in I knew nothing until I was woken up by a nurse with a cup of tea in the recovery lounge.

The best thing is there is no sight of cancer down there, the saddest thing it isn't a quick fix as its bile, probably from loosing my gallbladder so this uncomfortableness will be with me for life. I don't eat fatty foods to start with so I don't know what else I can knock out of my diet apart from milk.

I have made another discovery, this burning pain started after my return from the USA in March, I had a little pinprick on my left boob near the top and thought not a lot about it, after all they had pushed through the cryo tube in that area. The burning has been getting worse and on Wednesday I somehow caught this spot with my hand and nearly jumped, it isn't a small pinprick anymore its a hugh lump and it grows or shrinks depending where my arm is located. After prodding it a few times it became really tender and hasn't stop hurting since. Typical I get one thing sorted and then go and find something else. If its a cyist caused by the cryo then a quick chop chop and no more burning pains either .. I hope.

Hubby is a little more concerned than me, I can see his mind ticking over wondering whether its seeding or not but I am sure it isn't. I said that the guy who shoved the needle in seemed to be enjoying himself and now I am paying the price. I have managed to get an appointment with the docs today so hopefully will find out there opinion.

I have tried unsuccessfully to get onto macmillans site for quite a while but today for some reason it let me in. I don't know about you but I find it very difficult to move around it, I know it hasn't changed since its last make over and I have had trouble ever since. Anyway I was reading an article about a young lady who's Dad was diagnosed with the 'S''s and wanted to log and and tell her to get him in for surgery but would the thing work. Two months later and it finally lets me in, I know from following her article she has been to the website and I hope she found the info on the surgery helpful.

Time is ticking and after having a day off yesterday I have mountains of work to catch up with. I am still months behind on all my accountancy work, all 6 year ends need doing now and I still have the other housing site to start as well as sell these houses at Spennymoor! Life it gets in the way of things doesn't it.

On top of that Lexi licked her foot open yesterday because neither of us were home for 3 hours! She must really miss us. The sock will be on her foot again today, although hubby will be in all day with her so hopefully it will stay on.

Funny how when one problem gets solved another appears! Good job I have strong shoulders!
Jan

Where was I?

2011-08-14T21:06:00.000+01:00

How time really has flown. 7 years ago around this time of the month I had just been discharged from James Cook after a 41/2 hour operation where Andrew Owens had removed 2 large tumours off my lung and 20-30 little ones around the rest of my lung. Little did I know then that it was meso, I was just thankful they had found out why I was constantly ill. I don't really remember much about those first few weeks as my lung kept filling up with fluid and before I was told the diagnosis on the 26th August I had been back in twice to clear the fluid.

They say every 7 years our body changes, I wonder if mine will change now 7 years have passed and the meso does stop still.

We take whatever happens in our lives and just carry on, we learn to cope, somehow we deal with it, but what about our partners. Since being married I bet we have spent more time for me recovering from surgery, in one form or another, than we have been on holiday together.

11 days before we were married my future hubby was told he had a terminal cancer and would be dead within the year. The pain that went through my heart that day I will carry till the end of my own days. Obviously, they got the diagnosis wrong as he had had a severe case of food poisoning which had attacked his spleen, liver and kidneys and done some strange stuff to his blood. The 48 hours we had to wait for the hospital to double check everything was nerve wracking, we had our wedding and the honeymoon just days in front. I remember leaving him in the house waiting for a telephone call while I had to go to the dress shop for my fitting and my maid of honours fitting. It was the only day we could go due to her shifts. I will never forget how guilty I felt leaving him. He still wanted to go through with the wedding and I promised to myself I would make his last year the best he could ever have. I still remember the emotional pain I went through and never told him during those days how I felt.

8 years later it was the other way around, but in this case the diagnosis wasn't wrong, that first year we looked at doing everything we always wanted to do, go back on a safari, try a cruise but I also wanted to carry on working for as long as possible. As time goes on you forget how important doing those things are, have I let my partner down by not treating every year as our last?

In life we do become complacent, then suddenly we are old and sitting in a chair wishing we had done x,y or z. I saw this with my mother and I don't want to end that way. How do I improve what we do, but then what is wrong with what we are doing. We still enjoy each other's company, we enjoy walking the dogs together, sitting in the garden together, spending time doing the crossword in the Daily Express or the Sunday Times. The little things are what make life more important. Are we remembered and missed because of a holiday - no, its the everyday things we do, but on the other hand that makes loosing someone even harder.

I should make our wedding anniversary a special day, for more reasons than most. I asked hubby if he fancied going out for a nice meal or a day out somewhere, unfortunately he said the meal is out because I shouldn't eat anything heavy the night before the camera and as for a day off, my afternoon has been booked with a 2 hour appointment. See normal life gets in the way of marking days as special. Hubby tells me everyday is special with me in his life, which always makes me worry how will he cope when I'm not here.

On that note I think I will leave this here, as I don't want to think about when I'm not here either, hopefully it will be many a year yet before I have to face up to it.

Keep well my meso friends, remember everyday is special. PS the new photo of Lexi is on her 10th birthday, hubby baked her a cake but I don't think she really understood what it was for apart from eating!

(Dog brigade don't worry - the cake was made from chicken not chocolate)

Jan

Current times

2011-08-10T08:29:00.000+01:00

Well what a mess we are in, and everyone around says the situation will get worse. The floodgates of Britain have been held open for far too long and we will pay the price for this. The working man throughout the breadth of the country will be paying out more Tax and more insurance hikes to cover the cost of the riots. If we were in china the tanks would have been called, and no I don't think we should go to the extreme of shooting everyone involved, but it would surely be a deterrent, as it is we didn't have a deterrent and now the riots are moving around the Country. This will end up driving more people to move away from democracy at the poles and bring in the NF or UKIP and to be honest what does the government expect. We have nothing to stop people arriving here, if they were so afraid for their lives then why didn't they stay in Europe. No wonder Europe is against action, no one stays there do they, no they all arrive on our banks because we are handouts to all unless you actually live here or worked here. Its like that TV ad, 8 million children die needlessly, now I think 8 million children are born needlessly. The world can't carry 8 million children every year, drop condoms on these countries or teach them raising one child or two makes it easier on them, even better do what India did, send out medical teams and give them all the snip! We can allow people on TV or show news reels of people acting racist to our soil yet we can't do the same without being called bigots - come on lets start having equal playing fields here.

That's my rant at the world for the moment. Have taken a few steps, probably in the wrong direction, with pain. As I am taking the gab I thought I would drop the morphine by 10, which doesn't seem to be having too much of an effect, although I could have chosen a better time as I am worn to the knees. I went through a nothing day on Sunday, as I just had nothing left to give. My body ached, my energy levels were -100% and I didn't even want to turn the computer on. I am finding my moods aren't as bad now but the burning isn't really improving and for tracking some of the pain its quite difficult as it comes and goes. My heart region is a lot heavier, but I am sure this is because I haven't had my batteries charged recently, bring out the sun!! Burning under the arm is getting worse and last night I fear the chinaman was back, but his axe was more like a little drill.

The Doc agreed to use a camera down my throat, so on the 18th I will finally find out if there is something going on that can be easily remedied. It would be nice to wake up without one less problem.

Am thinking of a long weekend in Majorica - does anyone out there recommend any good hotels in a flat zone? I have been told that the hotel Illa D'Or is in a flat region but don't know if there are cushions on the sunbeds!

Mam's probate today so had better get moving - have turned the heating up to warm the towels before I jump in the shower. One thing about the cool weather, Bear isn't panting so much during the night. We bought him a chill bed - its like a waterbed mattress, only problem is he won't lie on it. We have now put it over the shower tray to protect it from him and his claws.

Oncologists Visit

2011-08-01T08:57:00.001+01:00

I went to see my oncologist last Monday night and he was thrilled with my results. A few mm in his eyes wasn't worth getting upset about, after all I had taken out the largest tumours and the rest seem to be steady. Yet the subject turned back to if I hadn't taken control of where I was going I probably wouldn't be here and I seem to know what is best for me. So what is best - I have no idea but I do know that I am doing nothing - yes you got it - nothing - I am going to enjoy the next 3 months and shove meso where it deserves to go.

I did gleen one bit of information that I never knew before, when Dr Owens removed the first lot of meso it was fiberous, and of course I had mixed meso (both E's and S's) but it was more in sheet form. The second lot removed was like baked beans all individual but lumped together and I believe all E's, this time it seems that I have individual tumours. I didn't think meso could change its form in one person but wow am I glad. Maybe I will have more luck in the future when I do need to remove them, if they do stay individual.

My mcmillan nurse, who I have had some 5 years although I haven't seen her really since middle of 09 until recently, has had her area redefined. I am sad about this because although I didn't call on her alot I had built up a relationship and she had seen me go through so much with the chemo and the surgery. But it's the patients she see's more of that I feel sorry for. Especially if she has some long term elderly on her books, how do they start again. Thought just isn't put into these things at the top end is it.

I have worked some long hours this last week and maybe it was because I was tired but on Wednesday during healing my mind was thinking about what I needed to get done at work and my mam popped into my thoughts. During the night I awoke crying my eyes out and the only thing I can remember is my mam saying "I have to go now", and it felt that she had really been there.

Better make a move, its Monday morning already - still no glorious summer sun but I guess its warm.

Another year down

2011-07-24T20:53:00.000+01:00

It does feel good to still be here, especially at the tender age of 44 I didn't think I would see 45 let alone 46, now I've hit 51 and hopefully I will still be here planning my 55th, neigh 60th!. To be honest I didn't even realise it was my birthday approaching like a rapid rate of knots until Wednesday and Shirley at Healing gave me a birthday card. I am so absorbed in the housing that dates just don't exist.

One thing I have certainly learnt for my 52nd year is that I am either wanting to battle or wanting to hide away from meso. I spent the majority of my life working and fitting nothing else in, now that I should be fitting other stuff instead of work I just haven't the energy, or as I wrote to my meso mate, is it because it just isn't in my personality anyway.

Today was wonderful, we actually got back over the fields, the grass has been chopped down so no fear of it annoying Bear's neck or Lexi's bum. The dogs truly enjoyed the freedom of a few acres instead of the third they have to make do with at home. Bear's nostral's never stopped, they seem to go into overdrive when he has a scent of something. I had hoped we would have had some good sunbathing weather but then you can't have everything!

The other thing I have noticed is that everyone around me brings up meso more than I do, or appointments or the 'what treatment are you going to do next' question. Cancer is a scarey word but everyday someone out there wants to remind you of it. Then why do I write a blog about it then .. I started because I wanted to tell others about cryo, then somehow it became a journal of how I felt. Good job I wasn't writing my blog when on chemo like Amanda is on theirs. I remember Lorraine asking me to start my story and I found part of it, if I had been doing the blog I think I would have turned everyone off the thought of ever trying alimta. It was that bad even I didn't read past the first two paragraphs, I am pleased I didn't use it on the website story either.

Funny I am already starting to wonder if our summer next year will be better, always the optimist, but its true. Mal at work said something about 12 weeks time will be November and I thought where does the time go and what have I done with it. Nothing is the answer, we are all guilty of the same so what is life about. We get up, shower, dress, go to work\shop\visit, we cook, eat, watch TV then go to bed to do the exact same thing the next day, we call this living and hold onto it with all our might.

I feel silly worrying about a couple of mm growing, but then I have been through so much to have a few mm growing back that I think I'm annoyed it dare come back. All that chemo, cryo and surgery. I know there are no guarantees but seriously I didn't think it would come back after surgery. I had heard about it, hence why I didn't eventure there earlier, but maybe I could have waited a little longer. Would I really have been pushing up daisies if I hadn't had it done when I did? Would it be better to have surgery earlier before the meso really does make itself at home.

What are our choices for treatments really, not a lot, 2 chemo's, surgery, ablation - but only on large tumours to relieve pain (and hopefully slow spreading down), Prof Vogl's chemo direct to the lung, or nothing. If you don't agree with chemo will Prof V's work? Not enough stats on any of the above. See I'm back to thinking about treatments, why can't I just concentrate on the enjoyment of life and quality of time! Spending my free time worrying over what to do is such a waste but I can't seem to get my brain into that way of thinking. A good surgeon keeps telling me quality is much more important than quantity ... but what is quality .. going to work\shopping\visiting friends?

I remember the first year and we travelled, I seemed to have more enthusiasm to do things and spend time with people, now I just want to grow old with hubby and dogs, die in contemptment in old age from a heart attack not be robbed by meso. Up until your 40's you don't really think of old age, your parents are starting to get there but in your eyes they are still the same. When you loose them you suddenly seem to realise old age - the downfalls of getting old and even worse noticing you are getting there yourself. Time to close otherwise you will be requesting your zimmer frame before you reach the end of this.

Keep enjoying life and everything that makes you happy - or at least try!

Meso run for your life

2011-07-20T18:17:00.000+01:00

The results are in for the last scan. Although I don't understand the full amount of the medical wording I know that having the 4 removed in March was a good idea.

It didn't kill the cancer, but those 4 tumours would have flowered, for want of a better word, and more little tumours would be feeding off my lung. Some have remained stable but others have grown. One remark was the 9mm tumour previously recorded in January is no longer there. I hope this was the 14mm tumour which was removed, but on the side this would mean that that specific meso was growing at approx 5mm during those 3 months. The radiologist has reported that some have grown in bulk and some between 2 and 3mm. It is hard to work out the sizes, after all it depends on where the scanner slices for its pictures. As for my right lung I have the 3 tumours reported in USA and 2 tumours reported on this scan. Either way the meso is now in the right, whether 2 or 3 doesn't matter action needs to be taken in that area.

I am waiting for a copy of the scan and then I guess I will be contacting Prof Gilliams and try thermal ablation. I would love to have Dr Abtin remove them but there is no way I am returning to LA. I like the idea of just going to London, one night recovery and home with the dogs and my own surroundings the next day. At least that will take care of holding them back from flowering - fingers crossed.

I just don't know what to do yet about the development of the meso in my left lung. If it stays slow growing then I'm 50/50 on holding off any chemo. I need to remember that when the chemo came back to life in 07 I wasn't that happy it was over 1cm before I knew and I was annoyed that I hadn't started chemo earlier, but as it was the chemo didn't work and the cancer kept going.

I feel really good at the moment, forgetting the morning crap, but I have gained weight, my energy levels have improved and although I am still battling with the gabapentin, overall I look well and feel well. I think I am telling myself that the meso isn't there and maybe I am putting my head in the sand in some ways but when you feel good you don't want to know that things aren't.

I am still waiting for my oncologist to come back with his thoughts on the trial info I have given him, I guess when I see him again my head will have to come out of the sand and I will have to deal with the reality my friend isn't willing to give up the fight in my left lung and has made a claim on my right.

That's it for now, hubby is calling from the kitchen, dinner is ready and my stomach is empty.

Keep strong everyone and let us beat this thing.

Emotional journey

2011-07-16T18:11:00.000+01:00

It has been months since my mam died and today was the first time I have actually started sorting out her things. It only took me 5 years to go and put Dad's things out of drawers and throw out his old socks. Mam couldn't do it or wouldn't, I don't think she ever entered his bedroom after he died.

Hubby, because it was pouring down, went down to the house and just filled boxes up with everything from the cupboards. Cards, photo's, brushes, batteries, you name it, it was all there. I have only visited the house 3 or 4 times because it feels strange, so I don't know how I will cope when I finally go into her bedroom and start sorting through her clothes etc. To think after living for 84 years her memorabilia filled 8 storage boxes. I thought there would be letters which she kept from her mam and aunt, but nothing. Birthday cards, xmas etc but no correspondence. It brings back the wonder of why we are here, once we die we truly do and in another generation mam will be forgotten.

My scan results are sitting on the computer at the surgery but unfortunately no Doctor has read them, hopefully I will get some news on Monday. I also kept the appointment with the pain management Doc at the local hospice. I don't make sense when talking about pain, I have different pains at different times, my morning pains are the worst and I hate waking up. Yet at the same time I need to feel a little of the pain to know what is happening. He wants me to take the gabapentin 3 times a day, so from today I will be on 3. I have warned hubby to buy a set of armour and to hide the knives. Also have a new appointment with the gastro people in August so maybe if I can solve the stomach issues I will feel better overall.

Having a girls night tonight, Chris has ava for the night so Lorraine and I are going down, haven't done this for months so it should be fun the three of us. Although it will be a teetotal event, Chris can't drink because she has the baby, I can't face it and Lorraine is driving. I don't know whats worse getting up and down all night for the loo because I had too much alcohol or too much tea!

Time to go, Lorraine will be here before I drink my tea and brush my teeth!

When do they learn

2011-07-07T18:57:00.000+01:00

Everyday on TV, Radio or newspaper there is coverage on bowel cancer, if you notice changes etc etc go straight to your Doctors. One of my manager's wife has been doing that for months, to the point recently that she spent most of her day in the toilet. I don't know why but the Doctor just refused to refer her to see someone else. At first he said it was something to do with the tablets she had taken to go to the loo, then she was suffering stress, all the usual rather than just sending some one off for a proper investigation.

Finally, after requesting to see a specialist privately, she was referred she saw the consultant a week gone Monday and Tuesday she was in having very test possible, by Tuesday evening they were forewarned things were not good. Today, after going through a small operation on Monday the news is far from good. Their lives have just fallen apart, they are no longer just dealing with bowel cancer but it has already spread to the lungs and the lymph nodes. She did everything right but has been badly let down by her GP. The same thing happened to my late Aunt, for 2 years she kept going to the Doctor and all that time her cancer was spreading to the point that by the time diagnosis was made she didn't have that much time left.

Everyone makes mistakes, errors happen in every aspect of people's jobs, but when you have a patient knocking at your door more than 3 times for the same reason surely something should be looked at. Even giving peace of mind by doing further investigations must save the NHS millions, and that would just be on the amount of pills they dole out.

I received news of my scan date, to my horror it is the day of Alan's funeral. Changing it means another long wait and I just daren't. Its now 7 months since confirmation of the cancer growing and as much as it breaks my heart not to be at the funeral it would break my families heart if I put off another 6 weeks for a scan which adds on another 2 weeks for the results and then we are in October before I get anything sorted out.

On a good note, Lexi is 10 today, hubby baked her a special cake, made with chicken fillets, oatmeal and carrot all mixed with flour and eggs (sounds delightful .. not). He then put Dog chews on the top for candles... bless. It was so funny this morning as I was pulling out for work the florist arrived with a vase of flowers, I thought he had gone mad and bought her a bouquet for her birthday, it turned out they were for me as a thank you for his new 500 lens he wanted.

All for now, thoughts to Heather and family for Tuesday
Jan

Loss of a friend

2011-07-01T16:48:00.000+01:00

It's with the deepest sorrow that I am letting you know that Alan lost his battle to mesothelioma. I know that many of you sent your thoughts to both Alan and Heather.

Alan and Heather attended meetings across the country, raising excellent points on treatments and driving awareness of mesothelioma. With that awareness they also brought warmth to everyone they met and I hope that Heather knows there are lots of us out here that will be there for her.

To Alan, I salute you for your courage and humour that carried you through this journey.

Jan

Meso Action Day

2011-06-27T19:16:00.000+01:00

What a beautiful two days we have had UP North, I actually managed to spend some time in the garden, yesterday just reading info on the new Chief Architect x3 program (wish I understood more about CAD) while hubby did this and that. I did have a go on pushing the lawn mower but he only let me do 6 runs, I think he thinks I can't cut grass, its only a machine you push up and down for God sake!

I did have fun getting the blaster out and giving Bear and Lexi a good air clean, although Bear just wanted the thing in his mouth again. I was amazed at the dandruff in our Lexi's coat. Both hubby and I burnt though, we had cloud cover on and off must of the afternoon so didn't think about sun lotion .. oh well.

Had a couple of hours out this afternoon, sweeping the paths and giving a bit of a tidy up, I had planned to read another 5 chapters of this guide but felt guilty just sitting. I hope this weather stays, the lovely warmth on the bones brings the best out in me, but then again I am a cold bod .. Hubby is suffering with the heat.

Did you realise it is Action Day this weekend, since it was changed from February I don't seem to notice it coming up. I haven't really heard anything about what is organised this year either. I did receive a copy of the mesothelioma news today but it didn't have much info in regarding events around the country.

I did mention the ADAMs trial, I would have expected more than 13 on it. The only thing about trials is the fact you could end up taking nothing and hence wasting precious time having other treatments. I still don't understand why people who don't want to follow a treatment regime can't be used as the "without". I know a couple of people who don't want to do anything about treatments yet and these would be great candidates to mark and match against those who are willing to give new drugs a go.

On Saturday I had a pain back in my heart region that resembled the ones I had before surgery, the additional morphine took it away but I am hoping it isn't my friend back in the pericardium. I don't know whether the meso can grow on a false membrane and must remember to ask John Edwards. Other than the usual I have felt lifted, probably because of the sun. Stupid really that a little sunshine and heat can make all the difference to how you feel.

My thoughts are with Alan and Heather at this time, if you do pray can you please ask for them too.

Back to my next 5 chapters, if anyone works with Chief Architect can you please give me some pointers on layouts and default sets and sets that just keep appearing on the drop down box!!!!! I am sure that as I have grown older I understand manuals even less.

Hope the sun stays shining for us all and the heat is beneficial to you all.

Weekend of Meso

2011-06-25T15:55:00.000+01:00

I did it again, I overslept .. another morning spent with extra pain, why couldn't I just get up at 8 instead of 9.30, it's amazing how an extra 90 minutes can inflict more pain on those sensitive areas.

No word of my scan, although my GP has chased this up and the request is sitting in the hospital department waiting for a date. At least I will get an appointment relatively soon, but then that leads to the next stage of what will I do. Yes I have my plan, get my stomach/gut/gullet sorted and see what is causing so much aggro then if the chemo won't cause any more problems to it then I guess that's what I will do. I still keep referring back to the Adam's trial, which I would like to do but under the criteria I don't think I would be allowed.

My vanity is also coming into focus at the moment, my hooded eyes could be the source of why my eyes want to close around 3 every day so I am going to enquire about having some of the surplus (loads of it) skin removed. At least this is easy surgery and the benefit will be both visible and beneficial. I honestly wish at times I could turn the clock back, but would I do anything different about the treatments .. the only one I would by pass would be the gall bladder.

Have started noting more changes in some of the pains, under my armpit is feeling different and my bottom rib seems to feel like its sticking to my stomach. The iron bar box is expanding further around my chest and my heart area is heavier. I feel slightly swollen under my ribs, I hope the bottom part of my lung isn't doing anything naughty and entertaining its mate meso! I am also going to ask about a different nerve pain, I fear hubby is starting to have concerns over whether or not I could commit murder and him being the main victim. I hate taking tablets to start with as your body wasn't meant to have additional stuff added to its make up, and lets face it the brain is a very unique and in some ways uncharted ground. Giving mixed signals vi way of a pill doesn't necessary mean it will give the right signal for what it is intended to do. I know I'm a whinging b*****d normally so add a tablet that makes you swing from bad to worse isn't a good idea. These tablet inserts always bring a smile, you may become depressed, could bring on suicide etc .. Not what you really want to read is it!

We have had the dogs out over the fields today, first time in quite a while for me. It was great as the grass was higher than both Bear and Lexi, which meant neither of them wanted to wander far from us as we made the pathway through! Because of Bear's neck as soon as I came in I blasted him to remove any pollen or small insects. What a joy that is fighting with Bear to stop him putting the nozzle in his mouth. I am sure the power of the thing would blow his insides out!

I hope that if I need to go on chemo the chemo does its job and maybe I could actually feel healthier. After buying all those new jeans, none will fit as I have managed to gain weight - so a word of advice buy something that doesn't fit when you go shopping as you will either grow into it or down to it!

Have invested in a more powerful house designer program so had better get back to the who to do manual and start reading. Only hope before I die I actually get to build some of the house designs I have created.

Another weekend with meso on the brain, variable weather and boredom rolled into one.

Plan for Mesothelioma

2011-06-21T19:07:00.001+01:00

Waking this morning was painful, I hadn't been up and down all night with Bear and it showed. My body ached and hubby had let me sleep till 8.30, considering I had climbed into bed at 9 the night before, I wasn't surprised that I hurt. I decided I didn't want to clash and go to work so did what I never do, took the day off.

I had a meeting today with my Macmillan nurse, I haven't seen her for nearly 2 years and it felt good to unload everything I had bottled up. I think I battered her head in as much as I have battered my own in over the last few months. Part of me still thinks its the tablets but then maybe they have just opened up some doors in my slow brain and let the flood gates open.

After she left hubby asked what do you want I said I don't know I'm just chasing circles. He gave me a sheet of paper and told me to write down what I want to do. The Plan evolved and goes something like this:

Get a doc to put a camera into my gut and see what the hell is going on in their, if its the meso then so be it, but it has been going on for a long time so I think its damage from the chemo or losing the Gall Bladder. Maybe it just needs something little doing but will give me a lot of relief. The amount of tablets I have tried and got nowhere is annoying.

Get the doc to organise regular blood tests to keep an eye on my other organs. I have pain around my left kidney so bloods would show if something was wrong or monitor me for anything that could go wrong.

Keep a 3 monthly schedule for ct scans - keeping an eye on the right lung as well.

Arrange to see the Heart Doctor once every 6 months to keep an eye on this enlarged and twisted heart. Having alot of pain in that area - probably is the meso - but will keep me happy.

See a pain management specialist again - discuss other options that don't cause personality changes!

You see what's the point of fighting the meso if say my heart decides to stop playing, heart problems run in mam's side of the family. Stomach needs sorting before I or in case I do go back on the chemo. The one thing that puts me off the chemo is the problems it caused my internals. I want to be as fit and healthy as possible before I take anything that will knock me over.

Work - work is the hard one, do I quit or do I stay. Without work what will I get up for, if I'm not feeling great I will waste the day away and doss around the house. But working too much is making me tired and leaving me running on empty

Bear, my little baby, is back to normal. He is now letting me scratch under his chin, he has taken some of the tops off the scabs himself and spent most of today asleep in the downstairs shower. I keep going in and trying to wake him up but he doesn't stir, even if I tickle his paws - which he hates! His blaster arrived today so we had fun. He tried to put the end in his mouth, so it was a fight trying to keep it on his fur only. He didn't have any dandruff fly off him but did enjoy his hair been blown. Tried to trim the remaining fur around his chest but I failed miserably with that one. He is still demanding attention when awake though, right now he is calling out wanting his stomach tickled.

On that note I will sign off. I feel happier that I have unloaded and a plan will be put into motion, Bear is happy and hubby will get a good nights sleep. Fingers crossed that Debbie and Cher's treatments went well today and to everyone else who is undergoing treatment.

Bear Asleep

2011-06-20T18:28:00.000+01:00

After another early dawn with Bear I was both over the moon and annoyed to find him crashed out at lunchtime in his favourite place (the downstairs shower), snoring his head off making up for all the lost sleep.

Yesterday we finally had breakthrough and I was able to groom most of his body, the minute I moved to his shoulders he took off leaving me holding the comb. We also decided to go tablet free yesterday apart from his antibiotics, I am sure that the tramadol didn't do him any good at all apart from putting him in more distress. Everyone I know who has taken them have all experienced dizziness or feeling strange. He has also managed to scratch his chin with his paw and made quite a few scabs bleed but at least the majority of the green puss ones have gone.

I must admit with running on empty I have felt a lot better, my mood isn't so hot - rather on the if I had something in my hand I could throw it at you phase but physically I don't feel so achy and tight. Maybe because I haven't been able to lie down and sleep for longer than 120 minutes my body hasn't frozen into one position. I am looking forward to collapsing tonight though, I said this last night but ended up getting up and down with Bear. Hubby will have to be on duty and do the its ok Bear routine and stroke his fevered brow, walk him round the house and run round the garden between 1 and 3am trying to get him back in the house.

Have arranged to see my macmillan nurse tomorrow. I phoned her last week as I want to have a open honest talk about how I feel and what chances I feel I have. If I did this with hubby or the girls I would need to take their feelings into consideration, whereas with a stranger who has no involvement one way or the other, it won't matter what I say.

I truly feel like quitting work and tonight I was so close to just walking away from it all. Maybe I do truly feel this is what I want to do or am I just so tired that I can't think straight.

Oh well better go, Bear is threatening to rub his bloody chin all down the sofa. Pleased to see him back to his naughty self again.

Hope Debbie and Cher had a smooth day of treatment in Germany, put them on your thoughts for the day list.

Poor Bear!

2011-06-18T17:17:00.000+01:00

What a week, with Lexi finally getting better we thought maybe we might just manage to organise a long weekend and get away from it all. Our hopes were dashed as on Monday night I thought Bear's chest was a little damp. I put it down to being under the hose pipe again (his favourite hobby in the occasional sunny weather). Tuesday night he paced and I realised he had another hot spot, no sleep for me as I was up and down with him all night. He just couldn't bear being left on his own.

We got him into the Vets on Wednesday am and they shaved the poor mite, what a mess, he had green gunck and blood mixed in with sticky hair and sores. Of course it was antibiotics and pain killers, but still he wouldn't sleep. He will not put his head on the floor, and because he drools we are constantly wiping is mouth (nothing new about that over the last 18 months) but now if he sees you with the towel he takes off.

Neither hubby or I have had much sleep and we are on our knees so I honestly don't know how Bear is still awake. The poor thing hasn't slept since Monday night apart from the occasional 1 to 2 hours.

I think its bad having meso, I know from experience that there is nothing worse than wanting to tear your skin off with itching .... Guess I am going to have to learn how to use those trimmers after all.

I got a lovely email this morning with a link to youtube about a young boy in Korea who hadn't had a life and entered a talent show. When he sang my eyes filled with tears and my skin tingled. Hope and chasing your dream can happen.

Bear is yelping for attention so had better go. No doubt I will do my normal blog tomorrow, at least with all that has gone on I haven't had much time this week to feel sorry for myself, have been to tired to think!

Busy Week and Meso blues

2011-06-12T18:57:00.000+01:00

I never thought that nothing day was going to come to an end but Monday morning I was up and out to work for a meeting on site. I decided that I have been looking at the housing project as a hobby instead of part of a proper job - hence the guilt at getting nothing else accomplished between 9 and 5.

Monday morning was a nightmare though, Lexi had bled from her holey bum and it didn't want to stop. The vets shaved her and decided it was best to try and let it scab over. Hubby moved the spare bed downstairs and slept with her, otherwise she would have attempted the stairs and stretched the skin apart causing it to reopen. What a bunch of softies we are in our house, but our Dogs are children to us. Normally the both of us would have slept downstairs but things have changed since we last needed to. We have now started her on another course of tablets, regardless of cost I hope they do the job.

I couldn't bare looking in her eyes, they looked so pained and sad, thankfully by Wednesday she was bouncing back - she is on tremadol for the pain and I felt guilty giving her those, as from experience I would loose a day or two when I took them. How do we explain to our pets what is happening to them. She knows the routine of getting the cream rubbed on, overhead lights go on, she jumps onto the corner part of the sofa, cream applied, biscuit given. Sometimes when its tender she tries to put her bum further into the corner, but overall she does really well with the nightly treatment. The new tablets are like rockets so she is having an extra treat, tablets wrapped in black pudding! We tried milky ways for a couple of nights, but chocolate isn't good for dogs ...

I took half a temazapam on Sunday night to help ease my muscles and have continued every night this week. They have seemed to help as my side doesn't feel like a stiff mass on a morning. Just wish I could get my insides to feel the same. It scares me the thought of chemo again, if my internals open up like boiled tomatoes will I bring on even more long term damage?

Seems like a few of us are feeling the meso blues at the moment. You find yourself pondering about life, is the pain worth all the effort, are the treatments just forestalling what is to come. I think we have all been in that mindset at sometime or another during this journey.

I haven't had word on my scan date yet, neither have I heard back from my oncologist to say what his recommendations would be if I need to proceed with treatment. I was hoping for some feed back on the research I gave him. I keep thinking about getting back in touch with the McMillan nurse but I'm not sure what she could do for me.

My busy week of working 5 full days and Saturday morning caught up yesterday and I crashed on the sofa. I brought home loads of paperwork to do but that went out of the window. Today the sun shone for all of 30 minutes, I got a little excited at 9 thinking I could read a book in the garden .. oh well. If I could just summon up the energy to do something different I am sure hubby would be over the moon. Instead I sat for 5 hours at the computer reorganising bathroom walls in the next housing project. The houses are built, not complete. One style I have already altered to accommodate a dining area, in this other style I am trying to create a bigger bathroom and ensuite. It is so time consuming and harder than starting from scratch. At least tomorrow I will know which decision we will go with then I can start thinking about the kitchens to go in.

Here's to another week, and hopefully no nothing days at the end of it, would be nice to plan something other than catching up with resting on Saturday or Sunday.

Just before I log of War and Peace, I had a new pain this week. It reminded me of the days when the heart attack sessions use to happen, please someone tell me that the meso can't grow on the false membrane that is wrapped around my heart.

Sweet Monday tomorrow

Jan

Nothing Day

2011-06-05T17:11:00.001+01:00

Do you ever wake up and know that today is going to be a nothing day. I nipped to the loo about 7am stepping over Bear who was snoring his head off and laid so I had to play twister to reach the loo. He didn't wake and I thought Great don't have to do the stairs and let him out. I should have stayed up because I know I would have felt better but no I went back to bed. Hubby climbed out about 8.30 and I was aching badly then but I persisted in having a lie in. At 9.30 I decided the steel bar in my left side wasn't going to ease and if I straightened my body out the shock waves would certainly be unbearable... so I knew a nothing day was ahead. Strange on how a nothing day your legs even ache, even my cheek bones ache.

The sunshine of Friday and that wonderful feeling of being alive died with Saturday morning and the grey clouds. Such plans for the weekend dashed by the colour of the sky and the strength of the breeze. Do people who don't suffer cancer ever feel this way. Maybe they do but I can't ever remember having nothing days before. Gosh what was life before mesothelioma, before pain.

On a nothing day I just can't be bothered, the energy even to converse with another is too much, you don't want others to know your having a nothing day, you keep everyone at arms length - thankfully hubby knows the pattern of my nothing day. An old movie on the TV, let me laze on the sofa, fill me with tea and coffee and try and tempt me to eat. I want to eat and chat but I can't, my nothing day is consuming me.

If I have overdone things for a while, maybe two weeks of none stop activity then a nothing day happens. You feel it will be the same tomorrow, but you know it won't, just today will be that nothing day and usually tomorrow I'll be fine again. My worry is that maybe the nothing day will start becoming every day and then what will I do?

I can't even tempt myself to do any computer work, even writing the blog is a struggle, I will hate loosing this day, feeling it a waste of a day in my life, but there's nothing I can do as I am bound to this nothing day. I want this day to end, to find myself retiring to bed and waking up tomorrow, but the clock is clicking slowly today, I want to do something but can't summon up the energy to do it. I'm frustrated at the lack of drive I seem to have but I can't bring the frustration to a head to force me to take action. It's like a merry go round that I just can't get off. It's like a bad hangover but without the fun of the night before. So difficult to put into words is my nothing day.

I'll close this blog on a nothing day and hope its a long time before the next one consumes my day.

Do we help - I hope we do

2011-06-01T19:46:00.000+01:00

I had a lovely email the other day from a lady who's husband is on this journey. There are quite of few of us writing blogs about how we cope. I remember when I started out with meso and you did a search on it you were lucky if 3 pages came up and all but 3 were solicitors (usually American) on about claims. Now there are hundreds of pages, still alot of solicitors but much more with information on the cancer, how it works and what it can do. There are also lots of references to stats saying we only have so long to live etc. Yet there are quite a lot of us out there still holding on, but most importantly there are real stories about real people and I truly believe they help. If only one piece of information reaches one person where its needed then sharing your thoughts and info is wonderful.

When I was younger and felt a little low, you know fell out with boyfriend, didn't like the boss etc, I use to write it down and get it out of my system then tear it into little pieces. For me the blog has become something like that. Maybe I share too much and then other times I don't share at all. Over the last few weeks I have wanted to hide my head in the sand and wish I was some one else or some place else, we all need an escape to something other than meso and boy do I need one from myself badly.

I honestly believe that the gaberpentine have a lot to do with how I feel but I also remember the night before cryo in LA and I told my body that this would be the last time I would inflict more damage to it. How it keeps bouncing back is beyond me. My mind already had the seed of defeat and I do think these tablets are helping to feed that seed.

I went to healing today, all morning my side felt like it was burning, especially between two ribs and every so often I kept getting a jolting pain through it. While I sat through the healing I realised the jolting had stopped and 30 minutes later the burning had ceased. Was it healing or could it be simply the pain had burnt itself out. I have to be honest I am dreading the forthcoming scan, after having surgery I honestly thought it would be years before I needed to worry about the meso and all I did during those 24 months was moan about pain, but pain is wearing. Now there is nothing really out there that can remove the whole lot, you seem to think of surgery as being the final hit to the disease but that dream fell apart and I am left to pick up the pieces. My family and friends don't seem to understand anything apart from wanting to push you on into some other kind of treatment. Whether it be right or wrong they want you on a treadmill .. this is where you have to be careful, jumping in too fast can be as bad as jumping in too late.

I have pushed my body to the limits, thinking that it can get better in days rather than weeks but if we aren't strong we can't fight and by not giving my poor body time to regenerate its energy I am wasting more energy by doing something other than recovering. All just to be normal. No more was my cry in LA but I also don't want to lose the battle either. I wish I could straighten my brain out but I am so exhausted I can't think in a rational way. Hence I think the tablets aren't helping. I am so tired but sleeping isn't making me feel refreshed.

Before I sound like a long playing moaning record I will go, always hoping tomorrow will be better and brighter, just one day of feeling good would be so welcome.

This is where I hope you are feeling good, pain free and worry free - long may it continue, so if you are that lucky thank your body and make it feel special.

To Alan and Heather willing every bit of luck going for you both.

An exhausted, overtired and overwrought Jan

Catching Up with Meso Circle

2011-05-29T18:53:00.000+01:00

We had a lovely lunch yesterday spent with Helen and Barry followed by Helen been mauled by a 10st Black bear.

I think Helen fell head over heels with the Black Boy and for a person not too keen on dogs certainly enjoyed the loves he was giving her.

It was great to catch up again so soon after LA, but I must admit I was a little envious as they had come from seeing Take That at Sunderland on Friday night.

Although it is terrible that we met through having mesothelioma and would never had met, the only good thing about meso is that you meet some wonderful people, unfortunately they are on the same journey as yourself.

I had hoped that we would have had a family walk over the woods today, our niece has arrived to stay for a few days and hubby finally tracked down a large ramp that enables Bear to walk straight into the Jeep at a lower ratio and much more rigid so it doesn't buckle under his weight. The weather though has turned to wild winds, so no walking out for me.

I decided to try and sync my blackberry with the computer and managed to loose photos! I think I need a few lessons in technology. How do kids of 11 manage to get new things and know exactly what to do with them?

Here is a very nervous me before going down for cryo in March. See all hospital gowns are the same the world over!

I think the shake on the camera was the fact that hubby was more nervous than I was.

The man of the moment, of course Dr Abtin. This is on the main drag to Santa Monica. We were sat at the corner of 15th. Must admit the sandwich we had for lunch there was the best food we had eaten the entire time we spent in LA. This was the Friday after the procedure and hubby and I walked the 16 blocks down to the coast. It doesn't sound much does it 16 blocks but it was a good 40 minutes both ways. Thankfully it was flat! I don't think I should have done so much but Dr Abtin didn't seem that surprised at it.

I have to say that I wish I was feeling lots better, and after talking with Helen it is a relief to know that she also has some of the same uncomfortable areas. Especially the feeling of having a constant stitch in your side.

My GP rang on Friday evening to see about sorting my next scan out and to check up on how I am doing with the Gabapentine. Thankfully he is quite happy with me only taking 2 a day. Guess I should go and have a chin wag but will leave that till after the scan.

I hope the meso meeting went well in USA, Dr Abtin was presenting after Dr Waller, hopefully they may pick up on the thoughts of cryoablation over here. Especially if they can see it helps, yet we do have thermal so why isn't that getting publicized.

I have also asked my GP to ask for a definition of the thickening, is this what Dr Abtin identified as the 15 pin heads, also to check on the 3 nodules on the right lung.

Am ending here as I have just heard some terrible news about a fellow meso friend. Why are we told that this bloody cancer hardly ever does spreads from the lung......

If you are a believer in something called healing or Rikki please send your energies to Alan, it will know where to go. Our hopes are your hopes.

Jan

Debbie's Fund

2011-05-25T08:21:00.000+01:00

Although I don't mean to be so out of touch it was a shock to read that Debbie was back heading to Germany for another round of treatment. What is even more worrying is the Gall Bladder.

When the tumours were back in 07 I was told it was probably the Gall Bladder and yes I did have some stones but when I awoke from the surgery I was having the same pains (a full out heart session). I just hope and pray that it is gall stones for Debbie and not the meso in the heart sac. Let's face it I had had scans and they couldn't detect it or they didn't see it (it isn't an easy area to read).

On a good note I am pleased that she has raised enough money for the treatment and hopefully the fund will continue to grow to help towards others who run a little short. No one knows what treatment does actually work but having hope is a key factor to keeping going.

I would ask anyone though, who is going to Germany for treatment to ask their oncologist here to give them a kidney check to ensure they can cope with the toxicity of chemo. We take everything for granted that who we see will do what is necessary but it isn't always the case.

Looking forward to Saturday and Helen and Barry are calling in on their way home after Take That at Sunderland. Will be lovely to catch up again and also pick their memories about what Claire Cameron had to say about the Journey of Life.

I haven't heard back from Andy Hughes yet regarding all the research I gave him but I guess there is no hurry as yet. At least if I think that maybe my friend won't want to grow.

The clock is ticking so had better get a move on and go to work.

Mesothelioma and life

2011-05-22T18:29:00.000+01:00

I heard today that another brave person has lost her life to this cancer. When you think you are safe and have recovered from treatment it seems to come and bite you in the arse. It seems the routine is treatment, recovery, treatment, recovery. Some people are lucky and aren't affected by it for years yet others it just doesn't want to give up.

I have tried my hardest not to think about my friend this week, I thought I had actually put a few lbs on as well only to be so disappointed when hubby brought the scales into the bathroom this morning and I stood on them. Instead I have lost another 2 lbs. I was sure I had hit the 9 stone mark or is it because I have finally bought some jeans that actually fit!

All in all I do feel better, I have tried to ignore the morning body blues and pushed myself into spuring myself on. It seems that if you don't think about the cancer someone else always brings it up. How can we escape from the knowledge that we have it when others keep asking you. Iknow I said I felt like hiding my head in the sand and I still feel like that. I don't need to arrange my scan till June and then I guess I have the soul searching to do. I can only hope and pray that those pin heads are stable and the new nodes in the right lung aren't dangerous.

Dr Abtin not only has a fan with me but also with Linda who has just lost her sister. Wish we could get him here and do the business. Much like Debbie wishes she could get Prof Vogl to do his work here. Strange but after everything I have been through I don't think I could have someone feed a tube up my main vein from the groin to my lung. I also heard from Cher, she is flying out from Oz to Germany again, staying 6 days to get one treatment. The guts that lady has flying that distance for treatment is outstanding, I think for miles travelled Cher must win hands down. All we can do is hope and pray that it works and keeps on working for her.

Debbie is also having to revisit the route of Prof Vogl and I would ask you to visit her blog - support is an amazing thing.

I have finally downloaded my camera and here is a picture of Helen and I having lunch in LA, Helen looks so well I am so jealous.

Looking forward to seeing them in May when they come to Sunderland for Take That.

Time to log off, dinner is out and yorkshires are getting cold.

Jan

Glitter Ball

2011-05-15T17:39:00.000+01:00

Having taken weeks to get the new tablets in my system (still only on 2 a day ... just can't seem to pluck up the courage for the 3rd one) I know that the pain relief seems to outweigh the side effects but could it also be that I am recovering normally?

I don't feel myself, could bite someones head off for no reason so am constantly on my guard not to get slightly miffed with anyone... thing is I'm finding you don't need to be miffed to feel like biting anyone's head off! Paradox in itself that sentence, so I daren't take no 3, my God I could become a time bomb!

So what's happened over the last few weeks, have been full on at work, that's once I've taken an hour and a half on a morning to feel like going, then its in the deep end, but concentration is failing badly ..could be the tablets.... normally I would have between 3 and 4 jobs going at once on my desk and computer I seem to find it hard to deal with one, but shouldn't complain as I still work and it nearly meets what normality is!

For the first time in months I had two events on for one day (yesterday), one the Point to Point for South Durham (sponsor table etc) then Mick Knighton's Mesothelioma Glitter Ball. I didn't dare sit still from coming in from the Point to Point to getting picked up at 7 by Lorraine for the Ball. The Assemble Rooms at Newcastle were done out with such glamour and the place was heaving. I think now there are more sponsors and guests than ever before and probably less of us cancer lot, but that's what brings the money in and helps the charity raise funds.

Chris announced that the charity has reached £1,015,000 since starting in back in 02, that for 2 women and the amount of awareness that has come to the forefront is amazing. Chris has probably done more for mesothelioma than any other person or organisation. The good thing with the MKMRF is the money all goes to research, no fancy offices or cars, no high expense bills - all to the cause. Hats off to Chris and Ann for achieving the goals they aimed to fulfill.

Went to see Andy Hughes (Oncologist) Monday, will be doing nothing until my scan in June. Decisions will then have to be made. He actually was on about trials and I left him all the material I have recently gathered for him to read through. He said he would facilitate any introductions I may need should I go that way. I said I really needed someone to bounce ideas around with. The problem is am I 3rd line or 1st line where treatment is concerned. One thing that we both agreed on was that I could never take Alimta again, it was the choice of do you die from the Alimta or Meso and in my case it would be the Alimta! Have also been back in touch with Dr Gilliams at the London Clinic and should I need to I can still have thermal ablation on any singular tumours that are under 3cm but over .5. So if one of my 15 pin heads decides to grow individually then bye bye with ablation. At least its in England, no 11 plus hour flights and hotels far away, its one night in hospital as its under a general.

The headaches seemed to have cleared again since the cryo - so hopefully the cancer has retaliated for a while, although my kidney area has bad patches of pain that last for 2 hours at a time. Have also been having sharp hot stabbing pains in my shoulder blade, especially near my scar and left breast ... hope its nothing but you never know. One really good thing I can't feel that pea in my back anymore when I lie flat and my breast is still not causing any pain when it touches my rib .. long my that pain stay gone for good.

Met up with Chris Scott at the Ball, I was diagnosed a week before him. He was looking the best I have seen him in years. Since 2004 he has had 2 lots of chemo cycles, suffers no pain at all, same as Colin no pain. I am still wondering what extent of meso they had on diagnosis. When I think back to the 2 curtains hanging off my pleura and the 20 plus smaller bits Andy Owens removed I guess I am lucky to still be here. It seems a lot more people are being diagnosed a lot earlier (a fine thickening and maybe a nodule or two sticking out).

My Oncologist said I seem to have done treatments in the totally wrong order. Maybe I should have had chemo straight after surgery again - but would it have mattered? That's back to the problem with mesothelioma - it doesn't do the same in anyone person and no one can tell you which way you should go. Yes we have the standard on diagnosis - either surgery or chemo. Most go for chemo then its wait and see, what else is there we can do. Surgery is a large undertaking if you have only a fine thickening, but then it hasn't got to grips with the lung so to speak so maybe surgery should come first then chemo second. In a way that is probably how mine went as Andy Owens just about stripped my pleura the first operation in 2004.

After having such a busy day yesterday I have spent all day lazing around watching tv. I haven't had much energy and any energy has been zapped trying to brush our Bear. I feel like I have wasted a day off, but then what are days off for but to sit around and do nothing.

I have missed a few weeks but my moods swings have become apparent even to me and its best not to write when feeling irritable. Sometimes this cancer leaves you feeling its you against the medical profession and they don't listen, or its you against family and friends and they keep pushing and pushing with ways to cure you, or some times you just feel like putting your head in the sand and ignoring the whole business. Work has kept me occupied and more so these last few weeks because I really want to crawl into a hole and forget mesothelioma. The wish to wake up without hurting or feeling yak is so deep now that I hate going to bed because I know in the morning its bad, but then the morning has gone and your occupied with other things. Frustration at not being able to do stuff bugs me as well. Why should going out be so tiring, why can't I be bothered to do anything when I finish work. Come to 4pm and I want to close my eyes, but I won't let myself do it. For no reason at all one morning last week I felt like going into my tablet cupboard and throwing them all in the bin - I know that's the Gaberpentin causing those irrational thoughts - but that's how I felt.

Sunday Roast is in so guess I had better get myself in the kitchen, poor hubby has been the sole chef for the last 6 months, I just can't be chewed with it! I have also managed to hold my weight at 8st 10, so I finally went out and bought some new jeans - 4 pairs to be exact - watch me start piling the weight on so they don't fit! That was last Saturday and I was worn out last Sunday too!

Enjoy your dinners and no doubt I will write a load of dribble next week
Jan

Coming along after Cryo

2011-04-30T08:00:00.000+01:00

It's been a couple of hard weeks for me, I started Gaberpentine to help ease the nerve pain, infact part of me wishes I had tried it again earlier as some of my other aches have eased, but the other part of me isn't getting use to it at all.

On a morning each joint in my body aches, I am either over tired or can't sleep, irritable, headaches and that's just on 2 tablets a day. I thought if I waited until one settled down before lifting I would be better off, when the symptoms settled after 2 weeks I lifted them, only to find the symptoms much worse. My brother said I should try and get onto the 3rd one in the allotted time scale of 3 days but its been over a week and I am still struggling on 2. He said he went through the same and it was months before he settled down with them, and if you miss one you know about it. I hate having to take tablets at the best of times so I just don't know how he does it.

I have finally managed to get an appointment with the oncologist so hopefully we will be able to have a good chat and come up with a plan for the future. The USA are pushing Interferon as a daily injection that kicks the system into gear and makes it fight along with starving the nasty cancer. I still don't feel like I can face chemo yet but as I am unsure whether the cancer has continued growing since April I hope that's a decision I don't have to make until the next scan in June. So if June looks stable then no chemo, but if not then I will have to take it on the chin and start chemo asap, problem is which one?

There is also the Adam's trial but I don't think I am eligible because of having previous treatments.

To be honest I still keep having flashbacks to my hallucinations in LA, I don't know why medication and me don't go together but we don't. I have been lucky that the MST doesn't cause me any problems, but I think in the early days it did but the pain made me stick with it, but that's way back in 2004.

Bear looks to have developed wet ecemza so we are trying to get a vet's appointment this morning. In our household if anything goes wrong it is always a bank holiday weekend. Just hope we can get the little fellow in. I would hate the stuff spreads, but he has it in an unusual place, just left of his mouth. I thought he had been eating pooh and I was trying to comb it out because it was all knotted, I ended up having to pin him down and then saw this bright patch of red skin.

Open day for houses today, so had better get myself moving, I doubt anyone will come as we haven't furnished them out, don't try won't know.

Hope you enjoyed the royal wedding, must admit I had a few tears in my eyes ... I wish them all the happiness in the world.

Recovery from Ablation

2011-04-17T19:30:00.000+01:00

How wonderful it was to arrive through the front door of our own home and be knocked over by an overgrown Newfoundland. The flight was hard going as my left boob wasn't pleasant and I am sure other passengers thought I had a thing for it as I had my hand underneath it most of the way home.

The tumours were a little larger than I expected and when I read the report I was surprised that the probes had gone in some 10cm into my chest .. no wonder I hurt! In my body build that's half way through. I have been resting since returning home. I drove to the doctors last Tuesday and realised that was a bad idea as the pain in my left side wasn't nice and the driving seemed to aggravate it that little bit more. As it is when I put my left arm by my side I feel that I have inflammation in my chest and my arm buckles out over.

It was great to meet Helen and Barry, they were out in LA for a wedding and also took the opportunity to see a Cancer Consultant out there. Hopefully on there return they will give me a good run down of what was proposed.

I promised hubby and myself the night before the procedure that I would be taking time off treatment, at least 3 months before I think about starting chemo again. At the end of the day the procedure was evasive and your body can only take so much damage and interference at any one time. I do wish that we could get cryo started here. I took the opportunity about asking whether Thermal would do the same and yes it will but could damage and be more painful than the freezing. But after all the carry on with finance in the States I will be looking up Prof Lee's again in London to see if they can take out any further tumours. I will, of course, still send my scans out to Dr Abtin as he really does care. He did mention that I have three nodules on the right lung, one I knew about but if I have another two that have appeared I now think they may be more than just nodules, but I really hope it isn't the meso.

As for how my lung looks now I will have to wait for 3 months for a scan to see how the lung has settled and if the tumours have indeed gone. Unfortunately I have had to resort to further pain treatments and have started Gabapentin, although I am only taking one tablet a day at the moment, this needs to be lifted to 3 but I am going to take my time. Last time I was on them hubby was worried for his life....

It's the Mick Knighton Ball in May and I will certainly be attending. It will be good to catch up with a few faces and hopefully meet some new ones. We are making it a girls night, which will be nice for a change.

Finally my emotional state has sorted itself out and I feel back to normal. I frightened myself being so upset about treatments etc. On top of which I dropped more weight in the States .. how you may ask when the portions are so big .. and that's the reason, far to much food on the plate!

I know I knock the NHS for lacking in providing doctors that care, and money where it is needed, but after been back in the States it makes you realise how lucky we are that we do have a health system that tries to help. I was speaking to a meso friend today and they were telling me what a fantastic set up they have down in Sheffield. A good oncologist who works alongside their own GP, everyone is kept in the loop and any problems talked over as a team. Why can't we have that country wide?

I am still waiting to see my oncologist, yes I know I have been in the States but I emailed as soon as I was back to arrange an appointment. I need some help and advice on what I should be doing, how to build up some body mass for the next round of staying ahead of this cancer.

If we don't stay one step ahead we all know what can happen and lets face it meso doesn't wait for anyone. I don't know about you but sometimes this just doesn't feel real. On a normal day you do forget you have an ugly cancer encroaching your lung and sapping anyway your very existence, but on a bad day it can get you down. After the emotional turmoil I have just been through I think I have never really given myself that time to fully evaluate exactly what I do. Since 2004 I have gone through treatments, gone through scans, gone through more treatments, worried about dying, come through the surgery and thought that was the end of it. Suddenly the meso is back in your face and its back to treatments. Will the chemo work this next time, and if so, for how long will it hold it back. How long can the growth be controlled. I know that I am 'luckier' than some as I am still here some 11 years after the first really bad signs appeared, but I'm sorry 11 years isn't long enough ..

I realised another thing when over the pond, I need to take better care of my body, I keep expecting it to bounce back as if I have had a finger nail filed instead of the devastation I have put my body and cells through. I owe my body an apology for expecting too much because my brain and emotions expect more. I also realised that everyone around you expects more. Your family want you to keep taking everything going, your friends are the same, but sometimes you just need to say ' stop I need some space and time from this ', and that's something I have never said, but now I am thinking it. If the meso stays slow growing over the next few months then why not enjoy the sunshine and life, why rush into another exhausting round of chemo or whatever else you can find. You see I am in a mad circle, one minute I want to stay ahead, the next I want a break from it all.

On that note I will close. For once I want to hide my head in the sand and let someone else make decisions .. problem is who!!

Cryoablated and home

2011-04-06T22:25:00.001+01:00

I know that when I get home I will probably want to write a novel about what happened during my recent visit to the USA. I was going to wait until I got home to start but as the airport has a computer and I have several hours to spare I thought I may as well start now. During the last 10 days I have been through seer panic attacks, highs and lows but at least I am returning with less cancer cells than when I arrived.

I also didn't realise how the death of my mam had affected me until the day we were flying from London out here. The adrenaline that cruised through my veins was terrifying and I was unable to settle. When we boarded the plane I partly wanted to step straight off. We arrived here on the Sunday and I had the worst sore throat I had had in years, my nose was blocked and I feared a chest infection taking over. To make matters worse the weather wasn't that great either so the story I had told myself about it being a holiday went straight out of the window.

The Monday morning Gary and I went down for Breakfast but I just couldn't settle, my insides were in turmoil and I worried about whether I was doing the right thing. I felt like if I turned around and came home I would be letting everyone down, was it me pushing myself for treatment or was it the fact that everyone around me seems to expect me to keep going and if one thing fails then it is my duty to do something else. We went over the UCLA and met Fereidoun. Instead of spending time closed in his office/reading room we went out into the court yard and had a coffee. I told him I was nervous and full of cold, he said I had nothing to be nervous about and over the last 12 months they had done over 55 procedures and had managed to get the sedation etc right. It was great to see him again and he also mentioned wanting me to meet the famous Dr Cameron. We decided to go and pay for the treatment then rather than have something go wrong in the morning, I had settled myself down and started to feel a whole load better.

We went down to the reception area and said we were there to pay for the treatment the next day, she pulled up our file and didn't look at us, instead she directed us to another department in another building on the complex. On arriving at this other building we were told that we owed thousands of dollars from previous years and that if we didn't pay we couldn't get tomorrow's treatment. After several hours of phone calls between several different offices they agreed to honour the price quoted and that my treatment on Tuesday could go ahead. They quoted something like the procedure should cost us $50,000 which is absolutely bizaar.

That night I was again an emotional mess, never have I felt like this, I couldn't sleep and just wanted someone to say this is the right decision, you will feel better, it will work and hey you are losing billions of cancer cells. I was worried about the thickening, and decided that I will defer any treatment, after all this is the 9th line of treatment in less than 6 years and although surgery was 2 years ago I need a break. The pain hasn't got better and what am I doing with my life, chasing down the meso instead of enjoying the time I have. That was my decision on Monday night - no more for a long time......

Tuesday we arrived about 5.30 and checked in. The nurse was marvellous and needles went in without any problems. I was wheeled down for the procedure at 7.45 and had my first CT scan by 8. Fereidoun said he had suffered at the hands of the admin department and that he was not allowed to treat me further unless I went through International (a way to make more money for the hospital - rather than treat a patient) so instead of doing his proposed plan of one procedure every 5 days he was going to do 4 tumours all at once.

His team started by numbing my left breast, the needle for that was painful, having lost so much weight he was hitting bits of grizzle and of course rubbery muscle. I was fine though and had no problems with the sedation or the probes. At 10 they were turning me for the ones into my back, this is where I went off the deep end. I started having crazy hallucinations about time and eternity and that life was being replayed like groundhog day but it was around a 10 minute event that was speeding up everytime it replayed in my head. I think (Fereidoun is to polite and confidential to tell me what I actually did) I was swearing and calling everyone F*** B**tards and that they had to stop, I also remember kicking my legs behind me trying to pull out one of the probes (been there before!).

I can't remember the first time they tried to bring me back from the drugs but the second time Fereidoun kept asking me if I knew who he was ... I couldn't get warm and I wanted this nightmare to end. I remember begging the nurse to take away whatever it was they had put into me as it was driving me mad. I was told later that I didn't know who anyone was and I was in a really bad way. They had to push the limit on the drugs to calm me down and then reverse them asap to get them out of my system ... cold turkey big way comes to mind.

I was finally admitted onto the recovery ward (guess I was still swearing for quite a while) and a nurse called George took charge of me. He tried to ask how I felt but I couldn't verbalise the feelings very well, I said it was like adrenaline but 30 times worse pushing through the body. He told me (in no uncertain terms and in the voice of a school teacher) to lie down and sleep. I awoke around 3pm and felt warm. They had put socks on my toes to help keep me warm and every 20 minutes they had been changing the blankets to warm ones. Its amazing they heat all the covers up in a big oven!

Gary was finally allowed to join me and I just wanted to sleep, but this was a problem as my bp was crashing, I was unable to get it over 80 and at some points it had been 72 over 53 I believe. The Xrays showed that no damage had been done to the lung but I still wasn't allowed any water, my mouth was dry then I remembered being sick and bringing up blood, I did the same again before going back to sleep. I was in and out of consciousness until about 6pm and had another xray. The nurse fed me water, an ice lolly and a yogurt, all with the hope of getting me going. Blood pressure did reach 103 at one point but then dipped back into the 90's yet again. At 7.30 Fereidoun came to tell me that the procedure had been a great success, I was sheepish and apologised for any terrible behaviour that I may have displayed, he laughed it off, but I am still embarrassed. He released us from hospital but said anything happens to check straight into A&E. We arrived back at the hotel room and I went to bed.

Enough for now, I will carry on when I get home. I am still not sure where my feelings are and in what direction I want to go all I know for sure is that I can't wait to step through our own front door and collapse on the sofa with the mutts. Just wish the flight didn't take so long and combine that with airport time and connections we will be travelling for around 18 hours! Ever wish we could say "beam me up scottie"

A lost meso warrior at the moment

Count Down

2011-03-25T20:07:00.000Z

It has been a difficult time for the family, losing mam doesn't feel real and I have noticed the smell of gas in mam's house with no one been there. So you know how your mind works, has mam being getting a daily dose of a silent killer? Yet if she was on her oxygen mask would it have penetrated her breathing? The recorder hasn't registered anything when it is plugged in .. probably me looking for a guilt trip I could do without.

I never really discussed my cancer with mam, I guess she didn't want to think about burying me and I was sure I would go well before mam. It has kept the whole family away from talking about next week. Eldest brother has this idea that my troubles will be over once I get the tumours removed, my other sibling hasn't really said much, he knows this isn't such an easy journey nor will it give me outright remission. Hubby hasn't said much either, apart from he hates the US and isn't looking forward to a minimum of 14 days out there.

I did get some cheerful news, B & H are out there for a holiday so hopefully we will finally meet and catch up for a coffee or something.

Thanks to a lady called Julia I received some information on the Adam's Trial which is being headed up by St Bart's. I have 68 pages to read and digest - had hoped hubby would have read it already but time hasn't been on our side these last two weeks. I am dreading tomorrow, I have nothing ready for going away apart from buying a jar of coffee and some coffee mate, my prescriptions and of course some elma cream for the needle in my hand. We are both going to miss the mutts like crazy, the vet is scheduled to call 3 times during the second week to ensure Lexi hasn't any bum problems getting too out of hand.

At least it will be 3 months since my last scan so we will be able to detect how much the thickening has grown over that time. Hopefully its minimal which means I can hold back the chemo for a while. I'm really not ready to think about that yet. I also hope that Dr Abtin can do a little magic and give some pain relief when removing the tumours, it would be nice to wake up on a morning without feeling like I have an iron cage inside my left side, or even when I lay on my back and he gets rid of the feeling of pea's under my skin.

I don't feel nervous about the procedure, having been there before, and this time he isn't going anywhere near my aorta so no need to sign a 'rip my chest open' form. I have downloaded plenty of fiction on the Kindle .. what a nightmare that was .... so as long as the sun shines at least we can sit out and relax. If there's no sun this will make the whole experience even worse as I hate travelling these days. I am becoming my mother's daughter I fear.

If I can get any published literature on cryo and how it is used in the States I am bringing it back in the hope we can get some of our consultants interested in performing it over here. Freezing bulk must be better than radiating, we are freezing more and more cancers maybe in another few years some one will try it in the UK for meso.

I am totally wrecked and although I will be having treatment I am sure I can treat it as a relaxing time, I remember not having much pain due to the procedure and having less pain than when I went out, so on that bright note I will close for tonight. If we have access to computers in the States I will update on progress, good or otherwise.

Research is worthless unless it is shared.

Jan

Radio Frequency Ablation

2011-03-18T12:13:00.000Z

How can I forget something that I researched and yet I did. I received an email yesterday from a gentleman that included info on RFA.

I guess because I have been dealing with Dr Abtin since 2008 it was only natural for me to go back for cryo but for anyone else who have nodules this would be an ideal way of blasting them. Strange again though how none of the medical profession have mentioned this.

For updated information please visit their website

http://www.rfablation.co.uk/patients.php

I am pleased to see Prof Lee's is still involved.

I would also add that previously anything over 2 cm were untreatable, this has now changed to upto 5cm. You all know that I believe in debulking, and by treating any cancer nodules, not only are you debulking but giving some pain relief at the same time.

Who knows, my next visit on regrowth may be back to RFA if they will have me.

For my own health at the moment, I don't know whether it could be classed as a natural thing, but occasionally I dream that I am vomiting badly and I wake up with a very dry mouth. Part of me believes this is my body trying to dispose of the cancer, as I had many of these dreams before I had surgery. My first recurrence of this dream was about 3 months ago, and then I have had two or three, the last one a couple of nights ago. I am sure though that this would be explained away by saying my mouth is open during the night!

Keep safe and keep fighting.

Testing times

2011-03-16T19:58:00.000Z

It is nearly a week since mam died and I have no idea where the time has gone. I keep thinking I have ages to go before my trip across the pond so have put all thoughts of organisation to the back of my mind, but then this evening I realised its a week on Saturday when we fly.

I am starting to get nervous, John Edwards isn't sure how Fereidoun will get in to cryo, I can only hope the probes will go and knock down the tumours like skittles in a bowling alley. Paul Taylor from Manchester rang to say that his department think I have a very slow growing meso at the moment, but also pointed out that I have a nodule on the right lung, unchanged, but nevertheless one there. I have noticed this previously and believe him when he says it hasn't changed in shape or size. It's bad enough having it in the left without the right joining in! Itis good to get lots of opinions on the state of ones lungs, some pick up things others haven't.

The only problem is the mesothelioma itself, hopefully it remains slow but then it can change, or it can stop. In the states they go straight in and use chemo to try and keep it back, do we hold back in England just in case it doesn't speed up, or hold back because there is no other chemo's out there?

Why is life full of decisions, I can understand why some patients want to be treatment led but I can also understand why some, like me, want to make their own decisions. If it was a water infection then I would be treatment led because water infections all seem to work the same, meso doesn't seem to follow the same pattern in everyone until it takes control and even then it can be different in each case.

The pain in my heart is still there and feeling heavier, I am hoping this is the one that will really get blasted and go, maybe then I will relax a little. I have noticed recently how my hip bones are becoming more pronounced and my left one gives me strange sensations if I catch it by accident. I need some weight on this area badly.

British Lung Foundation have been campaigning recently about COPD, my mam had this. I remember some 20 years ago being at hospital with her when the Doc was reviewing her xray and he said she had calcium lumps in her lung. I have wondered since her death on Friday whether to ask the crononer to investigate, who knows she may too have had mesothelioma, yet the thought of postponing her funeral isn't in me. As one of my brother's said, what would be the point, there is nothing that could be done if she did have meso. What is COPD? most elderly people seem to suffer from this once they get to 60 suddenly they have COPD and it was classed as normal for people of that age, but why - it's not a normal condition, we aren't born with it so why does it happen?

With mam dying I must admit I haven't had time to put my own fears in place, I guess once I am on the plane then I will start to panic about the days ahead.

Keep the spirits high

Life's limits

2011-03-12T18:53:00.000Z

Here I am coming to terms with recurrence of this dreadful cancer, I have managed to dust down my armour and get the battling spirit to 100%. All plans set for the next month ahead and then out of now where my mam dies yesterday.

Watching her in A&E struggling for breath was a nail so deep in the heart it brought home what we all may suffer in time to come. The thought of losing our mam was bad enough as we sat by her knowing that she wasn't going to pull through, her body doing what it had to do to keep alive, trying to drag in breath to keep her heart pumping.

We don't know whether she knew who we were or not, she had collapsed getting onto the mini bus from her day centre. The paramedics had worked to get her a heart going for some 20 minutes and we were told on arrival that she still wasn't breathing on her own. We sat for a good 30 minutes before we could see her and by then a miracle had happened, mam was actually breathing but was unconscious and if she did awake she could have suffered terrible brain damage. In that desperate hope you have we were willing her to come through but also knew there was very little hope if any. God bless her, she tried to come back and considering her heart was bad battled all night till 9.30 the next morning.

I felt for my husband because this is what he will have to deal with if the meso gets it's way. I also know that watching mam affected my brothers badly also. I hope that should I get to the point of struggling for air that badly then my nose and mouth accidentally gets covered over.

It has made me question why do we live. What are we accomplishing in life, as I step into another battle ground with meso I have to ask myself why. But I love life, I may not do what I should be doing, I do moan about pain but the joy of stroking Lexi and Bear, being hugged by my hubby, feeling the sun on my face, these simple things give me so much pleasure. Why do we have to complicate our lives, we bring in stress, guilt, the need for better things .. yet once we die our possessions are gone, what caused stress is no longer an issue.

Death is a natural part of life yet it affects us so badly, no matter what age. My mam was 84 and had a good innings, I wouldn't say she had a great life, she wasn't easy to please but she choose her life. It was always a given that mam would outlive me - which I must admit was a worry as I had visions of my brothers putting her in a home if I wasn't around. I would like to die of a heart attack, during the night without even knowing - I believe that's how everyone wants to go but its a shame that not many of us do.

I wonder if over the next 100 years we can develop our genes to a state where we could go to bed one night when we are 70 plus and say tonight please. Yet if you are healthy and are active, you may not be ready till you are 100, in other cases it may be you are ill and wish to go before hand. No dying in agony just off to sleep and know no more. I think I've said this before, are we ever ready to throw in the towel and give up. I don't think I can ever see me doing that.

Bear is doing his barking of 'come play with me' its a lone woof every few minutes, so guess I will have to close, before I do last night we put crufts on just to see if he would watch the dogs. He sat in front of the TV and watched the working dogs parade around the ring with full interest .. I totally believe they enjoy TV, but only when its another animal on 4 legs. The woofs are every minute now so better go and have a play fight.

Hope for Some

2011-03-08T07:52:00.000Z

Remember when we went on our chemo's, we always had a kidney test to ensure that we could cope with the toxins produced and our kidneys wouldn't fail - it's one of those things we don't think about again. I remember when I went back on Alimta the 2nd time and had to spend a day up at Newcastle having them checked again and it was only then that I remembered the first time.

Why am I mentioning this, one of my meso friends has had kidney failure - was it the chemo or was it the contrast - he isn't sure but he has been out to Germany and like Alimta, the chemo's in Germany work for some and not for others and affect each person in different ways. Maybe Prof V should look to see how toxic his chemo's used are and decide whether his patients should undergo the kidney test beforehand, just to rule out any possibility of the kidney's being unable to deal with the chemo working it through the system.

No treatment against mesothelioma is 100% safe but hopefully there are some safety nets in place for all treatments. It's back to seeing which treatment can accomplish what. I know that cryo-ablation will not remove thickening or reduce it, but it can take out individual massess and take away pain where the mass is pushing on nerves. I will ask why the probes can't be inserted in to thick mass when I am there.

We know that chemo can reduce individual massess and the thickening, but with a lot of side effects. If we were dealing with a normal cancer then removing that mass and we would stand a better chance of being cancer free, but we have thickening, which is hundreds - neigh millions of cancer cells all stuck together creating a beans on toast affect around our lung.

Surgery and take it all away but eventually it does return.

If you are ever in doubt about starting any treatments, research and research again. Visit as many forums as possible, read personal blogs where the writer has experienced first hand the downfalls they went through. I know several people who have had no problems with side effects from Chemo, and I know several who have suffered as bad as me and a few that have suffered much worse.

Trials can also leave you in a worse state than you started out, if it did manage to kill the meso then it is worth the suffering but if you had no positive results, your quality of life can be ruined.

One thing I do know, if your kidney's fail due to one chemo you are unable to ever try a different one and that rules out the only main treatment we have.

I had made my mind up to have chemo as soon as I come back from the States but I have been thinking and if my thickening seems stable I may withhold for a couple of months - sometimes meso can just stop for no reason. As long as I get these massess taken away, as much do to do with new pain as well as debulking, then take a few months out to get a little stronger before the grueling 5 months ahead. My luck the thickening will be twice the size again and I won't have the luxury to decide.

Keep fighting and good luck to everyone

Dates for Cryo-ablation

2011-03-02T09:14:00.000Z

My date has arrived and flights are booked, 4 weeks and counting. I am a little nervous, aren't we all when we are having something done. I will need another full scan out there before he starts but at least he will know for sure what he can reach and what he can't.

If cryo-ablation is something you are considering but aren't sure whether it will help if you contact me on jan@jansjourney.co.uk I don't mind taking your scans for Dr Abtin to review.

My GP rang the other night to see what was happening, I told him that I was advised to go on chemo by everyone, including Dr Abtin. I also said that going to the USA probably wasn't going to be viewed as a good thing but as a good doc he reminded me that its my body and my life. I guess he will be busy over the next few weeks trying to find out what Chemo I can have etc. I am still waiting for Andy Hughes to see me but I haven't heard anything yet.

Hubby really doesn't want me on chemo again, he hated watching me go through suffering the first time so when I told Dr Jose (GP) that chemo was next on the list after cryo hubby's face dropped a mile. I am hoping that this time it will be different, but not sure about my yak stomach. If it use to go like a boiled tomato then what will it be like now considering it feels awful every morning as it is. Maybe another Chemo won't be as bad as Alimta and Carbo mixed.

Others get good results with the Chemo, Chris S and Colin have done well so maybe I will do well this time. Can only keep my fingers crossed and hope my time isn't up!

With that Cheery note, and another quick one, Debbie and Cliff have both back to stable so Well Done, it always makes you feel good when others are doing well.

Jan

Fighting spirit

2011-02-26T10:06:00.000Z

The sunshine has helped restore my fighting spirit and out of the shock I have emerged back to how I usually am, determined to get the most out of life. I am concerned that my stomach yak feeling isn't going to go now, unless some wonderful doc will put a camera down and see what is causing such a dreadful feeling, and the worry of taking chemo on top of this isn't a nice thought, especially if my insides open up like a boiled tomato again. Hopefully I will find a chemo that suits.

I haven't a date yet for the USA but I am confident that the cryo will get quite a lot of the nodules, hopefully this will bring some relief to the pain that has been getting worse.

I hope that they don't just get a couple of day's notice otherwise will have to turn it down, you have so many forms to fill in now before entering the USA. I am also not going through the international service, why pay out more for someone in a department to do the paperwork - and lets face it hospital's do like to buck up the charges.

The week has flown again, although last Tuesday I felt rather under the weather I have kept myself going, I now have a face full of cold sores and look as white as a sheet, will have to get myself in better health for the battle ahead.

I can understand why we do give up, the pain and the drugs and the awful feelings are so very wearing and the lack of treatments doesn't help either. Sometimes you do wake up and wonder is this really all worth it but then as I keep writing, once you are up and moving around you do improve -its just a shame we have to sleep. On that cheery note I think I'll go and get ready for another day.

Jan

Digesting Info

2011-02-22T08:50:00.000Z

I have read so much over the last couple of days I seriously don't know how anyone keeps up with what is happening in our meso treatment world. This Gene therapy sounds so good but seems we are in the wrong country for it!

I haven't managed to speak to Dr Abtin yet, I kept missing him yesterday so hopefully today I will manage to talk to him. Time zones are a nightmare when you want to talk to the otherside of the world aren't they.

I still can't decide whether this pain in my heart area is cancer itself or just my mind making an ache more painful, but I did find the use of some morphine good at getting rid of it, although it took nearly an hour to go. Had such a bad night Sunday I don't think I slept more than 3 hours, I couldn't get comfortable and my ribs ached more than normal, my scar tingled etc. So last night I took a pill and woke up feeling much better today. Might even get something done instead of sitting in front of the computer all day.

The weather here is awful, the snow was quite a shock yesterday but this morning its grey and misty, no snow left but very cold as well. Even the crows have landed on the front garden to eat the seeds along with my little sparrows and blue tits and black bird... things must be bad for that to happen.

I have put quite a number of links on the Treatments blog and a little of the write up, Linda should be employed as a meso researcher for all support groups a few links from W Szymanski who is doing research for his mam.

Thanks again for the links

Jan

No right or wrong way with Mesothelioma

2011-02-18T18:03:00.000Z

Strange how when faced with the dilemma of what to do before didn't seem as bad as this time around, maybe because I always knew there was surgery in the back ground, but now after having surgery and a break of 2 years that door has certainly closed. Shame we can't just go back in and cut the blasted stuff away but then, as proven time and time again, mesothelioma just doesn't give up! Apparently I am one of the longest living up here with this disease, I know a fair few who are still going well around the country and up here, but again this disease doesn't run as statistics say. Our ages need to be taken into consideration, when it started and what age, etc etc. A national database would be helpful for us all to query who had what and when.

Yesterday was a fact finding day at Manchester with oncologist Paul Taylor. I will say what a beautiful cancer lounge they have, very relaxing looking out into gardens. I nearly had a heart attack when they took me to the lounge I found myself saying I think you have the wrong person, but they only wanted my blood.

An open and honest person is what I like and that is what I got although current options is what we are looking for and the golden bullet Alimta was the first on the list, followed by two other chemos. No trials at present in Manchester but that's not to say there aren't any in other places. We discussed radiotherapy, but that is mainly used for palliative care. We did ask the question of why can't the tumours be blasted to debulk but the answer always seem to be the same, it's not used on meso patients for that. To my mind debulking what you have means less cancer spreading so slowing down the growth rate.

Today was my visit with my Chest man, Dr Abbassi. I found out that I don't have an MDT team which in one way means I can do what I want to some extent, like finding out who is willing to do what and maybe picking my own treatments but the otherside of this is that no one is really monitoring me....nothing new there then. I am a wild card but still need a good ear and reasoning to help me out. He did tell me that the radiologist and himself were available to me at any time.

My next port of call will be my old oncologist Dr Hughes, Paul Taylor was going to write to him with his thoughts and any options, as will Dr Abbassi.

Dr Abtin has come back with a quick reply, he is having trouble getting the scan to load on their system. He seems to think he can get a couple of the tumours, which will halt their growth. One thing I have learnt is that too much radiotherapy now can reduce its effectiveness later, at least cryo isn't in that vein so therefore can be used several times. Paul Taylor didn't rule out cryo either.

So here I am thinking all those new pains in my back and side, heaviness of heart, more breathless was down to my body coming back to life after surgery .. oh I wish. I also wish I wasn't as in tune with my body as I am but then in many ways it has kept me alive, I kind of knew it was back because my neck keeps getting a slight stiffness together with my chinaman back in my left armpit, thankfully he hasn't started using his blunt axe yet! My hair has started coming out more in the shower, and my finger nails have been splitting, all symptoms of my previous meso history. Have also started getting those rotten headaches back, although at the moment this could be down to over thinking. I have to remember you can live with meso growing and still have a life, have done it before but I don't seem to be able to find that energy or more importantly that outlook. Also I am still a person and can have other things wrong apart from cancer.

The pain some of us suffer is unbearable at times but I would still prefer to be alive with pain than dead, it does affect the quality of our life but for me at least after 2 hours on a morning I do start feeling better. I would like to wake up feeling normal one day!

So my future plans, if Dr Abtin comes back with a yes I can do them for certain then I will be off to LA for a couple of weeks, (that's another thing I hate leaving the dogs! I am certainly becoming a home bod) then maybe start a round of chemo, but which chemo? I am hoping Alan gets good results on his vinorelbine. I also understand this comes in capsules - get in no needles. Dr Abtin also wants me to meet with a specialist at UCLA. Just wish I could have cryo in England but Dr Abtin carry it out.

Meanwhile hubby has been looking into some radiotherapy but that doesn't seem to be leading anywhere at present. There is also the cyberknife, but still haven't heard of anyone who has tried it, not that I mind being the first but sometimes it's best to stick to what you know.

On that note I will close this entry, once I have spoken to Dr Abtin on Monday I will know for sure my first step. I know that Andy and John probably won't agree but if this does work maybe it will show that it can help others who are in this same position. We know there isn't a cure, but if some of the tumours are removed hopefully some of the new pain will cease (like it did on my kidney 3 years ago), also debulking the sticky out tumours just leaves the thickening for the chemo to shrink. Just a layman's view on things.

Keep strong meso warriors, we are all battling together and hopefully all trying different ways to help others.

Jan

Mesothelioma Thoughts

2011-02-12T18:49:00.000Z

My CT Scan has gone astray en-route to UCLA, somehow it has managed to get lost in Belgium - don't even ask. All I seem to have done over the last couple of years is complain about the pain instead of trying to take a leaf out of Steve and Linda's book -do something positive! My positive is whether I managed to get to work all week and looking forward to waking up one morning feeling normal. Guess that dream will never happen.

I remember the first year I was diagnosed and after going through surgery, radiotherapy and chemo we spent weeks travelling, I think it was nearly one week in eight on holiday. Then you settle into thinking you have forever then it comes back. Another round of chemo that didn't work, a couple of cryo's that killed those particular growths then surgery. Surgery, in my mind, would hold back the disease for years and years. I had been put off early on from surgery because many died before leaving the hospital, others seem to have return within 18 months and invariably it always went to the abdomen. But I thought I had beaten it, that I like several others would have years ahead. It could be slow growing, it could take years to get to where it was back in 04 or even 07 but then again it could take a very short time. Maybe if tomotherapy had been available all the small microscope cells would have died at that time and I would still be living cancer free. But my hubby's favourite saying is "it's done you can't do anything about it", so guess I can't. What would I do if I could turn back the clock? I guess I couldn't change when I got meso as how would I know when it occurred, which Sunday shouldn't I have washed my dad's overall's or indeed my brothers overalls?

What I need to do now is do Something Positive - I am sure that fighting spirit will emerge, but oh how you get tired of fighting, but we aren't just fighting the disease we are also fighting politics which takes a lot of energy that we just don't have the energy for. I would like some one to wrap me up in a soft blanket and tell me this is what we are going to do and you will be better. A Pipe dream I know, how do other people deal with cancer, am I just lost at the moment? - Indeed how did I deal with it for all those years.

I have pulled an image off of where a couple of growths are - how can these little nodules do so much damage.

These are two starting, further down are another four and then this is followed by thickening. This is why I hope that Dr Abtin can cryo-ablate these two and the others further down. Or maybe this new fancy machine in Manchester can blast them so they can't release anymore cells. I remember once being told that 1 cm can hold 1 billion cancer cells, they open and spill out allowing another 1cm to grow etc and etc. Lets hope that one day someone can find something that stops that 1 billion cells flourishing. In the meantime, is it the cancer that kills or is it back to the toxins. This has always been my question from way back when, we can live without the lung why can't we work at killing the poisonous toxins that are spilled out into our blood streams and damage our organs?

On that note I will close this blog for the night and think about Something Positive to Do tomorrow.

God Bless you all and keeping fighting, don't become complacent like I did, always work on the thought that tomorrow may never happen, this doesn't mean go and be reckless, but say what you mean and mean what you say, treat others how you wanted to be treated yourself. Smile and the world smiles with you and if you can spare a penny, give it away.

New Info

2011-02-09T19:53:00.000Z

I am so overwhelmed by an email I have received today with lots of info on gene medicine and a new trial for a drug to be taken after surgery. Once I have digested it all I will post the info on the treatments blog but I would like to thank the person responsible for sending me it all.

I have now been able to access my scan and the nice crisp darkness of my small left lung has 4 nice sized growths and a little further down quite a bit of thickening. My friendly surgeon and straight to the point friend emailed me his thoughts on the matter as did John E, both rule surgery out and maybe cryo will not be able to get to it. I am still awaiting to hear from Dr Abtin so will keep you informed.

Going to go and crash on the sofa after a long day at work.

Thanks to you all for the wonderful support given.

Jan

Holding my breath

2011-02-07T19:44:00.000Z

It's been a week and although highly disappointed I knew I was on borrowed time, but like all of us, we don't believe it to be.

I have had some wonderful support from the meso gang and I thank you all for that. I guess I have had so many treatments over the last 6 years I had hoped it would be longer. Yet Debbie hasn't had as long a break as I have so I should be thankful that at least I had a good run of remission, albeit in pain.

I have sent my Scan off to USA and to James Cook, although I was given the wrong password, so I haven't opened it and had a look. I doubt I will be able to read it as well as I use to be able to due to the surgery, so on this occasion it will be totally in the hands of the professionals to tell me what they think.

In part of my mind maybe I should hold back for 3 months to see how fast it is growing, but then I have never held back once it was on the move. Only problem is that options are really limited. I can't take Alimta and to be honest nor would I wish to take it again. There is another chemo on the market so maybe that is for use a little later. I have been calmer than I expected, but flat as well. It's hard to explain your feelings when you get such an awakening, yet I have chastised myself as I have had different pains and some aches under the left arm .. one of my scars has been really sore hence I put everything down to my body still repairing the trauma of surgery.

Oh well, can't cry over spilt milk, it still begs the question should we do surgery in the very early stages, thus ensuring there isn't many micro cells floating around. Graham is going strong, how much meso was there on surgery? Cliff is under Prof V and had surgery early on ... wish this cancer ran in text book style instead of willy nilly depending on where and who.

Once I have some info I will let you know where my train of thoughts will lead me. For those considering surgery please don't be put off, we all have to make choices on treatments and for each treatment there are always negative and positive reactions, if I had done this would that have happened etc... problem is with meso we don't seem to have the time to totally deliberate over what we should or shouldn't do as it grows so erratic.

Another day ahead and another day down, only way is forward maybe with a T junction, Cross Road or roundabout thrown in!

Jan

No mercy Mesothelioma

2011-02-01T17:10:00.000Z

How often have I ranted at everyone insisting they get scanned every 3 months, how many times do we hear that the meso had started again because we werent' getting checked out every 3 months and had no idea how long it had been sprouting its ugly spurs, so how stupid was I to let my specialist tell me I was having too many scans and really I should only have one every 6 months. Infact, I wasn't even going to be given on after 6 months if I was waiting for my specialist I would still be waiting. A couple of weeks ago I said to hubby if I didn't have a date I was going to get back in touch with my old (privately paid) oncologist to see if he could get me one. Thankfully, my GP rang me on the lead up to Christmas and asked when my next scan was, I told him I hadn't been given one and he was non too pleased so it seems he organised the one I just had himself!

So my friend has returned, the areas that were suspicious and brought to my attention by Dr Abtin (USA) are now well and truly active... The fight will have to start again and I have lost round one already. Multi focal recurrent pleural malignancy\mesothelioma, what a mouthful but there we have it .. back and kicking.

To say that I am shocked would be unbelievable because we all know that our time isn't our own, we know we have a ticking time bomb inside our chests. Indeed, every new ache we wonder, even if briefly, is it meso, but we blindly don't think it will return. We are blinkered into believing we will outwit this rotten cancer. I have worn those blinkers, I have delayed doing a bucket list with my life and making the most of the time I have, I put its return in the far reaches of my mind so that I could carry on living a normal life. The pain, as you all know, has worn me down, but it is pain, it won't kill me but now I wonder if the adjustment in area's hasn't just been my body fixing and repairing itself, its probably being my friend rearming and posting little soldiers all around the chest so that it can come back as multi focal. Why not just one area, why does it have to hit the whole area.

What have I ever done to mesothelioma .. did I invite it in, have I done something over the last 2 years to stir the bloody disease back to life .. will I be able to build my army to fight back?

The support of my meso friends will bring me courage to face the next step and I know that I will do whatever I can to get back to a normal life, I'm not ready to do the bucket list.

Jan

Gaining Energy .. Just

2011-01-30T19:26:00.001Z

With the hint of spring around the corner .. well nearly, this week has flown. Its the last week of our main Company's final year so last week was a little of a nightmare, then I have been on site with the houses everyday as well. Although I don't call it resting on Friday I went with hubby to his sisters and had a hand in some decorating. I know that I will suffer from stretching but it was worth doing something different and I do enjoy getting stuck in.

I did suffer, this morning, but I refused to stay home and sit on the sofa feeling sorry for myself because it just makes you feel stale anyway. Out we went with the dogs and although it was colder today than yesterday I did enjoy our tramp around. I managed an hour's visit with my mam but as always she makes life hard for herself. Over the last couple of weeks her legs and feet have swollen beyond what the skin can take so they were weeping buckets as well as hurting. She refuses to walk unless she needs to go to the loo and no matter how much I moan at her to get up and do something she just ignores. Today was no different, I said come on lets walk around the house and get those legs moving ...

.. mind eldest brother takes no notice either, his head isn't getting any better and I think he looks worse. He had his staples out on Thursday and the nurse again told him he had to rest ... he needs to take a leaf out of our mothers book!

I heard from Linda in the States, seems her sister still hasn't had her radiotherapy, there goes my belief that things get followed through faster there than here.

Speaking of USA the solicitors have been in touch again, something to do with the American Government having a fund set up for people with meso which may have been contacted through the English ran companies. Maybe something nice might just happen, not that money can buy you health but hopefully will go to helping the cause.

Our new mattress arrived on Thursday and you sink into it, I must admit my ribs didn't feel as bad as normal the last couple of nights but I daren't say too much to soon.

Nev came through his surgery on Monday, although like me his bp falls drastically and he ended up staying over. It did affect his ms as his speech was still slightly slurred on Friday but he is such a strong person, he was in pain because he was in a grump all week. As for the results, at least 2 weeks before we know what is growing down there.

I had my scan on Wednesday, I am a little nervous but then I haven't really got any new pains, just my old ones getting worse! I only hope I can get my hands on the CT Scan as Dr Abtin is eager to review.

I hope Debbie's forthcoming trip goes ok to see Prof V, Cliff is doing ok and all we can hope for is static\stable results. I don't know how they are doing it again, but I know that when the time comes we all find that inner strength and fight it all the way.

Next week will be another heavy duty for me I don't know whether I have enough steam to keep pushing myself at this pace and will probably end up on the sofa for a long week end before long. I said to hubby today that we need to decide what hols we want to take and when, I think the dogs will have to go to kennels this time but I want to find a different one, Lexi needs a lot more comfort now that she is getting on, plus her bum is nearly back to normal, one week of not keeping on top of it can set her back again.

Wishing everyone the best and remember no surrender

Jan

Busy Week

2011-01-23T10:27:00.000Z

My health has certainly taken a dip this week, I have been overworking my body and to be honest the thought of sunshine is calling. I visited site 3 days and it was so cold my finger ends were white. I think I am crazy taking on projects that I really shouldn't have. 3 of the houses are ready for boarding and 2nd fix, which means I need to get my plans for bathrooms and kitchens finalised, also the kitchens need sorting for the remaining 7 houses which I haven't really bothered with since knocking down some internal walls. I didn't realise how much effort and time the housing project would take, now I am at year end for the Company with a lot of pre audit work to do, I need to do some updating on most of the databases I wrote over the years and my energy level is at zero.

I took a couple of temezapam this week to help ease the pain, the two nights I took it I slept wonderfully and I did get some relief as I didn't wake up during the night to feel myself locked in a position. But the day after the night I didn't take it my body seemed to hurt 100% more. I can't decide whether it is worthwhile taking them for a night to get some decent sleep but then having a double rotten day and night the one after.

Nev goes in for surgery tomorrow and the worry of what that will reveal is a heavy on my mind, not to mention the problem he has coming round after surgery, something to do with his MS. Then my eldest brother Stephen got himself fully knocked out on Thursday afternoon on site. His wife and I drove through to James Cook Hospital not knowing what to expect. Luckily for him he turned out to be okay but on the reflection side it could have been a lot more serious.

All week I have been looking forward to going over to my sister in laws and help her get organised with redecorating her house. When it came to yesterday I woke up with that rotten meso feeling, my ribs ached, my stomach area felt that yak, my false diaphragm was digging in, my legs ached and although I didn't want to waste the day on a sofa (which I really hate doing) I felt that was where I should be, but I took no notice of sense and logic and we went to her house. Needless to say we didn't get anything done apart from buy some sugar soap for the bedroom walls!

It has been a week since Danny left this life, how many more will follow the same fate? Another meso friend has had another good ct report, since diagnose he has had no new growth and is stable, that is now 18 months, no treatment, nothing. I hope it carries on that way for him for many a good year to come.

All I can do is hope that my meso hasn't returned because I really have no idea of which route I would take, but pointless worrying about that until it happens.

Well do I try and help decorate today or stay home and rest, I have another full week ahead and no days where I could just work from home. One thing I do know is that once I kick start myself into action I will get something done.

To those of you with pain I hope you get some respite too!

Carers at Home - Helping Hands

2011-01-16T09:56:00.000Z

Yesterday was the two year mark from when John Edwards kindly cut me open and removed my pleura, pericardium and diaphragm. Two years of extra life that I wouldn't have had. Funny, he was reliving his day for me, and I could still feel the fear he had in the way be spoke about sitting waiting for me to emerge from surgery. I remember the morning getting needles in my back and then when I awoke at 3 am wanting to die. It is so amazing how we can come back from the brink and keep on going.

I would like to thank Linda and Debbie for their comments about my Letter to meso and I do hope that it has helped someone along this journey.

I have been trying to get help to live in with my mam, she is fragile and 84, just before Christmas she had a fall and knocked herself out, cutting off her oxygen etc so I have been concerned about her being on her own during the night. After lots of research I brought in a company called "Helping Hands" who promised the world. How gullible I am, what they say and promote is nothing to what they actually deliver. Hence, after only 5 days I have cancelled the contract, although the helper will be there for 14 days (their minimum period) and I paid up front for 28 days, and given 7 days notice of cancellation they have thrown on another £300 + worth of charges. It's not the charges that have annoyed me as so much as what they do. My mam called out during the helper's 2nd night 5 times, so I got a phone call the next morning from the Company telling me they would be charging more as the helper would be unable to do her job if she had a lack of sleep, how was more money going to give the helper more sleep? The Assessor said on her visit "over the first week they found the client would interupt the carer as it was a stranger living in their home and this was quite acceptable." If it continued past a week then they may ask for additional help to be paid for. We were told that we could bank hours, so when mam's at the centres for 8 hours 3 days a week that would cover the helper working all day the other 4 days, this was totally put down by the manager on the phone saying that if she had more time off on one day that was down to our organising and not reclaimable ..

I have even kept one of my original carers for mam on so on top of the centres, the carer was also off duty Monday and Friday morning, I get a phone call on Thursday from the helper saying she can't get mam up for the centre and she needed to go to the town etc to do her own things, bearing in mind she had been away from the house all day Tuesday and Wednesday. So I had to call my other carer to come in and work Thursday as well!

If you ever call in an agency record what the assessor say's will happen when they come and visit the house and ask the 1 million questions. Another thing we told them mam smokes, a max of 5 a day, (also covered on their list of questions) so they sent a non smoker who detests cig smoke and then accused us of not telling them she smoked. This is because they are short of carers and didn't want to swap or lose the business, so the blame lies with us. We were told all experienced with the elderly, that isn't the case either.

So I have now done research pretending to be a carer looking for work and believe me I was surprised at some of the sites. To make the most of a paid holiday and to have the best time (that's how its worded on one site) apply to be a carer for short term, ensure you get clients that enjoy visiting the theatres, cinema's or insist it would be good for them, as you are paid for and get to visit sites free. You only have to attend a 3 day free course on caring and your employed. Not what the brochures say to us punters.

Sorry I am so annoyed as I thought after meeting the representative from Helping Hands my problems and worries would cease, this last week has been more problematic than the 5 years I have had carers in for my mam!

Also I think if you are terminally ill and need external help it is wise to know about these things going on. I didn't realise what such a big industry it is and how much money is to be made by the agency's etc. Our care home workers get minimum wage while working in homes and I would think these agency's staff get the same yet the company's are charging a fortune, I know everyone has to make a living but then the staff who have been on the books then want the same kind of money the agency's charge to work privately. What an easy way to live, especially if it is with someone like my mam, aid in getting her washed and dressed, feed her once a day with something warm then sit her in a chair and leave her to watch tv, help her undress again for bed and by 8pm she's in bed. All your food is paid for, no house bills, everything you earn is pocket money. I know it takes a certain kind of person to want to live with an elderly person but if you are doing 6 weeks on two weeks off and changing each assignement you are laughing all the way to the bank.

Okay signing off, have emptied my mind of ranting, going to enjoy being alive.

Just had a phone call to say my meso mate Danny has died .. my thoughts are with his family.

Jan

A letter to meso

2011-01-08T15:01:00.001Z

Dear Friend

How long have I known you intimately for now, 6 years coming up 7. We have certainly seen some battles you and I. You have taken me to near distinction and others have brought me back again. Our lives have affected others as well as each others and all the time its a battle of nerves, who can outwit the other.

Over these years, more recently the last 4 I have come into contact with some wonderful people because of you, and I have also lost some wonderful people to you. You have brought destruction and despair, pain and unhappiness into so many lives and yet you are still here, still residing where you aren't wanted.

The effect you have on life is so hard for others to comprehend, you are hidden away with no outwardly signs, you slyly and slowly sneak into one's life and by the time you are noticed you have already caused unwanted problems. I, for one, have been fighting with you for 10 full years, albeit I could only put a name to you after 4 of those years. The pain you unleashed in the early days was bad but at least you gave me breaks, over the last 6 years you have been unrelenting with unleashing pain, you find ways of making my body hurt, even in sleep you still hold your power of pain over me.

Some of those you have touched have been spared with pain but suffer in so other many terrible ways. You leave no one untouched when you become part of some one's life.

You inspire some wonderful doctors who want to discover your secrets and rid us of your presence and then there are some who ignore your very existence or find that dealing with you to troublesome and prefer not to deal with those you have come into contact with. Oh yes I have met both sides and so have many others, but you don't understand the determination of the human race and we will beat you, one day you will no longer exist.

In dealing with you I probably have helped cause a lot of the residue pain, removing you from the very core of my body was my last option and have spent 2 years of additional pain, I wonder if this is your retaliation for removing you? Maybe had I had you removed in our early days of meeting the pain may not be here now but no one knows the future, all I know is because of you my flesh has suffered .. but you will never own my soul.

I hope that this New Year will bring compassion into your being as just the mention of your name brings fear to all those that hear it. Today more people understand the name you are know by Mesothelioma, more are aware of your hiding place and more importantly people are trying to find your secrets of life so they can eradicate you from our lives.

For me I guess I'll have to struggle on, but be aware you are never out of my sight and I will always try and outwit you, you have worn me down, made me old before my time, tried taking away my life and even today as I am tired and weary from our fights and from the pain I will not let you win.

I am watching you

Jan

Ring in the Year

2010-12-31T18:00:00.001Z

I just had a peep at what I wrote last New Year and believe it or not I haven't done anything that I said I would try and do. I do keep procrastinating I have come to think this is normal for everyone not just me.

Examples:
I had an email over Christmas from an old colleague who had prostrate cancer last year and I promised to visit, he is now back abroad working!
Going to more meso meetings - haven't managed one this year
Doing more with friends - hum
Working Less - kind of achieved

But seriously we all treat life the same, we make demands on ourselves that we just don't keep, we promise ourselves we will find time, but time doesn't slow down infact I am finding it goes faster. I use to be able to accomplish all sorts of things during the day, these days it takes me 90 minutes to pull round on a morning, if I had to rush I don't know what I would do. I guess age also comes into it but I am only 50 and should be a lot fitter than that.

I am so lucky to still be alive and I do count my blessings about that but sometimes I don't act like it. I hate pain and I hate mornings when I wake up and feel crap-my mam says she feels like that everyday but she's 84. After having her stay for a couple of days it frightened me, am I as negative as she is. It was hard work with her and I hope that I'm not so hard to deal with should my health take a downward turn.

To ease my pains the last couple of nights I have taken temazepam to relax my muscles and have woke up with less pain which in turns makes me feel much brighter, albeit, I rose much later than usual. I don't want to go down the route of taking tablets to feel fitter on a morning but they certainly helped me yesterday.

I remember when I use to go through my 3 monthly sessions and I dreaded the thought of coping with them in my elderly years and I use to wonder how people with joint pains carry on day in and day out, but you have no choice. Life is so precious yet what do we really do with it?

My cousin never wanted to live over 50, unfortunately she got her wish and died at 49, she said she never wanted to get old, I on the other hand don't want to be old and in agony but I do want to get old. The thought of not being with hubby and the dogs, watching the snow fall or sitting in the sun reading a good book is unthinkable but I am still not doing enough with my life.

On that note lets hope that 2011 is the year that I actually start to do more and accomplish all those things I never seem to find time for.

Wishing you all a healthy and happy 2011
Jan

Survived the Day

2010-12-27T10:10:00.001Z

I don't know where I managed to get all my energy to keep going over the last couple of days. My mother can drive a saint to distraction and she was staying with us for Christmas. The first day was trying and every time we left the room she would start shouting "Jan". I don't think I have done so many rounds in our house for a long time. Christmas Eve she was calling out at 5 am for a drink, thankfully in a way she did as I discovered we had no water! Hubby and I stayed up trying to get an answer on the NWL hot line but we had a recorded message played for some 90 minutes, I ended up leaving him to it and returned to bed. Nevertheless, we were up again at 8 as we had dinner to do for the family. Thankfully we had filled pans of water with what was remaining in the taps and by 9 the water was back on.

Lexi decided she wanted her presents before anyone else and started hunting around the tree for anything that smelt like food, Bear didn't bother as he didn't understand what the excitement was all about. With gift in mouth Lexi took great joy in ripping off the paper and breaking into .. thankfully .. one of her own bones! We gave Bear a present to open and he didn't have a clue but after Lexi continued with opening a few more he seemed to get the jest and started on one himself.

By the time I got mam up, washed and dressed and settled downstairs the time was 11.30 and time for Adult presents. Dogs were sorted, veg's prepared, Turkey had been cooking slowly since 10.30pm Christmas Eve and was looking good, the Pork had gone in at 9.00 and we were on schedule for 1.30 pm lunch. Gary's family arrived early and we were still cooking, it was a great family occasion though and we both enjoyed spending it cooking.

I hope you all managed to have a fabulous Christmas, for me it was another one I shouldn't have had which makes a difference. I can't believe it is only two years in January since surgery but I certainly feel like I did more in 2009 than I have done in 2010. You do forget how valuable your life is when you start living normal again.

To all of us I hope that we have a health 2011 and that the worry of mesothelioma stays in the back of our minds while we get on with living.

News from America

2010-12-21T08:48:00.000Z

Debbie and I received a wonderful email from Linda in the States to let us know her sister has done well since having surgery and is now ready to undergo radiotherapy. None of this would have happened if she hadn't found Debbie's site and email address and Debbie then put her in touch with me. This is why Meso circles work, we are all there to help. We have some choices these days, but as we all know from experience they aren't always broadcasted by the doctors who are treating us.

On another bright note I found out on Friday that my Heart is actually better than it was earlier this year but on the otherside of the coin I still haven't any answers to what is going on in my chest area!

As for Christmas, apart from getting most of the cards done (am sure I missed the deadline for abroad) and have picked up a few things I am well behind. Hopefully will get some time on Wednesday to do a little shopping! The thought of going out into the cold is what is stopping me .. I am such a wimp!

We did get the trees up on Sunday and I thought Bear would be in among them pulling at the decorations. The first time he went to sniff one Lexi have the upper lip so he has stayed away. Our Tyke use to get so excited when the tree went up and would start being on guard over it, she knew that presents were on the way and she loved opening all of her own. In her later years she started opening ours so we had to keep them all locked away until Christmas morning. She was amazing to watch as she tore through the wrapping paper and peeled it back to pull out what was inside. In Tyke's day Lexi didn't really bother but now she has gone I think Lexi will become like her.

Thanks for the comment about stairs and newfie's, but the steps are outside (3) in the garden, which bear always seems to want to trip up on.

Must get started on Christmas

Jan

Heart Scan

2010-12-15T18:31:00.000Z

Am I pleased to be over my chest infection, but stupid me will probably have a cold again by Friday! I had to go to site on Monday and Tuesday and you know how cold the weather was. 2 Hours I spent on site and apart from standing in the cold shell of one of the houses I was up and down 2 flights of stairs constantly. On my final trip up and down I felt dumbstruck. I couldn't talk, I wasn't panting but I felt like I had nothing coming in or going out. It took about 5 minutes before I could find myself uttering a word. One of guys who was on site with me is fully loaded with cold today - I am just praying I don't get it back otherwise I'll have hubby giving me what for.

Tomorrow, all being well, I hope to finally get my tooth fixed, this repair job has been on hold since last May, then when finally got back to the dentists I had another problem so he fixed that, I had to cancel the last appointment again because of my cold so hopefully tomorrow my shattered tooth will have a nice new filling and have no holes.

Friday I am going to hospital for these heart tests. I am just hoping they are doing one of the ultra scan tests for the pressure, dear God if I had to go on an exercise bike I think I will struggle, and if they put me on one of those running machines I will be flat out and they will need to revive me!

I finally revamped the website and put Karen's and Hilary's pieces on, so am quite chuffed with getting something done. I haven't had that much new information to update anything else but it did need a bit of a spring clean and hopefully the buttons work this time!

Bear has managed to become a hop along again, he stumbled up one of the steps and he is holding his left leg this time. I wonder if all extra large dogs do these things. Although he is wanting to bite my hands like they are going out of fashion. I say 'No' and he wags his tail.

Am still waiting for the scan date, my GP rang last Friday out of the blue to see how I am and when my next scan is due. He was a little shocked that it is some 5 months since my last one and thought I was getting one every 3 months. Hopefully he will also chase this up.

Back to doing some paperwork, hope you are all well.

Jan

Heart Explained

2010-12-03T16:21:00.000Z

I emailed my docs for an appointment to see Dr Murphy to discuss my heart. I met Dr Murphy when I had heart failure back in 2009 after Mesothelioma Action Day. These pains in my heart area are worrying and although it is great being alive it does get you down when you get up everyday in pain and feeling yak and no one really understands. Plus it doesn't help that you feel guilty moaning when after all you are still here against all odds.

Last night we all ventured out for the meeting, I tried to explain the pains that I have been having, I must admit I do find it difficult to convey pain into words, my china man was my best at explaining but these pains aren't like that. He duly listened and wrote notes here and there. He did explain that what I explained didn't really match an ulcer either and it certainly didn't match that of angina or a fatal heart attack on the way.

He had pulled up my previous records and was able to explain that after surgery the heart had moved and twisted slightly, which makes the ecg look odd. He also explained that my heart has to work harder to get the oxygen round the left lung because there was a lack of blood vessels but the same ground to cover. My breathlessness can be caused by this because I'm not collecting enough oxygen in my lungs so by pushing myself in some cases I'm not doing myself any favours. My resting beat is probably the same as a healthy person's walking beat.

I was telling my eldest brother this on the phone last night and he said Maybe you need to exercise more! I have decided to just give up trying to explain anything to him, as the more I overdo it the more I push the heart the larger the muscle will become which could mean my muscle losing some of its elasticity.

I asked if he thought I expected too much from myself and in a nutshell he said yes. My anatomy is nothing like it was and surgery doesn't always put things right, which in our case it doesn't. Parts of us are removed so as we can keep on going.

I have been listening to my body these last few days, I have stayed in doors where it's warm, but I feel like a wimp - do others that have been through this feel the same. Dr Murphy said I was remarkable still carrying on as if nothing was wrong, going to work and taking dogs for walks etc. I took this as it was meant, a compliment. Yet in everyday life it doesn't really help because we are born independent and you don't expect others to do things for you. Looking out the snow is so tempting but there is no way I can run around the garden chasing the dogs, I just wouldn't get my breath and then when that happens it feels like your whole chest locks. As for what is causing the pain no answer, it could be scar tissue, it could be from the chemo still or even worse it could be my old friend.

One thing I do know is that I am getting worse but could this be explained by the cold weather.

If you have had surgery to remove your cancer please let me know if you are suffering fro a heaviness in your chest and the feeling of an iron ball sitting there.

I also hope that I do get an appointment for my CT Scan in January and maybe I might get a gastroscope done to see what is going on down this channel. Just to wake up normal (ok not quite normal because my left side will never let that happen) but to just have leftside pain would be wonderful, jumping out of bed on a morning feeling great is my aim in life.

I hope Debbie had her operation today so she can get sorted and started on radiotherapy. Timing of treatments is so important for everyone with meso. Do you sometimes feel written off for normal problems because you have mesothelioma?

On that note I think I will sign off.