Saturday, 31 December 2011

Happy New Year

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. 

Tuesday, 27 December 2011

Dishes All Done

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!)

Saturday, 24 December 2011

Merry Christmas 2011 - My 8th since diagnosed with Mesothelioma

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.

Thursday, 22 December 2011

Christmas Spirit

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

Sunday, 18 December 2011

One miserable day and then

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

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.

Saturday, 17 December 2011

Christmas Blues caused by mesothelioma

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

Tuesday, 13 December 2011

We are lucky

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

Sunday, 11 December 2011

Christmas Thoughts

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. 

Friday, 9 December 2011

Another Cancer Case

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.

Tuesday, 6 December 2011

Try and be Stable Meso

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!

Saturday, 3 December 2011

Meso Panic Attack

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.

Sunday, 27 November 2011

Lung Damage Explained

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

Friday, 25 November 2011

No Hard Scan Copy

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.

Monday, 21 November 2011

Mesothelioma and sugar craving

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

Thursday, 17 November 2011

The week

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)


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!

Tuesday, 15 November 2011

A Big Favour from Face Book Users

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.

Wednesday, 9 November 2011

MARS Trial

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.

Sunday, 6 November 2011

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

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.

Tuesday, 1 November 2011

Trick or Treat

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.



Sunday, 30 October 2011

Life between Mesothelioma (filing away the memories)

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

Friday, 28 October 2011

Hope its not in the Pericardium

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.

Sunday, 23 October 2011

Meso Scan on the horizon

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



Friday, 21 October 2011

Hopefully a higher place

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

Saturday, 15 October 2011

No Pain in Warmth

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

Friday, 14 October 2011

Conference Day - USA

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:
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

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

Sunday, 2 October 2011

Summers here!

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.

Wednesday, 28 September 2011

Meso Pills take away the fun

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.

Thursday, 22 September 2011

Holidays are coming

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.