Body is fighting

Monday gone I was supposed to have my 3rd dose (5th set) of Vinerolbine, had I taken it or been allowed to take it I doubt I would be sat here writing my blog.  I can say, hand on heart, that it has been the chemo causing my rapid deterioration and not the mesothelioma taking on full control.

Mentally, now that 2013 has gone I feel better, stupid how our mind can get hold of something and never let it go.  Monday I wasn't well, Tuesday I felt like a different person, each day I have become stronger.  It isn't a great leap but enough to know that I am finally on the way from that bottom of that deep dark well.  In all the years I have had mesothelioma it has never dominated my life, my every day thoughts or impinged on our lives as much as it is now.  Mesothelioma was something I was living with, it tired me in the late spring but by summer when the ascities showed its colours our lives changed forever.  Buying the wheelchair was so I could go out and not worry about being breathless, never did I think I would need it in the house to ferry me from the lounge to the toilet or the top of the stairs to the bedroom.

I have another week before I see my oncologist, decisions and a long conversation is certainly required.  If I can get these two new tumours zapped I think I stand a good chance of staying around for quite a while yet.

Thursday we spent from 10.45 till 4.15 or later at Darlington Hospital.  This was to check the high levels of potassium that is travelling around my heart.  It has been high, well over the acceptable levels but due to sets of problems within my body it is hard to determine what has caused it.  The current belief is the chemo, but I have to say I am pleased that it dropped yesterday to 5.9, still above the range but in an allowable way.  If it had risen dramatically overnight then I would be in serious trouble, but mine has risen over the last few weeks.  Because of ascities and the chemo it is hard to say what it's doing, together with taking steroids, which can also affect the reading.  I am so pleased I didn't lift them to 5 tablets when I was so breathless Christmas Eve.

My bloods were done within 15 minutes of arrival, the room had 6 including Gary and I and the bed part had about 4 patients.  The lady sat opposite me had an infection and was frozen, she was receiving oxygen to get her stats up.  The lady sat next to me was receiving blood.  I was burning up, there was no air.  We waited and waited.  We were told the blood would take an hour then the consultant would see us.  That hour became 3, by then I was ready to collapse in the heat, breathing was difficult.  Gary wheeled me into the corridor and some how we managed to catch the main consultant, he told us how busy he was but he would get me.

We waited another hour, sweat was running down my face, pooling in my throat.  I went to my named nurse and said we know the blood is ok, please can I just go home and if he needs me I can always come back.  She said give me a minute and I'll catch him.  He came back and called us into his office.  We discussed the tests and the meso then he let me go.  If I had needed an infusion I have no idea what time we would have got home.

I must say RAMAC is a good idea but it could do with its own consultant on there all the time.  I must admit the nurses were marvellous on here to.  It's a shame though that people are still abusing the A&E, especially those who go out drinking and end up vomiting on the streets, or those who cut a finger, hello go to your walk in centre or your doctors!

I had managed to sleep right through that night so was hoping the same for last night.  We went to bed earlier than we have for the last few weeks, 10.30.  I feel into my drugged induced sleep to wake at 3.30, I woke Gary and walked to the loo.  I told him not to turn all the lights on so we would keep the ambience of normal sleep.  Back in bed the pain came, I tried to lie down but no, my heart rate started to speed and that fear took. Hold.  I took half a diazapam and sat up waiting for it to release the hold on my chest.  Slowly I managed to lie back and then finally back to sleep.  We got up at 7.30 and surprisingly even Gary felt more refreshed.

Due to the loss of weight the inevitable has happened, I have sores on my skinny bum!  Now I am going to have to find a new way to sit!

My goal is to be totally out of the wheelchair in the house by Monday.  My energy levels should start rising but I was told by my Macmillan nurse it will be a lot slower to get back than the speed they went.

That's me upto date, I hope that the above has made sense and if any one else is on this chemo and noticed there energy leaving then tell your onco.  This chemo is extremely hard to tolerate and is tough on the body.

I wish you all a better New Year and truly hope that each and every one of us is still here to celebrate the next one.

My thoughts are with Tess right now, who having been inactive is now concerned about her breathing, I do hope it's a cold starting rather than Meso raising its ugly head again.

Mavis, Steve and Ray are also in the wars and I know we will all be fighting again so we can stay with those we love.  To the many others out there who have travelled this journey we will keep going and to those who have just joined the battle, statistics are just that, your body is not the same as anyone else's nor is your journey.  Take hope and keep it in your heart.

Is it really Friday?

Last Monday seems a life time away and here we are and its Friday again, which doesn't seem right.  The week has flown in one way and gone slow in another.

 

I have had company nearly every afternoon and today is no exception, an old school friend is calling round.  After my book was up for sale in a local village shop she recognised my photo that the shop had used to publicise the book.  It should be an interesting and wonderful catch up.

 

I had Joyce over yesterday afternoon, no aromatherapy though, just a nice chat.  She brought my favourite's, her home made ginger snaps!

 

I have also discovered that bending down makes me breathless, up until last year I didn't really suffer breathlessness.  I was a pain only girl, but now I suffer both and I hate this, I don't like the breathlessness, it actually does hurt but not straight forward pain.  Something else to ask the Macmillan nurse, breathing classes.

 

The breathlessness will be one thing to go if the chemo, when I finally get it, will help and I will know if it is retreating and dying off.  At least we do get signs that things are working.  Gary said I should buy an oxygen thing for when I am breathless but then that will make my lungs extremely weak.  Not a good idea at this stage.

 

I am hoping to return to the office next week, maybe 11 till 2, but how do I stop myself from bending over and picking up files etc?  It is habit and one that I have done for as long as I was able to walk.  I can't keep asking my colleague next door to leave his desk and come into my office to lift a file from the drawer or the shelf behind me! 

 

I have woken up with that rotten feeling in my stomach again, I stopped taking the metroclop at 6 am, as I didn't think they worked but they helped me from feeling rotten for so long, so tomorrow I will be back on them.

 

I have to give a water sample too, this is day 3 since I was given the sample pot, so this morning I remembered, I only peed out enough to fill the thin tube, I am starting to worry as at most I am probably visiting the toilet 3 to 4 times and not going very much.  I just hope the body is working properly down there and hasn't been damaged due to the excessive weight that was crushing my organs.  The sample is to see if I have an infection, which I doubt very much, but I hope I do.

 

I have lots of new twinges in my body, my left side now has a stitch, another new area of discomfort, I feel like I have a small sheet of hardness just along from my naval and down slightly to the left along with this strange sensation in my left pelvic area.  It will be interesting to see if the Oncologist actually goes through my scan with me when I see him and see if these areas are now meso or just nerves being disgruntled.

 

I was in trouble last night as I hardly ate, I had a sausage roll for lunch, had a craving but it wasn't nice, then we had dinner last night but I just couldn't eat a lot.  Hopefully my appetite will pick back up but I need to be eating much more.  The body is loosing vital vits and muscle due to the protein being stolen from my blood etc. 

 

I can't deny I am frightened still but at least I can now get on top of that fear and do something to put it back into my memory.  The worst thoughts come when I am lying in bed waiting to drop off to sleep.

 

Have just had a phone call, my doctor requested an MRI of my spine yesterday, I have no idea why unless it is to see if the nerve is still trapped in my L4-L5 and hence I can't visit the loo.  How efficient is that as I am going tonight for it.  It is even on the NHS!

 

So shower time is looming, I think today I will be using the stool as I need to wash my hair.  It is also dressing changing day and Gary has asked to be excused.  I don't blame him because actually seeing the drain reminds me life will never be the same again.  I have drawn a litre a day apart from one day when it was only 400.  That is a lot of fluid and there is still plenty left in the stomach as I won't let it go empty!

 

I received an email this morning telling me another warrior has lost his fight and gained those wings to heaven.  Peter Gallolgy was diagnosed in 2009, his first choice was no treatment and he did that for approx. 2 years, enjoying his life.  The meso started to grow faster so Peter then went on to Chemo, I haven't been in contact with him since Christmas when things were going well.  My thoughts go to his wife and children. 

 

On that note I hope a cure is found sooner rather than later, every day some one some where is diagnosed with this death sentence.  This is not our fault, its a man made killer that should have been researched before used in everyone's homes and workplaces. 

 

No Longer in Control

I guess over the last 6 years I have to some extent being in control of my life, my illness and how I have dealt with it.  From pain management to finding treatment has started and finished at my own door and if I got it wrong then it was my fault.

Now I have a drain insitu I am not in control anymore.  I have to start having a routine that remains the same.  No longer can I just get up, read the blogs, reply to emails, check on face book then have a shower and either go to the office or work from home, but all at my own pace, some days fast and early, some days slow.  I need to become regulated, sounds like health and safety in a factory floor!

 

I will have to be seen weekly by the district nurse once I start controlling my own drainage.  I will need to start having a new morning routine, a one that works to a time.  Draining will need to be done about the same time each morning.  I will probably shower first, to help dampen the dressing so I can peel if off, then drain.  Pointless doing it a different way as if I shower after draining then the patch will be damp on my clothes.  If I do it every morning the fluid doesn't then absorb all my nutrients everyday.  I am hoping to gain some muscle back around my shoulders and chest but time can only say whether this will happen or not.

 

My wound is extremely sore, the stitches are tight and of course it doesn't look nice around the pipe that comes out.  Reminds me of that large tube when I was discharged back in 2009.  The pain is still in my side and towards my back, probably my liver settling back down after being forced from its normal living area. 

 

Yesterday I took an additional 100mg of morphine, 2 lots of 50 to get me through the day, I also took another muscle relaxant last night to ensure I got some sleep.  I soaked the bed again last night with sweat but didn't notice it as badly because I slept deeply.  Movement is still causing a lot of pain, either in the shoulder or the side and climbing the stairs is murder.

 

I know in comparison to operations I have undergone this is nothing but pain is pain and mars our life something cruel.  I will have several district nurses, depending on rota, Linda who came yesterday and this morning knows me from the big operation.  I told her I was hoping to go in the office tomorrow, she paled and told me I can't.  To be honest I think I would be stupid too, sitting at the desk is ok but having to move is something else.

I could feel the fluid building up and when I got up this morning a large volume had already gathered on my left side.  I couldn't wait for Linda to arrive, clock watching until the time she thought she would be here.

 

I was going to give it a go myself but the pain of trying to remove the dressing was bad enough, any tugging made the pipe unbearable.  The minute we tapped the fluid poured, I doubt it even needed a vacuum on it, the first litre was out in less than 4 minutes.  We changed bottles and did another one.  The flow didn't falter.  There is still a lot more to come but in the community we are only allowed to take 2 litres at a time.  Seems strange when having a procedure done we can drain much more off without a problem.  As the fluid was draining I could feel my stomach shrink, its amazing to see, I guess in reverse of a camel filling up its humps with water!

My two full bottles
 

I am the most oddest shape sideways, I wonder whether this will change or I will remain like this.  I know a few ladies who have gone through breast cancer and the mental anguish they have suffered because they don't feel like a woman any more or attractive to their spouses.  I have always tried to have empathy and I know this isn't the same, this is my stomach for heavens sake.  But I have scars that can be off putting and now I have a pipe sticking out of me and am the strangest shape of any human being.  I know that beauty is skin deep and that love doesn't see the scars or the shapes but in our minds we start getting a hang up about it.  I went through this, quietly, after I realised how ugly my body was after the operation, would Gary still want to hold me.  His hand feeling the crevices in my skin, the tightness over the shoulder blade and down the ribs, the strange lump that is in my left breast, now he won't dare hug me tight in case he feels the pipe pressing into his own flesh.  At least before he could always hug my right side, now he can't hug either.  We go to sleep with my lying on my left side and him cuddled up behind me with his arm resting over my waist, now he can't do that, my new appendage will be in the way, plus I doubt I could take any pressure on that area.  We can never fall asleep properly unless we snuggle up.  Ok I have slept the last couple of nights only because I have taken something, whereas Gary has laid awake for hours keeping watch over me.

 

I also read this morning one of our friends lost a really good friend suddenly this morning.  We met him a couple of times while on holiday in Dubai, Eugene was the perfect gentleman.  He worked at the Burj's front desk for customer services and what a nice fellow.  So sad that for years he worked in Dubai to support his family back home and then he went back this year to be with them to die suddenly.  How unfair is life sometimes. 

 

Each day the whole human race is battling through life, some don't realise how good life is and take everything for granted, others suffer terribly - young children born just to starve to death due to ignorance.  Those who are addicted to drugs that make others rich but can't help themselves and end up destroying their bodies.  Then us who have cancer, we appreciate everything but suffer in so many terrible ways.  A young mother wrote today 'Why do those who do wrong never suffer'  her life was damaged by mesothelioma then she discovered she had breast cancer.  I read this and thought the same, I've worked hard, I have never intentionally hurt anyone, tried to look after my body (ok sometimes I may have drank too much) but overall have done nothing wrong.  You will find many with cancer have never done anything wrong yet suffer.  The annoying thing is that drug abusers probably have more money per capita spent on them in the NHS than us with cancer do. 

 

They will be getting benefits, probably free housing, kids taken care of, frequent visitors of A&E or hospital beds, rehab that costs a fortune and the stuff they use makes some people rich and they don't even pay tax off the sales.  They beg in the streets, some making more than the average wage earner then they just waste it all on getting high.  Not even mentioning those who rob and destroy people's lives but they don't pay nothing back into the country.  Yet terminal cancer is seen as a heavy burden on the state!  Drugs which are needed are denied because they cost too much.  We know that pharmaceutical companies charge a fortune but then they have spent years developing drugs and that costs so I can understand them wanting to make as much money as possible when the drug works - that's a different discussion.  Yet cancer patients, well we've paid our taxes, we've worked and raised families, took responsibility of our lives and when it comes to us needing help we are seen as a burden.  The Government are wanting to override NICE to ensure terminal patients, indeed all patients with rare (I know ours isn't rare but it is still classed as rare) cancer can have drugs that aren't on the standard list.  What is wrong with NICE?  They don't say we will stop treating drug users do they?

I guess that's me done for the day.  Time to let the additional morphine work and give me some relief from my pains.  To those suffering in treatment I feel for you and for those in remission don't do what I did, live don't put your life on the back burner believing you have another day, do it now.

 

 

Stomach Result

I emailed a private doc that I had seen to diagnose my hernia, Mr Vish, on Sunday, in the hope he will be able to do something with my tummy.  I have waited patiently for the NHS to send an appointment that was supposed to be for last week, but then what if they didn't do anything by our holidays - I would be snookered.  He emailed me at 8.00 Monday morning and said I could see him that night.

 

The weather was terrible here all day, it rained and rained.  I knew I had to go to my mam's and sort the house out as I am renting it to a friend for a couple of months while he waits for his new house to be finished.  It was emotional again, packing up the remainder of things and giving away the final things that adorned her bedroom and the living room.  I had sorted 4 boxes out that I thought we, as a family, would want to go through, and they have gone in the attic.  I only filled up once but managed to keep myself focused and not break down.  I still expect to see both my parents sitting there, but more so my mam.

 

I had an appointment with my back man at 3.30, after a quick stop at home off I went to Durham.  He can tell a difference with the muscles in my back, they are certainly relaxing and thinks the stomach is now putting a little pressure on it.  Once my stomach is sorted he believes my back will be ok, and will give a few exercises to ensure I keep it strong.

 

We stopped off at home to feed the dogs then off to Darlington to see the private doc.  He scribbled some notes down, examined me then told me I was getting treated on Friday morning.  He isn't doing it but the radiologist is.  He will then see me when we get back from hols to ensure it has stayed down.  If it comes back up he is more than happy to put a pin in it (joking).  I will feel rather embarrassed if it is all fat that I have suddenly put on!  Seriously though he tapped here and there and could here fluid.  He doesn't think its a lot either but enough to cause the problems of not feeling hungry etc.  I think maybe the water tablets are working, my wrists, ankles etc are looking thin, I think they are pulling all my fluid and pooling it in my stomach!  He told me they will help control the symptoms of fluid.

 

We came home and ate, I didn't realise how late it was, nearly 7.30 by the time I put the dinner plates on the table. 

 

Lou, our wonderful warrior in Australia has just received news that she is starting chemo again.  I am pleased that they are going to treat her again but also worried for her.  She has had bad reactions, much like me, to the chemicals.  She is being admitted for treatment, I guess by now she has already had the first lot of chemo, due to time difference.

 

We spent a little time yesterday texting, without saying much to anyone, her stomach too has been expanding and when she got her results her specialist told her the cancer is thriving, fluid in her abdomen too.  Please read Lou's story if you haven't.  She is an amazing lady who has been through more treatments than I. 

http://asbestosaustralia.blogspot.com.au/

 

Bear is still staying by me and last night kept resting his head on the side of the sofa and giving me those big brown eyes.  Although I think he was after doggie treats rather than wanting kisses!  AT the moment he is waking me up every morning at 6 am wanting to go out, he is consuming so much water during the hot nights he can't hold out.  I don't want to make him lie there bursting at the seams but I have to hope this won't form a habit.

 

As I wait to hear how Lou is, I know so many people are going through treatments or preparing too.  I am worried myself about starting something.  I want to get the cancer back under control but am terrified that maybe the chemo could kill me the next time round.  We are always dicing with death, whichever option we opt for, or if the oncologists are willing to give.

 

The meso community supports each other through these times, as well as when we lose a loved one to this terrible cancer.  We share the good news and celebrate and take the bad news to our hearts.

 

I must try and get into work, the sun has come out today so maybe I can fit into another of my friends skirts.  Oh to lose my tummy, shame Mr E couldn't get rid of his so easily!  I want to get him the Insanity work out discs but I have been unable to find them in UK outlets.  We saw this advertised in the States when I went for my last cryoablation, wish I had ordered them then.  I would have a nice slim hubby, well if he actually did do it!

 

Hope Steve has arrived at his skiing, Steve & Linda are filling their days doing something positive, Mavis is resting, Tess is still meeting her Targets, Amanda & Ray are having some chill time and Lou, hope the chemo is being gentle with you.  To everyone else, have a good day.  I feel uplifted and hope that I will stay this way.

 

 

Meso Just doesn't stop

Awareness about mesothelioma was non existent until a few people who had drive, time and were indignant about the way their loved ones died raised holy hell and started doing something about it.  In the UK that was June Hannock and Chris Knighton.  In the States Mary Hesdorffer and Linda Reinstein, Australia Bernie Banton and Lou Williams.

 

Without these starting points and these wonderful people many of us today would still be left in the dark about this terrible devastating cancer. 

 

With the www we had websites and they started to grow, with the introduction of facebook, groups were started, Jan Weston, Debbie Brewer, ADAO etc came to life.  Being a later starter with facebook I only blogged and believe me it to took me years to work out how to create one!

 

Even with all the connections, support and help available between each other still we are still dying.  We have lost a few of the recognised names in the past week, people who have helped spread awareness via interviews, newspaper articles and being there to help support others who are just starting out on the worst journey of their lives.

 

Janelle was only 37, a young mother - I feel that something has changed about asbestos, before it had a long dormancy period and was classed as an old man's disease in the UK. So if they worked from being 18 in the stuff and died at 60 that was 52 years the cancer had to grow.  Janelle was 37, it doesn't make sense.  I was 44 when diagnosed, I believe I was in contact with asbestos between 0 - 6 years old, Debbie was the same, although slightly older when diagnosed same contact age.  Now people seem to be contaminated with a shorter dormancy period - Why?

 

On a different note, my physio was extremely painful yesterday and I suffered the whole afternoon and night.  I didn't realise what a bad back was like until this, so I apologise if I have never been sympathetic to anyone in the past.  He keeps telling me it will take weeks, how many weeks can I withstand this pain, it is getting to me.  On top of the other meso pain I think I am crumbling.

 

Today is Helen's funeral, I hope her send off goes as well as Debbies.  I wish I could have attended both but travelling to Plymouth in this condition then to Helen's would certainly have caused further problems. 

 

At times I wish I was just back in my little bubble of blogging, then I only followed my fellow bloggers and kept in touch by email with my own meso circle, once we know more people it becomes harder dealing with the losses that occur.  Yet then you miss out on meeting so many wonderful people. 

 

Sorry the blog is disjointed, I guess that is how I feel right now.  I hope Tess has a good last dose of chemo today and sets her up for a long remission, Mavis has another dose today, lets hope this unproven chemo works.  To Linda & Steve, have another great time away and Amanda & Ray I hope you have a good walking weekend.  To everyone out there, please stay pain free and meso free.

Good News but still pains

After the good news on Monday afternoon it didn't sit right until on Friday when I finally saw my GP and read the results of the Scan.  Nothing was amiss the Mesothelioma has gone into hiding and for the first time in 3 years come April I am at Stable Inactive Disease, my GP hugged me as I walked into his office then asked what were my plans!

 

I told him about the rotten pains I am still having and now have that horrible pain under my left armpit, we all have decided it must be with the meso shrinking and the nerves are recovering, knitting back together, which I believe is extremely painful. 

 

On Monday night though I had a case of the Winds, and I mean Winds, I could out do Gary and Lexi together.  When we went to bed I still letting off (can't think of a polite way to write this so drop a few lines if you don't want to read), he said I hope you don't blow me out of the window, well I was rolling with laughter, the tears were streaming down my face and my chest hurt from it.  Every time I stopped laughing the wind outside made the blinds rattle and it set me off again.  It was some 20 minutes in total that I laughed, so at first I put this down to my side being worse!

 

Saturday the weather was calm and for the first time in weeks I ventured out with the dogs, Bear was over the moon that I was out walking and I even got a lick to prove it.  Bear hardly ever gives kisses so it was a special moment and most unexpected.

 

On Wednesday a Question and Answer article was posted on Mesothelioma Cancer Awareness Site, at the time of posting I was dreading bad news.  I still can't believe it you know, I am thinking or rather hoping if its stable and has reduced in area's upto 75% it may stay dormant for a couple of years, this is my biggest hope. 

 

My project is still going, I am finding it amusing watching some of the old footage of us but two of the old tapes will not work, and I figure they are important ones.  I have box loads of the modern tapes of us on safari in South Africa from 1999 and 2000, each day I just held the camcorder to my eye all the time and probably missed so much.  I really don't fancy going through it all but I have started so I guess I will finish.  Strange though because we don't seem to have taken many pictures of us either, and hardly any together.  I haven't used the camcorder since 2006 apart from Xmas and haven't a clue where those tapes are and then Gary bought me a new camcorder Christmas before last.  Used once this Xmas day!

 

Digital camera's now have video recorders built in too which again I very rarely use, in future I am going to start taking more photo's of us and less of the dogs!   The programs to create things are so clever and unless you have hours and hours to practice and make dynamic slideshows you end up feeling you have offered up something boring.  They can produce your slideshow into marvellous show but if you want them in order they don't seem to follow the timelines.  So mine are, of course, the boring slideshows!

 

I'm pleased too that Lou in Australia has picked back up the blogging routine, she has had Mesothelioma for such a long time but has an amazing sense of humour, she puts me to shame.  I do hope you click on her link and start following her thoughts on life with Meso.

 

Well I think that's it from me, I hope that my Stable InActive can give you hope and you get the same results too if you are going through Treatment.  My low dose has done me well so maybe there is something in overdoing poison can sometimes be overkill.

 

Staying Alive

This week has brought many thoughts flicking through my mushed up brain.  The most important is the fight to stay alive as long as possible.  Reading that both Denise and Jo have died from mesothelioma this week hit me like a double decker bus out of control, especially more so with Denise. 

 

I spoke to a fellow mesothelioma suffer, Chris, who was diagnosed with me back in 04.  I sent him to J Steele because again he was told there was nothing out there for him.  He has had Alimta and Carbo 3 full cycles now over 8 years.  His meso is hanging from his aorta, a 6 inch mass, which reminds me of the set of curtains I had hanging from my lung back in 04.  After my cryo in 08 I tried to get Chris to write to Dr Abtin but his oncologist said it wouldn't help and that was that.  I am hoping that if Chris gets shrinkage again he will reconsider this as an option.  After all Dr Abtin was 1mm away from my aorta back then too.  Dr Steele has recommended the IPM course of chemo and I pray this will work for him.  He may be 70 now but he certainly doesn't feel it - again why should he be given up on?

 

Amanda too has done some amazing research and posted it on her blog, they keep telling people this is rare, it isn't as rare as one would think.  Together with Linda (Doing something Positive) they have both raised valid points.  It may be rare to community hospitals but Mesothelioma is a rapid growing cancer with more deaths per year than road accidents.  Yet we hear road accidents can be prevented, what about deaths from this cancer - surely they too can be prevented!

 

I feel so alive today, vibrant and energised, I don't know whether my body is going through some mammoth change and kicking the meso out (that would be a big answer to my prays) or I have been instilled with how important life actually is.  I journey from one day to the next and never think the next will not be there, this week has proved that, more so with the rapid decline of Denise.

 

I was also contacted from a company that deals with removal of asbestos, they wanted to use one of my blog pieces in their newsletter to show to employees why there work it is so important.  I am pleased that I was able to help.

 

There is nothing out there that prepares us for when our oncologists say to us "Sorry I don't know what else to try, just enjoy your time left".  To date I have had this in 04, 08 and 12, seems every four years - I hope by the time 2016 comes around there are more options out there.  Chemotherapy isn't pleasant, in fact I think its the worst thing in life to go through, but if it keeps me alive then I should have the right to keep taking it.  I don't understand why we are so far behind the USA.  I know we are following them in this terrible Claim for everything but there doctors are still willing to give things ago.  They don't see Mesothelioma as a death sentence, they see it as a challenge, why can't we?

 

Well that's my thoughts for today, neither enlightening, heartbreaking or moaning, just ramblings from someone with chemo brain.

 

Good luck to all the meso warriors - yes that means you - everyone with this cancer is a warrior and lets hope change is around the corner.

Living for a day

On Friday morning I noticed the sun was coming through the fog, normally I only take a day off work if the weather is really bad and\ or I'm not well, but I then work from home.  I thought I never spend a good day with Hubby and today I am going to change my Life.

 

We took the dogs first over the fields and had a good walk around, Bear and Lexi sniffing every where, watched the Hare do a fast run, far to fast for our two, then made our way back to the car.  I said I don't want to just go home and spend the day in front of the computer, this machine seems to rule my life, mornings now facebook, work then come home to emails, blogs and facebook.  What happened to my life!

 

We dropped the dogs off, got changed and off we went, the sun was out the temp around 14 and no wind.  We headed to Seaton Carew and the Headlands at Hartlepool.  We had fish and chips, sitting in the car and watching the sea then out we went for a walk.  I never realised how much history was at the Headland at Hartlepool, apart from they hung a monkey thinking it was a spy!

It now has a monument explaining why they did it.  I realised we were near a friends house so using my terrible memory I tried to remember what no she lived in, rang her phone no one home! Oh well off we went for a walk to the old war bunkers.

I do wish my friend had been home, those fish and chips needed washing down with something!  After a brisk walk we headed back to the car and drove down to the end of Seaton, I have lived in this area all my life and never knew about this secluded area of beach

If we had the weather like Spain or even Devon this would be crowded, instead it is empty, although the steel plant is just to the left of me on the other side of the bay

In this little area it was so warm, between the sand dunes. Had I had a mat I think we would have spent a couple of hours sitting here, watching the sea and the boats going back and forth, oh well after a wonderful walk from one end to the other it was back to the car.  I loved the idea we had to cross a golf course to get here, obviously I was looking to make sure no one was taking a shot, if I still played I would probably knock a few walkers out as they cut across!



Please give me a treat

Getting home around 4 we had a lazy night, the computer didn't want to play, I had to download a new program for my architect work but it kept stopping and starting, as was facebook so I gave up.  Finally sitting in the living room.  But no rest, either Bear or Lexi are constantly wanting attention and how can one resist this


Is that the treat tin you're picking up?

Today I went into work for a couple of hours, thankfully hubby hadn't taken the mutts out so we both went for a walk.  I hope this is going to be a perfect weekend.  At least it has started better than last week, when I had morphine fall out!

Sunday tomorrow, wonder what the day will bring, a friend died this week from mesothelioma and again it is a reminder that we should live for today, I was shocked because he was doing so well and once again it proves meso just does not give warnings.

I asked a question on face book yesterday if Meso was being represented on Channel Four, Mavis came up with a good idea of tweeting the program to ask ... you know what the answer was before I even write it.

This cancer kills more than prostrate and breast yet it is a dirty word, why?  Politics and health should not go hand in hand, I doubt I will ever put anything in Cancer Research ever again and just support  Chris Knighton, at least I know the money is spent on Meso!

Morphine Fall Out

I don't know how I could forget to take my morning morphine tablets but I must have just overlooked the fact.  I did get up late, which never helps, and then by the time I showered and decided not to go into work, it was Saturday, I was on a different thought band.  I must have gone into the tablet box, taken out one and forgot the rest!

 

The symptoms, very much like my adrenalin rushes, my body was hot and cold, one minute I wanted a blanket over me, the next I was throwing it off in anger.  I couldn't decide what I wanted to do with myself or put myself.  I was tired so I had a nap, waking up I felt much worse.  Bear came and laid in the lounge with me, even with the heating on at 20, poor boy was panting but wouldn't go out.  By 5 I couldn't stand my own company, my thoughts were not good, you know the ones "why put myself through chemo to feel crap, am I always going to feel like this, I'm only postponing the inevitable" those awful thoughts we go through. 

At one point I even got on the floor and cuddled up next to Bear, although he is much bigger than I, and yes I did nod off for a few moments!

I took a tamezapam and that knocked me out, at least for a while, I woke up to Merlin and watched a little tv.  The kitchen was cold so hubby got my evening tablets, another tam just to ensure I got back to sleep and off I went to bed.  Although all last week I have had night sweats, they were bad that night.

Sunday morning I woke up feeling fresh, went downstairs opened my tablet box and realised that I hadn't taken yesterdays morphine, so I had a morphine fall out, but I couldn't understand how I had taken my pregab and hormone.  At least the sun was shining and out we went with the dogs over the field.  I felt alive again, positivity flowed through my veins and I enjoyed the day.  Taking a few shots of the dogs and hubby marching out across the damp fields.

Then heyho I wake up this morning and feel crap again! I hate this cancer, no two days are the same.  My chest was tight and my legs feel heavy.  I worked till 2.30 and have come home, I have brought some work home to do but find I can't concentrate on it!

On a bright note my lung nurse has emailed with a date for the oncologist, next Monday.  I can only hope that the Alimta will work although I don't like the thought of the side effects.  Poor Steve (Doing Something Positive) is not having a pleasant time and ended up in hospital on day 6.  Just the thought of reliving what I went through in both 04 and 07 haunts me, and that's just the needle going in.  I know we are good at forgetting at how bad we felt, like my operation I can barely remember the pain of it all, but chemo is a different monster.  I can still remember those days when my stomach felt like it was a mush and even water touching my insides brought on great pain.  I guess I could say at least I am going into this one healthier than the last times, as I'm fit in other ways.

My heart, I nearly forgot, I have no further damage to it from what had already occurred in 09 after my heart failure episodes, he can't understand what happened the other week, I did see the small amount of fluid and the thickening on the pericardium but to be honest it isn't touching the heart as yet, as yet - that makes it sound ok doesn't it!  Nevertheless, he will keep an eye on the fluid.  I asked if he knew any good surgeons willing to cut out the cancer but I got a blank look, not sure whether a cardiologist is a surgeon so I could have put my foot in it there!  My heart is strong, although lopsided and damaged and of course cancer growing around it, always good to know it can still pump blood.  What an ugly organ inside, I had visions of aliens inside me when I watched the screen.

Enough of me for one day, although I wish I could find a way to ensure all hospital oncology departments could be satellite drug trial stations, its annoying that if you want to try a drug you have to travel all over the country.  We need to be able to get our hands on more chemotherapies, especially as alimta only works on 40%.  There's another thing too, we need to show that meso doesn't just affect the elderly it is a disease that is affecting more and more younger people, I think that drug companies and oncology departments aren't prepared to take that extra step because being old isn't worth their while, I know that's wrong, but that's what I think! 

 

I hope that those on treatments aren't suffering too badly and that Steve is getting back on his feet, I wonder how Helen is doing as well as several others.  One thing I have learnt, St Barts are willing to try a mixture called IPM, why isn't that countrywide either!

 

Poison is no fun but its better than dying, but I would still prefer to have some more cryoablation on a few of my larger growths.

Conference Update

Having had a suspected severe angina attack on Tuesday that started around 7.30 and didn't ease off till 3am Wednesday morning, then still feeling ill till Thursday it was debatable whether we would make Saturday, but I just keep pushing myself that extra mile and besides I hate letting anyone down as I had to make a speech and leaving it so late would have caused Liz another headache.    So the four of us arrived in London around 1.30 and headed to the hotel, thankfully we made a fast train and the journey passed so quickly, much faster than flying and probably the same price.

Liz had promised to go and vote for a friend's picture in the ICA, so we headed to the Mall in search of the gallery and popped in, I must say I am pleased it was free as looking at some of the art work it beggars belief that some work is called art, and some of prices they expect is unbelievable! 

Honest I was shocked, I forgot to take a photo of the one we voted for but all I can say is it was to a higher standard than these, but then who am I to judge.  There were some strange things on show too, the best thing in the room was a statue made from bandages and plaster of paris, soldiers coming back wounded in the first world war.  Now to me that was art.

Hence we didn't spend long in the gallery and made our way to Trafalgar square.  Had something to eat and a walk around Convent Gardens.  We listened to an Opera Singer, who was really good, then made our way back to the hotel.  By then my kidney was aching badly and my heart quite a weight in my little chest.  The one good thing I do know is that my heart is strong so I truly believe the pain in their is the meso getting up to its old tricks.  But how long can your heart sustain such pain?

Getting back to hotel I just wanted to step into a red hot bath, oh no it was a walk in shower, so I climbed under the duvet and went to sleep for a couple of hours.  I had a terrible attack of the sweats and I must admit the bed was soaking, we had to leave the sheet back so it would dry for the night.  Feeling somewhat alive, barely, we went down to eat, it started to rain as we decided to have a walk along to St Pancreas and look at the new shopping arcade inside.  Then back to the hotel.  A quick drink (£30.00) for a round of drinks for 4, if hotels dropped their prices maybe more people would fill the place!  I disagree with the built in service charge, tips should be on service no expected.

 

Just as we were coming back inside the hotel, waiting to greet me was Debbie, she had spied us walking out from where they were hidden in the corner.  It was wonderful to see her, its been quite a few years.  Mind I honestly think she didn't do herself any favours making the way to the conference, she looked tired and you could tell she wasn't well.  I had emailed Mavis on the Thursday saying I wasn't sure about going and her reply was we are all ill who go, which is correct, but Debbie has really pushed herself to get there.  It is good but at the same time I do worry about her, if her health fails then there isn't another one to replace her fighting spirit in her area.

 

Considering the cost of the room, the bedrooms were nice and spacious, the beds soft and comfortable, the pillows rock hard.  Neither Gary or I slept very much, we couldn't get our heads comfortable, both had stiff necks the next morning and I had bad sweats again.  As we only had one bath towel each I couldn't dry myself off so I pushed him to near out of bed and we both slept on his side, me trying to find a dry spot.

 

Standing outside the next morning we didn't see many people enter and thought oh no not many have turned up, we didn't realise you could access the conference area via the main lobby!  It was lovely to meet up with people I knew via the Internet but to see Heather again made my day. 

 

Chris and Ann were there from MKMRF and it is great that Chris has got the Tissue bank up and running, lets hope that the Doctors around the UK will send tissue for the scientists and researchers to be able to get to finding a cure for this miserable cancer.  The tissue bank is something that should have been set up years ago, had it not been for Chris it still would not be so.  Hopefully too, her stand made much needed money to go to her charity which funds so many things for mesothelioma.  The June Hannock Fund also had a stand and they too donate a lot to Meso UK, these two charities do wonderful work and long may they continue.

 

Dr J Steele chaired the conference and told us of a two new trials, one surgery vs chemo and a new chemo mix of Pemetrexed and Cisplatin together with an agent Gantespib.  No one can pronounce it!  John Edwards was unable to attend so Liz stood in and talked about surgery and which hospitals carry it out.  Then a lovely Surgeon talked about surgery for Peritoneal Mesothelioma, only around 250 cases a year, a small figure in comparison with Pleura.  The only hospital to carry out surgery for this type is in Basingstoke.  They do a wash with chemo when the debulking has been carried out, apparently this can't be done in the chest because it can cause all types of problems.  Speaking to Graham who had surgery in 2002, he believes he had a chemo wash, maybe that is why he is still doing so well.

 

I met a young man and his wife, he is 44 and just diagnosed, his battle is now starting and is going for the surgery option.  It has come a long way and I hope he has better success than I.  Although I did warn him the first few moments of realising the pain and what you have put your body through is terrible.  Strange to meet someone at the same age I was just starting out on this terrible journey, it brought back sad memories.  I am sure I was the only one there that has had so many treatments, 2 cycles of Chemo, 3 surgeries, 3 rounds of radiation and 3 cryo procedures, most at the most have had 1 of each.

 

I took the stand and did my talk, reading my words I could feel myself getting breathless, Liz, bless, offered me some water, I told her I would just cough then lost my place.  I ended up looking to the back of the room and free speaking, I understand from those who listened that it went down well, I must admit I have never heard a room so quiet.  The words just flowed, but then I would be passionate about this cancer and what should be out there, I live and breath it everyday of my life.

 

The adrenalin had kept me going, as my wonderful hubby predicted it would, we left just as lunch started, I am starting to consider his feelings and instead of me pushing my boat as far as I can I am towing myself in so he doesn't have to pick up all the pieces from my body breakdown.  Hence, why I am worried about Debbie, their isn't a Mr B to pull her back in when she is wearing herself out.  I must admit though I really did want to stay till the end but that would have meant us coming home around 9pm.  I also had a phone call from home, Bear wasn't eating and his hips are now and truly doing the Elvis, Lexi is worn out from him constantly standing over her and Chris needed to run errands but didn't dare leave them alone.  So arriving home at 5 instead of 9 was the right thing to do.

 

I met Denise and her partner Sid too, what a lovely couple, again a tragic story, her chemo didn't work and is waiting to see what treatment she can try to curtail the growth of her mesothelioma.  I hate this cancer with a passion.

 

Needless to say I slept well last night, although Gary had to wake me up several times as I was having bad nightmares and the sweats.  When we got up I noticed the house was cold, guess what the heating has broken down again!  This new boiler seems to breakdown all the time, our old one hardly every stopped working, I wonder why did I have to change the house and put a new boiler in!  It is so maddening as it is cold.  Outside warmer than inside I went with him and the dogs over the field, it was lovely we sat under the oak tree for ten minutes but sadly we talked about meso and what the hell am I going to do.  Once I see the heart man and ensure it isn't my heart then instead of the trial I think I will need to go straight on chemo, my prayers hopefully will be answered and it will do what it says on the label, otherwise I am up s*** creek without a paddle.

 

I also asked J Steele why can't someone from abroad use a hospital and could Dr Abtin use his?  He told me to enquire at the London Clinic so on Monday that is a job I am entrusting to Gary.  If I could get somewhere for Dr Abtin to do his cryo-ablation then maybe he can treat a few of us at the same time.  I will let you know if I will be allowed to do this and if I can I will post a notice to see if anyone would be interested in using his services.  I am sure it won't be cheap but it can't be as expensive as travelling to the States.

 

The ironing board is calling, at least if I do it I will keep warm.  One last word, to Steve who starts Chemo again after 3 years of remission, I hope it goes well and he doesn't suffer to badly.  Just the thought of Chemo and my nerves start!

 

To my meso circle I wish you stable and remission, stay strong and hold you ground, we need to fight to get them to listen.  Also one other note, there are no written rules about oncologists treat us, only a few guidelines on what to do.  This may help you when your onco tells you it isn't allowed, ask by who?

 

 

Wedding Anniversary

16 years ago today we had temperatures up North of 26 degrees, the summer really was nice, the gardens were beautiful and the church was over hot.  We had to repeat our wedding vows because we missed our surnames out and the wedding was stopped by the registrar so we had to begin again.  The nerves of the poor minister after that were terrible, he kept dropping his notes and was pouring with sweat. 

That day seems like yesterday, it was so hot, the weather summers were once made of, in fact I think that is the last proper summer I can remember.

Neither of us thought I would still be here today but thankfully I am, if I hadn't been married to hubby would I have put myself through the same tough treatments - I just don't know.  Does it come down to who we are with at the time as to whether we hide our heads or get down to a fight. 

Hubby is off to see the docs today about his stomach, I do hope today they decide to send him for some tests.  I am hoping they say you have to cut down on the Bacardi and cokes, maybe his stomach might shrink!

Well have to shower and get to work.  Hopefully will be writing this time next year and celebrating another anniversary.

8 years ago

Before I knew the name Mesothelioma, 8 years ago today I was starting with my usual bad neck, now having a walk in clinic at James Cook I knew when things got worse I could just walk in and see a doctor.  As my birthday looms it was that fateful day that he told me I would require to see the surgeon.  Yes I spent my 44th birthday sat in a waiting room in James Cook.  The XRay was the same as the previous month, fluid filled the pleura space and he told me I would be seeing the surgeon.  I had it drained off again that day, what a lovely birthday present!

At that time I was relieved that at last something would stop the endo or find what else  was making me so ill, this had been going on now for 4 long years, and over that last 7 months I was never without pain, my three monthly cycles had stopped. 

I remember seeing the surgeon on the 29th of July, Dr Owens, a very warm and enthusiastic man but he was direct.  He told me opening up the chest cavity was dangerous and would probably cause me more pain than what I was in!  I thought how can that be you'll cure what ever it is that is going on in there.  After all we were all sure it was endo.  So much has happened to my poor body since then.  The pain from the first surgery was bad, especially when he did a near decortication then, followed by another operation a couple of weeks later.  I still remember that first V.A.T, I was shocked when I was told I had spent nearly 5 hours in surgery, hubby was grey when I first saw him, not that I remembered much. 

You would have thought I would know better after that to then go through the next surgery in 09 to remove the whole thing.  Shame that Dr Owens hadn't done it then but who's to say I would still be here now.

I have deferred my CT Scan till August, and hopefully only get the results in September after we get back from the cruise.  I wish there was something I could take that wasn't toxic to kill this nasty meso, the thought of what I went through in 05 and 07 doesn't make my body\mind feel any better.  I know that there are a few people going through chemo now without any major problems and I truly wish I was one of them.  Seems to me those who have no bad side effects seem to do the best on remission, and I can name quite a few.

Denise is managing to carry out her normal daily life, a friend abroad is doing the same, Chris who went through chemo with me in 05 is still like an ox.  Maybe with being a few years older this time the chemo might have a different effect.

I have read that SS1P is doing so well in the States, I wonder if that trial would start up here?  It doesn't sound as toxin as chemo.  Why can't we just take a pill and be ok, like migraine or blood pressure.

I am terrified of dying, after spending a week enjoying the sun and relaxation it made me realise that life isn't just work, but even if it is it is a life I really do enjoy.  I can't imagine not waking up, but even worse I fear the end.  I know I have a long way to go yet but I am scared, I guess I wouldn't be normal if I wasn't frightened of dying.

A friend in Oz is so low and being so far away it is hard to help, her partner has the meso.  It is true us women are better fighters and don't give up so easily.  Either men give in or won't talk about it, have you noticed?  They feel they aren't being strong if they do open up or bottle it up and keep everyone at arms length.  I feel sorry for wife\partner caring for a man with meso.  I know men don't really want to talk about it, I find it hard having a conversation with my own husband, he doesn't want to talk or face the future.  I'll say are you ok if I answer no he has that look and then doesn't respond.  Maybe that's why I do this blog, it gives me a voice to air my thoughts and babbler on about everything and anything.

Lexi has gone to the vets so I had better sneak into the shower and yes, get ready for work.  Oh the joys of life!

Sunday Meso Sunday

I haven't been at my best this week, mentally I have been up and down and having made the decision that I am not going to do anything until September for treatment I am now setting my mind on staying well.  On Wednesday I had healing but on Thursday night I had one of my reoccurring dreams where I am throwing up, but I can't get it out, on Thursday I was throwing it completely up, I hope this is a sign that maybe the cancer is reducing - now that would be a miracle.

For the first time in a fortnight I got over the woods with the dogs, Bear and Lexi stay by us when I am there but today he could sniff the cattle and sheep and was going a little too close to the fence.  I'm sure the young bull got a scent from him because he started towards us - I doubt I could run fast enough!  Last week Bear went into one of the thick undergrowth's after a rabbit and we found a tick on his head when he came back so now I am paranoid of him getting them.

The Cattle taking care of the lambs and Sheep

At the top of the ridge I decided it was time for a rest and I just couldn't resist taking a picture of them both waiting patiently for me to get up.

It's been a sad week for us also, as its 3 years since our Tyke died and on Wednesday it will be 7 years since I lost my Dad.  I can't believe it, 7 years since I last finished my first cycle of Chemo either.  Where has that time gone.

Lexi & Bear taking a breather!

I heard from Graham this week and am pleased to say that he is doing ok and even met two other gentlemen who had surgery, 5 and 3 years ago and both are symptom free, I am so envious but so pleased to hear this. 

Tyke as a Puppy

I have heard from a couple of Mesothelionians who are on chemo at the moment and all seem to be getting results.  That is the kind of news we want to hear, but just the thought of the needle let alone the poison makes me shiver. 

 Although I've been in the office all week I didn't see my eldest brother till yesterday morning when I popped in for a couple of files.  His first question was why couldn't the Doc in London do the cryo, why have I decided to hold back any treatment, honest it was the third degree.  I know that my brothers worry but sometimes I don't think they, or should I really say him, understand that you just can't keep putting your body through treatments.  It is only a year since my last cryo, but then a year in meso time can be what is left of someone's time.  I have been lucky that I can say it's been a year since I last tried something.  I was speaking to a newly diagnosed lady and  my heart went out to her, her life as she knows it has just crumbled, together with that of her family.  No matter what cancer you are diagnosed with the feeling of helplessness is the first one.  She has been told that she had time to decide what she wanted to do and I must admit she has already started chemo, in total it is 6 weeks since she suddenly took ill.

On an ending note, as we drove back from the fields I saw my eldest brother in the tree's, chain saw back in hand.  I don't know how he does it and never seems to get tired, up at 5.30 every morning and to bed at 11.00pm earliest - wish I had some of his energy.

Thankfully H & S aren't about!

Whatever you are doing this Bank Holiday I hope that your meso doesn't get in the way of your family life - it manages to ruin everything else.

Prof Fennell at Leicester Hospital

It was wonderful meeting up with Liz again after such a long period of not seeing her.  I had meant to take a snap shot and post it on the blog but I have a memory like a sieve.  The drive down to Leicester took just under 3 hours and we made excellent time allowing us a good 40 minutes with Liz before we met the Professor.

Professor Fennell has a passion for Mesothelioma and wants to help us find a cure and stop the needless dying from this terrible cancer.  I also didn't realise that Mesothelioma UK was born out of Leicester Hospital so that came as a shock to me also.

I came away from the consultation more confused but more positive for the future, there are several trials going on for meso which I may or may not qualify for, but the most important thing I found out yesterday that if I jump on any trial now it can exclude me from a trial that is directed for meso later, not what I was told beforehand.  I must admit I was lost off and pleased that hubby has a better memory than I, but also the fact that Liz will kindly send me the current information of what is on where so that I can apply.

We discussed again the ADAMs trial, which on all accounts is having good results, the only problem is that 2 out of 3 actually get the drug, so if I were to try that one its better doing it now than later, just in case I had the placebo to start with.

Then there is an immune therapy and chemo trial going, on this you still get chemo and a 50/50 chance you get the stimulant as well. 

It seems they still put an average of 4 - 6 months on remission after taking chemo so in the light of finding that out yesterday it seems I and everyone I know who has taken Alimta has done better than expected and we far exceeded the standard.  He did mention me having another go with Alimta and I saw hubby's face hit the floor.  He is really scared that I take that route, to me I know that my insides seriously suffered and that the toxicity level for my body was too high but I am willing to give something a go if I can buy that extra time. Although if I did do alimta I would prefer to be hooked up to a fluid drip with painkillers mixed in.   Therein lies another problem, when do we put ourselves through the chemo, 4 to 5 months of our lives could be (or in my case) ruined with the side effects.

It made me wonder, whilst travelling back yesterday, how do people cope when they know it has spread to other areas, or those with bone cancer, how do they a) deal with the pain and b) deal with the thought that their life will soon be over.  I feel guilty about not making more out of what I do, but then what else more do we do with our lives than spend it with the ones we love.

I hope that Prof Fennell gets Leicester Hospital on the map for a No 1 Centre for Mesothelioma, with several trials running, each with good results (a mini USA all rolled up in one hospital) -  although it would be nice if it was Bobby Robson up in Newcastle for the simple reason it is closer to home.

One thing I know for certain is that Liz is still passionate about helping those with Mesothelioma and will drive mountains apart to ensure we get the help/compassion/assistance and more importantly the straight answers that many of us want. 

It is true that many do not want to hear that things aren't doing well and would prefer to hear stable rather than change, even if there is change - if my hubby had had meso he wouldn't want to know, whereas I need to know. 

I am sure I will hear from Liz shortly and I will then pass on what options are currently available and where.

Weekend Walk in the Wind

It was a great Saturday and Sunday out with the dogs.  Although hubby had to drive down the field for me as the wind by the gate was too strong and I really needed to get some fresh air into my lungs.  Although it was quite windy over the woods I took my camera and got a few shots of the dogs doing what dogs do, sniffing every patch of grass where either a Rabbit, Deer or Fox has walked over.

The trial I was going to see about on Friday was pulled as a person on it had terrible skin problems (something like his skin was falling off).  I thought I was just going to authorise them to get a sample of my tumour and talk about what they have on offer - not to actually sign the dotted line, guess I was saved from making that decision.

It was great too seeing Chris Knighton on the regional news along with two other meso sufferers that I know, Peter by email only and Chris who went through Chemo with me back in 04.  They both seem to be doing so well, although Chris has always been in a far better situation than me with this cancer.  Good to see that the alimta did do its job there.

My scan is looming, and hopefully by Friday I will have the results - that's if they go to the Doc's.  I'm not sure now where they will go.  I have a feeling I should be ok on most of the growth apart from where my third boob resides.  Have had some tingling and nipping movements going on in that region, although saying that my iron box in the left side feels a little more solid than normal.  Yet it doesn't necessarily mean bad news, it could just be a muscle or nerve has touched the damn cancer and is sending peculiar messages to the brain.  I am noticing this time round that I do get short of breath, something I never really experienced before apart from when I had pleurisy, and I must admit I don't like it very much - uhm maybe I should rethink the what the results will say.

I was just telling Lisa today that it was April 10 when Dr Abtin said he saw growth on my left lung, it took till December 10 before that was recognised on the scan results here.  It will be a year soon since I went back to LA for cyroablation and if things continue in this pattern I just don't see a problem for a while apart from being uncomfortable in bed and waking up and of course the burning and nipping and not forgetting breathlessness.  Mind the latter may also have something to do with me being sat in front of this damn machine and smoking everytime something went wrong on the website that I am doing!  Why did I ever let someone give me a drag of a cig - even worse why was I so weaked willed to accept it! 

Guess that's it for today, I hope that however you are experiencing meso be it you or a family member I hope remission is on your side.

Am I or Aren't I

I can't believe this time last week we had a garden full of snow and this weekend it was just bitter cold and icy.  I have had a strange week too, after feeling utterly down over my aged looks (vanity I know) then releasing how much more the camera brings up than the naked eye (I felt a tiny bit better) and seeing that my eyes know longer want to close at 1pm or there abouts I felt mentally lifted.

The body front, unfortunately, isn't as healthy as my mental state.  I have had more aching in the left and fire balls occurring this week.  I know that my 3rd boob solid lump has faded but I think that is more due to the fact I have weight back now in that area and have what I would say is a reasonably chest instead of two thin bits of skin falling forward when I lent over - too much for the imagine to deal with I know.  But the lump has hidden back within the fat of the boob for want of a better description.

Infuriating pain

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!

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.

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