Sunday Oh Sunday

Saturday I was extremely tired, in fact I bet the sofa was as tired from me sitting on it all day as I was being there.  Funny though how sitting around can make you that much more tired.  I even had to have help getting up.  I am not using my legs enough so am losing the muscle in them, which I know I need to do more exercise and build up the strength in those calf muscles and of course the thighs.  I have pin sticks for legs now!

 

I did manage to do a little wrapping, I helped Gary, we only got a few done, but  at least they are wrapped, although I still haven't got my postage ones done, nor have I actually finished writing cards, I had thought I had finished but realised I found another list I had missed completely, many of which are the meso community.

 

He left me alone for a few moments in the dining room and as I stood my legs gave way and I fell to the floor, boy did I knock my arm on the side table!  So that was that, back to the living room and back to the sofa.  My poor bum has no cushioning and is getting rather number these days.  Simple things now seem to take a lot of energy that I just don't have.

 

I have also developed a slight cough, have no idea why but from my experience in reading what happens to us I guess this is another symptom we get.  An irritating cough for no reason what so ever!  I hate this bloody cancer.

Friday was good though, our niece came over and as a shock to her we went to Tesco, she never goes grocery shopping either.  She had the trolley and Gary me in the wheelchair, well that was fun.  At least he didn't knock anything over, but what a total different view you have from a wheelchair.  There were a few on scooters in the store and boy do they move, flying up and down those aisles regardless of who is in their way, I nearly got ran over by one...

 

Strange though because I found the whole experience tiring too and found when we got home I could hardly keep my eyes open, although when we got back I did need to take some morphine, I had such a heavy pain in my centre chest and found breathing difficult.  So the morphine and the exertion and excitement had worn me out!

 

You would have laughed in the supermarket.  We passed the banana's and boy did they look tasty, so I said why not get some, I can't have potassium can I!  I am stupid or what.....

I was dreading bedtime again, knowing that once I laid down that pain and obstruction would come.  I know it is stupid but I do believe this tumour I have seems to rest on an awkward part of my mechanism inside, hence the problem with getting my chest moving.  So I did what any sane person would do and took a tamazepam.  I slept until 3.45 when the call of nature came, I really didn't want to get up as I knew movement would set it off again but I didn't have a choice.  Plus my mouth seems to get so dry during the night that I needed to take a drink.  Gary woke the moment I pulled the sheets down, half asleep and not wanting to be woken up he reluctantly got up with me and helped me walk to the toilet.  I had only taken 3 steps and I couldn't breathe again. 

 

Once back in the bedroom it was trying to stay down and not let that consuming fear of not breathing take over, but with him holding me gently and talking to me I soon drifted back to sleep.  I was so pleased the next time I looked at the clock and it was daylight.  I don't know why but daylight makes me feel better, maybe because I've got through another night.

Last night was the same again, although the chair lift is helping I still get out of puff at the top, I guess from changing seats, that will change shortly when the full run is installed.  But at 4.00 am that blasted call of nature, last night wasn't as easy to get back to sleep but with his gentle voice whispering in my ear I did fall back into a deep sleep.  We woke at 9.15, a sleep in!  But on moving I didn't feel that good, I came down stairs and went straight into the living room.  My mornings are even changing the routine now, as normally I would be in the office and come on the computer to catch up with face book and the blogs our community post. 

Today was hair wash day too, I had sweated loads again during the night, the chemo is certainly working as when we drained I got only 400 out, so obviously the tummy area is being knocked as it isn't producing as much inflammation in the lining.  Instead of him showering upstairs, he actually got in the shower with me and did my hair, this saved me a lot of energy, although I bet he felt the cold every time he moved away from the shower head!  He is so good, I don't know how people cope with this cancer on their own as he has been there every step of the way and helps with just about everything I need.  Once over I would have been embarrassed at having to ask him to make a cup of tea while I just sat on my backside, but he is running around all day doing for me.  At least I guess it will keep his weight down.  But most of all, he is feeling useful and that is important.  We are fighting this cancer together, once over when I was just in pain he couldn't do anything, now he is able to at least make my everyday tasks a lot easier. 

You forget you are on chemotherapy when you take a pill, I guess mentally it isn't the same, but nonetheless I am still putting a chemical in my body that is whacking my good cells and well as my bad.

I do fear that my deterioration will get worse but I still have hope that after chemo I will be back to where I was earlier this year.  If I have to be in a wheelchair to go out then so be it, but in my mind it would be great to be able to walk again without its aid.  There was no way I could have walked in Tesco, I don't know why walking is getting harder to do, which just keeps me coming back to this new rogue tumour hanging on my bronchial.  How dare it!

 

If tonight goes like last week, then tonight is the killer of all nights.  I think I will have Gary set up downstairs before we go to bed, just in case I end up having to sit there all night.  The chemo does give some insomnia and I know the knock tablets should get over that but as I have been taken them more often they don't seem to have the same effect they did at first.  I am also very careful on dosage and will not take more than I think I should.

My poor Macmillan nurse has also come down with a sore throat and maybe a cough.  She rang Friday to ask if I still wanted to see her, but after the last time I had a nurse with an infection my answer was an instant No.  She will keep in contact though and probably will hear from her Monday, I just hope she isn't too ill and it doesn't take a while for her to get over it.  I like her visits, she always makes me laugh, she has one of those welcoming faces and always with a smile.  Plus I can talk to her and she relates to what I feel, also to how Gary is. 

 

It's now 2.40 in the afternoon, I have just started to feel like I have some energy to do something, hopefully we might just get a couple more presents wrapped, but at the moment Sunday dinner is in the process of being cooked.  I can smell the roast potatoes and boy do I feel hungry.  That's another first for me on chemo, although I hate the taste of most of the dinner, especially my favourite - gravy, but do look forward to a roast.

 

These heat waves are so unbearable but I guess part of the process too.  At least they don't smell like the cancer sweats of eons ago, dead rabbits was what I always said it smelt of.  I can't put a scent to this lot.  But boy do you pour, especially the forehead and the back of the neck. 

 

I hope to report tomorrow that I didn't have an all nighter on the sofa and that the only bad thing that happened was the amount of heat my body pushed out. 

 

To my fellow fighters I know its hard, we want to give up sometimes but then when that good day or those few hours arrive where life feels good it all seems so worth while.  To the people who love us and care for us, it is hard, it is emotional and it is wearing you out.  Having to care for yourself and someone you love is a task that people don't understand unless they are doing it themselves.  From the bottom of my heart I thank you for caring.  As I said at the beginning I would hate to think I was doing this journey on my own, I doubt through the night I would survive those attacks.  It makes me think about my poor late mother who had COPD, did she have these?  Did I do enough for her when she was alive.  I know there isn't any going back but this is when I start to worry about Gary, what will happen to him when I die.  What if he is on his own in his late years and needs company.  He has been with me every step of the way, I couldn't bear to think he went through something like this on his own.  In fact we shouldn't have to be going through this now, none of us.

 

The holidays will be hard for many this year, my heart breaks for you all.

Chemo no 4 - Cycle 4

We had high hopes today that we would accomplish wrapping present this afternoon after my chemo, which was due at 1.  The district nurse was on time, Glendale came to give the house a lick and a polish and to be with the dogs.  Gary put a belly pork joint in so it would roast slowly while we were out.

We left the house at 11.45 just in case traffic was bad, we arrived at 12.48 at the chemo lounge and were called in.  The nurse was a male and not in a cheerful mood like the other staff have always been.  I gave him m blood report and my little red book.  He sent us to a seat and we sat quite happily waiting.  He arrived with a pillow and said my bloods were short, no liver function had been done, would need to wait for the resuls, at least an hour and a half .  He did my stats, keeping the screen away from our viewing, so I asked, he wasn't that happy telling me the information, why not its mine!  So off we went for a tea down in WH Smiths cafe, £6 for 2 small packets of crisps and 2 cups of tea, what a rip off!  

Back to the lounge, sorry your bloods are showing your potassium is significantly out of range since Monday so we need more bloods.  We will probably have to admit you so please stay here.  Another arm and more blood.  Then I was called into a 4 bed ward as they wanted an ECG.  I explained I had had a full heart check yesterday and everything was fine, I feel fine, I don't feel ill.  We heard him order my bed for the night. When someone came to do the ECG we told her I had a faulty T4 on the test, I'll tell them, she said.  The male nurse returned with an admission report and he filled it in, only asking the occasional question of me.  Gary asked if he had contacted my own oncologist he said yes but he hadn't taken the call.  Gary kept going on about him speaking to him which was making the nurse more agitated, he walked off then came back with a cannula.  I jumped off the bed and said no way, only if I am admitted would that thing go in, he stormed off muttering he would do it later.  We sat around, my stress level rising.  I emailed my oncologist and said please help they want to admit me!  

A doctor finally arrived, so we went through the facts, including I had had ascities, which wasn't recorded apparently and explains some of the potassium, also the T4, which no one had passed on.  The doc listened to my heart and lungs then said My oncologist had signed me off and I could have the chemo but I needed to send bloods in for Friday.  I can understand them being cautious but this nurse did nothing to elevate my stress, instead just caused it.  Plus introducing a cannular when it may not be needed is stupid and a waste of medical supplies.  

I spoke to another lady who was having treatment, when I said asbestos cancer, mesothelioma just went over their heads, she and her daughter both said  "that's an old mans disease" so it seems people still think that.

I also read today that although myeloma and melanoma have similar mortality rates as meso yet meso had only £400,000 spent on research as recorded by The National Institute Of Cancer in 2011 whereas £5 million was spent on the other two.  This country has the highest death rate of Mesothelioma in the world at the moment.  Money needs to be appropriated to research on our cancer, we need to raise our voices but also hope that the new amendments in The Mesothelioma Bill will bring back the research fund originally included in the Bill.

I apologise for any errors but I am shattered and also doing this on IPad, so can't see everything I have written.

I do hope you had a better day than me and I hope that tonight the chemo just settles in and gives me a good nights sleep so I am ready to fight that tomorrow.

Stair Lift and chemo

I never envisaged the day I would not be able to climb the stairs and as time has gone on since September those stairs have really become a challenge, that much so that I shower downstairs and only go back up at bedtime.  Needless to say by the time I have reached the top, stopping at both small landings, I am totally breathless. 

 

Finally I gave in and rang a couple of chair lift people, one said he would be out the next day, NorthEast Stair Lifts, as recommended by my Macmillan group.  Well a young engineer called about 4.30 the next day, said he knew nothing about the job but was asked to come and see us.  He left saying he would have someone from the office ring and rearrange with another surveyor and sales person.  I am still waiting.  Thankfully I also organised with Dolphin Lifts & Mobility, normally I don't mention company names, but this company are outstanding.  The director called out yesterday, we decided before he left to go ahead and he has offered, foc to install a couple of straight pieces in so I can manage until ours is manufactured and installed as a one piece.  Guess wanting a lift this time of year is hard, companies are getting ready for Christmas Shutdown in 2 weeks.

Ok it may be a few hundred quid more expensive than the first one but it is also peace of mind, if the first can't be bothered with selling me one what would service be like if the chair broke down?  Not forgetting the gentleman who took my call was quite rude at the same time on the telephone.  So I am pleased with my decision.  Monday the free lift will be fitted and I can then look forward to bed time instead of seeing it as a really horrible task.

I had looked at an elevator, but we are just 10cm short for it to fit by the stairs, I don't want building work to be done so that unfortunately that is that.

 

I didn't wake up feeling that great yesterday, the pain in my chest was quite prominent so I took 60 ml morphine to knock it back.  It actually worked so once the pain was under control I did feel a lot better.  The chemo hasn't, so far, made me feel any worse but I am hoping the pains are worse because the chemo is doing its job.  It did in November 2012 so I have to hope it is now. 

 

I am annoyed, if that Dr P had taken the trouble in July to maybe look at options for me instead of telling me he would never treat me again with anything maybe this 6cm tumour would not be hanging in my chest and I wouldn't be breathless or in pain.  It seems to me across the country the whole system is so different.  The moment someone in the South has change they are offered treatment or trials, mine has always been lets wait until the next scan etc.  I don't know what is best anymore, holding back a couple of months to see if the mesothelioma is slow growing or to go straight in with a mm of growth and zap the bastard.  All I know now is that I am in the serious stuff here. 

 

That's my news so far, I am hoping for more painfree day but I will have to wait and see, although I have already popped some additional morphine just to get on top of that centre chest pain.  Hope the chemo is blasting it's cells to pieces.

 

 

 

I am having to look for a wheelchair so I can get out of the house, walking has become so restrictive that I can't go anywhere. Although I won't be able to use it to take the dogs. can't see it going across the fields and through the woods somehow.  Gosh I wish I was fit again, why has this taken on so much and so soon.  I could walk in the summer, now 10 yards and I am done for.  I have to pray that the chemo treatment will work and that by March I will be back over the fields with the dogs and hubby enjoying life again.

 

I still haven't finished writing my cards or even getting presents wrapped, I did start in plenty of time but with my feet swelling up, standing wasn't a great thing to do.  So after going to see about a wheel chair today I am hoping to get the Christmas Presents finished and the cards done ready for posting.  Everything seems to take so long these days, yet time passes so fast!

 

I have again had an article published by Mesotheliomahelp.org which you can read here I like writing for this group because again it is getting meso out there and the views of others. 

 

I was totally knocked back about Steve's Scan, he has been doing so much recently, running around, visiting etc yet his meso has changed.  My heart goes out to Linda and Steve as it is only a year ago since he too last had treatment to buy more time.  Why do some get years and some of us only months.  Many often wonder is the 5 months treatment is worth the 6 months of life, I would say yes because quality only happens when the treatments are given.  Without treatment the symptoms of meso are painful, ok chemo is horrendous but the pain of the cancer is worse.  As it grows it is damaging more of the inside, pressing on more nerves and eating away all the goodness that our bodies require.  I know that Gary would disagree on part of this as he says he would have given up on the fight years ago, but unless you are the one truly battling to stay alive you don't really know what you would do. I truly hope that something will be found that suits Steve and he gets to fight again and once again put meso back where it belongs into remission.  As Lou in the states says, there is no remission each day we live with mesothelioma and yes we do. 

Struggling On

Monday was a hard day I can't deny it.  After writing my blog I sat on the sofa feeling rather low and wishing I could close my eyes and at never wake up again, but then I want to live but not like this.  After a while Gary got me motivated to shower, it took every bit of strength I had to stand under the water but I did it and felt better for being cleaner.

The district nurse arrived and the doctor was called, she was as concerned about the way I felt as I was.  Our surgery is fantastic, no 20 questions about why you need a doctor just not a problem.  I also rang the Macmillan office about a chair lift for the stairs, My Macmillan nurse is off this week, they promptly said it was the district nurse who sorted things like that out.  So I asked my district nurse who ended up having to ring Macmillans for the information, something wrong here I think!

 

She rang back with a company name, so breathless as I was I set about ringing them up then rang a couple others as the gentleman I spoke to at their preferred company was rather rude.  When I told Gary the price he blew his top.  The one the MacMillan use don't rent for curved or angled stair cases, another company quoted over £6000 just for a piece of pipe and a chair that plugs in, crazy.  Also how long will I need it for?  So I have decided to look at a lift.  More expensive but will be here forever and then when Gary is an old man he can also access upstairs.  The chair is a good idea but it can also take room from getting large objects up and down.  My job today to find a lift company to come out asap, I have wrote several numbers down.  One did come back yesterday and considering it's still only a box on a piece of metal it was £9,000, but I believe better value than the chair lift.  We have room by the side of the stairs so no unsightly holes in the landing or any rooms upstairs.

 

Anyway back to Monday afternoon, my GP arrived and although I was much better I still looked like death warmed up.  My breathing had settled, probably because we had drained, but draining is causing an unusual pain.  It's not like when you are empty this is in my kidney and its sharp the fluid is still coming out but I can't handle it so have to stop, hence not getting the whole amount out.  The doc listened to my chest, a little fluid possibly in the right, forget about the left lung completely.  He decided an Xray so asked me to have Gary call at the surgery and pick up a form.  Back on steroids again to help lift my mood and possibly help with the breathing.  To be honest if Monday had been Thursday I would not have got to hospital for the oncologist or the chemotherapy.

 

We watched the debate on the Mesothelioma Bill, I got quite annoyed a few times at the debate.  The bill is Meso and I do feel sorry for those with plaques (my brother has them) and asbestosis (he has that too) but this bill is Mesothelioma, please lets get it sorted.  People like me are ruled out of claiming because I wasn't the one employed

, any family member contaminated is not allowed to go this way, a couple of MP's are pushing for this to be changed.  I emailed quite a few as the debate went on on Monday night but have heard nothing back.  Then this 75% of claim and this admin charge plus legal costs.  Some wondered why it should be paid after death, what is wrong with these people.  Widows are left without finance for the rest of their lives, many wives don't have full stamp payments because they looked after children etc or worked part time!  Boy did my temper flare a few times.

 

I took another knock out pill Monday night and didn't wake up until Tuesday morning.  I did feel a lot better once I got the steroid in but still breathing is painful again.  The man was supposed to come about the chair lift so we waited, a young lad arrived about 4.20 last night, he said he was told last minute to call in and had no information or idea on what we needed.  I felt like telling him to tell his boss where to go.  I doubt I would use them with that kind of service or the manner in which he dealt with me on the phone.

 

Yesterday I had Liz call in for a cuppa then Chris came over on the afternoon for a while.  I am tired but the moment I have to go to bed and have climbed the stairs I am physically wrecked but wide awake because I can't breathe.  I should have drained again last night as my chest is so tight and was during the night, trying to relax when you are taking shallow breaths isn't easy.  I know when we sleep we change to shallow but your mind doesn't like it when awake!

 

I hope that the oncologist can give me some good news on Thursday, although really as his longest survivor he is really looking at me for what happens to people past this point.  I wish I could have surgery to either repair the diaphragm where the fluid is getting in or remove the tumours in my stomach, not that I know how many there are or where they are.  I did email Liz and she said it takes 2 cycles before I would notice any difference.  I just can't bear this fluid, it is killing me.  How do people cope with this?  I always had a fear of dying grasping for air but now this added crushing and shortness of the chest has turned my fears into nightmares.  If this never goes I just can't see a way forward of having any quality of life.  Pain killers don't help ease this either so pointless taking morphine.

 

Last night Bear was giving me a look of don't you love me anymore mam.  I can't get down to stroke him anymore but I asked Gary to help me down on to the floor and I snuggled up to my baby boy for a while. 

The moment Gary lifted me up from the floor Bear started barking at me wanting more but I was breathless, just rubbing his belly was hard work.  I feel like I am missing out on so much at the moment.

 

No news on the Xray either, it would be great to hear I had some fluid in the lung but I do know inside its the diaphragm leaking upward.  How can I sleep will become another issue shortly, probably have to change beds around so I sleep part sitting up!  Not the most comfortable as your back hurts and so does your bum!  Had to do this after surgery and boy was it uncomfortable.

 

Well that's my blog for today, hoping that Amanda and Ray get good results on their scan and Mavis is due for her results together with Steve.  Fingers crossed for everyone waiting and to my fellows on treatment I pray you are doing well.

 



 

 

Mind or Matter

Yesterday I had hubby come into work to start learning some of the bits and pieces of my job, I have hoped he will eventually do it when I am gone, more so because it is a family business, even if it is large, and who else would I trust with inside knowledge.  Even being a sister it took years to be truly trusted with some of the things I get involved in, so you can understand how hard it is to pass some of the work on.

 

I was pulling heavy laden files from behind me, lifting them from one side of my workspace to another, straining to reach bits, sharing your desk space is quite hard.  I ended up working till 6 as well, although he had long gone, but I had lost valuable working time explaining just one job.  When I came home I already could feel the heaviness starting in my centre chest, I knew it was my heart, these pains have been back for quite a while but not like yesterday.  By the time dinner was over the pain was spreading to my shoulders and neck.  He went into the other room to watch the football and I went into the lounge, my head was starting to throb and moving was once again becoming difficult.

 

I laid on the sofa, wondering whether to ring an ambulance or not.  I knew the best place would have been a hospital (I was worried) but then I would just be left to do the same, lie down and worry.  At 9.30 hubby came through to see my prone figure on the sofa, blanket over and in pain.  He did what he knows best and brought some morphine through, I started with a 20 mm, knowing that too much causes a different type of headache.  I had looked up angina on the ipad and thought hum could be having this, I haven't had pain radiating out to my neck and shoulders like this, only the heavy throbbing pain in my heart.  The 20 didn't do much so I took so more, he helped me up the stairs, and got me into bed.

 

I awoke at 12.30, the pain was easing in my shoulders but the meso sweats were bad, I was drenched, problem was I couldn't get up, any movement made my heart hurt more.  I moved over towards his side (I thank God we bought a super King!) and went back to sleep.  I honestly didn't expect to wake up this morning but I have.  The pain in my chest as bad and still some in my shoulders, my head hurts.  I took my oxygen level its 96% although BP is 110 \ 78.  I don't know whether its from straining yesterday or from starting the Milk Thistle capsules or just the meso being ugly.  My 3rd boob is extremely tender too so that could be adding pressure - I hate this bloody cancer.

 

I have gone through the should I do chemo or trial so many times in my head, this morning I am thinking maybe try something I know that might work, but the verdict is still out on whether it will.  I don't think its the fluid causing the pain, its the weight of the meso hanging from my pericardium - that's what my body is telling me.  Funny we do get to know our bodies inside out.

 

Have managed to arrange an appointment with the Doc, not that he will be able to do much, but at least he can listen to my heart pump.  I really hate hospitals and will do anything not to have to go in one.  Not even sure if a hospital could even help!

 

I feel better for getting this out, hopefully the pains will start to ease as the day wears on.

Chris Knighton Deserves her Recognition

I wish I watched the news more often but as usual I missed it so when little Ann told me at work that Chris was named in the Queens honours List for once I felt sad to have missed the local news and see Chris receive her award.

Chris together with the help of Anne has worked so hard getting the charity recognised and indeed getting money raised to help towards research of this dreadful cancer.  Working out of her house for many years with determination and guts.  I believe that without Chris and her team we would not be as far forward battling this cancer as we are now.

She has inspired so many of us to raise money on behalf of the charity, When Claire and I arranged our Auction Dinner and Run back in 2007 Chris once again took the stand and had to relive the sadness that brought her to this position.  She has told her story from the tip of Scotland to the South of England and I am sure with each telling it doesn't get easier  for her the memory is always kept alive with the horror as well as the good memories. 

It was because of her message board I finally found my first meso friend.

WELL DONE CHRIS - ITS SO GOOD THAT SOMEONE SO CARING RECEIVES THIS

Meso not in the Sun

What a disappointment this morning, the blue sky of yesterday was replaced with heavy grey clouds today, I swear I jinx the weather. Yesterday while lying in the heat my bones felt great we did at least a two to three mile walk right around the bay no breathlessness at all and I felt good. On the way home from dinner the temp dropped and by the time we got to the room my back had internal icicles stabbing outwardly - I was nearly human but alas short lived! Two friends start chemo for the very first time and I pray all will go well, knowing Debbie, Theo will certainly be in for a shock, facing the treatment for the first time is so unnerving, you are on tender hooks waiting for the side effects to take hold. I heard from Denise and am pleased to say her first one has gone well, very slight side effects so long make it continue. Hubby has opened the crossword so guess its time to go and make my brain do some work. Just hope the sun remembers to come back, knew we should have risked a long flight and gone to Dubai!!

Snow, snow, snow

Just a quick note to say I hope you all enjoyed the snowfall as much as our family did today.  The sun was shining, no breeze and an altogether great afternoon.  Unfortunately I think I snapped off some 450 photos, which I have had to trawl through and delete the duffs. 

We also took the opportunity of blasting both the dogs fur ....   as you can see Lexi really doesn't like the experience and stuck her tongue out as I snapped away.

Hope everyone managed to have some fresh air today, it always helps when the sunshines.

3 Year Wonder

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

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

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

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

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

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

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

Mesothelioma and life

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

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

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

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

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

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

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

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

Jan

Holding my breath

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

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

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

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

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

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

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

Jan