To 2014

As we draw to the end of 2013 my superstition dies with it, for some awful reason I thought I would not make this Christmas, I am so pleased this year has come to its end.

Having spent yesterday pretty much out of it due to a different muscle relaxant I didn't do much but sit and think I had held conversations I'd never had.  It was a busy day on the visitor front, the district nurse came and took my blood for the all important potassium level.  It is running high, which can get dangerous, also to change my dressing. My Macmillan nurse arrived but to be honest I have no idea what I talked about.

Christine managed to find a nebuliser and picked up the prescription for it, then the oxygen people rang to say they were coming out.  Although he arrived around 6.30 at night.  I didn't feel like my lights came on until it was bedtime!

5 am, how I hate that time I knew I had to move, my body was hurting, if I could have rolled over and gone back to sleep that would have been ideal, but no, I also needed the loo.  I managed to walk there and back but lying down was painful.  I laid back in the pillows but laid rigid, I did manage to nod off here and there, poor Gary was shattered and I knew he needed these additional hours.  At 9 I couldn't take it any longer and said I needed to get up.

The steel cage came down the left side giving no release at any time but I got down and onto the sofa.  I have to be honest, I haven't showered today or even had a good wash.  I was going to but I couldn't get comfy.  Our Gp rang, the potassium is still high, although moved down .1 in the right direction.

Our GP called in, he has arranged for me to go into RAMAC on Thursday for my bloods and if necessary an infusion to bring the potassium down.  He told me that once the chemo was out I would be back to my fighting self.  I just need these two tumours shrinking as he believes the rest of the cancer is slow growing.  I said I have never felt this weak, he gave me a hug and said I will get through.  This lifted my spirits.

Liz had called over so Gary could walk the dogs and Chris came so he could have a nap to catch up.  Liz left and Chris and I watched a movie.  I have to admit my skinny bum is sore from sitting, but rest is all I have done.  Concentration is poor as I have had to take morphine often to keep on top of the pain, I would love to fall asleep but know that wouldn't be a good idea as I need to be able to sleep on a night.

I know that some think it would be better to be drugged to get on top of this but then what is quality if I am out for the count.  I have to get strength back then worry about which way forward later.  My worry is waiting to see if they will go ahead with radiotherapy, it isn't written in stone.  To think back in the first week of chemo I asked about this as bending had been taking my breath away more and more each day.  Why do we always have to wait, which then subjects us more pain than we needed to suffer.

I must be one lucky patient to have a GP that does more than their new job description requires, wish I could put him forward for an OBE!

To you all out there I wish you all a better year, bringing love and peace to your hearts, health to your hearth, and all that would help make you and your family nearly whole.  To my fellow fighters I pray we find something to keep us all stable, to our loved ones, the strength and courage to carry on and the understanding of how much we truly love them.

We may feel like giving up but when we see the love in your eyes it gives us the strength to forge on again.

Looking forward to seeing you in 2014.

Each day is different

After the shock news of Friday and the news of the new patch crippling my sternum we stayed up late, the hope that I would sleep right through.  Unfortunately it didn't work, this dry mouth seems to set off the first problem.  Reaching over to dab my mouth with some dampness, it trickles down into maybe what is bile sitting at the back of my throat.

An unbelievable pain reached from my left rib right across to my right hip, I felt like I had been out of my body and dropped back in, but totally unaligned.  I had kept part way on my back and part on my left.  I keep remembering we should sleep good lung up but I never do this, never being able to keep on my right side since surgery.  I couldn't breath, nothing would move, my lungs were stuck solid.  Gary got me to stand, painful to say the least.  I had to get up, I could not go back to bed, I hobbled to the landing only to find I had nothing left, no air in my chest.  Gary went for the ventolin but I couldn't suck the mist in, sheer panic overtook, my heart speeded I just wanted to die at that very moment, in fact I thought I was dying at that very moment.  We tried oxgyen but it was overwhelming.  We were stood staring at each other, both of us not knowing what to do, somehow I got through it.  I managed to get downstairs but the sheer effort was terrible.  I got onto the sofa but the restriction was the worst I have ever suffered.  I tried draining, but only 360 came out, no change. Gary sent a text to our GP, then to help settle me I took a diazapam.  I can't remember drifting off but I woke some hours later, the morphine I had taken together with the muscle relaxer worked, my ribs had relaxed but boy was I whoozy.

My GP had rang and told Gary what we had done was right, the tablet was the only solution.  My mouth is also full of Thrush, Gary rang Christine who called at a chemist and brought some Daktarin up, hopefully this will take away the burning red tongue and cobweb feelings I have in my mouth.

It was 1 pm before I could even keep my eyes open properly but by then we had been up since silly hours.  Gary was dead on his feet, all adrenalin wiped from his body.  I managed to finally shower, although I sat on the stool in the shower.

Gary took the dogs for a quick jaunt then went to lie down in the black and white room, a couple of hours nap would do him good.  Christine then arrived at 4.30 to sit with me until he woke up, which by then I needed someone to help walk me to the loo, the call of nature was close.  At 6.00 he emerged still half asleep, looking dead and with a blazing headache.  I don't know how much longer he can carry on caring for me so vigilantly without whacking himself.

The fear of another day like today was looking at me in the face, there is no way I can keep getting through these episodes, they not only take my energy but scare me beyond any words I could write.  Is this the normal for what we are to face.  I have lived with pain for that long, but this is different.  I keep trying to see if others have posted comments about how they cope, but nothing is there.  I believe men just don't complain, but how do they hide this terrible way of life we are enduring?

I am scared, part of me just wants to die now so I don't have to suffer any more of the brutal pains this cancer puts on us, but then I have to hope that if the can stop or shrink this obstruction my life will improve 100%, but everything is done so slow here.  If I was in the States, say, I could have already had radiotherapy, instead I have to wait until after a meeting and then mess around for dates.  Not fast enough when the lying down is what brings this on.

I took additional morphine before bed as the centre pain started to ache along with my right back, thn a tamazepam to help being on sleep.  Bear woke us at .2 barking but we both got back to sleep.  4.30 or maybe a touch later I needed to dampen my dry mouth, movmnt, why do we move?  I was in pain plus nature decided to call.  I couldn't then lie down.  The bedroom was freezing to Gary but again I was hot, even though my feet are the colour of purples.  I told him to get into bed and I sat upright with my head resting on the headboard.  We held hands and talked.  Next thing I know Bear is running round the bedroom, it's 9 and we made a good nights sleep.  I don't feel like a twisted knot, some discomfort but overall near normal. Today I am going to try and exercise, get my legs moving etc.

I am still sat in pj's and told Gary to walk the dogs.  I hope, no I am willing today to be a good day and that sleeping better has helped us both.  If it wasn't for this one tumour my life would be better, I have to pray that radiotherapy is on the cards and will do its job.

If anyone is experiencing something similar to me, please let me know, I can't be the only one that has this much pain and problems with breathing, more importantly to me, how do they get through it?

I have compiled this again on the IPad so apologies for errors, it isn't the best tool on the market to do blogs with.

I thank many of you for the words of support received, I hope that what I do detail you will never experience but if you are unlucky to do so maybe these accounts of what I have been through may help you.

I made Christmas 2013

Last Christmas when I was wrapping the tree decorations up I was sure that it would be the last time I ever touched these little balls of memories that Gary and Imhad collected together over our years together.

This feeling of doom followed me all year and the in September when my body hit rock bottom I was sure I would not be spending Christmas with the man I love, in the home we share.

To say Gary and my relationship has changed is an understatement, he has gone from husband to full time carer in a matter of weeks.  Hard to believe that 6 weeks ago I would never dream I would need to be pushed around in a wheelchair, now the wheelchair is used in the house to ferry me from living room to toilet and back.  

Today was the day of dread, the scan results from just before Christmas.  I can see and feel the deterioration of my body, is it the chemo whacking me or the cancer taking hold.  The belief is both, in order to see which is what chemo has been deferred for 2 weeks.  Because I am having Vinerolbine  twice in a 21 day cycle it is taking the stuffing out of me, on top of that I am draining away a lot of bodily fluids that should be used to feed me, instead they are protecting organs.  

The left has remained stable, the only good piece of news, the growth of various other sites is slight, another good piece, would be better if said no growth, no size was mentioned.  Under the sternum and by the bottom of the right rib these new patches aren't playing nice at all, more not reacting to the chemo.  My oncologist is having a meeting on Wednesday and will review my scan with a radiologolist in the hope that they will be able to alleviate some of the pain in my centre chest.  If I bend forward I cut all my oxygen off to my lungs and can't breath, nothing I can do stops the fear taking over.

This morning at 4 am I woke with a really dry mouth, I reached out and used one of those mouth swabs just to wet my mouth, big mistake.  Movement set off that pain, I tried to lie down and go back to sleep without disturbing Gary but then being awake made me need a call of nature.  I pushed the bedding back and tried to get up but the constriction was like a vice.  I called Gary, he was up and by my side of the bed ina second.  He helped me up but the feeling was awful, I hobbled to the loo and then we hobbled back.  I tried to get back into bed and lie down but this was becoming Impossible, the pain was more acute and the breathing laboured, I could feel panic rising.  I tried to get a puff of ventolin to open my airways but didn't have the capacity to breathe in the vapour, Gary held the oxygen mask near my face but it was too strong and overcame me.  This probably lasted no more than 3 or 4 minutes but felt like a life time.  Finally, with the breathing under control I knew I could never lie back down, my whole torso was tight and rigid.  

We spent the rest of the night in the living room, me sitting upright on the sofa.  I don't think it helps having this bile problem either, why did I do my gall bladder!  

Nevertheless, it did work out well as we left the house in good time to go to hospital.

This season always reminds us the most of those we have lost, our parents, friends and other family members.  They are never forgotten but so badly missed so among the rejoicing of still being here I also felt bad for those who have lost their soulmates, especially just before.  Lisa and Gail were up there, both losing their soulmates so close to this time.  Helen and Debbie, the family missing them for their first year.  So many friends we have said goodbye too, the list goes on and on.

I fear this may now be my last Christmas, God willing it won't be, but I promise as I travel what could be the end of my journey I will always be honest to myself on this blog.

I am frightened, more so of the pains that come during the night than what I face during the day.  I have to start working my way up this well wall and reach the top in reaonable health so I can still challenge this terrible cancer.  I believe it's the chemo that is bringing about my weakness and I pray that over the next few weeks I can improve on my current situation and then restart treatment.  Without treatment how do we control the symptoms.

My thoughts go out to those who are also fighting this, my prayers are with you all.

Lets see 2013 off and hope that 2014 brings us closure to that magic bullet that just might save our lives.

Christmas

Wishing you all a very Merry Christmas.

Tomorrow will be a day of celebration for those of us who are still here to enjoy but a day of sadness for those who have lost a soulmate/partner, mother, father or sibling.

To my friends who face a difficult day my thoughts will be with you.

Hold back Christmas a Day

I apologise again for updating on the iPad, this means I am unable to post photographs of yesterday's surprise Christmas present.

In November 04 when my future looked bleak and I was doing a wish list, walking with wolves was up there.   Indeed Gary and I joined  the wolf society which included a group walk with them.  I never got but it remained a dream.  

Yesterday, even though I was like death warmed up Christine, Lorraine and Natasha arrived, Chris was beaming and Said I have 3 surprises outside, 3 hybrid wolves were running around our Garden!  I just cried.  After they had exercised their legs, Rachael their Mam, who had driven up from Leicester that morning, brought them into the house.  They played, gave fusses and Rachael explained the breeding and history of each.  Jerry-Lee, (I will post pictures honest) looked the most wolf like, was my favourite.  I sat with them all on the floor, each one enjoying a fuss.

Unfortunately I received an email this evening, Jerry-Lee had taken ill and died today with inoperable cancer.  I have no words I can say.

I have to be honest when they left I was floored, the rest of the day I spent on the sofa.  We had dinner and watched TV, at 8 my body felt that terrible restriction start, I felt tight from chest to belly button.  We drained, wbich went differently.  The flow started fast, Bear came to sniff me and I lent forward, the flow halted, I leaned back but it just dripped, I could still feel fluid so I gently massaged my stomach, managing to get another 300 out.  It did give some relief but I still felt tight.  I wanted a natural nights sleep but now knew this would not happen.  At 10 I took a tamazepam and we waited for the effects to start.  Walking to the stairs left me breathless but by 11 we were upstairs and in bed.  Gary snuggled up to me and off we went to sleep.  The problem with tamazepam is it makes your mouth really dry.  I have this spray that makes instant salvia but during the night it isn't always easy to have it pointed in the right direction!  At 2 I needed to use it but then settled back down till just before 7.  Bear came upstairs and Gary asked him to settle, which he did, we both go up at 7.30, my chest was tight again, maybe because I had slept on my back again.  Moving on a morning seems to upset my organs that have found a comfy place for the night.  

I settled in the living room and honest I just didn't want to move, the pain wasn't sharp but more of a pulling, some one trying to part my ribs apart.  I sat there till nearly 9.30 and thought I had better get a shower, walking to the room took every bit of strength, no shower I had a wash.  I had just got my clothes on when the district nurse arrived.  She dressed and cleaned the pipe and we drained, discussed the big day and said our merry Christmas's.

Then the stair chair engineers arrived, followed a few minutes later by my MacMillan Nurse.  We discussed my breathing and the pains together with the small dose of injectable morphine that was given last week.  She said it should be higher, at least 30 an injection.  She rang my wonderful Dr J who then said he was calling out anyway.

He asked how I was and all I could say was awful, but awful due to chemo or awful due to cancer?

Poor Gary has been running round like a mad man, he wanted to finish up shopping but didn't want to leave me, he was constantly in an out with engineers so dogs didn't get out.  Then the phone rang, my own hairdressers have let me down, Liz contacted hers and arranged for some one to come, he would be with us within an hour.  

So at 3.30 our hairs were tidied up, thank God I feel so much better.  He left then the engineers wanted to show how the chair lift worked.  He said goodbye to them and said he was going to the butchers, my toe lady was due at 5 so I knew he would be back in time.  Oh no she was early!  I took my time walking to the front door and shouted for her to park on the front and use the front gate.  I slowly made my way to the office to open the door, you would have thought I had completed the marathon.  Poor Sam though, she is afraid of large dogs, due to her entrance I had no where to lock the dogs away, she needed access to the kitchen.  

She went in the kitchen and started filling a Bowl of water to soak my feet, just then Gary came back home.  Toes cut next appointment made she left.  

Poor Gary made a light bite for us then off he went to Tesco for a few bits.  He is now home and resting.  Christmas is a time when we both do certain jobs and other jobs together, however this year Gary has had to carry nearly all of them out on his own, sorry did I say nearly I did mean just about all!  

I don't know how I dare but I am so exhausted but getting comfortable is the hard part.  I dread the thought of sleep as waking just brings back pain from during the night, plus my insides have had that bile feeling again.  I just can't win at the moment.

I am leaving this entry here in the hope that many of you are in better shape than I am.  I do hope tomorrow I can finally post a Christmas Card to you all.

Finally the Tree is Up!

Yesterday was a tough day, I wish I could say anything else but!  Showering was hard work as I was weak and breathless, my mind has changed a gear as now I am sure the chemo is giving my friend Meso a good kicking, in Yorkshire they would say up the jacksey.  

I sat most of the day on the sofa after that, I chatted to Lou in the morning, but I missed my meso mate Mavis, after reading her blog, I now know why, she too had had a rough time.  

I had visitors in the day too, this was tiring but I put a brave face forward. One was my late aunts sister, Maureen and her husband James.  I used to play with her children during the summer holidays when they visited from Lyme Regis, we were only about 10 then.  They always call up when they visit my Dad's brother.  Liz and Les arrived about 10 minutes later and the 6 of us chatted for a while before everyone left.  Everyone seems ready for the big day.  Liz and Les were out giving presents so at least we were able to get one of ours given way.  I have sent quite a few bouquets of flowers this year as shopping hasn't been something I can do but I think flowers are beautiful to look at.  

We finally ate our lunch at 3, it had been turned down in the oven due to company arriving, boy was I hungry but it didn't go down very well.  I couldn't decide how I felt, was it me, the chemo or the meso?  My brother called around at 7 with some emergency for work which meant going into my office and going on the main computer.  Sitting over the desk could have started it off, I really don't know but I needed 60 severdol, the pain was centre chest and coming on fast.  I had to forget work and slowly make my way back to the lounge.  That was it for me, my temp was extremely low, my heart beat high and blood pressure my normal low.  I was restless, pain spreading around my back but the thought in my head was yes, the meso s being hammered.  The chemo is working and I should feel bad, just because it isn't like the chemo regimes before doesn't mean nothing is happening.

Bedtime arrived but I really didn't want to lie down, again I did the preparation in stages.  Changed downstairs then sat for 10 minutes.  Cleaned my teeth then rested another 10.  I got into bed and Gary did his talking me down.  Before long I was sound asleep.

I woke around 7 so did Gary, getting up wasn't that pleasant my stomach felt a bit awful.  Once downstairs and on the sofa I realised I felt 100% better than I had yesterday.  I even managed to wash my hair myself today, how amazing I felt doing that.  Today was certainly on the way back up, but I am not over exciting myself yet, we go up and down faster than elevators in department stores. 

Today come hell or high water our Christmas Tree was going up, after the dogs had a walk, poor Bear was chewing at the bit as he hasn't had a Walk for 2 days!  

Gary started pulling out boxes, it has taken most of the day and bit by bit we have done the tree in the living room and one in the hall.  

I now feel like Christmas is starting now, only have some gifts to our family and friends and we are ready, although the dogs pressies still need wrapping.  Lexi is already excited and is sniffing around the trees.  Bear I am not sure, he isn't as bright as our German Shepherd.  He wanted his tummy tickled when we were doing the tree, something that was once so easy and took no effort.  I gave him a slight ruffle but his eyes said it all 'is that it?'  

So feeling better, I guess over day 8 or 15 are the worst, now it's up until the next killer dose.  I am also pleased to say that Mavis woke up feeling better today, maybe us meso warriors are united in more wys than one.  Lastly I hope Ray is feeling brighter too, I know that Amanda has said he is struggling badly on chemo, lets hope Christmas Day is one of his good one.

To my friend in South Africa, I pray you too aren't suffering too badly, I know last time was hard and  again this will do what it did last time, hold back the meso and give you a remission with stable disease.  

Looking back helps us remember what we went through and what we achieved through the pain, I just need to keep that thought in sight and so, my fellow fighters, do you.  

Pleased I looked back

Throughout all my treatments and the early days before I was diagnosed I kept a diary of pain, temperatures, meds and doctors comments.  Once treatments were finished I would stop filling it in.  I have been lapse this last treatment but thankfully I have detailed much more in the blog.

Yesterday we went through to the RVI for the scan, it is early, only after what they call 2 full chemo's, not sure whether I will be pulled off if nothing is happening.  My brother, Nev, drove us up and were we thankful, the car parks were full!  Nev dropped us off at the front doors and Gary pushed me the 1 mile though the hospital to XRay.  What a wonderful young Radiologist I had, so pleasant and friendly and we chatted easily, in fact that dreaded cannula was in before I even noticed.  I asked if she could always be the one to o it.  Obviously not possible, but if you ever meet Emma in the RVI you can be sure it will be a pleasant experience.  I had to drink 3 glasses of cold water, this works with the contrast to open up all the folds around the organs so the radiologist can read everything.

I had a fancy for a KFC on the way home so guess what we had for tea, yes.  I felt restless and tired so as Gary went and caught up on a nap, much needed for him.  The evening seemed to drag on and I felt more nd more constricted, my rib cage was tightening around me.  I didn't want to go to bed as lying down was going to be uncomfortable.  I took a tamazepam and hoped it would kick in, my temp was down to 35.3, not good.  I opened up the iPad and read back over, I was experiencing the exact same thing as this time last cycle, that made me feel better.

Finally, after 11.30 we went upstairs, my back hurt and lying down was uncomfortable, but with Gary's reassuring arms around me I soon feel asleep.  I woke at 4.30 and needed a pee, Gary was already awake so off we went.  Getting back in to bed my heart rate went up, but again he got me back to sleep.

This morning I felt that sickness at the bottom of my stomach as wll as my body aching all over, honest it's like a python wrapping around you.  I haven't moved from the sofa yet, although we have drained, it has gone up a little, 550 drained.  I know the day will improve but right now I just want to curl up.

Within our community we made a special young mans birthday yesterday, Keiran, Debbie's son, turned 17,  we sent him a guitar and music lesson.  We knew he would not be looking forward to this birthday so hopefully we raised a smile.

Although still on steroids my appetite isn't the greatest, at most I am eating one small meal a day, I know this isn't enough but it is a lot more than I ever managed on chemo all those years ago.

I am sending Gary out to do the shopping, I haven't showered yet, just preferring to stay on the sofa.  He is reluctant to leave me but I just want to curl up and there is things that need doing.

On that note I am closing this journal, I know now that the chemo is partly responsible for me feeling this way and tomorrow will be better.
.

It started off good .....

Another night of undisturbed sleep until 6.45 when that call of nature came but I stayed still so Gary could sleep a little longer, bless he was doing the same.  We got up at 7.15 and I felt ok so while he made our morning drink I went into the office.  Silly really as sitting upright probably isn't the best way to start.  I moved back into the living room taking my IPad with me.

I was showered and dressed, just starting to dry my hair when the door bell rang, my district nurse had arrived to the that important U&E test, please God let my potassium be ok.  Anyway as I walked to the living room I was so breathless, the needle went in and to be totally honest I was still waiting for that jab into my vein, my blood was already on its way out.  Well done, the best needle I have ever had.  

We were just finishing up when that nasty pain started just right of my centre chest, it shot into my right boob, within five minutes I had my morphine tablets in, I took 60 believing I would get straight on top of the pain.  No, instead it increased with intensity.  Luckily I now have injectable morphine here, my nurse rang a colleague as they have to administer it with two people.  One phone call and less than 5 minutes later one of my other regular nurses arrived.  By now the pain was hitting no 9, to me that is the meso having a growing spurt, unfortunately creating fluid in the pericardium which then puts a strain on the top heart muscle.

I must admit I did swear quite often during this period, something I don't make a habit of, so apologies if either of my nurses read this.  The injection is faster than tablets but it went into my muscle not my vein, so again a waiting game.  It stayed intense for another hour, my temp registered at 34.9, it's a long time since I have been that low.  I had to take more oral tablets.  My nurses left and said they would ring in an hour, if the pain was the same they would come back and inject some more.  It took 2 hours in total for the pain to get to no 4 on my pain scale, by then I was worn out but my eyes were extremely heavy from the morphine.

These are the one session pains I hate, prior to surgery I went through this every 10 weeks, now it seems they are coming 3 weekly, at least it's out of the way for Christmas.  My nurse rang after an hour but I told him I had taken some oral and the pain was stable then.  He rang back another hour later but wanted to speak to me, just in case I had taken or had to much.  By 1 pm the pain was totally under control but boy was I tired.  You really think your heart can't function anymore.  The biggest reason why we die of heart attacks is the pain,  

Poor Gary is now shattered, his adrenalin raced through his body which also leaves him shattered.  We were pleasantly surprised this early evening when my nurse rang just to ensure I was ok, if not he was prepared to come back over as his shift was finishing.  

Gary needed to go out so I rang Claire to come from work, I had plenty of finished work I could give her to take back, plus she brought all my post.  It was also ideal so I could give her and Ann my Christmas presents, together with chocs for the office.  I think he was relieved Claire came.  

Linda and I had a few minutes on Skype to wish each other happy hols, that lady is always busy but always makes time for others.  Please don't forget to light candles for those you love and lost on the ADAO website.  I have no idea how to copy a link on IPad but I will add it later.

I have had no appetite at all today, due to morphine, no doubt at midnight I will suddenly be hungry!  So as the day has become night my great expectations of today flew out of the window, I guess I have learnt a lesson, never plan!

Tomorrow I go for my CT Scan, I just hope it shows some of the meso is shrinking.  My brother, Nev, is going to drive so we don't have to struggle offloading me and the wheel chair.  I must admit Gary does love pushing me around.  Yesterday we went down a bank, I had my arms out like an airplane as we took the bends!  We were both laughing, it certainly is another memory to keep.

I am now really tired, my concentration is wiped so I bid you mall good night.  I am sorry that I do write what it is like having this and how painful it can be, but please remember not every loved one go through this.  

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.

Day out and heart check

Yesterday my Macmillan nurse called in early, as she was sat chatting that terrible pain started, I took 60 morphine straight away, it took 20 minutes before it faded in to the back ground, she checked my stats, my oxy had dropped down to 96 but my heart was racing at 127, once the pain settled my 02 had risen to 98 but the heart ad only dropped to 109, my heart s certainly working hard.

After that I did have a pain free day, the second half of the borrowed chair arrived so bedtime will be easier.  Before bed I took another tamazepam which helped make me tired, the lift stopped me getting breathless and going to bed was a pleasure.  I remember Gary cuddling into me and that was it.  I woke at 3.25 wondered whether I needed to visit the loo, but no I told myself to go back to sleep.  Next thing it was 7.45, time to get up.  No pain!

My colleague from work was coming at 10 and I needed to shower and wash my damp sweaty hair, which I actually managed.  As soon as Claire left Gary had my clothes out ready to change.  Today was his first day at pushing me in the wheelchair.  We even managed to get a disabled space outside the hospital door, the area I had to go to was the furthest away in Darlington Hospital, there would be no way I could have walked it.  For his first time handling it he did so well, we didn't run anyone down!

My pericardium has fluid, so far it doesn't  impede the top muscle that holds the heart, although there is quite an increase in the volume since the last one last year.  I do hate it when they put the sound on and you can hear it beating.  Also my heart isn't where every one else's is anymore so I had to lie strangely for him to get a good scan.  I asked about flying for 8 hours, I could tell by his face he didn't think any flying was a good idea but said he would discuss after I got dressed.

He discussed the speed of my heart, how he could drain the fluid if the volume starts to cause problems and flying.  If the chemo works maybe 4 hours max, but this will be revised, Gary said no way would we risk it, I reminded him we flew all over when I had it before but didn't know, he said it was different then!  I know that I will need some warmth on my bones by April latest.  At least I know he may be able to use a needle to withdraw the fluid, now I will need to monitor if I have those heart attach pains so we know if the fluid is managing to still drain on its own.  He also discussed the high levels of my RBC, if my blood gets to thick, this will stop helping me, at the moment my body is trying to make ways to help my body.

Then we went into town, I asked Gary for a pair of earrings for Christmas, he took me to D&H Jewellers in Queens Arcade, Gary bought my tennis ball bracelet and earrings from here last year.  Me and jewellery i'm like a child in a sweet shop.  I could have bought so much stuff and he barters a bit too.  I found the perfect earrings, we even had a cup of tea as we discussed them then Gary had me try on a tennis ball necklace, big mistake as once I tried it on I didn't want to take it off but I felt guilty, it was pricey but oh so beautiful.  More chatter, they know I have cancer from his previous visits.  I said I just wanted something I can wear all the time, they said I could wear this all the time.  What can I tell you, he bought me it.  I told him to wrap it for Christmas but he said no wear it now and get the pleasure from it.  

My gp text to ask where I was so I said we would be home for 3, I didn't realise we had spent so much time in the shop and it was 2.44, I needed to go to Boots so off we set back to the car and Boots.  It was the only place his L plates were needed!  It was wonderful being out and seeing people, such a different view from the wheelchair.  We had to call at the chemist too so as we pulled in my GP was just parking, he saw us and came over.  He was thrilled I looked so well, we discussed my appointment and chemo again tomorrow.  We then popped in work so I could post a letter and my other colleague Ann came to see me.  For once I heard some good news, her husband has been given a full time contract at the job he has been doing for an agency for over a year.  His contract ran out on 17/12 so now he will be permanent, the joy of this news brought tears to my eyes.  Her future is once again secure, what a lovely Christmas present for them.

So after such a busy day I am shattered, I am in one way hoping that it was the chemo killing the meso so I wonder if this Saturday/Sunday I will experience the same.  One side effect I am having. My left foot goes numb and my right hand keeps going funny, my little finger keeps pulling to the right and tingles etc.

To my fellow fighters, it is hard going fighting this and to our carers, we can never thank you enough for the care and love you bestow on us, all of it unconditionally.  

Total fear

I started writing this at silly hours this morning to try and keep my mind occupied sorry if it's to close to the bone but I decided to leave it as I wrote it.

I took 40 mg of morphine 20 minutes before bed in the hope it stopped that terrible pain in my centre chest.  I also decided to lift the slow release up to 200mg so to control the pain during the night.  I am not sure whether this helped bring on insomnia but thinking back this happened a few weeks ago.  I also wanted to keep going to the loo, something I don't really do a lot of these days, so up I got again at 2.15.  The pain became scary, breathing feeling obstructed as if something was stopping my chest from working.  Now I know what is causing this it has made me panic more, is this the way I am to go to meet my maker.

I tried to lie down but the pain just got worse, I had no option but to wake Gary up, even just putting the bedside light on made me feel better but the moment I tried to lie back the pain increased.  I tried oxygen but that didn't help, in the end I had to get up and come downstairs.  It seems that sitting up is better but in bed sitting up isn't comfortable.  Gary can't cope during the night, he can't cope if he doesn't have 10 hours sleep a night I told him I would be fine on my own once I got downstairs.  He came with me and got me settled on to the sofa and brought a couple of quilts down.  After a while, and lots of me tellingmhim to go back up to bed, he went off to sleep in the other room as I wanted to put the tv on to rock me to sleep, he can't go to sleep with the TV on.  But I couldn't sleep, I had taken plenty of morphine as my head was starting to ache and my eyes were tired but the pain just wasn't easing up.

I  chatted to Lou on Facebook which helped calm me, as it was so dark I got up to put a light on, bending to check the plug set off my breathing problems again.  This is why I am so worried, this didn't happen 6 weeks ago or even 4 weeks ago.  Is this tumour growing and crippling my lung.  In my mind I want to push for radiotherapy straight away but am sure my oncologist would think it was just because I know I have this.  But what if the chemo isn't working and this tumour is growing on a daily basis, radiotherapy may just hold it back, but then no guarantee.

I closed it there as I wasn't able to concentrate due to the drugs and the pain.

Earlier on Sunday I sykped with Linda Reinstien from ADAO, after all this time of reading her website and face book pages it was nice to see her face to face.  What an impressive lady she is, without the voice of Linda doing her work in the USA asbestos would still be unheard of and it's dangers not spread loud and clear.

She has set up an amazing list for medical contacts in the USA, but it is far from complete so if you can recommend a specialist in your state (USA), Australia, UK, South Africa, Canada, Dubai in fact anywhere please leave the information in Facebook on ADAO's page or Email me with the contact information and I will pass this on.  Linda has also created a mobile apps, more information on their  Website.  It's their 10 year anniversary next year and in that time the amount of work done is second to none.

Back to the here and now, I called to Gary about 7.20 this morning as I heard him stir in the other room, he looked white and tired but had at least slept.  I can't afford for Gary to become run down as at present I am totally dependant on him.  He made me a cup of tea then rang our GP on his mobile.  It did go to voice mail but the doctor rang back 20 minutes later.  Gary explained what was happening so he told him what meds to use to help and he would come round.  My Doc also rang my MacMillan Nurse, Shirley.  The District nurse was also due to take bloods and clean my wound.  I knew I would be unable to shower but did put some clothes on and managed to clean my teeth.  By the time they arrived, 2 came, one for bloods one for dressing, I was starting to be out of it, but more importantly the pain had finally gone.  We talked about the events of the night and I said I was so close to ringing for an ambulance but they told me that nothing different would have been done apart from I would have had morphine injected and put on oxygen, all of this I can have at home.

When Shirley arrived she also said the same but what she has organised is drugs to be dispensed at home via a butterfly infusion, the district nurse would need to be called to do this but they work during the night.  I really would not want to go to hospital.  We do have two local hospices here, one that is day only and the other with 6 beds, unfortunately neither have a full time pain management doctor.  

With the pain  eased I could finally feel myself able to sleep, taking a big risk I actually laid down properly on the sofa and slept. I am still pain free at 4pm just hope it lasts, but if not our pain ammunition has been fully stocked and hopefully I won't go through that again.   

That's it for now, sorry if I have hit any nerves but my journey has certainly taken a different turn and I would also like to thank the Facebook community for all their support and wonderful words of encouragement.  I am sure this is a blip and I will bounce back, in the light of day things always look brighter.  

The weather has let us down

It was great getting into the car and driving to a shop for a change instead of going off to a hospital.  The shop we visited was in Darlington and I must say the man was very helpful.  I test drove two chairs, both for comfort for me and also for Gary.  I am so pleased I didn't buy from the Internet as Gary noticed a difference in the height of the handles, which if he hadn't tried pushing me he would never have noticed.  So purchased and excited that I can get back out.  We had hoped the weather would be nice today as he promised to take me for a push along the front at Seaton Carew.  Oh well, I have asked to go round Tesco but his face has dropped.  I don't think he realises that even Tesco would give me a lift and I really want to go.  As the day progresses  I will wait and see.

I said something yesterday about how awful it is seeing yourself deteriorate, he told me it was just as bad, if not worse, watching the person you love deteriorate too.  I hadn't thought of his view, only mine here.  The pain in my centre chest is really bad, in bed it seems to be much worse.  During the night, every time I woke up I was in pain, obviously my mind took over, what if the chemo wasn't working on this aggressive tumour and it was growing faster and faster.  Should I request some radiotherapy now to help take the pain out, can I take another 4 weeks of this terrible pain?  

I have lifted my slow release morphine, it has always helped having several spare different dosages in the house.  I think today 200 mg should become baseline and then see if I need breakthrough.  

Apart from sweats again most of yesterday and during the night I seem to be tolerating the chemo really well.  One part of me is worried as I have always believed no pain no gain, but then a fellow sufferer has had good results on Vinerolbine without suffering, I am praying I will have the same.  

I will be reading everything Steve and Mavis will be discussing for treatments over the next few months, the three of us have detailed our journeys, albeit mine isn't  from the beginning, but all of us have travelled this journey, the ups and downs of life, treatments and dealing with terminal cancer.  During the years hope has kept us going, hope that some new Gold Standard that kills these nasty cells has been found.

In my opinion Mesothelioma is so different from regular cancer, it isn't caused by a defect in our genes, our genes or tissue has been poisoned by a fibre, one little fibre!  Yet the destruction one fibre can do is worse than any other thing in the world.  Recently someone said what did it matter if Mesothelioma only killed 16 people in one county per year.  I would love this person to be either struck down with this himself or watch his daughter/wife suffer.  i know that sounds nasty but what he wrote was so untrue.  He reckoned asbestos was safe!  He said people were to blame for suffering from this because health and safety regs were in place, work forces had no idea how dangerous this was.  Would my own father have put my life at risk if he had known?  Would those who worked in it have done the same.

Research is the key for us but I honestly believe they need to look at killing meso in a totally different way, this isn't a normal killer.  In some cases the tumours grow as a solid sheet, I imagine like a fibrous board instead of the baked beans that came out of me.  Trials are important but when you are still healthy do we really want to risk a placebo and receive no treatment?  There needs to be a different way of doing trials so we still have some form of holding back the meso.  

That's my journal for today, I am looking to meeting Linda Reinstein from ADAO on Skype this pm and also chat to my friend Lisa who recently lost Tom to this rotten killer.  Although I am running late this morning as I stayed in bed till nearly 9! 

I hope that you have a good day and if you are a carer you can understand what you loved one is thinking. 

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. 

Chemo And Scan Result

The district nurse came and changed my dressings at 10, we had planned to leave at 11 to get up to Newcastle with time and meet up with Andrea.  Best laid plans of mice and men!  The nurse left then suddenly the door bell went again, he had come back to say one of our trees had blown over but had brought all the power cables down!  It was 10.45, the news said that part of the M1 was closed so we would need to go a different way.  But we had problems, Gary phoned the national grid to report it, the police arrived but we needed to go, we left the police, the tree across the road and the power cables dangling, one of our neighbours came over and said he would wait then chop the tree up when they moved it.

Once on the M1 the traffic was moving so we went the normal way, it was bad up till Washington with the wind but the rain kept coming and going.  We got to the hospital for 12 and only a short wait until Dr H called us in.  The chemo is being lifted and a scan to be organised for just before Christmas.  He was happy with the blood results, actually so was I, my white blood count has come back down.

We then discussed the scan, not the best news I have ever heard for a long time.  A new tumour has appeared 6cm nodal mass around the subcarinal location, this is where the tube separates to go left and right into each lung.  This knocked me back but explains the heaviness in my centre chest.  I have some fluid around the pericardium, but I knew that from the pains I have.  Funnily my stomach doesn't give any pain yet I have modular peritoneal thickening and lots around the pelvic area. I also have a mass on the bottom part of the stomach.  My left lung seems stable but right has had many changes.

Dr H asked the chemo lounge if they could pull my 2pm appointment forward due to us having our electric problem!  The downside of this was I had planned to meet Andrea at the hospital for a chat. Thankfully we did meet but it was a much shorter visit than I had hoped.  It was great to see her and she had made such an effort to come out in the cold weather to meet up and we had to cut the visit so short.  Gary was that preoccupied with the crisis at home he just wanted to get back, I didn't even think to ask Andrea if she had a car as we parted, I pray she hadn't walked over.

We got home to see the tree had been moved from the road and dumped on the grass verge but oh no the cables are still dangling over the drive way and pulling from the pylon that sits in the front garden.  We have power but our poor next door neighbour has none, they are OAP's but didn't report no power thinking the police had handled it.  To be honest I didn't think about it until I got in the house and had Gary ring them.  We rang and asked the power company what was happening and were told there were some major jobs come in.  Just hope they don't come between 6 and 10 otherwise we will have no power and no warmth.  I have told Gary we should invite our neighbours if they don't get power but he is afraid in case they have colds etc.

So fingers crossed they arrive soon and fix it so everyone is warm tonight.  Meanwhile I have to go back out to see the heart man so will finish today when I get back.

Heart rate at the Freeman today was 127 but tonight it was back down to 97, still higher than the normal especially with a ing low BP but no real concern.  I will have a cardiac test done next Wednesday, can't remember the proper name.  Mainly to check the fluid around the pericardium isn't impinging on the heart itself.  I could have gone tomorrow but I am shattered.

I have just read about Steve, both he and Linda have a lot to digest and which option they will take up.  Once into the 5 year journey decisions do become harder.  My heart goes out to them as I know from my own journey.  A couple of times I have held back a few months but you have no idea which route to take.  

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.

 



 

 

Getting Frightened

I haven't been brutally honest with myself these last few weeks, hoping that each day as I feel worse its the chemo doing some magic rather than the meso.

 

I have to face facts though, I am draining my stomach every day, the quantity is not reducing, and yesterday not only did I do it morning but also night because I feel so constricted in my chest and yes I still got fluid out.

 

I am starting to find it difficult to breathe but it isn't just that, breathing is painful and it isn't a good feeling, each breath hurts because my chest feels 6 inches shorter than it did a couple of weeks back.  When I went to see Dr H for the chemo I was in a better health state than now.  Have I done the wrong thing here, will the vinerolbene be working or am I just taking a pill for the sake of it and the meso is just growing and growing.

 

My left side feels fine, its my right side that is the problem, it feels that I my right lung has gone and no longer wants to work.  Getting any breath is hard work.  It has been like this on a morning and night for a few weeks but each day is getting continually worse.

 

I fear my demise, how can it happen this way.  I was so healthy in the summer, walking and breathing, now each step takes it out of me.  What with swollen feet and I am sure I have some form of infection still in my chest, why else such a high WBC.

 

 I feel so low, my energy is zero and if I could get comfortable I think I would spend the day in bed.

Injection Again!

I haven't done much the last couple of days, after shopping on Tuesday I was pretty worn out on Wednesday.  Thursday seems a blur, I did a little work but not a lot.

 

Yesterday morning I woke up feeling terrible, again!!!  Am getting fed up of this I should be improving not going downhill further.  My shoulder has gone again, bone on bone so thankfully I was able to make an appointment next week with my physio although I wish it was today.  I couldn't take the pain so texted my brilliant GP and asked if he could come and give me another jab in my bum. 

 

On Thursday my DN came together with my MacMillan nurse.  We discussed the large breeze blocks that I call feet and decided maybe my heart should be checked again.  I have arranged to go back and see Prof Murphy.  The problem being I will be given Diuretics which affect your kidney and as I am on chemo I don't think this would be a good idea.  But it can explain more of the breathlessness, I would rather it be my heart than the meso growing any day of the week.

 

I have asked her if she would be interested in doing the Mesothelioma Practice in Cancer Care and I think I raised her interest.  Although she will have to go through the trust to see if she can apply for it.  I think my MacMillan would be good at caring more for meso patients, she just has a way with people.

 

Anyway Friday, feeling pretty crap as I was turned out to be a busy afternoon.  My toe lady came, and although she couldn't dig my nails out, in case she cut me, she managed to sort them out pretty well.  Then Joyce arrived and gave me a foot and lower leg massage.  I was so tired I could have drifted off, just as she was doing my shoulder, trying to ease the pain my GP arrived.

 

After telling us a little about his holiday he then gave me a nice painkilling jab in my now bigger bum.  It didn't hurt as much as the last one.  The relief came some 20 minutes later, it didn't take it all away but thankfully the pain on breathing eased.  Funny how your shoulder can make breathing hurt!  He said I did look better than before he went away, pleased I was eating crisps because they had calories etc.  I did tell him that this chemo was a walk in the park compared to Alimta.  I also apologised for having to call him out, I must be one of his worst patients, because I contact him directly and bless he always looks after me.  He has promised to drop me off a spicy indian recipe for chicken, as I told him I am craving spices.

I have bloods organised to be taken on Monday so just hope my WBC has come down some and whatever is going on inside me has cleared.  I did mention this to the doctor, hope he has a look at my results and comes up with an idea.

 

He left and so did Joyce as I was getting tired, I checked my phone and noticed I had missed a message, my best friends daughter was wishing to call in.  I rang her back as my phone couldn't deliver messages to her, odd!  She was 10 minutes away from ours so I thought she's made the effort come on Jan, wake up.

It was lovely to see her, its been quite a while since she was last up.  She stayed for an hour then was going to go to the gym, where do these young ones get the energy from.  I felt so tired that my eyes were going to close but Gary had dinner on so saying Goodbye to Tash then into the kitchen to see if he needed me, no!  Good so I went back into the lounge.

The pain in my shoulder was steady but my chest and right back started to increase in pain so I took some morphine.  This made my eye's worse but once I had climbed the stairs to bed and couldn't catch my breath I was wide awake again.  Why does that happen.  My chest felt like it had been shrunken again to only a couple of inches and no oxygen was getting in.  Somehow I managed to nod off and didn't get up till 8.45 this morning.  A lie in yeah!

I listened to the replay of Jeremy Vine's show this morning regarding the school teacher and mesothelioma.  I thought it didn't cover very much and was highly disappointed.  Usually he gets a good debate going but I thought this was flat without enough information regarding the dangers of asbestos. 

If you want to hear the discussion go to approx. 1.08 on the time slide here

I have sent him an email asking him to do another debate, they need to cover more, and discuss the use of it throughout the world.  Asia is rising in its use of Asbestos, how will we track we don't get it into products in this country?

Our community has had a few more deaths this week, the worst time of the year to lose people, although any time is, but around the holidays makes it that much harder. 

 

A lady emailed me the other day, reading what she wrote brought back the memories of my own beginning with meso.  Her husband hasn't been diagnosed with this but his symptoms are the same as mine were.  She was told that meso doesn't affect people in their 40's, what is wrong with our doctors, in fact one had never even heard of the disease.  This is frightening in this day and age, how many more are out there undiagnosed when if caught early they could have a good chance at a long term remission?

 

If you have any concerns regarding mesothelioma and need more info please contact Mesothelioma UK, they can help guide you to the right people.

 

On that note I am closing the blog, my body is soaked in sweat, not sure whether its the meso or the chemo causing this today. 

 

Have a good weekend and enjoy the last day of November.