No easing up

It's Sunday and hasn't been one if the best days of my life.  Saturday I felt so much better to the point that I sat on the computer and managed to do some work, although getting up on my own or walking was difficult.  I think I overdid the sitting thing as by night time I felt restricted.  I took my knock out pill just after 9 so we could be in bed early, hence giving Gary some more much needed sleep.  I did a very stupid thing and fastened the end of my pipe across my stomach.  At 2am I woke in pain, the pipe was digging into my side, I had rolled onto it.  The pain was agony, then of course I had to go to the loo, keeping the lights off Gary helped me stumble there and back.  Once in the bedroom getting into bed was again a nightmare.  I took half a diazapam and sat on the edge of the bed, I told Gary to get back into bed and I sat dangling my legs by the side.  I was starting to feel cold so finally I managed to lift my legs in and then finally lie back.  Some how I finally fell back into a nice deep sleep and that was it till 6.50.

I woke Gary at 7 and said I needed to get up, my left side was tight and my stomach felt terrible.  He managed to get me downstairs but I felt terrible.  For 2 hours we debated on what I should do, the pain was getting tighter and I started to feel full of despair.  I don't know how I can carry on feeling this way and battle this mesothelioma.

I drained but the relief was neither here nor there, district nurse rang to come and give me an injection.  I also took half a diazapam in the hope it would release the tense muscles in my chest and ribs.  Lorraine rang and I asked her to come up.  My bum is still so uncomfortable where these hot spots have developed so we decided to move Sofia's around.  The leather corner unit taken apart and half moved into the black and white lounge, the black material sofa moved into the living room.  What a difference, leather doesn't have that softness of material.

The injection did do a good job although my ribs to pelvic area is still tight, it is hard deciding whether to have another one later this evening.  I have decided to ask Lorraine to sleep tonight as Gary is flat, his adrenalin from dealing with my pain this morning has wiped him out.  Also it may be a good idea to build pillows around me tonight so I don't move in my sleep and end up upsetting this tumour when I move.

I know in my heart that Dr A would not do radiotherapy if he thought it wasn't worth doing, so I just need to get my head round the fact that I have a fair chance at getting through these next few weeks, but I just can't take anymore pain.  I have suffered great pain either through endo then the meso from 2000.  I am running on empty and have no idea where I am going to find the will power to get through this.

I don't want to die because I don't want to leave my wonderful husband.  We talked about what he should do if I have a heart attack in the near future, did I want bringing back, yes I said, at least at this time as I still have a fair chance of getting through.

I regret now taking the chemo, but if I hadn't given it a shot I would be wondering what if's.  I do know one thing though, since dropping the chemo the tightening down this side is getting worse and tighter.

Gary has just arranged for the nurse to call again and give another injection, the pain is getting worse and the last thing I want to do is have another bad night.  It would be lovely to go to bed and curl up like any normal person.

All I can be is honest with you, I know a few friends read my blog and will undoubtedly be worried but this is my journey through one of the most painful cancers known to man.  Not everyone will suffer my pain and I pray they don't.

My feet keep getting such strange sensations and of course I can't really walk that would help keep the circulation going, but everything is such hard work.

I just hope that I manage to guide the radio therapist to the right tumour among the clusters that have gathered.  Then it's a 4 week wait to see if it has worked, shame they can't do a blast that covers a square area of 4 x 4 and encapsulate quite a few.

I just pray my body can get over the chemo sooner rather than later.  Maybe then I can start getting back to some semblance of normalality, although it would be nice to be able to eat more than I can, everything seems to get stuck part way down.

So this is the end of today's blog, once the nurse injects me I doubt I will see straight.

To my fellow warriors keep the torch burning and don't be put off by my entry.

Way forward

Last night I could barely keep my eyes open, not surprised really with all the additional morphine inside of me, plus the fact that my MST is now 230 am and pm.  Because I was still tight I also took my tiazapam early as Gary wanted to be on bed no later than 10.  

I actually slept on my right side, facing Gary in bed but also my good lung (if I dare call it that now) was down.  I woke to find myself half on my side and half on my back.  The bile moved along with the tumour which caused pain, we went to the loo, no lights on.  Came back to bed but that was that, I was unable to get back down.  We put another pillow behind me and I sat upright in bed, I tried to get back to sleep but I was uncomfortable, especially my bum.  Gary was so tired but in the end I had to get him up, if I was able I would probably just come downstairs and sit but I can't.  He got me settled on the sofa then went into the black and white room to sleep.  

It's an awful time really, all I want is to be curled up in bed sleeping than sitting on the sofa.  He woke up again around 8.30 feeling much better for an additional hour, but as I said we went to bed early and managed an extra hour too.

The morning just flew after that, Chris arrived and gave my feet a good massage then it was getting ready for hospital.  Both of us anxious on the journey up, the what it's etc.  we didn't have to wait long before Dr H called us.  I had emailed the doc on Monday explaining I was getting better off the chemo, which I think helped.  

He had arranged for me to see the Radiologist, apparently at the MDT meeting I was the main topic.  My scns have been poured over, with one doctor surprised I was still alive.  There is no evidence of the chemo working on anything significant.  The majority of the meso is slow growing, which is something going for me.  Dr H explained that I have pretty much steered my own treatment path with him helping me long.  Again he said we will explore all avenues because he isn't giving up either, I have got this far and had to fight tooth and nail to get here.  He told me he will refer me to anyone he thinks may help.

While I went for bloods to check the potassium Gary was told that if I had received another dose of chemo he doubted I would have got over it, lights out!

Dr A arrived and asked me to point and describe the pain.  There are various tumours around this area and he wants to ensure he gets the right one.  It isn't the same as drain holes being zapped, this is going deep inside my body.  I will need a quick CT scan so they can plan the lines with me guiding where the pain in my centre chest starts.  We voted on 1 long blast as this gives us the opportunity for another blast in the future.

I will contact Dr H's secretary when I feel stronger to arrange an appointment and discuss our opinions.  I know that my body needs a good rest, also it doesn't tolerate drugs very well, in fact not at all.

The phone has just rang, Dr H has just told me that the potassium is back up to 6.8,  not good.  More bloods required on Monday, if it reaches 7 I will be admitted into Newcastle Freeman, not somewhere I want to go.

So as early evening turns into night I am still quite drugged up, wish it was different as I hate feeling like this.  More so the thought of not sleeping through is heavy on my mind.

I will close the posting here as my eyes are closing.

Nancy gives us her insight into Mesothelioma

I do like now and again to ask another to write for the blog and thought it was about time that Nancy gave us an insight into why she writes about this subject and if anything, what she has discovered over the years.

Writer Turns to Mesothelioma Community for Articles and Inspiration

Nancy Meredith is a writer for MesotheliomaHelp.org. She has been writing a blog a day about mesothelioma for close to five years. Her topics include information about gene therapy, breakthroughs in chemotherapy treatment, clinical trials, helpful hints for dealing with mesothelioma, as well as profiling mesothelioma warriors. I have written guest blogs for Nancy, and today she is writing one for me talking about how she finds topics to write about and how the mesothelioma community has inspired her.

I have been writing about mesothelioma for five years, and I can honestly say I never tire of digging deep into the stories and news about this “nasty cancer.”  But unlike Jan who can write a complete novel about vampires in just three weeks, I often struggle for days to complete just one article about the latest mesothelioma breakthrough.

I believe it is critical to ensure that the information I present, whether it be about a clinical trial, a fundraising event, or the struggles a patient is facing, is from a reliable source or sources, could change the future of mesothelioma treatment and offers hope to those in the mesothelioma community.

There is never a shortage of information about mesothelioma, but weeding through it and finding legitimate stories is important. I am especially careful now after reading about the spoof that was done by Science magazine reporting on a cancer drug that was ready for testing in patients. (There was no such drug, and ultimately they suggested peer-reviewed journals as the best resource for accurate, scientific news.)

Although many people have asked me how I can find something to write about every day, Jan is one person who knows the answer: “Until there is a cure for mesothelioma,” she says, “there will always be news and stories of both hope and despair.”

Finding my topic of the day is not always easy. I search through newsfeeds, and spend hours poring over medical journals, hospital websites, health and government websites, and I reach out to experts in the field. I watch YouTube videos, read online forums and follow and “like” all things cancer related. Ultimately though, I have found that reporting on what life is really like for mesothelioma patients and their families makes the best articles.

Since I have reached out to the mesothelioma community, beginning with Jan, the stories I have been told have been uplifting, inspirational, and in short, extraordinary. While ‘researching’ these warriors, I am slowly pulled into their lives, and through my articles I try to convey the depth of their strength and resolve in a time of adversity. Each person and journey with mesothelioma is unique, and I try to find that one distinction among the patient that sets them apart – and keeps them fighting.

Don had his music, Mavis has her humor and love of camping, Billy focuses on his gardening, Lou has her grandchildren, great-grandchildren and her fight to ban asbestos, and Jan tells vampire stories and lays it all on the line to educate the public about the reality of mesothelioma. Mesothelioma does not define them, and it is their love of life that keeps them fighting for another day.

Each time I write an article, I have a goal to make a difference in someone’s life. I’m not sure if I’ve achieved that for any of my readers, but each time I write about another mesothelioma patient, the differences they make in my life are endless. Mostly, I have learned that no matter how overwhelming life's challenges and problems can be, we should all take the time to enjoy every precious moment.

About Nancy Meredith:

Nancy is a former IT professional who now dedicates her time to writing about mesothelioma. When she isn’t writing, she can be found teaching Insanity, a high-intensity exercise class, or running through the neighborhood. Nancy lives in Wake Forest, North Carolina with her husband and their dachshund, Scooter.



Nancy and Scooter Chilling out

 

As for the rest of the news, after having such a wonderful day Wednesday I thought all was well, I had showered, walked around the house several times and even gone onto my office computer.  Come to 10 pm and boy was I tired when this damn awful pain started in the centre chest.  I took 60 severdol and drained.  I left the drain in far too long as nothing was coming out but my insides were full.  It hadn't helped I hadn't emptied my bowels either.  By midnight we climbed wearily into bed but that damn clock came to 4.30 and bing I was awake.  My ear has pressure points on it, which at first woke me, then I needed to pee!  We kept the lights off as I slowly made my way to the toilet and then slowly back.  Gary was sure I would go straight back to sleep, so was I.  But no, I actually got into bed and put my good lung down, it took a lot of courage as my chest was painful and I felt full of fluid.  I did drop off, the next time I woke up I believe it was 7.00am and Gary said "please can't we lie in"  I wish, I thought.  I stayed till 7.30 but the pain was getting worse, plus all those toilet tablets were starting to work. 

 

I just managed to reach the bathroom this morning and boy was I emptied but unfortunately stomach ache followed due to the tablets, but I had nothing left inside of me to give.  An hour at least I sat with a hot water bottle.  Boy was my behind getting sore off that toilet seat.  I finally got up but the pain in my chest was getting worse.  We did what we were told and I rang the District Nurse.  They arrived rather quickly and gave me a 30 mg morphine injection.  It did take time to work but boy was I relieved, although since I had the injection I have been swaying between this world and dream world, my tablets never do that!

 

I am told that oramorph is good, the only problem is I take high doses of MST, 230 mg twice a day, which means as a one off hit I would need to drink 60 ml of the stuff, a large mouthful and not one that I would like to do. 

 

That's my news, I have gone 2 steps forward only to be knocked back by one, but at least I can still see the future.  My meeting tomorrow with the oncologist so I have my fingers crossed that radiotherapy will be offered to kill this sucker on my bronchial then maybe 4.30 will just become another time on the clock.

 

Good luck to Steve and Linda in Oxford who are due to see theirs, only problem they have, which is a big problem, water!  They are locked in by water, I just hope it ebbs away enough for them to escape and go and listen to the options on offer.

 

Lou in Australia has had good news, so good to get this as it lifts everyone.  No problems and 3 months of doing what she wants.  She has been asked by Pakistan to video link a conference they are holding banning the use of asbestos.  Well done Lou on being recognised as a voice of the meso warriors.

 

Thoughts to all out there, we have lost a few warriors again already and the year has just started, more new names are appearing in the community, this means more new people are being diagnosed!  When will we be rid of this disease, money and research is the key.

 

The Meso Bill was passed yesterday, I am not even going to go into it as I was disappointed, Mavis has done a full report on it on her blog, which you can read here.

 

 

 

 



  



Monday - What a start

It's been a strange old weekend.  Pain has been the highlight of it along with large feet and breathlessness, not forgetting the waking up and disturbing poor hubby's sleep.

Last week I had an article published in Mesotheliomahelp.org which you can read Here about my experience and thoughts in a wheel chair.

I was also shocked and humbled when this appeared on my face book home page created by Deirdre from New Zealand.

I have so many issues going on within my body, the chemo is trying its hardest to control the new growths as well as the old stuff, the new tumours are causing pain and restrictions the. The ascities is taking all the goodness from my blood that feeds my body and cells with healthy nutrition then the potassium problem.  Since the potassium has fallen under 6 my breathlessness is getting better.  Although my feet are so swollen and the colour of them are dark purple, something that is a worry, no blood in my feet can cause further problems.

One thing I have noticed since the chemo is flushing out is the steel cage is getting worse, so obviously the chemo was helping and now without the chemical pumping in the tumour is once again getting a grip of this area.  Yesterday was a bad start which ended with me on the sofa nearly all day. I did manage to go into the kitchen/diner to eat my Sunday dinner, although after that I felt even tighter.  The tightness stayed for the rest of the day.  Bedtime I took a full diazapam but it didn't have the desired effect.  I did finally manage to drop off but woke at 4.30, the pain was the problem.  Morphine tablets hadn't helped it yesterday.  I took another half of a tablet and waited for the effect, Gary was obviously grumpy because he was so tired, I told him to get back into bed and I sat up for a while, finally I managed to lie back down on my side, it was 5.20 and then it was 7.30, daylight.  We got up at 8, Gary rather unhappy at this but I had to move, the steel cage was making it impossible to breath again.  

I sat and chatted to Lou in Australia for an hour then had a shower, unfortunately my side was so tight, I had to sit in the shower while Gary washed me and did my hair.  It was one of the hardest showers I have had.  

The district nurse arrived and saw I wasn't that well, it was decided they would inject morphine so we waited for another nurse to arrive to confirm the dose and the use of a controlled drug.  I honestly didn't think this would help, after all I had taken plenty of extra morphine yesterday.  

My dressing was changed and of course we drained again, twice yesterday, so far once today.  Anything that comes out gives me some relief.  My dressing for the couple of sores from sitting was also changed.

The morphine actually has worked so tonight I am going to have another injection to help.  I have also emailed my oncologist urging him to organise some radiotherapy for my chest and also advised that it was the chemo that has put me in the wheelchair not a full on attack from the meso.  Hopefully this will swing his decision.

I would like to stay on the chemo, although I think it would be better if I only had a lower dose and once every 3 weeks instead of twice every 3 weeks.  Not that we can actually tell the oncologist but we can hint, after all I have guided my own treatment most of the time.  Gary is totally against this and me even considering doing it now.  He wants me to have a few months off so I can build up my body, it is tough knowing what to do.  Usually Gary would say its your decision I'll back you what ever you do, something tells me he isn't going along with this.

I also heard from another sufferer who is on the same treatment, once he had a break in between his chest pains got worse, so obviously it is working.  

For the first time in a month I actually went onto the office computer, I logged onto work and cleared out my emails.  I promised I would only be an hour, Gary took the dogs and came back then went to the chemist then came back, I was still sat there.  I am now in the bad books but Gary is so tired he has now gone for a lie down.  I hope he gets a couple of hours, he is desperate for rest.

So many of us are having to make decisions right now, Mavis is taking a stand back look at chemicals and looking into food and diets.  Steve and Linda are considering trial options and other chemo's and Ray has just had no 5, these are the bloggers, but I know so many more on treatments, many having a tough time.  My thoughts are with Tess to, she is currently experiencing breathlessness, thankfully has just had a scan, I am hoping that all is clear with the cold air it could be causing this problem.

The fun in the house is Lexi is teasing Bear, she must be nearly ready to mate.  In another day or two Bear will be doing his Elvis hips and cleaning her ears out!  Then the barking and whining, oh Gary certainly won't be getting much sleep then.

As I finish up the blog for today I hope you are having a better day than mine started.  The tightness has been masked and I feel so much better, just need to keep it at bay.  I guess my target for out of the wheelchair was a pipe dream!  I am stuck between a rock and a hard place right now, but I know there are so many in a worse place than I.  A 51 year old father died this morning, he was only diagnosed 2 months ago, it just shows no one knows how this cancer will go, my thoughts are with the family right now.  

Body is fighting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.