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.