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.
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