Senin, 21 Oktober 2013

Ever decreasing circle

When will it stop raining for goodness sake.  I am sure the grey sky does nothing to help us and of course it blackens our moods which in turn doesn't do anything for us.
My body is starting to worry me, I even asked Gary if I ever felt well this year because I feel like I am always crap.  I know if a blue sky appeared this would help lift my spirits but I doubt it would do much for the way my insides are working at present.
Last night Gary woke me from another nightmare, in this one, which I don't normally remember, I was sleeping in a tent and I couldn't sit up, I wasn't able to breathe and Gary was holding me down so I couldn't move.  I was trying to shout out and realised he was prodding me to wake me up.  I woke up breathless, gasping for air.  Why such a dream I'll never know but in them I can't shout out, this is what worries me about towards the end, what if I am in a nightmare and he can't wake me up because I am so drugged?
Then at 4.30 I woke with a shooting pain in my shoulder, I had put my arm above my head and slept like that for an hour or more, the moment I moved it the pain had woken me.  Deep heat didn't work after the first application and I lay in pain, not breathing deeply as each inhale sent the pain through it, I had to take morphine to get on top of it and another application of deep heat.  The last I looked at the clock was 5.45 and the pain was just starting to ease. 
At 9.00 Gary came to wake me, I was so sound asleep, but the moment I opened my eyes and moved my stomach felt sick.  That heavy burning pain that is caused by the bile that had gathered and was sitting in my stomach and up my oesophagus.  Why can't something just be nice for a change and at least let me have a morning where I wake up feeling good.
Needless to say this threw my morning out, the nurse was due to change my dressing and by 11.00 she still hadn't arrived but even worse I still hadn't showered. 
My breathlessness is becoming more apparent too, what with that, being so thin and no appetite I do worry that my body isn't as fit as it was and maybe chemo will go against me instead of helping me combat this nasty cancer that is currently ruling my existence.  I have pains around the ribs, left pelvic area, right back, kidney areas and other that must all be associated with mesothelioma.  Last November when I had chemo I was fit, I knew the meso was growing but it was controllable, will chemo bring it back under control - but I need to be fitter for it to work.  Is it an ever decreasing circle that we get into and one that once half way in we can't get back up on top. 
Mavis is suffering new pains and I can understand her concerns too, so many warriors are out there fighting this cancer, a cancer that should not be ours to bear.  I keep apologising to Gary about being ill but I have nothing to be sorry for, I didn't do this to me, those who knew the dangers of asbestos did this to so many of us.
I need to have another CT Scan before I start Chemo, I had a phone call this morning from Dr Hughes secretary.  I hope I can do it without my arms above my head otherwise I will be suffering once again!
On Saturday night we had the most fantastic lightening show then yesterday rain that seemed to keep coming all day until we had a break and a beautiful rainbow fell across the garden.
One side through one window and the tail end through another window in the lounge. It was spectacular and I wish there was a pot of gold at the end of the it, but my wish would be a cure for mesothelioma.

I haven't been grooming Bear everyday as it takes so much out of me and I think he wanted to demonstrate the other day how tatty he is getting.

Wish he would stay like this and let me get at his undercoat!  As he has grown older he seems to spend more time in the house than outside these days.  We have started keeping the living room window open a little as well on a night so he gets a cool breeze, problem is we freeze!
I was planning on working today but its 3pm and I am just starting to feel human, another wasted day feeling crap. 
Tomorrow we are going to try a new routine, drain before I get out of bed and also take my omeprazole then before trying to get up and come down.  My morning coffee usually meant two to three cups to wake up, these days I can hardly manage half a cup.  I used to think it washed away the bile but now it makes me feel sick.  Maybe I sit too long whereas when I was going into the office I was more mobile.  I would give anything to be as healthy as I was in June and July, even in August although I was full of fluid I felt better than this.
I need to do a thousand things too, I must write the info for the back of The Vail of Darkness, I have the final 20 essays to put down to 10 and in my order before Wednesday and that's without doing the work I can access from home.  My eyes are playing up too, one minute I can read the computer screen perfectly well, the next I am squinting, pointless getting my eyes tested as they change from hour to hour, all down to the cancer or side effect of what the cancer is robbing my body of.
Guess I have spilt my thoughts out again, I just hope my fellow meso warriors aren't having such a grey time of things.  Treatments can be harsh on our bodies, recovery from surgery a long journey but it is worth it not to have to suffer the cancer.  I am concerned I have waited too long for chemo, maybe I have passed that point of no return but until I try fighting again I'll not know. 
My other concern is if I start chemo and I am ill with no benefit have I used up the last few months of what could have a little bit of quality to having no quality at all?  Questions we have no answers too unless we try.
It would be great if our individual cancer could be tested against the chemo drugs before we start to see what effect it did have but in a test tube is so different to in the body itself.  I know that progress is being made on the new virus treatments and gene therapies that are being studied but will they be out in time for people like us who are here at this moment in time.  The ever decreasing circle needs to expand to give us hope and time. 
We don't need to be told we are dying, we need to be told we can help maintain life, and as I have clocked up 9 years since diagnosis I still need to hear this.  How many times have I been told I should concentrate on quality rather than quantity but to have quality you need treatment, but we need hope too.  So many have died for no reason, so many turned away from oncologists who don't believe in prolonging someone's life.  I'm not ready to give up just hope my body isn't either.
Good luck to you all out there fighting, to those in remission I hope and pray it lasts for years, those debating over treatment, don't waste time, get it sorted- once meso is in control then you have joined the ever decreasing circle.

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