Saturday, 1 October 2016

Snooze envy

Little sod

Look at the three-legged monster cat.  Fast asleep, which is how he spends about 18 hours a day.  I think the lucky blighter is taking the piss.  As, although I have been plagued with fatigue that has frequently had me housebound, sleep eludes me.  Last night was a particular bugger when I was wide awake from 1.30am onwards.  I think the pathetically low dosage steroids I'm on might be to blame.  I'm about to run out of them anyway as the onc wasn't particularly happy at prescribing them, but I begged as I was desperate to have some energy.  Hey ho.  While I'm in bleating mode I'm still struggling with constipation and the breathlessness on any form of exertion, like walking to the kettle, is incapacitating. 

So, that's the bad stuff but I do have some good stuff to report too.

Firstly I had CT scan results last week and again there was no change in the cancer.  Again I was astonished, and very pleased, as the breathlessness led me to believe that things were getting much, much worse.  I'm having more chemo in about 10 days time, so I will rugby tackle the onc to the ground then and stress the importance of trying to get the side effects (I assume) under control.  I say I assume that the breathlessness etc are side effects as I have no-one else to compare notes with.  However, I know a couple of people who are being assessed as to their suitability for the SYD985 trial I'm on, so perhaps I'll have someone to swap stories with soon (although I hope they're not blighted with breathlessness).  I just really hope all this yuckiness isn't my body waving the white flag.  I've now had about 60 cycles of various types of chemo since being diagnosed in early 2012 and I think that's a lot by anyone's standards.

As getting out and about is now very difficult I decided to bite the bullet and get a wheelchair.  This was, like the stair lift I got a few weeks back, a horrible idea in theory but in practice brilliant.  Also, I was extremely lucky in that I've got a rather whizzy wheelchair for free.  Some friends had a virtually unused chair that they no longer needed and they gave it to me for nowt.  Aren't people lovely!

Anyway last Thursday, out of nowhere, I had a good day.  So we quickly loaded up the wheelchair and headed for the hills.  The Stiperstones to be precise, where there's an all terrain track which enables people with disabilities to get out in the lovely Shropshire countryside (yeah, I know I'm biased).  Here's a picture of me pulling a very strange face and being rather windswept but, although appearances might suggest otherwise, enjoying myself.

Wagons roll

I'm hoping for some more good days soon so I can shout wheelchair steering instructions at the other-half and generally be a pain in the arse.  I'm also hoping to go wig shopping as my hair is thinning by the day (although more slowly than on some other chemos).  I usually just wear hats and scarves when bald but thought I might give a wig a try again, hopefully it won't be as sodding uncomfortable as the one I got a few years ago.

Also there was one good thing about last night's insomnia.  I found a hilarious twitter account (in fact I woke the other-half up by laughing so much).  Here's the link but don't click if you don't like swearing, rudeness, black humour and fluffy bunnies.  Don't say I didn't warn you.