Well it’s certainly not the Christmas Day was looking forward too.
So many small things have compiled themselves into a real mess this year, I’m just down because it’s out of my control, and there really is nothing that I can control this year.
Christmas at Axnfell is normally a fun time, we don’t go all out, but we try to have a fun time. By this time last year we had loads of light up outside, tons of food would have been got in, maybe a few little gifts, and generally a fun and enjoyable time, but sadly this year is so different, I have not got the energy to do much, sitting and standing is such a painful challenge at the moment, but even these small, easy things need to be done this year so at least I won’t be alone, so a trip downstairs to the lounge to watch some really shit TV, and it really is this year, no good films on or even some good festive shows, seems all the channels have gone out of their way to put on really shit stuff to carry us through Christmas.
So Christmas with Sue and Gerry is what I have to look forward too, which is like having Christmas with two totally different people, Sue’s fun, always makes me smile, and is just what the doctor ordered to help me get through this rough time I am stuck in.
The bad bit is that I am just in discomfort all the time, meaning I really cannot enjoy being awake! Sleep is good, especially as at the moment it’s all I want to do.
This year I just cannot get to a point where I am happy, I have rooms I need to finish, but have not the energy, I can sit in front of the laptop for ages downloading stuff or working on the website, but on getting out of the chair and trying to do some work cuts activity to around 10 minutes with at least a three hour rest period, basically meaning that me trying to create shelves for the office is a major challenge, I’ve been trying to create a small section of shelving for my office, something that in normal times would normally take me an hour or two at most, so far, two months on and not a great deal to show for it.
I don’t mean to sound down, it’s just that I feel so stuck inside myself, I have things to do, and things I want to play with, all of which I just am not up to doing at the moment, even going to the toilet is a challenge these days, first off there is the physical movement to the toilet, getting out of a chair is a painful challenge once up, the walk to the toilet can take me three times longer than normal, something you have to make a mental note of, or you will be having further problems, going from standing to sitting is also painful, and then there is the actual task of releasing one self, things since Chemotherapy seem to have changed, my brain tells me I need the toilet, but the body is saying ‘what’s the password’, I have since found that I need to tell my body to relax, and maybe after 5-10 minutes of trying to relax, things finally do relax enough to go. As for the number twos, well these are really messed up, it’s either chemicals or real pain, imagine trying to pass a breeze block, I forgot to take the laxities once, never again, it was not an enjoyable night all.
Chemotherapy has changed so much, taste buds change, thing I once enjoyed I now hate, most items now taste different, now with the added fun of the PEG, I no longer eat much at all, which is why I have lost over two stones in weight since all this kicked off, not only has my stomach shrunk in size, but I now also have a tube stuck into it, even if I feel starved, after a single piece of toast, I’m full. Cannot drink water, it tastes horrible, lack of Silvia glands means most dry food gets stuck and I choke, so all food needs to have sauces along with it, another strange and painful side effect of Chemotherapy and the lack of saliva is thrush inside my mouth, now this is really painful, splits and cracks in my tongue and the dryness in my throat also creates ulcers, so everything hurts, now add that one of the very few drinks that I can tolerate is actually freezing cold Coke, now when that hits my mouth and throat there are two sensations, the first is the pain to the splits in my tongue, quickly followed by the releaf of the fizzy bubbles hitting my throat, kind of soothing for about 2 seconds, then instantly dry again, there is a liquid that they give you for the thrush which thankfully is not that bad tasting, but it takes weeks to soft out, and thanks to the Chemotherapy it will never totally go, so you have to keep taking it especially at the slightest sign of splits to the tongue.
The PEG has also shown up another annoyance in that I can no longer sleep on my side, the weight of the PEG hurts quite a bit when I am on my side, and you can totally forget sleeping on your front, that’s out of the question on two accounts, the obvious painful one of laying on top of the PEG, but also because the dam thing leaks, the stuff coming out of the PEG hole stinks and is not at all nice, at the end of each day it almost looks as though I have wet myself, the wet, sticky and smelly patch on my t-shirts every night means that I have the first job of removing myself from my stuck to my body clothing. Then every night I have to clean away the puss and other stuff that is constantly dripping from the hole in my stomach.
I’ve not mentioned washing yet, I’m not allowed to get the PEG wet for 30 days at all.
So flannel washing is the best I can look forward to, I am desperate for a bath, a proper deep one that is.
On top of this small thing like brushing your teeth is also a painful process, I find myself trying to force myself to do this simple task is a daily challenge, going days between doing this simple task is easier than actually brushing them daily.
Shaving now has to be done electronically, dry or wet shaving can often u and rip into the skin, which will not heal as it once used too.
Cancer and everything that follows such as Chemotherapy hurts, none of it is even remotely nice, but it’s also not easy to cope with, you need to find things to help you through all the crap, for me I have my office, the radios, the electronics, these things make me happy.
So what’s next? In theory it’s Radiotherapy, well at least it should be, something I may have to discuss with the local loan shark, 7 to 9 weeks in suitable accommodation in Liverpool along with travel to and from the Isle of Man seems at the moment a lot harder to achieve than winning the lottery 3 times in a row.