Cacophany and the tyranny of authenticity

It’s been a while. There are lots of reasons why.

• Physical – I’ll wang on at length about that another time;
• Practical – not much happens most of the time;
• Cognitive – treatment is increasingly affecting my ability to think straight; and
• Mental – literally.

Practical

The main problem with cancer treatment is that it is really, really boring. Most of the time is nothing but Netflix and naps, or on a good day, half arsedly mooching round the shops. The frequent hospital appointments are all about waiting. Waiting to be called, waiting for the nurse, waiting for blood test results, waiting for a drip to run through, waiting for meds to arrive, waiting to be told you can go home. Most of the people I get to speak to in any given week are brandishing a needle at me. In short, it’s really, really boring. There’s nothing really to write about without getting in to really tedious detail or just yakking on inconsequentially about daytime TV and bus timetables. That might be quite nice actually. Any suggestions?

Cognitive

Yeah, I’m struggling here.  Hopefully, this will be temporary, and there should be some improvement with time, but since starting radiotherapy, I’ve not read a newspaper article, much less a book because I simply can’t concentrate that long or that hard. It’s very frustrating. Administrative tasks that used to take half an hour now need several small bites over the course of a week or a month. Working out what I want to write and how to structure and write it in a readable way is just beyond my current capabilities.  This, and another two pending blog posts have been written in fragments of sentences over the course of months, and then stitched together in ways that probably don’t hang together very well.

There’s lots going on in the world at the moment that that I’d like to more about, like the Skripal poisoning, Cambridge Analytica, and Trump stuff, but can’t keep up. Twitter, which is about as much as I can cope with in terms of length of content, gives the gist, but not the meat of the matter.

This was all driven home by the application and assessment process for Personal Independence Payments (PIP), a disability benefit. As the lady who helped me fill the forms went through the qualifying criteria, probing about changes I’ve had to make to every day actions without even noticing, it made me recognise how much the tumour and its treatment have changed my life. Things quickly become the new normal, and you don’t notice how far things have slidden until you compare before and after. Whilst PIP was awarded, it was done so on the basis of everything except difficulties in reading, communicating and dealing with people. It makes me mad because it feels like the most difficult effects of treatment are being ignored. For example, they deemed me capable of understanding complex information on the basis of my qualifications, all of which are 20+ years old and neither use nor ornament now. Past performance is not a guide to future (or even present) success.  It’s largely my own fault. Being pig headed, I’m too proud to show the real cost of treatment, and put on the best face I could to show the assessor how well I’m doing, and then conked out for two days. A probably ill-advised appeal has been submitted, but how can you argue that your communication skills have been adversely affected without using communication skills?

Mental

I’ve lost track of the point of this blog.  Originally, it served three purposes;

1. for my own sanity –  to transfer the shock and confusion to paper so I could get it out of my head and hope that by doing so, it would quieten my mind enough that I could sleep again;
2. to act as a diary of treatment and progress of the disease, for anyone else who was diagnosed with an oligodendroglioma, and wondered what they might be in for; and by doing so,
3. to keep friends updated on progress.

What I didn’t really expect was how many people from different parts of my life would start reading it, and how knowing that would make me increasingly censor what’s written for fear of boring, depressing, offending or just generally turning people off by being all attention seeking or self centred.  So many people, in the abstract, and the very close to home have things so much worse than I do with my pissy little benign tumour and relatively good prognosis. It seems ridiculous for me to whine on about being a bit worn out compared to the very real and scary stuff they are facing.

As previously discussed, I’m rubbish with feelings. They’re easier to acknowledge online, where it’s anonymous, but the idea that people could see those feelings and then I have to look in the whites of their eyes is a right freak out. So I just gradually stopped writing.

The trouble with being bored is it gives you too much time to think, and if you’re mental and bit cranially overloaded, thinking too much tends to not go very well, especially if you’re struggling with your most effective outlet (this blog).

Do you ever find your thoughts are like the individual copper wires in a cable, or currents in a fast moving stream, running simultaneously, twisting in and out of each other, with different trains of thought popping to the fore and then dropping down the pecking order again? Before, I usually had 4 or 5 simultaneous thoughts going on, but it was normal and manageable. Now, each night when I try to sleep, my mind goes crackers with a cacophony of noise borne of anxiety. There seem to be dozens of trains of thought competing for attention, and the one I want to focus on is like a slippery eel, impossible to hold on to, and then it’s lost. Meanwhile, random words, images, place names, tunes and noises pop up, knocking me off any semblance of track.  The best way to describe it is like the noise made when a pub tips all the empty glass bottles in to a skip at the end of the night. Just a constant noise. When I finally do fall asleep, it’s inevitably to some sort of madly stressy dream and wake up feeling like I’ve spent the night competing in the Hunger Games or something.

As it turns out, some of this was literally feverish thought and dreams, but what I realised after a few weeks of this is that I need to blog. I have to blog to be able to sleep peacefully, and to do that regardless of how boring, moany, depressing or badly written that blog is.  It’s scary to tell the truth, but it’d be kidding both myself and anyone who reads this blog to skim over thoughts about what happens when the disease progresses, whether it’ll be possible to resume normal life, and the fact that out of however many years I’ve got left, fair chunks of it will need to be given over to further cycles of treatment. It’s not fun to think or talk about, but it has to be done. My counsellor said so.

TL;DR: This blog is going to get a lot more whiny and boring, but it’s necessary. Sorry. Please still be my friend.