A wasted year

There are too many different people in too many different places who have had their own trials and tribulations over the last year for me to get away with a generic "how are you?". That's all I can come with up right now. So I hope you are all well.

Like a giant rock I have spent nearly 365 days unmoved, gathering dust, fixated on the immediate surroundings of my bedroom. I have got up maybe ten times in a year, never for more than 45 minutes at a time. Peeking into the kitchen on one of my rare excursions was genuinely exciting so that sums up how low the bar is in terms of my entertainment. To be fair I did have a dramatic six weeks in hospital and the hospice with septicaemia but that wasn't exactly fun.

My pressure sore has finally healed but the skin is so susceptible to breaking that I can only get up for very short periods in a reclining wheelchair and then have to get back into bed to take pressure of the area. Thankfully the wound healed after having vacuum dressings and Welsh maggots thrown at it amongst other things. This has also reduced the time spent by large amounts of Health Care Professionals with clipboards gathering around my backside like it's some sort of tourist attraction.

Life has been the usual combination of frustration and boredom because I'm bedridden, but without any real fear as by some stroke of luck, fate, whatever you want to call, my Gliobalstoma Multiforme appears to be on holiday. From all I'd been told and all I'd read, these tumours don't go on holiday. Once it had been classified as a WHO Grade IV tumour then I was basically waiting to die. Now nearly three years later I am still very much alive and a little bit dazed and confused to be honest.

I initially spent a lot of time downloading end of life literature and travelling around saying my goodbyes to people, which was emotionally challenging for us and those involved. Now I am still here but it doesn't feel like success or like I've beaten this disease. The oncologists scanned me last year and said there is no tumour growth. They do not want to see me until I exhibit symptoms of cancer. They cannot tell me I am better. I don't blame them but I resent the complete ambiguity of their responses. To them my situation is simply life being extended and nothing more. I still wish science was exact.

Now the next time I hear a story of someone's elderly relative who was told they had a week to live but has now joined Cirque Du Soleil as a lead acrobat, I might throw up.

It's a bit like standing on the edge of a busy motorway with your eyes closed knowing that eventually someone will crash into you, but you just don't know when. I am not a fatalist or one of those people who is obsessed with their own mortality. An acceptance of what's going to happen in future is not an uncommon feeling in people, but I don't think it is healthy for most of us. However finding the willpower and motivation to change my future is proving more difficult than I thought. Once I am up then I can start to go out, interact with the world and try and carve out some kind of a future without worrying about dropping dead.

My lovely wife is well and is still at her old school, tutoring in the afternoons. With me bed bound she has to do absolutely everything for me as I cannot even get up to get a drink at the moment. Jay has been through the mill over the last six years and I am a very lucky man as she has had to be a nurse as well as a wife, as we both agreed that it was more practical and less intrusive for her to learn how to perform a lot of the tasks the nurses are meant to do. Otherwise she has been busy with baby showers and weddings as summer is so busy.

Summer, however, seems to bring out the worst in some people. The estate we live on seems to be infested with loud, continually drunk idiots who spend lovely sunny days hoovering alcohol, shouting obscenities at each other before the inevitable descent into violence. Oh well, at least the police will always have plenty to do. When I am up I am going to get into my wheelchair armed with a taser and dispense some neuromuscular incapacitation that doesn't involve 5 litres of White Lightning cider. Hopefully my next blog will not be written from a prison cell.

Goodbye for now, thanks for the visits, messages and help over the last year and even though I don't drink I hope to resume my position at the head of a bench at my local pub sometime soon.