The more things change, the more things stay the same

Hello Peeps

I hope you are all healthier, happier and wiser since I last communicated. Somehow the ***!!!! previous blog has disappeared. Of course, it was hugely funny, insightful and thought-provoking. Alas, cyberspace (or potentially the author's incompetence) has claimed another victim.

Recently, I have been getting up out of bed more regularly and going out a bit which is really positive. I hadn't gone out for over a year so just going outside for a meal and to the movies has been a treat. I have lost a year in bed but once I had a hair cut and shave, I was ready for action. Progress is slow as my pressure sore, although healed, is prone to blistering if I sit out for too long. So far I'm up to about six hours at a time.

I still spend a lot of time stuck in bed and I think I probably watch too much TV. I am relatively confident I can now fly a small plane, run a ruthless criminal enterprise as well as process a crime scene without contaminating it. Who says TV teaches you nothing? Thankfully, I have still been reading so my brain isn't complete mush. 

Since I have been paralyzed I have seen many "cures" for paralysis hit the news. Stem Cells, Electric Impulse Therapy and many other cures have been bandied about and the painful truth is that all of it is rubbish.  Then the other day I watched this  http://www.bbc.co.uk/programmes/b04mm8zl 

I was pretty much blown away as it seeemed there is some hope of a cure. That is all you need to keep going. Click on the link and spend a little time watching the Panorama programme as it is amazing.

Of course I have a tumour that is causing all the problems. I have decided that once I have had a scan next month, and if nothing has changed, I will explore the option of possibly finding a surgeon who is willing to operate on me. It simply does not make medical sense that I am still alive if I have such an aggressive tumour. The NHS can't treat the tumour further and, the last time we checked, they were not willing to remove it, but I am not going to keep sitting around and wait for it to do something nasty.

In other news, last week I was quietly celebrating a year of hospital-free existence. This was shattered when a nurse decided to catheterise me with what seemed to be a crossbow bolt.  I lost a lot of blood and my wife nearly fainted but she powered through. It was like a scene from a Halloween movie and I ended up in A&E again. 

Thankfully, for once I didn't get a bad infection so just spent a few days in Hospital and was released with only a small pressure sore to show for it. In a fit of Victor Meldrew-like stubborness, I refused to pay £7 a day to watch television so for entertainment I read a couple of books and watched a patient who looked like a pirate, behave like a pirate - screaming 'aargh' a lot and attempting to destroy the ward.

Jay is well and still tutoring kids in the afternoons, slowly becoming a grammar guru. She has also inadvertently become a nurse over the last couple of years with my continual run of bad health, and has learnt a lot from one of the District Nurses so looks after me amazingly. Otherwise we are both well and will be spending Christmas with Den, Pegs and Gaylee at home. I will make an effort to update this blog more regularly. I hope you all have a great festive season and a happy New Year.

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.