So there I was on the cancer ward awaiting my first lot of chemo. After all the scans the docs were pretty sure the cancer had metastasized to other parts of my body (actually, in honesty, I didn’t know that at that point, but Mum and Dad did, not easy for them I think) For the hopefully uninitiated of those amongst you in cancer speak, metastasized means the cancer has moved to other parts of the body. It’s amazing how quickly you pick up the jargon when you’re involved with something!
Anyway the cancer ward clearly wasn’t used to having people with cancer who also had Duchenne Muscular Dystrophy, because they put me in an ordinary bed. What’s the problem I hear you ask (well actually obviously I can’t hear you, it’s just a daft turn of phrase) Suffice it to say that an ordinary hospital bed was not a lot of use to me because I could hardly move myself about at all and I certainly couldn’t sit myself up! At home I had an electric bed with controls which let me sit myself up and lie down etc. This was great (very expensive!) though I still couldn’t turn myself over in it, so every night when I wanted to change my position in bed I had to call either the OSO or Dad to come and turn me over, sometimes I got restless so Mum and Dad were up a lot moving me, you would be amazed how often you have to change position during a night. The OSO said she understood why sleep deprivation was the most effective torture used during the war!!
Back to the ward, Mum explained to the nurses that I really needed an electric bed, but it turned out there was only one on the whole ward (unlike these days when all the beds are electric) but someone else was in it! Bit of a problem!
The staff pondered for a bit, watched me for a while until they actually realised how little I could move for myself; so they decided I needed the electric bed somebody else had. So they waited until that poor person went for a bath and then nicked the bed for me! Result for me, but not for the other person.
I had a file explaining my treatment, both chemo and radiotherapy. The chemo was to be given in a type of cocktail over a few days and then I went to go home for a while and then had to come back in for my next batch, have bouts of radiotherapy, hospital checks to see how by blood counts were doing all to last for a period of three months or so and then see how the cancer responded. What fun!!
So in went my first lot of chemo fed in through the Hickman line, it looked just like Tizer! We had been told that my hair would fall out and that I would feel pretty rough and the chemo would make me throw up or chunder. Not nice, but very risky for me with my MD because I couldn’t be sick properly as my weak muscles wouldn’t let me heave properly so I was in great danger of choking on my vomit (sorry) so I had to have extra drugs to stop me being sick. You see my MD was problem all the time, even for my cancer treatment.
It wasn’t a lot of fun in the hospital I must say, most of the nurses were really nice, but it was pretty rubbish. It caused extra problems for the OSO and Dad because one of them had to be with me at all times because there weren’t enough nurses available to look after all my needs (I could be very demanding) I had to be fed, taken to the toilet, turned in bed etc, etc ( I don’t think they knew how to cope with me in all honesty, having a cancer patient with DMD was a new thing for them; and they had to put up with the OSO)
Anyway as ever, they worked it out and managed for one of them to be always with me, they did a sort of shift system. Lots of our friends were really fantastic and they looked after Roger and Alistair, took them to school, fed them etc, in fact they were fantastic. Others walked the dogs and looked after the horse, to be honest I think there were more volunteers to look after the animals than the brothers, but then that wasn’t all surprising!
What was really bothering me about my cancer treatment was that I was just coming up to the time when work experience happened at school and the OSO pulling a few strings had managed to fix up for me to do my work experience at Sheffield United THE best club in my opinion, I was really excited and looking forward to going and was really worried that now I wouldn’t be able to do it.