45

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.

 

44

Well, so there we were, waiting for the Children’s Hospital to ring us to tell us the diagnosis. This wait was going on a bit too long for the OSO. That, however, is a relative term for her because two people in front of her represents a huge queue!

Mum knew the Sister in the Intensive Care Unit at the hospital, so she asked her who was the consultant oncologist and had they heard from the Birmingham Hospital with the results of my biopsy. Turned out that they hadn’t so Mum then rang the oncology department and that confirmed that they hadn’t heard anything, and this was the best part of a week since I had the chunk cut out of my hand. The OSO was not amused! So she rang the Birmingham Hospital and after listening to several renditions of The Water Music (which she had always really liked until then) she finally got to speak to the secretary or PA of the chap who had chopped into me. It turned out that his report was still sitting on a Dictaphone tape on this person’s desk and she hadn’t got round to typing it up and sending it to the consultant oncologist at S.C.H. (got fed up of writing it all out) and it was marked as urgent! Goodness knows how the non urgent ones had been sitting there!

I don’t think you can imagine the earful that poor person got from the OSO, but in fairness, she should have got it done ages before.

Suffice it to say that the S.C.H. consultant oncologist had the report sitting on her desk pronto and she then rang us to arrange for us to go in and see her sharpish.

So Mum Dad and I went in the next day. The top lady was really nice even though she had to tell us that I managed to acquire a really rare nasty cancer (though I suppose you couldn’t have a nice one; it’s a bit like when you hear the traffic reports on the radio and they say there has been a nasty accident, what’s the alternative, a nice one?!). it seemed that this cancer normally manifested itself in the abdomen, but I had managed to get it in my hand, well I always did like to be different! It was usually terminal because it was very difficult to treat.

There you go, at the grand old age of 15, I had managed to acquire two terminal illnesses.

Not much you can say about that.

There was then a debate to be had to see if I wanted treatment bearing in mind I already had a short life expectancy in view of my Muscular Dystrophy. Bit tricky as we had to decide like now! I was a bit shocked to say the least in that I knew the MD would shorten my life but I was never really sure by how much. Mum, Dad and I went off for a little walk and wheel round in my case to decide what to do.

We, well I decided I wanted the treatment as I wanted to fight the cancer, as I had done ok so far with the MD. I don’t think Mum and Dad were so sure, but they went along with my decision, so we went back in to see the consultant.

She wanted to run more types of scans and tests to see if the cancer was anywhere else in my body and then I would have to have surgery to have a Hickman line (you can look it up on google if you want to know exactly what it is) put in my chest so my chemotherapy could go in that way rather than having loads of injections.

So the next day the OSO and I were back at the hospital (where we were to spend a lot of time) having a barrage of horrid tests and then I had to go into surgery to have the line put in. After the surgery I would have to go into intensive care for a day or so. I didn’t mind that just so long as they didn’t do it with a local again. We were in the middle of the last test and one of the nurses came to find us to say I was needed in surgery, there’s nothing like being popular!

I woke up in intensive care, and yes the OSO was there again but she was chatting to her mate who was the sister in intensive care. I came round quite well so after a day I was up on the general ward waiting for my first lot of chemotherapy. Whoopee!!

43

Well, so it looked like I might have cancer, not the best news in the world for us all.

The fantastic Doctor swung into action, and no sooner than he had studied the scan and told us what he thought was the diagnosis, he said that he would arrange for us to go to one of the Birmingham hospitals where they would be able to do a biopsy of what was now called my tumour. To this day I don’t know why we had to go to Birmingham and not stay locally at Chesterfield or Sheffield.

Needless to say the OSO was very upset, can’t say I was too chuffed either to be honest and then to cap it all the OSO started having a go at me for always going to hospitals in boring places such as Birmingham, Leeds (for my heart, another story) and Sheffield. She wanted to know why we couldn’t go somewhere nice like America or Barbados, there’s no pleasing some people!

So off we went to Birmingham so they could cut out a chunk of my hand to see what was in the swelling tumour.

So the OSO and I had to go together, the Docs said I would need to be in for a couple of days or so which meant Dad would have to stay home with the brothers and Mum and I go to stay in the hospital (here we go again!)

The first problem was getting there! Sat nav. hadn’t been invented, or we hadn’t got one, I can’t remember which. The OSO was doing her best trying to get through the centre of a very busy Birmingham not really knowing where she was going. Luckily in my wheelchair in Vera van I had a really good view of the road ahead and the signs so I was able to guide her through quite well though I did had to shout left here, no LEFT at frequent intervals!

Eventually we arrived at the correct hospital and I was admitted onto a really nice ward. Again, everyone was really nice. The surgeon and anaesthetist arrived to discuss what they were going to do. They decided between the that I wasn’t going to have a general anaesthetic but would do the biopsy under a local anaesthetic because it was too risky to knock me out because of the bad way my muscles took up anaesthetics (I couldn’t spell that before, but can now I’ve had so much practice!) I have to say I didn’t fancy being awake one little bit whilst they chopped bits out of my hand, but there was no arguing with them. The OSO said

‘not to worry she would come in the operating theatre with me and hold my hand’(my right one).

They said no she might be squeamish and faint (clearly they didn’t know the OSO)

In the end I had to go in on my own I think the OSO was peering in through the keyhole practically shouting words of encouragement to me, and telling the surgeons what to do -well, you know by now what’s she’s like.

So that was that. I had to stay in hospital for another day and then we were allowed home with my left hand swathed in huge bandages. Mum just said I was lucky it was my left hand because if it had been my right I wouldn’t have been able to drive my wheelchair so would have been stuck. She is SO caring!

We managed to get home in one piece with help and good navigation skills from your's truly. The folks at the Birmingham hospital said they would send the results to the Sheffield Children’s Hospital as a matter of urgency and we should soon get to know what the official diagnosis was and then get the treatment plan of what to do. So it was sit and wait again, the OSO’s best thing!

42

Just to make life more interesting, as though it wasn’t enough already, my left hand started to swell up gradually. We couldn’t work it out because it didn’t hurt me in any way, it wasn’t hot, it just swelled! At first the OSO thought it was going like my feet. Yes, you may well ask, but my feet had sort of twisted round and become bent. I know it’s quite hard to imagine, but due to my weak muscles not being able to keep my feet in the correct place my tendons had pulled my feet round sort of inwards. It didn’t really matter apart from the fact that they looked odd in that I couldn’t walk anyway. I suppose in actual fact it would have been much more of a problem if I could walk because I would have just kept going round in circles (yes, somewhat similar to the OSO I hear you say!)

Over the years I had been a martyr to my feet.

 I’d had horrid in growing toenails which caused nasty smelly infections, apparently another side effect of Muscular Dystrophy, they often ached and were a  generally a nuisance. When they treated and lopped off some of my manky toenails I asked them if they would cut off my feet whilst they were at it. The boring lot wouldn’t!

Anyway, back to my swelling hand. So if you sort of get the picture Mum thought it may have swollen similar to my feet. My left hand really didn’t get any use at all because I controlled my wheelchair with my right hand so my left hand just sort of sat there.

In the end the OSO decided to take me to the docs. She couldn’t work it out either and sent us to get it x rayed at hospital. That didn’t show up anything either (unlike my brother Roger who’d been x rayed at the same hospital a couple of weeks earlier to be told he had a broken back, my bros were always trying to upstage me! Actually his broken back wasn’t as bad as it sounded and he just had to keep off playing that silly game rugby for a couple of months)

So we went back to the docs with my hand (well I suppose I would have had a job going without it!) and she still couldn’t work it out. So in the end she gave the OSO some antibiotics for me, but not to take them if the swelling didn’t get any bigger, so that didn’t really help at all.

Anyway, a few days later I was having difficulty breathing again because I had picked up a chest infection. You may remember from a couple of blogs ago that I had sorted out where I needed to go to the local hospital if I had such problems.

Well that worked really well and I was admitted to the ward that knew about me and they set about trying to clear my chest infection so I could breathe again. It does help to be able to breathe! There was a really nice doctor on the ward and he really tried to help and talked to me as though I was a real person, not just a person with a problem. He really helped my infection in my chest, but the he spotted my swollen hand and asked the OSO all about it. She told him the story and he said he wanted to get it properly scanned to try and sort out what it was.

As my chest had cleared I was discharged from hospital. It was actually Good Friday I remember this because the OSO and I called in at Tesco’s on the way home to food shop for the weekend. It was dreadful in there, the queues were awful, you would have thought a siege had been announced and no food was going to be available for another six months! The OSO was steaming at having to queue for so long, patience, as you know, is not one of her strong points!

Any road up Easter came and went and I had to go back to hospital on the Easter Tuesday for a detailed scan of my hand. Would you believe it the really nice Doctor came to see us (he had come in on his day off to see how I went on; I have such a magnetic personality, I did find that people often flocked to me!!)

I had the scan and it showed a big mass growing in my left hand, it looked as though I had managed to go and get cancer as well as having Muscular Dystrophy.

41

Talking about hospitals in my last blog reminded me of another trip I had to hospital whilst I was still at primary school. It happened fairly soon after I had gone into my big power wheelchair, and it happened in a flash!

It was lunch time in summer and we were all outside playing. To this day, I don’t really know what happened, but suffice it to say that I ended up driving my chair into a pillar on a wall, but the only trouble was that my leg got there first ( I know, don’t ask, but in my defence, I hadn’t been in my chair that long and I hadn’t quite got the knack of controlling it properly! You have a go, it’s harder than it looks!)

Gosh did it hurt, but that was that and no one really thought any more of it and I didn’t really like to tell anyone how much my leg hurt. The OSO came to pick us up at the end of school. Not much gets past her, the witch! She took one look at my face and asked me what was up. Obviously I tried to play it down and said I was fine I really did hate fuss, I took after my Dad in that sense ( and lots of others says the OSO). She was having none of it and loaded us into the van and went straight down to the A&E at the Children’s hospital in Sheffield. There they were great and we got to see a doctor fairly quickly who said he didn’t think there was much wrong, but sent me for and X ray anyway. I think everyone except for the OSO was surprised when they saw my leg was broken, she said she just knew, something to do with the look on my face she said (as I said, she’s a witch)

It was quite cool actually because I ended up having a pot on, I got to choose the colour (blue) so in the end it wasn’t so bad and of course I didn’t need to go around on crutches as I already had a wheelchair. It was quite interesting actually because when we were out and about people didn’t stare at me as much in my wheelchair, I suppose it was because they thought I was in it because I had a broken leg, not because I was mad or something. You might think that is a strange thing to say, but I bet you wouldn’t believe the daft reactions we all had to me being in a wheelchair. People would pull their children away from me when they came up to me; perhaps they thought what I had was catching. It was actually quite amazing! But there lies another story!

I had my pot on for about 6 weeks or so, the only down side was that just after I had broken my leg we broke up for the Summer holidays and I had to go down to Kent with my leg in pot, but as I Said, it didn’t really make much difference to what I could do so that was fine.