Wednesday, 4 December 2013

50


Ha ha, just when you thought I’d gone quiet, I’m back. That’s the good thing about being dead you can pop up anywhere.

So these blogs are a sort of post script to my original blogs. I thought you might like to catch up with the OSO’s doings and of course the rest of the family, also thought I might put forward some of my views with regard to what’s going on in the world today. Well at least I can’t be sued for libel as I’m already dead!

The OSO is thinking of publishing my original blogs as an ‘e book’.

She has had thousands and thousands of people reading the blog many of whom who have said it must be published as it is so good. So she’s had a word with a friend in the trade who thinks it is ‘a runner’ and so she’s going to give it a go I think. What do you think?

Monday, 28 October 2013

49


So there I was stuck back in hospital with the OSO, both of us with rotten chest infections! She said she was fed with me having everything wrong with me she was going to have a go!

Needless to say, mine was a lot worse because by the time they had x-rayed me they find out that I had pneumonia in both of my lungs. Well if you’re going to do it, you might as well do it properly! So I had to have loads of antibiotics through my line. On the other hand, the OSO just had a really bad chest infection, though it didn’t stop her trying to kick me out of my bed so she could get in instead. What with her and Dad, who always ate my food and then fell asleep when he came to visit me every evening, I really did have a lot to put up with!

It wasn’t a great deal of fun in hospital, I had to be in a room on my own ‘cause they didn’t want me to infect everybody else, the only bright spot was that I got to miss having to take my mock GCSE’s as I was in hospital, to be honest I was quite surprised that school didn’t bring them for me to do in hospital!

Eventually I got better enough to go home again, but I still couldn’t manage full days at school, so I went back to picking and choosing which lessons I went to.

By March I was feeling pretty grotty, and one Tuesday Sheffield United had a match at home in the evening, so I just went into school for the morning and came home at lunch time so I could rest in the afternoon so I could go to the match in the evening, cunning plan eh? I knew what my priorities were!

However, things didn’t go quite according to plan because I was struggling to breathe; I had an oxygen cylinder at home by this time so that usually helped me to breathe if I was struggling, but that day even that didn’t help. The OSO and I came to the conclusion that as much as I wanted to go to the match, I really wasn’t fit enough to go.

The problem was that Ali and Roger were also due to go, but that was soon solved as Claire said she’d take them with Sam, her son and our good friend, so in the end that was what happened. Needless to say, I was not dead chuffed went they all went off to watch my beloved United.

I struggled during the evening with my breathing, Mum rang my cancer nurse who promised to come round with some more oxygen, the OSO also rang our lovely GP, so I could tell she was worried. Dad was home by this time. Mum wanted to stay and sit with me in my room, but I said I was fine thank you. As ever, being the person that she is she kept coming back into my room to see how I was doing. It got to nine o’clock and I was wanting to know what the score was at the match, when I suddenly really couldn’t breathe and my heart was going mad, Mum kept hugging me and Dad was there, eventually I got my breath back a bit enough to tell the OSO that it’s true what they say, your life does flash in front of you; and then I’d gone off again.

This time it was for good.

That was it, I wouldn’t breathe ever again. The Muscular Dystrophy and cancer had finally beaten me.

As you might imagine, that night was dreadful.

Dad had phoned Claire who was on her way home from the match what had happened, so she stopped for a pizza, like you do, on the way home to give Mum and Dad time to try and sort things out a bit, The doc arrived and she was great as was the cancer nurse who had just arrived with the oxygen cylinder!

When the brothers arrived home they were devastated I had died. (I should hope so too!) Eventually they managed to get Ali into bed and Sweep, our collie dog, did something he has never done before or since and he jumped onto Ali’s bed and stopped there with him all night.

The funeral people came and took me away, I think that was one of the worse moments for the OSO who didn’t get any sleep all that night.

The next day Ali’s rugby team was due to play in the Derbyshire cup final; so good lad, he went in and played and they won, cheered on by the rest of the family, when you can’t let things get in your way!

I was glad to say, that school did a lot of counselling for my mates who were upset that I had died.

The next thing to do was to arrange my funeral, which was sorted out, as you can imagine by Dad and the OSO. She stood up and talked all about me at the funeral service. She said she’d been to so many funerals in the past where someone who didn’t know the person talked about them when they had died. She said she wanted to do it. I know she found that really hard, because when she was out walking the dogs on the morning of my funeral, she had a little chat with me, and asked to get her through it, which I did of course.

There were loads and loads of people at my funeral. I was dead chuffed with the attendance! The parents and Roger and Alistair had decided that they were going to walk in with me accompanied by the music that Sheffield United played in the ground when they scored a goal! Well, as ever they liked to be different! The brilliant thing was that the particular recording of this song they played at my funeral was one that had been recorded at the game with Liverpool earlier that season (which we won) and I was at the match, so somewhere my cheering was on that recording. That has to be a first I think; how many people can say that they cheered themselves into their own funeral!!!?

Tuesday, 22 October 2013

48


It has to be said the following months weren’t exactly easy for any of us; but as ever we carried on just doing the best we could.

However we had a great summer holiday down in Dover at our favourite place in the bungalow we knew so well in Deal. The OSO was a little worried I think in case I was not very well or needed to go to hospital. As ever the Sheffield Children’s Hospital were brill and they stopped my chemo and other lovely stuff for a while and they gave us the details of the hospital in Dover should we need it, but we didn’t. As I said, we had a great holiday, I got tired a bit quicker, but we had Gran with us as usual, so she and I would sit and watch the rest of them running around if I got tired (actually I think Dad was glad of the excuse to have a little sit down too). Dad and I often went to sit on the cliffs behind the ferry port in Dover and watch the ferries come in and out, which we both loved doing.

One year the OSO had arranged for me to visit the main Dover Ferry Port Terminal. That really was a fab day, I got to go up into the control tower, visit the police station, the customs posts and best of all we went out on the harbour patrol boat and we took one of the harbour pilots out to a boat so he could bring it safely in. A fantastic day!

Whilst Dad and I watched the ferries Mum and the bros would walk from Kingsdown to Dover all along the white cliffs and meet Dad and me there, they really loved doing that walk, bit energetic for Dad and I, he always said he was built for comfort and not speed!

After we got home we carried on and we went back to school in September, again I picked my days, or parts of days when I went in and all went fairly well. As I said in my last blog it was my GCSE year so I just decided to prioritise and do the ones I wanted to, being a bit ill did have its advantages at times!

We spent Christmas day with the Villages which was great. I struggled a bit and the OSO and I went home a bit earlier than the rest of the family, but I was ok really and New Year’s Eve was again spent round at a party with all of our great friends there. We didn’t’ believe in letting Muscular Dystrophy and Cancer stop us from enjoying ourselves!

As the rest of the school Christmas holidays progressed I went and got a chest infection. I was supposed to be having some more chemo treatment but I wasn’t well enough to have it. By this time I was having weekly visits from a cancer nurse at home. She just checked I was ok and would do lovely things like wash my stent out (what joy!) She was really great and the OSO and her got on like a house on fire (basically they were both round the bend!). Anyway, my chest infection wasn’t getting any better, so the cancer nurse said I’d better go back into hospital for some antibiotics on line as it were. So that’s what happened.

Monday, 14 October 2013

47


Meanwhile the oncologist was shouting for me back in hospital to have some more treatment. My treatment happened in sort of batches. I would go in for a couple of days at a time over a period of ten days or so and then I could go home and back to school and just go into hospital every few weeks or so when the medics could try and assess how my cancer was responding and I could have a lovely blood test to see if I was neutropenic or not. Neutropenic means you have a low neutrophil count (that helped explain it didn’t it!) Basically when someone is having chemo treatment all the new growing cells in the body are zapped out (another medical term) and this means not just the cancer cells but also good red and white blood cell, neutrophils  etc and hair growing cells (which is why hair falls out!) so this means that you can end up being very anaemic and not having any ability to fight infections and the like. Not the best scenario but there you go. So, back to my blood tests. I had to have them regularly just to make sure that the chemo was not completely wiping all my good cells out. Eventually your body does make up the new cells and you start to feel a bit better again and the medics are really pleased because it means they can give you more chemo and the process starts all over again. Bliss!!!

On the whole I didn’t do too badly. I had to have a couple of blood transfusion as my red blood count was so low, and at one point I got shingles (very itchy and painful) even though I had already had chicken pox (same virus). This meant I kept having my chemo and radio therapy. The OSO and I developed our ‘hospital face’ as I called it. You sort of learn to joke your way through it all to help you cope, we a real double act. One time we went for me to have some radiotherapy and the radiotherapist who was doing it said that she really should have finished her shift, but when she’d seen my name on the list for the afternoon she wanted to stay because the OSO and I made her laugh so much!

So the treatment carried on as did life in our mad household. I sort of developed a shift system for going to school. My treatment often left me feeling pretty ropey and I couldn’t manage whole days at school so I used to go in for parts of the day so I got to pick which lessons I went to. Result. Bit of a drastic way even I have to admit for getting out of lessons! It did mean that all of our lives got even more complicated trying to get all the members of the family in the right place at the right time. It wasn’t helped by the fact that by then both Alistair and Roger were heavily into their rugby and playing at a high level; Roger was actually Derbyshire captain. This meant they had a lot of extra training after school and matches of course, so the poor old OSO was everywhere with us all, she swore that one day she would literally meet herself coming back! She was fine though, she thrived on being busy. As ever our good friends were brilliant and helped out enormously in all sorts of ways by ferrying the brothers and even leaving meals ready in the kitchen that Mum just had to warm up for us. I’m sure we wouldn’t have managed without them.

To add insult to injury I was in year 11 and this was the year I was to take my G.C.S.E.s, flipping heck!

Thursday, 3 October 2013

46


So the question was how to mix having chemotherapy and doing my year 10 work experience at Sheffield United?

Answer: get the OSO to arrange a meeting with the consultant oncologist who was organising my cancer treatment. I think she was a little surprised to say the least. She said she had never been asked that before, but then again, as she admitted, she had never met a team like the OSO and me before (that’s what we were, a team, and as you have probably realised by now, quite a formidable one!)

To be fair, she was great and she took the request in good heart and sorted it out so that I would have no treatment around May when I was due to be at Sheffield United. Result!

So that was that, up until then I carried on having my chemo and radiotherapy which wasn’t exactly a barrel on laughs, but it did seem to be working as the tumour in my hand was shrinking. However one of the down sides was by then all of my hair had fallen out (not helped by the fact that the OSO took the horse clippers to it!) so that I was going to be bald when I was at United.

So the OSO and I turned up at the appointed time at the Blades ground on Bramall Lane. It was a shame that mum had to come with me, but there was no real alternative because she had to drive the van to get me there, (though I made her promise to behave herself) also we weren’t too sure what I would be doing and I thought that they might have found me and my wheelchair a bit of a problem, which, as you will have probably realised by now most people and organisations didn’t really know how to deal with me!

Not a bit of it at SUFC, they were fantastic from the start.

There were three of us on work experience from different schools and we were all treated really well and had a great time. The club said they wanted to give us all a really good experience in as many of the areas of the club as they could. On the first day we had a tour of the ground and a good look round and even though I couldn’t get up into the stands, I never felt left out at all. On the second day we went up to the training ground to see the squad at work. Here the OSO was rather embarrassing in that she kept wandering round with the coach quizzing him about his training methods, still it did leave me to go round on my own and chat to the players who were really great. The manager, Neil Warnock came up in the afternoon and he too was brilliant and we all had a great time. At the end of the day some photos were taken of all of us work experience students with the team and Neil Warnock. That photo still has pride of place in our home also we were all given a signed SUFC football, and not surprisingly that is almost like a family heirloom now!

I also tried my hand at working in the club shop and sorting out the orders for the club shirts, but everyone realised that I would have to rely on the OSO to do most of that for me, so in the end I spent a lot of my time in the club archives room which was where they had lots of old stuff relating to the club and they had tours for school children, pensioners and the like going round, this was something I could do well on my own, once I have learnt all the different aspects of what was on show. It was great being there because Dave who worked there was fantastic and it got that all the OSO had to do was drop me off there in the morning and then come back and collect me later in the afternoon because Dave was more than happy to feed me my lunch and take me to the toilet etc,

 ‘no problem at all’ he said.

 Dave and I got on really well and he even offered me a paid job on Saturdays to take groups round the archives. SUFC were brilliant because they found things that I could do rather than just think I couldn’t do anything.

The OSO was really well behaved as well, the only really embarrassing thing she did do was to jump on the club coach just as all the team players were setting off to go to a fixture. She had bought a photo of Phil Jagielka scoring an amazing goal against Leeds and she wanted him to sign the photo as she was going to give to Ali for his birthday which was (and still is for that matter) in May. (he still has it on his wall to this day) You would have thought she was getting on a school coach at work for a netball fixture or something, honestly the brass neck of her! In fairness the players didn’t seem to mind at all, they were really fantastic.

As you might have gathered by now, I really had a great experience at Sheffield United,  I was really sorry when it came to an end,it was one of the best times of my life!

Friday, 27 September 2013

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.

 

Monday, 23 September 2013

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!!