My Experience of Cancer Content from the guide to life, the universe and everything

My Experience of Cancer

5 Conversations

Young man, arms aloft, victorious

It all started one weekend, at the end of the Easter holidays. I should have been going on an expedition as part of the Duke of Edinburgh Award - I'd got everything ready and packed my rucksack, but I just didn't feel up to it which for me was unusual, as it takes a lot to stop me doing something. At the time, I didn't think much of it, and just tried to get a bit of rest.

Things Get Worse...

It was Saturday evening before I realised how rotten I felt. I'd taken it pretty easy during the day, just watching TV and pottering around. But I felt really rough. My neck was feeling a bit stiff. Knowing a little about meningitis, I thought I'd better check. The stiff neck was the only symptom I had, so my Mum decided to call the doctor out.

The doctor arrived, and gave me a good check over. He paid particular attention to my neck, as that was where the problem was most apparent. His verdict was that I'd probably got glandular fever. He told me to take the week off school (which was the first time I'd had off school through illness for years), to go to the hospital on Monday and get a blood test, and to see my own doctor Tuesday morning. So I did as he said. When I saw my doctor on the Tuesday, he checked me over as well. He also said the results of my blood test hadn't arrived yet, so he'd chase it up, and ring me at home. In the afternoon, he did indeed phone me up, but it wasn't quite the news I had been expecting. In fact, the hospital had managed to lose my blood, so could I go and give them another sample.

At the Hospital

When we arrived at the hospital, everything was chaotic. Not only was it fairly busy, but part of the roof had smoke coming from it. I just managed to give my details in before everyone was asked to leave the building. We were directed to another part of the building, so I could have the blood test done - but we had to go an awfully long way round to get to it! I eventually gave up a bit more blood (some of which ended up on the floor), which was sent off for analysis. By then, the drama had quietened down, so we could all go the quick way back to the waiting area.

After a while, I was seen by a doctor, and sent to have an X-Ray of my chest. Again, I didn't really think about it at the time; I just went and had it done. When I'd had that done, I was examined by one of the hospital doctors. I wasn't really sure what was happening, but they said they wanted to do more tests, so I'd have to stay in overnight. Until then, I'd only been in hospital when I was born, and when I fractured my arm aged four. I'd never had to stay overnight.

I was taken up to the ward, the children's ward, as I was only 15. Various people explained various things to me, my temperature and blood pressure were taken, and eventually someone managed to get me a sandwich (I'd missed tea). I was finally allowed to settle in, when all the doctors came in doing the ward rounds. I was prodded and poked so many times - I think I managed to get to 20 before I lost count. At some point, my parents came back (I can't really remember when my Mum left), with an overnight bag. And a Walkman! This was to be a great comfort, especially in the middle of the night, when the little children were being noisy.

When everyone had gone, it felt very strange. I knew there was something wrong with me, I knew I was in the best place; but at the same time I didn't really want to be there. I suppose the screaming kids might have had something to do with that. And the fact that I was woken up every hour to have my blood pressure and temperature taken...

In the morning, I had a visit from the hospital 'teacher'. As I was in my first GCSE year, it was important that I didn't fall behind. It's always much harder trying to understand something when you're also trying to catch up with everyone else. I was given several forms to fill in about what subjects I was doing, which examining boards were setting the exams, what books I was using, and so on. As you will see, this turned out to be a bit of a waste of time. My Mum also came in for a bit, bringing a few books and things, to keep me occupied. The morning was fairly uneventful.

In the afternoon, one of the nurses asked me to phone my Mum, and she asked her to come in. There was something that we needed to talk about. So I had to wait for my Mum.

Finally, we were all there in the nurse's office - my Mum, the senior nurse, and myself. There were two important things that were said. Firstly, they needed to do more tests. They weren't sure whether they would do them at that hospital, or at the Children's Hospital. Secondly, the tests they had done showed that I had cancer - a type called a lymphoma, which affects the lymphatic system. The other tests would show exactly which type of lymphoma I had. Needless to say, I was devastated. I felt like I was going to die - I could only think of all the things that I hadn't done. I think I spent the next half hour or so in tears, while my Mum phoned my Dad, and our local Minister.

After a good walk around outside, I had managed to calm down a little. When we came back to the ward, one of the nurses told us that the other tests would be done at the Children's Hospital, and I would be taken there in an ambulance. It was about a half hour wait for my transport to arrive, and then another half hour or so through the rush-hour traffic. I can't remember how, but I somehow got upstairs to the ward. The consultant wanted to talk to all of us together, so we had to wait for my Dad. We didn't have to wait long though.

At the Children's Hospital

The consultant told us what tests they wanted to do - a lumbar puncture (taking some of the fluid from the base of the spine), a bone marrow aspiration (taking some of the bone marrow from a hip), and a lymph node biopsy (removing a lymph node for analysis). He also explained a bit about the different types of lymphoma: there is Hodgkin's disease (named after Thomas Hodgkin in 1865), Non-Hodgkin's B-cell and Non-Hodgkin's T-cell (which affect different types of cell). The treatment regimes are subtly different - some 'blast' a huge proportion of the cancer over a relatively short time, and slowly 'clear up' the rest; some are more gentle, but keep going at the same level throughout.

The more severe type of treatment has a small risk though - all the dead cancer cells are filtered out by the kidneys. So, when you blast a whole load at once, it is possible that the kidneys may get blocked up. However, they couldn't say which type of treatment I would be having, so we had to prepare for the worst. To counteract the possibility of my kidneys becoming blocked up, I would be put on a drip, to keep loads of fluid going through my body. Of course, they had to measure exactly how much liquid, and there's only one way to do that - when it comes out. I hope you can see what I mean.

The one other thing that they wanted to do was to put a central venous line in - I know it sounds like something from the London Underground, but it has a purpose. Basically, it's a silicone tube that enters the body through the chest. It goes into one of the major veins, and round almost to the heart. It is held in place inside the body by a 'patch', hidden beneath the creases in the neck, and as it leaves the body with a few stitches. The advantage of having a central line is when it comes to injections - the tube has one, two or three 'lumins' ('branches' of tube, with a rubber seal) that you can use for injections. It's a lot easier when you need a lot of injections, since you don't have to mess around finding a vein...

So things had to get started. We went back to the ward, and I think I had my temperature and blood pressure taken yet again. Then it was time to get the drip connected. The doctor put a cannula (one of the biggest size!) in my arm, and took another blood sample and she managed to spill some of it on the bed. Then she flushed out the cannula before connecting the drip. Except when she started flushing it out, my skin started swelling just where the point of the needle would be. Yes, the needle had come out of the vein. So I had to have the drip put on my other wrist.

After an uneventful night (except for my stats being taken every hour), I was told that I couldn't have any breakfast, because they might be doing the tests soon. But first I had to get dressed (not easy when you're connected to a drip), and have a CT scan of my neck and chest done. It sounds easy enough, but the machine wasn't the latest technology, so it was comparatively slow. Also, it was designed for children. I could fit on it, but it wouldn't be able to scan everything unless they did it in two stages, moving me in between. All in all, I think it took about three-quarters of an hour.

I was hoping to be able to have some lunch, but the tests were going to be done in the afternoon. So I had to go hungry again. The surgeon who was going to do all the tests came to talk to me to explain (in as much detail as I wanted) what was going to happen. There was also some paperwork that needed to be dealt with - consent forms. Before long, it was time to go down to theatre.

I woke up aching all over. I couldn't remember what was going on, I didn't have a clue what time it was. I went straight back to sleep again. I can't remember anything else about that night. In the morning, I was finally allowed to eat something - a couple of slices of toast. My first food for ages! I was still aching a lot, especially my neck. I could hardly move my head without hurting, and there was a huge bandage going part way across my neck. My chest was hurting from the central line, and I had to be careful how I moved, otherwise it kept catching on my clothes.

About half way through the morning, the consultant came to see me - the tests had shown that I had Hodgkin's disease. He also explained that one of the side effects of chemotherapy would be reduced fertility - so if I wanted, I could 'donate a sample' at one of the other local hospitals, which has a department for assisted conception. He suggested that I did that the following Monday, so that the treatment could start on Tuesday.

The rest of the day was pretty mundane. I just had to be a bit careful how I moved, as I was rather tender. In the evening, I was allowed to go home.

The Treatment

The treatment I was to have was one of the more gentle regimes - so I didn't really need the central line. Normally, I would have two weeks' treatment, followed by two weeks off treatment. In the fortnight that I was having treatment, I would have an injection on day one and day eight (a drug called vinblastin), and lots of tablets to take every day - clorambucil, prednisolone and procarbozine. The injection would probably make me feel sick, so an anti-sickness injection would be given at the same time. I would also be given some anti-sickness tablets, in case I needed them.

For the first few months, everything was fine. I'd go to the hospital with my parents, have a blood test to make sure that I was all right to continue with the treatment, and go and see my doctor. I didn't have the 'classic' side effect of chemotherapy - hair loss. It just got a bit thinner, but only my hairdresser really noticed. So people soon forgot (or weren't reminded of the fact) that I was still very ill. That is, they didn't notice until the end of the fifth course of treatment.

Trouble With Side Effects

I'd been on a work experience placement through school. I had to miss a couple of mornings for hospital visits, so I had to tell the people I was working with a little of what was going on. On the Thursday night, the day before my final day, I had a bit of trouble sleeping. I was fine when I went to bed, but I woke up at about midnight with a terrible ache in my knees. At the time, I thought nothing of it, and tried to get back to sleep.

At about one o'clock, I woke up again, with my knees on fire. I hobbled across to the bathroom, took a painkiller, and hobbled back to bed, hoping that I would be able to get back to sleep. I did, but only for another hour or so. So I took another painkiller (now I was up to the maximum dose), and tried to rest. I can't remember if I did get back to sleep or not. When my Dad got up to go to work, my knees were still incredibly painful. I'm pretty sure I was in tears at this point. So he got my Mum up, and we all went down to the Children's Hospital.

By the time we got to the hospital, my elbows were starting to ache as well. The hospital was fairly quiet, so it wasn't long before I was seen by a doctor. His explanation was fairly simple - it is an effect of the build-up of drugs in the body. There is no way to prevent this build-up, so you have to treat the symptoms. So after each course of chemotherapy, I now had to take the maximum dose of painkillers for a few days. Needless to say, I didn't go to my work experience placement that Friday.

Good News at Last

Before the fifth course of chemotherapy, I had a regular check-up CT-scan, to check that the chemotherapy was having the desired effect. This one came back clear - so I had only to take another four courses of chemo. Then I could get on with my life again. By some strange coincidence, the last day of the last course of treatment was 27 November, 1996. To most of you, this would have been a day just like any other, but it was also my 16th birthday. I think that was the best present I could have had, finally finishing my treatment.

One Final Side Effect

In January, I was ill again. I had shingles - similar to chicken pox, but a lot more painful. It affects your nervous system, and is usually restricted to one area of the body. You also get small blister-like spots, which itch terribly, and so I had to go to the hospital for this. After being made to wait for ages, I was finally given a prescription - some impossibly big tablets, which had to be taken five times a day. I still wonder how I managed to swallow them...

When I next saw my doctor, we discussed shingles. Apparently it is fairly common two to three months after finishing chemotherapy. The root cause is the reduced immune system, leaving the body more susceptible to infection.

And now...

I still go for check-ups - only one a year, but it's more than enough. It was a difficult time of my life, but I got through it with a little help from my friends. Didn't someone write a song about that?

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