Living with Hodgkin's Disease (My Experience of Hodgkin's Disease)

Member Name: mcrouch

Product:	My Experience of Hodgkin's Disease
Date:	07/07/01 (1127 review reads)
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Having read and commented on one or two of the personal experience stories on DooYoo, I got to thinking about writing my own. I’m a little wary as I’m not the sort to open up about my feelings and this certainly isn’t an experience I’ve discussed much in the past. Apart from putting the past to rest, I hope this may also help people in a similar situation to come to terms with it and give them hope. So with deep breath, here goes…

Just over ten years ago as I approached my 25th birthday, everything with the world seemed well. I had a reasonably enjoyable social life and for the first time since leaving school, I had finally found a job I enjoyed and that was stable (unlike some of the others). I was earning a decent wage and had money left over from the bills. What more could I ask for? But then something rather unexpected happened.

I had been experiencing slight breathlessness for a while but just put it down to the cold winter weather. It was around February and we had had a lot of snow and ice. One Sunday my dad asked me if I would go and break through the ice in his water barrel as it was causing the patio to flood every time rain fell. I told him I didn’t feel so good but in my family’s usual fashion, he told me that there’s nothing like a bit of hard graft to wash away how you feel. And so I dutifully went to work. I did a good job but I felt bad and very breathless for a day or two.

Shortly after I began to get very hot at night, even though the temperature outside and in was cold to moderate. I was sweating a lot, not just exertion-type sweat but absolute floods of sweat that soaked the duvet and pillows – I would wake in the morning with damp hair! I knew something was wrong even though everyone kept telling me that it was probably just a bug.

So one day I skipped work and visited the doctor. At this point my throat had begun to swell and feel a bit sore
. He told me that it was almost certainly glandular fever, prescribed some drugs and sent me home. After four or five weeks of this, the swellings were starting to spread under my arms and my chest felt very sore. And so I went off to the hospital for tests.

At the hospital I underwent numerous tests and lots of x-rays. No one would tell me anything but I knew something was not right. Eventually I was taken into a side room where I was told I was going to have my lungs drained – they contained almost two litres of fluid. This was a fairly uncomfortable feeling that left me with a bubbling sensation in my side all weekend, not to mention feeling very dizzy. On the Monday I went back in initially for a few days. More tests were done and then came the bombshell.

I was sitting up in bed having finished breakfast when the doctor in charge came round for a visit. He had brought about six or seven student doctors with him, sat down and told me straight that I had Hodgkin’s Disease. And then they all got up and left! I had absolutely no idea what Hodgkin’s Disease was. It was a junior doctor who eventually sat down and told me everything. Deep down I knew it was cancer long before any of this so in a funny way it was no great shock. My family were devastated however. Being a business-as-usual sort of person I tried to be strong for them and just chatted and joked in my usual manner (in my experience cancer patients share a darkly-veiled sense of humour in such situations). I think it gave time for my parents and sisters to cope with their feelings rather than worrying about me coping with mine. In reality I felt I was falling to pieces. Luckily there were some great nurses there to help me through it (as a result I will not have a word said against NHS nurses who do a brilliant job in very difficult circumstances – just imagine the emotional turmoil they must go through every day. I wish I could same for the senio
r doctors who break the news – about as subtle as a sledgehammer).

I began chemotherapy almost straight away. Ironically the fortnightly injections and daily intake of 24 combined drugs made me feel worse than the illness itself. I was given some anti-sickness tablets but these made me even worse as I had an allergic reaction to them. In the end I just had to take the drugs and suffer. I left hospital after two weeks and went straight back to work much to everyone’s shock and surprise (I did say I was a business-as-usual sort of person). Although mentally that helped me, in the long term it set me back professionally as I made several very stupid mistakes – because of the treatment these were overlooked at the time but they came back to haunt me for a long while later on. I wish now that I’d taken a month or two to get used to the treatment which played havoc with my memory for a while.

Back to the treatment, I got to know several other patients during my fortnightly trips to hospital. Ironically one of them was a work colleague’s father. It amazes me how most of them always seemed to be ready with a smile and a chat; no complaining or whining about “why them?” – they just got on and dealt with it which under the circumstances is about all you can do. People have often said to me “Oh you must have been so brave”. Well no, I wasn’t, I just got on and dealt with it like everybody else because I had to.

The bravest people are the family and friends who fret and worry. They suffer for you and expend a great emotional price in the process. I honestly don’t think I could have summoned up the energy to fight if it hadn’t been for them. I can remember on one rare occasion when I let my guard down and I just stood and cried. My dad who was in the room at the time just walked over and hugged me – one of the few occasions since childhood that I could re
member him doing so. At that moment it was all I needed just to regain control and get on with things again (he admitted later that he’d been feeling terrible for sending me out to break up the ice, something we’ve laughed about over the years since).

I went through this for about nine months when the chemotherapy came to an end. By then the head of hair I had lost (which is a far less traumatic experience than you might imagine) was starting to grow back like a furry crew cut. I quite liked it, girls like to stroke it (I didn’t complain too much) and it amazed me because it grew back a lot thicker and slightly darker than it used to be. I was given a reprieve during which I had the best holiday ever in Cyprus and Egypt. By Late November tests showed some of the cancer still present and I underwent a course of radiotherapy. This was not especially traumatic either although after a week or so, I had what felt left extremely bad sunburn – the pain of that was excruciating but again you kind of get used to it and just get on with things.

This went on for almost three months. After that it was a case of fortnightly check ups to see how things were and take more blood tests and x-rays. Gradually these became monthly, then two-monthly, and then six-monthly check-ups. After five years they became annual checks up and I just had my last one back in February. To all intents and purposes, it’s all over. Over the past few years I have gradually drawn a line under it and have started making good progress in my job again. Despite what some people say, I do not feel I’m a better or different person for it neither do I believe that life’s a bitch – it has been as fortunate to me as unfortunate.

If anyone reading this is going through a similar experience now, my advice is don’t take any advice. Just listen to yourself and do what feels right for you, cope any way you have to but don̵
7;t take it out on your family and friends. Those poor folk are probably having a tougher time coping with it than you. And if it all feels like it going too bad, just look at me; I made it through like a great many others. Now no one would ever know there had been anything wrong with me unless I told them and my life is as normal now as it has ever been. And if you are the friends or family, look after each other, talk and share things because at times like this you need as much help as the patient.

My apologies if I have rambled on a bit longer than I intended. I have just been writing as I remember it and it’s brought back a few memories I’d forgotten or put aside.

Just to end on a light note, I had been put on an alcohol ban for around ten months when treatment ended and I was then invited out on a friend’s 21st birthday pub crawl. I was desperate by now to let my hair down (or as much of it as had grown back by then) and I went. Being a bit younger than me, he and some other friends took joy in spiking my drinks as a welcome back to alcohol initiation. Surprisingly enough, I found after a number of drinks that I seemed to be completely immune to the effects of alcohol. The others were getting beyond merry and it didn’t feel as if I’d touched a drop. Good fun but being the sensible sort, I called it an early night just in case. Unfortunately this immunity did not last forever but that’s life!

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