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Interview 05

Age at interview: 37
Age at diagnosis: 36
Brief Outline: Hodgkin's Disease diagnosed in 2004 treated with chemotherapy (ABVD). In remission.
Background: Partsman, married with two children aged seven and three. Ethnic background: White European.

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He developed symptoms of rheumatoid arthritis which were treated with methotrexate. After several months he discovered a lump in his armpit which was dismissed by a locum GP as a harmless lipoma. A few months later he discovered a lump in his neck. He happened to meet an uncle who was a retired GP, and showed it to him. The uncle recommended that he see his GP as soon as possible, which he did. The GP referred him to hospital where a specialist did a biopsy that confirmed he had Hodgkin's disease. 

He was given six cycles of intravenous chemotherapy called ABVD. He took a few days off work after each treatment but continued to work for the remainder of the period between sessions. At the end of treatment, scans revealed that some lymphoma remained, so he was given two more cycles of chemotherapy. During his chemotherapy he moved to a new job closer to home which involved shorter working hours.

After this there was some disagreement over whether or not lymph nodes in his armpit remained affected by the cancer and it was suggested that he should have high dose chemotherapy followed by a stem cell transplant involving a prolonged stay in a hospital far away from where he lived. Eventually a PET scan proved that he was actually in remission, so the treatment plans were abandoned, much to his relief.
 
 

Had a lump removed quickly and painlessly under local anaesthetic.

Had a lump removed quickly and painlessly under local anaesthetic.

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So I went back and saw my normal GP who referred me to the hospital. And went there and there they saw the specialist and the specialist arranged for a biopsy and they did a biopsy under local anaesthetic, they took a small incision, took the lump out of my neck. 

Did they do that under day surgery?

Yes it was very quick. When, it was arranged to see the surgeon for the biopsy, I actually, I was in hospital three times that day, I saw the rheumatologist in the morning, I saw the surgeon at 2 o'clock and the surgeon actually, whilst we were in there he said, 'Well hang on, I'll make a phone call,' and he went into the next room, came back and said, 'Right, we'll do the biopsy 4 o'clock this afternoon.' So the biopsy was done the same day. It was done under local anaesthetic. Luckily we're within walking distance of the hospital so we actually left the hospital, came back home, had a cup of tea, went back to the hospital, had the biopsy done and took about half an hour, an hour, I think it was a very, very quick process. They just, he literally just made a small incision on my neck, took it out, a couple of stitches and done. It was remarkably quick and painless.
 
 

Waited a week for his biopsy results but had already been told that lymphoma was the most likely...

Waited a week for his biopsy results but had already been told that lymphoma was the most likely...

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And how long did you have to wait for the results? You said you thought everything happened quite quickly?

It was all very quick, I think it was the following week and that was, it was Tuesday, all the hospital appointments seem to be Tuesdays, I don't know if they have six times the number of staff on a Tuesday in the hospital or something, but it was the Tuesday that the biopsy was done, I think the following Tuesday I was back in and given the diagnosis. 

Did you have any idea what it might have been while you were waiting?

We had an idea yes from the first time I was referred to the consultant, when they examined me and they did say that in all likelihood for age group and symptoms that I was showing, it would, the most likely thing was a lymphoma, be it Hodgkin's or non-Hodgkin's. So based upon that we knew that was the most likely outcome. 

 

Was annoyed when he discovered that a locum GP he had seen first had falsely reassured him that...

Was annoyed when he discovered that a locum GP he had seen first had falsely reassured him that...

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The only criticisms I would have are when I first went to the GP and I saw the doctor I don't normally see and was told it was nothing, obviously it was completely wrong. So I was annoyed at the time because he made me feel I was wasting his time a little bit, which was, OK it was acceptable had he been right, but bearing in mind the fact that he was so completely wrong, I was really quite annoyed about that. And I did actually, not make a complaint, but I let them know at the surgery. The other doctors there are brilliant, everyone has been very helpful so I didn't want to really make a big song and dance about it, but I just pointed out that it was wrong and I wasn't happy. But he was only there for two weeks, it was, I don't know quite what the circumstances were, but he was only there for two weeks on sort of an exchange basis or something so it wasn't really the fault of the surgery particularly but they took it very seriously. 

 

He spent several hours in a day unit every two weeks where the various chemotherapy drugs were...

He spent several hours in a day unit every two weeks where the various chemotherapy drugs were...

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So started the chemotherapy in a day room, just sat there and I was in for the day and the various drugs were put in and it was all explained to me very well before I started so it was, you know, the recovery rate was very good and everything. So we went in knowing what was happening and feeling quite positive about it. The first few lots of chemotherapy it was, the chemotherapy was every two weeks, it was initially they said six cycles, one cycle of chemotherapy was actually two lots of chemo in each cycle at two week intervals. So it was a month for a cycle with two lots of chemotherapy. 

Do you remember the name of the chemotherapy you were given?

The chemotherapy was ABVD, which is, there's a pink one, they put the needle into your arm, (a cannula is it?) a cannula into your arm, then there are four drugs the A, the B, the V and the D, I can't remember what they're all called. Two of them are put in from quite large syringes, you've got the saline going in and at the same time they put a syringe into the line and inject this. They also inject you with an anti sickness drug and I think a steroid is injected as well. Then the other two drugs, they're also on a drip and what they do is you have the saline going in and the drip with chemotherapy. I would go into the hospital at about 9.30, 10 o'clock and I would leave by about 3 to 4 o'clock, so it was a day sitting in an arm chair in a day room having the chemotherapy administered. 

 

Was depressed when told that he would need two extra chemotherapy treatments because a scan after...

Was depressed when told that he would need two extra chemotherapy treatments because a scan after...

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We carried on, after three months of chemotherapy we had a halfway scan and everything was going well, it was, the lumps were all going down, there were, all of the lumps were believed to have been above my diaphragm, I was Stage 2 Hodgkin's disease. I had two lumps under my left arm, two under my collar bone, two in my neck and several in a sort of cluster under my sternum. The largest lumps were in this area and they were regressing at a pace that the doctors were all very happy with. I carried on with chemotherapy, got to the end of the six cycles, which we were hoping was going to be the end of it. 

I then had another scan after which we were told that no, there were still some lumps present, so we'd have to have a further two cycles of chemotherapy, which was, that was a shock, although we knew it was possible we really hoped that that would be the end of it, and so it was quite depressing to be told that you have to go and have further treatment. That was almost harder than the initial diagnosis because you think you've done it but then you're told, 'Oh no, there's going to be more'. And so we were told that that would happen. We were also told that there was a limit to how much chemotherapy you could have and that once you've had the eight cycles that would be it, you know, there was a possibility that I could have radiotherapy or start something else then, but that should be the end of it. 

So we carried on, there was a one month break whilst the scan took place and everything, and I did actually start to feel better after even just after a month off the chemotherapy, and then back in for another two cycles. So we had another two months of chemotherapy, which wasn't, the first cycle probably wasn't as bad as the latter ones of the six months because I've had this bit of a break, but then, again, as it sort of built up inside me it really started to knock me for six again. 

 

Used hypnotherapy to help him relax and sleep better.

Used hypnotherapy to help him relax and sleep better.

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Another thing that came about is I didn't do that much but one of the parents at the school my children go to is a hypnotherapist, and I went along to see her and had a session of hypnotherapy and I was given a tape to take away and you can play back to sort of, and it works better with some people than with others. Some people apparently report when they play the tape they completely lose that time, they don't remember it. I never got to that stage but I did find it helped me to relax and I could listen to the tape which would help me to relax, I could then sleep better if I was having trouble sleeping or anything like that. And that was a help. But beyond that I didn't actually do very much more than go through the normal treatment.

So is the intention of the hypnotherapy that it can help you overcome the illness?

I believe it can actually overcome the illness. My consultant at the hospital I was going to had been looking into it and there was one chap she said had actually had hypnotherapy and I think it was some of the medications to combat the side effects, I couldn't tell you what kind of cancer he had or anything, and he hadn't needed any of it because the hypnotherapy had worked so well that he didn't need a lot of, he needed chemotherapy drugs and he was taking those, but some of the drugs to combat side effects he wasn't using because the hypnotherapy had worked so well with him. Other people had improved and she was firmly of the belief that it does help with the positive outlook and your mind overcoming the body and helping in that respect. It's something I've always been a little bit cynical about but, as I say, even just in helping me relax it was worth it just for that, so if that's all you get out of it, well and good, but it may help you a lot more than that, so it's certainly something I think people should consider. And no I'm not paid by any hypnotherapist.

 

His doctors considered him for a trial involving PET scans to assess the effect of chemotherapy,...

His doctors considered him for a trial involving PET scans to assess the effect of chemotherapy,...

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Did they ever invite you to take part in any clinical trials at all?

There was talk at the beginning, when it was first diagnosed there was talk of there was a PET scan study, there was a trial on that where I would've had the PET scan done I think earlier and a lower amount of chemo, I think it would've been four cycles of ABVD again with the PET scan. But there were limits on it and I was just over the limit in terms of the bulk of the disease, I'd slightly too much of it, some of the larger lumps were just too big to put me into the trial so I was discounted for the trial.

 

His employer gave him an allowance of sick days to use as needed but later became difficult about...

His employer gave him an allowance of sick days to use as needed but later became difficult about...

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After I'd had the chemotherapy I would take some time off work, and I was taking three to four days off work after the chemotherapy and then I was, to try and keep some sort of normality in my life, I'd start to go back to work. 

Initially where I was working had been very good and they said that I could virtually come and go as I pleased. They gave me an allowance of sick pay and said whether I took the days all at once, or if I took a few days here and there, I had this allowance. So that was very good and very helpful so we were comfortable with the knowledge that money wouldn't be an issue and we could just get on and do the best we could. 

But as I say for normality I was trying to get to work as much as I could, just it made, it helped me not to think about things, not to dwell on things too much, and daytime television is awful, it depresses you more. This carried on for, we went through the six cycles. 

Also during this time my work had started to become really very difficult about the time off, and they then decided that they weren't going to be paying me any time off sick although I hadn't used up the allocation that I initially had been promised. And they also had me clocking in so if I was late they could dock me time and whatever, so it became quite unpleasant. Fortunately for me, a place that I'd been working at previously had asked me to go back, and they knew all about my illness and they were quite prepared to take me on in spite of my condition. And it was shorter hours and nearer to home so I took it on with the view that once I'd recovered it would also be good for me to be in a less stressful environment. So I actually changed my job whilst going through chemotherapy. But, as I say, they were very good and it's been a lot easier and I'm sure it's helping with my recovery in that I'm in a much more stress-free environment. 

Did you lose out financially?

No not, they agreed an allowance of pay and then went back on that agreement and I argued the case quite strongly. But that to me was, 'Right OK, I'm off'. There were also other things happened, my immediate manager got sacked during the period, whilst I was having the chemo, and I was acting manager but they then gave it to somebody else. And we don't know if it's because I was ill, what the reasons were, but it was all a bit questionable. And they were putting upon me a lot more because I was the one that had the ability to do the job and the chap who wound up taking it didn't have the knowledge so I wound up doing a lot of the roles but without actually getting the credit and everything. And so various things conspired to make me leave and I got out as quickly as I could but stepped straight back into another job. And it's back at a company that I'd worked for for ten years so it was quite easy for me to step back into it, I knew the job well, so that was very good. But I was extremely lucky in being in the position that I could do that, it could've been really quite unpleasant.

 

Never felt alone having had many offers of help and support from friends, neighbours and parents...

Never felt alone having had many offers of help and support from friends, neighbours and parents...

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In what ways have they supported you, I mean everyone, not specifically your parents, is it practical support, emotional support?

Emotional, offers of practical help and support, most of them you don't take up but the thought is there and the offers are there and just, even just asking how you are, you know people care and that their thoughts are with you. And just in general conversation even, 'If you want us to look after the kids, if you want some time off, if you want to do this, if you want to do that, if we can help', if they can help my wife by taking the kids, there were so many offers. It was excellent.

People were, most people were very, very good, helpful, supportive, I mean our neighbours have been brilliant, friends, offered to help, do whatever they can. It's amazing how many people are behind you in something like this. Other parents at the school, the school, their attitude towards the kids, it's just, you're never alone, you've always got other people. And in the day room having chemotherapy you're like your own little support group really, you know, you're talking about it and you're laughing and joking saying well, this bit fell or whatever and it's, you go through it together, you're never left alone, there's always somebody there for you, which was fabulous. I mean that's really been very, very good.

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