I was quite encouraged in a way by the way in which the treatments for every different sort of lymphoma are pretty much worked out, so that if you’ve got A you get treatment B, and if you’ve got B you get treatment D. And there wasn’t any sort of debate or argument about which treatment you get. Effectively there are a number of different chemotherapy regimens which have been used over the years. ABVD is chosen now partly because it’s easier to tolerate than some of the older ones that made you very, very sick and you had to be in hospital, and partly because there aren’t the same long term risks of secondary cancer developing as there are with some of the drugs used in the older regimes, which initially you don’t tend to worry about because you just want anything that’s going to actually save your bacon in the short term.

It was pretty cut and dried, the treatment of choice for Hodgkin’s Lymphoma, which is not confined to one lymph node with no B symptoms et cetera, is ABVD, and the reason for that is that it’s as effective as a number of other treatments but has less long term risk. Radiotherapy has significant long term risks, an awful lot of people run into trouble in later life who’ve had mantle radiotherapy, which is covering the top half of you and involves irradiating the muscle of your heart. So I was encouraged by the strength of opinion of the haematology community as a whole, in terms of what was the best treatment for Hodgkin’s. I think if there had been two or three different competing treatments then we would’ve got into a very detailed discussion about which was right for me. And that sort of discussion would’ve been made much easier for me as a GP because the consultant could’ve used much more technical language and we could’ve covered all the ground much more quickly and effectively than him having to actually explain in detail each and every point and explain what the long term side effects were and what the sort of chances were and that sort of thing.

So as far as I was concerned the fact that my consultant was so clear that ABVD was the correct treatment was enough for me. The fact we didn’t need to discuss three or four different competing options was I think a relief for me at the time because if I’d had to get involved in that then I’d have had to start doing my own research, it would’ve slowed things up for a short time but would’ve created a lot more mental angst for me in terms of, ‘Am I making the right choice here?’ ‘What if this happened, what if that happened?’ So in a sense I was actually very pleased that ABVD was the outright winner, as it were, in the contest for the treatments for this particular condition and I could just get on with finding out what that meant and actually sort of getting to grips with coping with it.

What about treatment decisions, did you ever feel you were involved in the decisions about what should happen or’?

Very much so, it was very cut and dried. It wasn’t sort of, ‘Well offer you this, well offer you that. It was radiotherapy to deal with the tumour in my eye. The lymphatic gland that was removed was basically very localised, I didn’t need chemotherapy and if I did need it it would have been given in tablet form rather than intravenously, which was a huge relief. But in the end my oncologist decided no, the benefits really wouldn’t be relevant. And it’s coming on for three years nearly and I’m very, very well. And I have total confidence. I think you have to have confidence in the people who are looking after you. If you don’t have confidence in them then I think theres nothing wrong with you going to say to your GP and say, ‘Look I’m not happy with what I’m getting, could you refer me somewhere else?’ Theres no shame in that, theres no embarrassment.

I personally think I’ve been very well treated and I can only have praise for the people and the NHS.

Do you feel you were involved at all in the decisions over your treatment or was it always the case that the doctor was just saying, this is what were going to give you, that’s it?

Really you’re in their hands because they know what they’re doing and you may think you know what they’re doing but you don’t. As far as blood transfusions were concerned I suppose I could’ve said, ‘No I don’t want the blood transfusion’, but apart from that really you just have the treatment. I did exactly what they wanted me to, even down to the things, they give you one or two things I’ve forgotten to mention, one thing is that the chemotherapy causes the mouth, you can get mouth sores and ulcers inside your mouth, so they give you a mouthwash which you have to use all the time, every day. You dilute it down and you swill it around your mouth. And that, I used that exactly the way they said. I did everything exactly the way they asked it to be done. The tablets were taken precision timing, to exactly the time of day, because to have the maximum effect it’s no good leaving them for two or three hours, ‘Oh I’ll take them later today. Everything was done at exactly the same time, the mouthwash was done every day and that prevented the mouth ulcers which a lot of people get from this treatment, you can get nasty mouth ulcers. If you do the mouthwash at the right time exactly as they say then it should be OK.

The hair, when the hair drops out, you have to still wash, sort of wash what’s left of it, of your hair, and they told me you have to use a very, very mild shampoo, a baby shampoo. So I went out and bought the baby shampoo and used that instead, not wash the hair too much, about twice, not more than about twice a week, because the scalp can be affected by the treatment as well. So that’s what I did, used the baby shampoo throughout the period, little things like that. Everything was done exactly to order, I had a sheet with what to do and I did it. Theres no point in thinking, ‘Oh I won’t do this, I won’t do that, it’ll probably be alright’, because if they’re saying you need to do it, you do it, and it’s for a certain amount of time, and at the end of it all you hopefully come out alright.

How did you feel about treatment decisions? Did you feel that you were involved in those at all or was it just a case of them telling you ‘this is what you’re going to have?

No. I didn’t feel involved in the slightest. I think that was one of the big things. I felt like you weren’t in control of anything. My consultant had decided exactly what treatment I was going to have, when I was going to have it. And he wouldn’t discuss it with me, which I wasn’t very happy about. I had reasons that I didn’t particularly want the treatment on the day of the week that he specified. And I told him that I wasn’t very happy with things as they were. And we eventually came to a compromise, which I think was great because it made me feel as if I was having a little bit of input into my life. And then things were a lot better for me. I felt like I could have time to spend with my family because I’d have the weekends when I was feeling a little bit healthier. Yeah I think you have to have a certain level of trust in your consultant and your medical team because they deal with this every day. But I do think that the patients ought to have a little bit of say in things or a little bit of flexibility possibly involved because otherwise you’re just losing all of your independence and all of your control.

So they wanted you to have your treatment on Fridays?

On a Friday.

That would have wiped out your weekend?

Yeah. I think you have to give yourself something to look forward to, and by having a treatment on a Friday that would wipe out your entire weekend, the time when your partner and your family are around and you can spend time with them. And having had, if you’d had treatment on a Friday you wouldn’t have been able to do that and have the quality time that you wanted with them. Yeah we made the compromise and had my treatment on a Wednesday. So by the weekend just starting to feel a bit more human and you could actually do things, which was great. Otherwise you’d just feel like you weren’t seeing anybody or doing anything all week really I think.

How were your treatment decisions made, did you ever feel that you were party to the decisions or was it a question of your consultants just saying this is what you’ve got to have, end of story?

I never felt that I was somebody being told this is what I had to have. Clearly I’ve grown over the years to put a lot of trust and faith in senior medical staff, but they do sit and talk you through it, and as I said to you earlier, that on all those occasions my wife joined me for those discussions, so that she feels she is inevitably part of that discussion. They’ve taken me through not just for that but what the alternatives are. And one of the alternatives this time was we do nothing, but they don’t recommend that, and clearly that’s not something I’d buy into, but at least he went through three or four different alternatives as choices I had in terms of treatment. So I wasn’t left to say this is the way it will be. Clearly there was a recommended course of action and that’s the one that I have followed. But it has come through discussion to be honest.

Good.

But we have to recognise that I’m not a doctor therefore my understanding is more limited and I’ve grown to trust them, not dictated to. I think that’s part of it.

I could not speak highly enough about the professionalism and the courtesy that was demonstrated to me.

So at the first appointment, the first time around he spoke to me about radiotherapy because he did not have the full report from the radiologist at that point. At the second appointment he said it would be chemotherapy because it was at a more advanced stage than he had expected. But he wanted to take my case to the interdisciplinary team, that I think is commonplace in hospital settings. So the third appointment he said that he had discussed my case and his colleagues to a person thought that he should just watch the situation rather than do anything immediately, because I am, to all intents and purposes, I am perfectly well and I was perfectly well. I go to the gym regularly, I do not suffer minor ailments, I think of myself as a fit person, I just was a fit person who had a lump which I’d had for a long, long time, he tells me maybe as long as twenty years. Had I not had that lump I would not have known there was anything wrong with me at all.

So he said at that stage, ‘That’s my colleagues’, that was the general decision that that’s the way we should take it and I will go with that if that’s what you want, but if you want chemotherapy now I will give you chemotherapy. It was fortunate that at that point I had the daughter with me who is a geneticist by training and when we came out she said, ‘It’s a no brainer mum, that was the considered decision of a range of people, a range of skills, and that’s what you should go with.

The very first treatment I had, the CMD, was part of a clinical trial, which the specialist had explained to me didn’t mean I was getting any better treatment, didn’t mean I was getting anything different, but just meant that my results would be logged and I would be slightly more closely monitored than I would be if I was just having conventional chemo. The trial was between CMD and FMD and I drew at random the CMD, which was the more conventional treatment, had been around a lot longer. And I think what the trial was about was to try and compare FMD to CMD, which gave the best results. And that was explained to me in quite some detail why they were doing it and did I want to take part in it? And so I did.

How did you feel about your treatment being chosen at random that time?

Fairly OK, I mean it was, I suppose my wife was hoping for the FMD because wed heard that that was kind of better than the other one. But no I’m kind of a pragmatic sort of chap I think, I just, if that’s what it is, that’s what it is, you know, that’s what I agreed to do and so theres no point in saying, ‘No I don’t want to do it now. So I knew it was going to be one or the other.

Did you ever find out the results of that trial?

No I didn’t.

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.