Interview 18

Age at interview: 58

Age at diagnosis: 51

Brief Outline: Non-Hodgkin's lymphoma diagnosed in 1998 after shoulder pain and finding a lump. Two years of watchful waiting then three bouts of drug treatment, with short remissions in between. Now in longer remission after receiving radiolabelled monoclonal antibody.

Background: Marketing Manager, married with two adult children. Ethnic background: White British.

More about me...

He developed a shoulder pain which he assumed was due to playing sports. His GP prescribed anti-inflammatory drugs, which had no effect. He returned to the GP and got stronger drugs which still didn't work. Then one day when drying himself after swimming he noticed a large lump above his collar bone so he returned to his GP who referred him to hospital for a biopsy. He was unconcerned about what it might be so was very shocked when told the results showed he had non-Hodgkin's lymphoma. Two weeks later he saw a haematologist who explained what it meant and arranged for tests to stage the cancer, then recommended a period of 'watchful waiting' during which he would attend for regular check-ups but no treatment.

After two years several of his lymph nodes had enlarged so it was decided that he should start on a mild chemotherapy called CMD. Six sessions of this put him into remission but it only lasted 5-6 months. A further 6 month break was recommended to give his body a chance to recover before having more treatment. He was then given four doses of rituximab. He had an allergic reaction to the first dose so was very carefuly monitored for the other three. He went into remission but again it only lasted 6-7 months so he was then given six months of COP chemotherapy, which in turn put him in remission for a few months. It was then decided to try a radiolabelled monoclonal antibody treatment called Zevalin, preceded by two doses of rituximab. A year after treatment he is still in remission, feels that his illness has left him and has returned his life to what it was before his illness.
 

Has had many bone marrow biopsies and explains why he prefers having them under sedation rather...

You said you had a bone marrow biopsy done. What was your experience of that?

Well I've actually had several now over the course of the years. Someone said at the hospital recently I was kind of going for the record. I think I've now had probably close to fourteen or fifteen bone marrow biopsies and it would be easier just to leave a little tap in there really wouldn't it? It was fine, the very first one, again not quite sure what to expect. I was given heavy sedation and so I just basically nodded off for fifteen / twenty minutes. Woke up, all was done, a small plaster stuck on the puncture mark in my back, a day or so of an aching back and then it's OK, it's not distressing. 

I'd had one where because of a mix up in communications I had actually eaten on the day they were going to do it, because they hadn't, they'd told me the wrong day, and so I had one under local anaesthetic rather than sedation. Which was slightly more difficult in so much as the local anaesthetic certainly numbs the pain but it's still fairly distressing, you have to grit your teeth. But it's fifteen seconds, I counted, fifteen seconds and when it's finished there is no after effect, no recovery, you're OK. 

But generally I always, with all of the other ones I've had sedation, which is simply a needle in the back of the hand. It's done in operating theatre. I generally, because the hospital know me well, because I've been going to so long, I walk to the operating theatre I just kind of follow the bed down, hop up onto the bed, chat to the nurse whilst the injection goes in and wake up some time later recover and go home. And it's, again it's one of these things you tell people you have a bone marrow biopsy and sort of alarm bells, they assume that it's awful and it's dreadful and that you're going to be in pain, and simply you're not, it's very well managed. 

Explains how often he saw his specialist during 'watch and wait' and what happened at those...

So at the very beginning when you were on 'watch and wait' how often did you see your consultant in that time?

It varied between six and twelve weeks over a couple of years, the same routine each time would be a bone marrow, sorry a blood test, which then enabled them to check my bone marrow from what they were seeing in the bloods I guess, and just a physical examination, a chat, how did I feel, how was I coping? I was introduced to Macmillan nurses several times during these interviews, which I thought was actually very good because when I later went for the treatment the same nurses who I'd met were involved with that as well. At one point I was also taken up to the chemotherapy room so I could just see where I was maybe going to have to end up, got to know the procedures. And, but they, again they became a matter of routine. 

And the hardest part was sitting in the waiting room, just waiting to go in. And I'm fortunate I've had a very good haematologist who was very understanding, very approachable, and obviously over seven / eight years of meeting him regularly he's become quite a friend in many respects, and the doctor-patient relationship is kind of blurred a little bit because he knows of my interest and I also have done some charity work and things like that, so he tends to keep me informed about things that he may have heard and frequently will ask me if I've heard anything new that I can tell him.

Needed regular reassurance that he didn't need treatment and could forget about his illness by...

So what I'm trying to get at is can you tell me a bit more about your mental state during the watchful waiting period, you know. You hinted that you weren't entirely happy with having nothing done, you know, is it a big problem?

No it's a very strange, it's also hard to put myself back there, bearing in mind that was 98/99 and part of 2000, it's quite a few years ago. 

Part of me was, I suppose, slightly relieved that they weren't actually going to do this chemotherapy that I'd heard about. Each time I would go and I suppose each time the haematologist would say, 'No we don't need to give any more treatment,' somewhere in the back of my head was thinking, 'Well this can carry on for years, you know, ten years, twelve years and then well, perhaps that's it, perhaps that's all that's going to be'. So it was slightly worrying but as long as they kept reassuring me that I was OK. And my own feeling in my body was I was OK and I could work and travel, I could do everything which I'd done prior to diagnosis, I could live with that. 

The problems came going back to the hospital every eight, ten weeks, whatever it might have been, because then you remember. You just get to the point where you're busy with other things, life is happening, and you can sort of put it to the back of your head. When you have to go to the hospital and sit in the waiting room and it's in the front of your head again and you have to consider all of the options that are available to you. But some people I understand really struggle with the watchful waiting because they want to get on and do something. And I was fortunate' I'm busy, I was working, and that filled the gap, I suppose that filled the worry hole that could be there. And then when we came to the point of actually doing the chemotherapy then I could actually focus on that, I could focus on, 'Right, now we start to work'.

Said the chemotherapy treatment suite was very comfortable, refreshments were provided, and the...

The nurses who administer the chemotherapy, I tend to refer to them as Macmillan nurses because I think some of them are, some of them may not be, but they just work within that area. The whole experience of having chemotherapy, at least in my hospital, is made as stress-free and as pleasant as possible. The nurses are not in uniform, they're just dressed in their civvies, if you like. The treatment suite has a set of very comfortable recliner chairs so that most patients get their treatment sitting in a recliner and you can put your feet up if you wish. There's generally music playing, you're brought tea and biscuits if you need it, if you're there for the day sandwiches will be provided at lunchtime. So, and they also take care to explain, you know, if one started to feel a bit hot or a bit uncomfortable they would explain, 'Yeah that will pass, don't worry'. But they keep an eye on you. Very friendly people. 

The anti-emetic drug prevented nausea until his sixth treatment, and he vomited on only one...

The other side effect you've mentioned, I think you had with all of your treatments, was nausea?

Mm.

Did you have anti-sickness tablets each time?

Yes, each time pre-chemotherapy, sometimes they're a tablet, sometimes they're an injection. And they were very good. I think with the very first regime of chemo, the CMD, I think I said it was only the sixth or seventh where I started to feel unwell. The first one to three treatments I felt fine, I could just come straight from the hospital and carry on. After the fourth and fifth I needed half a day's rest just to kind of compose myself. But the sixth or seventh, yeah they were quite sick-making. But they only lasted, that feeling only lasted a day or so, and it's no worse, perhaps it's only my judgement, it doesn't seem to be any worse than people who are sea-sick, and you get better. 

So were you ever actually sick?

Only once, which was slightly embarrassing. It was actually after I'd had the seventh treatment. I left the hospital. My wife usually came with me every single time for the treatments, but on this occasion she actually was not well very herself so she reluctantly let me go for treatment on my own. And so I had the treatment, checked out of the treatment unit, went to reception just to let them know I was on my way out of the hospital, and on the way back to the car in the car park I actually vomited, I didn't make my car. It was just once and I went back and told them, because I was told that if you were sick within a short period of time of having the chemotherapy you'd better come back because they might have to do it again. So I was in sort of two minds about whether to go back, but I went back and I just said, 'Look I've just been unwell,' and they said, 'Well, were you sick a lot?' 'No, just a mouthful I suppose,' just to be graphic. And they said, 'No that's OK, you can go home.' 

So I actually drove home, being fairly cautious how I drove because I didn't feel well, and came and put myself straight to bed and slept for about four or five hours. And I really felt I had been poisoned, whatever that feels like, you know, you sort of see TV shows where people have been poisoned, and I felt poisoned and slept and slept through it. But the next morning I was weak, of course, and felt tired and exhausted from going through it, but I was OK, appetite was back, I could eat normally, and the day after that I was perfectly alright again. So the anti-sickness drugs really do work very well. 

Had a severe allergic reaction to the first infusion of rituximab so it was stopped and restarted...

So it would be a year or so later I started again with a chemotherapy called rituximab which was, at the time going back five years or so, quite revolutionary. And that was explained to me that it was only four infusions, given over a four week period, very minimal side effects and pretty good chances of a long lasting remission. The first dose that I had went, I had a very bad reaction, and it was explained to me that, after I'd recovered from the reaction, which was actually quite alarming, I had I think it's called an anaphylactic shock. It was explained to me that basically some people can do that, I'd been the one person in the X thousand that it had happened to, and that they would then reconsider whether they should continue with the further treatment. 

I think the hospital spoke to the drug manufacturers, got some further advice, and after a long discussion between my doctor and myself, we decided to try again. And I was very, very closely monitored, I actually was admitted as an in-patient, given some pre-treatment, instead of a four or five hour infusion it became a thirteen hour infusion and I was, actually my blood pressure and temperature was checked every fifteen minutes throughout those hours and hours of infusion. And that seemed to be OK so they actually were able to get that first infusion of the therapy in. After that they were OK, they were five or six hour drips and again gave pretty good results. I was declared clear, again, and that lasted for about another six or seven months before symptoms presented yet again, unfortunately. 

And when I had my problem, totally professional. Because the drug had started to cause me some small side effects, this was the Mabthera drug, because it had started to cause me some small side effects early on in infusion, they'd actually said, 'We'll put you into bed rather than on a recliner,' because the ward had got conventional hospital beds available. And that degree of forward-thinking and realising what could happen, it's probably not, not too strong to say they saved my life. I was told that had they not recovered me that I would have been quite seriously unwell, they were talking of matters of minutes before my' because my blood pressure just disappeared, I was struggling to breathe. But then I actually lost consciousness but my wife, who was nearby but pushed out of the way, said they just kind of went into overdrive. And one minute they were these kind of friendly nurses just in ordinary clothes chatting and having a cup of tea with you, and the next minute they're doing what they do well.

His suitability for having Zevalin was assessed, he had two treatments with rituximab before the...

And we started again with investigating how best to combat and to treat the illness. And at that point there was talk of a new drug called Zevalin, which at that point I think had been only used in a very small number of cases, and it was decided that maybe I was a suitable case for this. So I had to be assessed at a specialist hospital who had a nuclear medicine department that could investigate how successful it may be. 

And so it was that in November '04, on my birthday, I actually went in for the first pre-treatment, which was actually some more of the treatment which had actually made me unwell beforehand, so one has to be treated first with the rituximab before you can actually have the Zevalin. And so I spent my birthday, my fifty-seventh birthday in hospital as an in-patient because again they wanted to make sure that if I had a bad reaction I was in the right place. I didn't have a bad reaction, had the treatment, came home, had a not very pleasant reaction the next day, severe nausea, which passed off within twelve hours of it starting, thank goodness. 

A week later I went for the second dose of Mabthera/rituximab, which was the day before the Zevalin infusion. And again I was an in-patient for this. The Zevalin was given on December 2nd 2004. It's very undramatic despite its power. It was a ten minute infusion of a radio-labelled, radioactive isotope basically, which then goes into my blood stream and attacks the tumour cells locally. That took ten minutes to infuse under very controlled conditions. I was asked to stay in hospital for four or five hours afterwards just to make sure that I was OK. I was checked with a Geiger counter to make sure that it had actually flowed around my body, that it wasn't just sitting in one particular place, and at the end of the afternoon I could go home. My wife was able to drive me home but I had to sit in the back of the car rather than next to her because I was apparently emitting radiation, and anyone that got within two feet of me was at risk of some minor problems so I had to sit in the back of the car. 

I got home, slept well, but the next day became quite unwell with nauseous feelings, aches and pains, and that lasted two or three days. But happily remembering that it had taken place on December 2nd, by Christmas Eve I was completely well, I felt completely well. 
 

He was excited to be treated with the new drug Zevalin and the staff watched with curiosity.

How did you feel about having a radioactive drug put into you?

Quite excited I guess, because my doctor had told me how revolutionary it was and how excited they were by the results they were seeing. And before I had it I had to go to a hospital with a nuclear medicine department and the professor who was in charge of that was also very excited because of the tremendously good results which he'd heard about from the US and I think he'd actually visited people over there. So yeah it was an exciting thing to do. At the hospital when I had it done a lot of people actually came into my room to see it because it was so unusual, nurses and doctors kind of popped in to see how I was getting on. And also the actual administration of the drug was something a bit unusual. Because the, I suppose the syringe that it was carried in was radioactive it had to be carried in a protective box and then I had to be behind a shield, which the professionals stood the other side of, and they were very cautious and timed everything to the minute because they're dealing with this I suppose potentially quite dangerous medication. But no it was fine and I, because of my interest in all things scientific I suppose, I'd always wanted to know what the drugs were which I was having and what they were doing and how it was working, and by comparison to some of the other chemotherapies it actually seemed a lot safer. I mean it was explained to me once that the conventional chemotherapies have a kind of caustic effect and they burn the insides of your blood vessels as they go up. Which explained to me why I got pains in my forearms because obviously one month it was the left, another month it was the right, and I couldn't understand for a while why my forearms were aching so much, and then one of the nurses said, 'It's because at that point it's very, very concentrated of course and it's literally burning away on the insides of your veins', which is not something to actually look forward to. So the Zevalin was just a very clear liquid, absolutely no feeling of it going in, no sensation other than just of being infused and the usual thing which you get used to after so many years of treatment.

And how long did you have to stay more than two feet away from your wife for?

For a week.

It must've been a bit of a challenge?

It was. Well it was actually quite amusing because it wasn't just that. When I went to the loo I was given all sort of dire consequences of missing and splashes and things like that, and that they had to be mopped up with copious amounts of water, lots of tissues, which then had to be disposed of safely. So we were warned against problems of going to the loo. We were advised and strongly warned against what was called intimate contact, being very, very polite about it. We were warned not to hold hands or do anything for a week and we, in fact sleep in separate bedrooms was the advice, which we did. I was also told not to go anywhere near pregnant women and young children, which was quite ironic because my daughter was actually nine months pregnant and we were on stand-by to kind of take care of the kids if she suddenly went into labour, because her husband works overseas quite frequently. To complicate matters he actually got appendicitis ten days before the baby was due, which was just about when I was in hospital, so I think that was more distressing for me than anything else, the fact that if my daughter had needed me, or needed us, I actually couldn't do anything. I couldn't go near her or the grandchildren, we couldn't have them here, we couldn't go to them. And it worked out, but it wasn't the best timing to have all of that treatment going on.

Used a Chinese herbal remedy because he wanted to do something about his lymphoma while his...

In the watchful waiting period someone suggested trying Chinese herbs, and I suppose at that point, in the early stages of living with this illness you kind of grab at anything that you can. So I visited a Chinese herbalist in the town near where we live and explained to them what my diagnosis was. And they were remarkably clear about it and they made lots of pulse checks and physical checks of my glands here and there and then prescribed what looked like a bag of compost basically, and said, 'You have to take'', in fact several bags of compost, you come out with a big plastic bag full of these', which you have to make up into a kind of tea. So you boil up these dried leaves and twigs and strange nuts and bits and pieces, you boil them up then pour them through a sieve, allow it too cool and then drink it. It tastes foul, absolutely foul, and they did actually kind of warn me this, 'This will not taste very pleasant, it will be very bitter'. So we actually took the precaution of having a jar of honey standing by so I could actually put a mouthful of honey, a spoonful of honey into my mouth and do'. 

I did that for, I kept that up for a couple of years probably till the chemotherapy was necessary, towards the end of the watchful waiting period. I don't really know whether it did any good or not, it felt like I was doing something good. My immune system, because obviously lymphoma is a disease of the immune system, my immune system was always described by the specialists as being pretty good, my marrow counts, whatever they are, have always been quite good. So perhaps, and the Chinese herbalist said, 'This will boost your immune system'. One of the odd things was prior to being diagnosed I'd had a few coughs and colds and the usual winter flu's, I've not had a cough, cold, flu, anything like that since becoming unwell and since starting to take the Chinese herbs. I don't take them any more but, you know, it seemed to do something. Maybe it was psychological, I don't know, but I got used to the taste so I could drink it without honey.

What made you decide to try that stuff?

In a word, desperation, I suppose, one will try almost anything at that point. I did a lot of research and reading, and I'd read about the so-called Mexican clinics that people hear about, where they promise wonder treatments using natural remedies. I'd read about some treatment based on apricot seeds, which again claim wonderful results. But at least the Chinese herbal thing was kind of accessible, there was someone in the high street selling them so, 'OK, I'll talk to them', and I gave it a go and it didn't do me any harm. 

Interestingly my haematologist, I told him that I was doing this, he wasn't dismissive, which I kind of thought he might be, and in fact he was quite interested in it and explained that in his mind a lot of very good treatments are still in the world out there that we just haven't discovered yet. And I think to try and explain to me that perhaps it was not bizarre to be drinking dried up leaves and things, but one of the most powerful drugs for breast cancer is made from the leaves of the Yew tree. So science is one way, Chinese medicine the other but, you know, it's a similar process.

So do you think you felt desperate to try and do something because you were not being given any conventional medical treatment?

No it wasn't that, I think I just wanted to do something. I think had I been having conventional treatment from the outset I may have tried it. I think partly it was because if I'd have had the conventional treatment, let's call it that, if I'd have had conventional treatment I may have been reluctant to go with the Chinese because of the risk of possible conflict. And I suppose that’s what made me stop taking it when I went onto chemotherapy. But I think it was just the thought, “Well let’s try anything”, you know, one hears of these things, one hears of miracle cures, one hears of people getting better without anything, so yeah, it was just a way of trying something out.

His first chemotherapy was given as part of a randomised clinical trial comparing a standard...

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 we'd 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 there's 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.

Was warned that treatment might cause impotence but as he doesn't usually feel like sex when he's...

Has having this illness affected the way you feel about your masculinity at all?

No not at all, not at all, I feel fine. It was explained to me that some of the drugs could cause impotence, could make me go off sex, go off, you know, I mean I said, 'Well presumably I'm not going to be feeling very well am I? That's normal isn't it? You know, who feels like sex when they've got flu?' So I just relate it to things like that. So no I feel comfortable with myself.