Interview 13

Age at interview: 45

Age at diagnosis: 45

Brief Outline: Diagnosed with Hodgkin's disease in 2005 after finding lumps in his neck and having repeated episodes of fever. Had completed nine of twelve cycles of chemotherapy.

Background: General Practitioner, separated with two children aged 17 and 14. Ethnic background: White British.

More about me...

One day he realised he couldn't turn his head to look at his clock so felt his neck and found some lumps. Being a doctor he immediately knew the lumps could be caused by something serious. However, he was unable to contact his GP that day and the following day awoke with flu symptoms so was reassured that he probably only had a viral infection. He took a couple of days off work during which time he felt better and the lumps reduced in size although they were still there. 

About three months later he started having repeated episodes of fever that lasted for nine days at a time. After four bouts of this he searched for information on the internet and discovered that his symptoms were consistent with something called Pel Ebstein Fever.

He contacted his GP again who referred him urgently for a consultation with a cancer specialist and got an appointment four days later. The consultant did a variety of tests and said he thought it was a lymphoma. He was sent to an ENT surgeon for removal of one of the lymph nodes from his neck and also had a CT scan. His consultant then confirmed that he had Hodgkin's disease. He was treated with chemotherapy (ABVD) and at the time of interview had completed nine treatments out of twelve. A CT scan had shown that his disease had gone and he planned to return to work after his twelfth treatment.
 

He had fever repeatedly for exactly the same number of days with his lymph nodes swelling and then getting smaller again.

And I lived with these lumps in my neck for a number of weeks, and it was probably about three months later that I started getting these odd fevers. And it would start as a cold does, with a sort of slight sort of shiver, and then you'd get a proper fever and you'd be sort of literally sort of, your teeth would be chattering. And I was munching Paracetamol and Aspirin like it was going out of fashion. And these fevers used to last for about nine days, and it would always be nine days and then they'd go away and then I'd get another one, and my partner said to me, 'This isn't right, you must go and see somebody about this.' And I said 'Well what sort of test are they going to do?' And she said 'Well don't get stroppy with me love, I'm not a doctor but I really think you ought to get this sorted out.' 

Anyway by about the fourth bout of this nine day fever I was composing an email to my infectious diseases consultant to say this is clearly something infectious cos there's lumps in my neck and I keep getting these fevers, and what sort of blood tests do I need to sort out what it is? Anyway I was looking on the Internet and I was looking for relapsing and recurrent fevers and it didn't sound like anything to do with farm animals or foreign travel because I hadn't been anywhere, and then I came across this rather obscure sort of fever call Pel Ebstein Fever, which is precisely what I said' it was a clockwork fever, a timetable that starts with a nine day, or however many days, it depends on the individual, but it's always the same number of days, and it just vanishes at the end of that period to reappear usually about the same distance or a bit longer ahead, and then you get another nine day fever that would then disappear again. And if you have lumps, it said the lumps do get bigger when you've got the fever and they get smaller when you don't. And I had one of those Pauline moments, I just knew what I was reading on the screen was what I had, Pel Ebstein Fever. 

But my particular lymphoma with the Pel Ebstein Fever is actually quite unusual, the consultant I saw said he didn't think he'd seen one certainly in the ten years he'd been working in that unit, it's a rather unusual presentation. 
 

Explains why chemotherapy causes tingling in his toes and why he is willing to put up with it.

But as you get towards the end of treatment, like I am now, some of the side effects which might indicate a need to reassess your treatment to see whether you need something else, and in my case it's tingly toes, which is due to what's called a peripheral neuropathy, which means damage to the small nerves that run down to the edges of your body giving you numbness and tingling, and what have you, that starts progressively in your toes and works up. I've had that the last couple of treatment cycles. But I'm aware that the alternative drug to vinblastine, which is the culprit in this particular case, does have a significant risk of secondary cancer in your sixties and seventies, so I'm more than happy to put up with the tingly toes and I certainly don't want to change horses at this stage. I think the last three treatments I can put up with because actually the tingling does improve in the second week after you have a treatment, so I'm quite happy to put up with that for now.

Describes how he relieves his aching legs and the pain in the arm where the chemotherapy drugs are injected.

Anyway the second week of the treatment cycle you tend to ache a lot, and I think this is because chemotherapy, as well as depriving cancer cells and building materials, also deprives your body of the raw materials it needs to repair itself. So if you mow the lawn or you go for a walk up a hill, then the night after you do it you'll wake up, probably at two in the morning, with tremendously achy legs, and that can be a big problem with sleeping. So I found three ways of combating that. 

First, where you're actually resting on the bed is painful, so if you get a light summer weight duvet with a low tog value, roll it over, double duvet, so you've got it sort of in half, then pop it under the sheet, between your sheet and your mattress, then you'll have enough padding so that where you're actually lying on the bed is quite soft and doesn't actually hurt. So that's the first thing. 

The second thing is if you wake up in the night at about three o'clock, your paracetamol that you take at bedtime, because you know you're going to get this, will wear off after about four hours. So if you have a glass of water and a couple of paracetamols by the side of the bed then you can just slosh them down. And the capsules are the best because they work faster, and then you can get back to bed and back to sleep within about twenty minutes. 

And the third thing, which I found works extremely well, is that you get a hot water bottle, absolutely wonderful, pop a hot water bottle under the bed clothes, not in contact with you but just to actually make a lovely warm sort of igloo from your waist down, and you'll find that the aching is much, much better. And I found that that has revolutionised my sleeping habits, I now get a lot more sleep because everything is warm. 

Now other things that happen with ABVD, something, probably the most nasty side-effect of ABVD is to do with this Harry Potter business about the drugs being kept dark, because the stuff is actually quite caustic and it does actually rot your veins, so you get a nasty sort of ache that goes all the way up your veins from exactly the point where they put the drug into you, about up to your arm pit. And it comes on almost exactly six days after a treatment. Very odd, because if you just tap the vein on your arm after treatment, then you feel nothing, but after about six days the whole things gets inflamed and because the pain is going up into your spinal cord through what's called a sympathetic nervous system, it has a very nasty nagging quality to it and it also tends to propagate down your arm into your fingers if the drip site is too low. So I've learnt over the months that the higher up your arm they put the stuff into the less of your arm is affected by the pain. And it is bad enough to keep you awake, and I've actually laid awake till about four o'clock in the morning due simply because I couldn't get my arm comfortable. 

And again local heat does work, so I recommend a wheat bag for the affected vein. If you get one of these wheat bag things and pop it in the microwave until it's nicely warm but not too scalding, and then you just literally rest this thing over where most of the pain is, because there's usually about six inches that is the most painful part, and then you can sort of drape that on there and the pain sort of melts away after about five minutes and then you can go to sleep. You tend to wake up when you want to turn over, and just replace it somewhere else. And one or two nights I've had to heat the thing up two or three times, but it does actually help because I think that is probably the most debilitating thing, if you can't sleep. Chemotherapy doesn't seem to make you tired, of itself, it just stops you sleeping, which makes you tired, and that can be quite a nuisance. So unless you can sleep in and there isn’t too much noise and things where you are, and you can sleep in during the day, then it is nice to be able to get to sleep during the small hours so you can do more the next day.

Was injecting himself with Granulocyte Colony Stimulating Factor to boost his neutrophils between chemotherapy treatments.

I had blood tests before a treatment to make sure my white count is up to scratch. The first treatment actually dropped my white cell count quite low, low enough for me to have to take antibiotics and anti-fungals to actually stop myself getting seriously ill. And it took another week for my bone marrow to actually recover so they could give me another treatment. And I was getting a bit worried by this because I couldn't afford to be off work for more than six months because that was the insurance cover that I had available to actually pay for my work to be done for me in my absence. 

And so what they're doing now for me is giving me something called granulocyte stimulating factor, which is an injection, it's exactly like having insulin injected, and I'm able to do it myself, being a doctor, but most people I think go down to their practice nurse and have an injection. And this is given at about ten days after treatment so that you can boost the levels of your white blood cells and then check them, make sure that you're over the magic 1.5, which means that they can give you another treatment without sending them dangerously low. And so that's working a treat. I was having three lots and that's sent my white count up to amazing 5.5, so as the stuff is vastly expensive they've cut me down to two lots and that keeps it hovering around the two mark, but so far I'm doing very well.
 

Felt relieved to learn that the best treatments for most lymphomas are now known, so there was no need to debate how to treat Hodgkin lymphoma.

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.
 

A GP's patients had been told he would be off work for several months with a serious illness but he was open with them if they wanted to know more.

Have you told lots of people about your illness?

That's an interesting one. Yes I've been very upfront, certainly with all my colleagues at work. I work in a large health centre, there are eleven other doctors and quite a large support staff, and I've been very open with them as to what this is and where it's coming from. My patients just know that I've got a serious illness and I'm going to be off work for X number of months and I shall be back. I've got two lady GPs doing my work for me, and I'm quite touched by how many people do ask, amongst my patients I have a personal list of about eleven hundred, twelve hundred people and they do frequently ask, I've had cards and good wishes from them and they're sort of looking forward to having me back, even though my two lady locums are doing a terrific job in looking after them. 

But I've been very upfront about it. My partner is a very different personality to me and she says 'Why did you tell all those people?' and, 'I wouldn't have told so many people and been so open'. And I said, 'Well that's just my style.' And I think in a sense if one is looking for support and help when one is in a tight corner then I think it behoves you in a way to keep them as informed as you possibly can. So as soon as my suspicions were confirmed that there was, you know, it was lymphoma, then obviously everybody knew the score as far as my partners were concerned, and once the treatment was finalised in terms of duration and what have you, then the patients were informed. But not specifically about lymphoma. The ones that I've met either in the street - because one meets people in the street - or at concerts or outdoor things, I'm pretty sort of upfront about it, whereas my partner is much more cagey about her own sort of health issues and what have you and she's quite astonished at how open I've been. But that's just my style, that's just me.

So have you told those patients who've asked, have you told them exactly what you've got?

I have, yes, and as things have progressed, and as I've actually had a normal CT scan, in the more recent contacts I've been able to be more positive about it.

So will you tell them when you go back to work, will you tell patients that ask, 'Where have you been doctor for the last six months?'

Yes, yes I shall tell them exactly where I've been. I mean I do go into work, and I do bump into them in the waiting room, so they all know I've got something significant, seriously ill, and they ask me how I am and things and, 'Oh you're still looking well doctor, and you've still got your hair doctor', and all that sort of thing, the ones that know.
 

Warns that information on the internet can be confusing, weird and wacky, and recommends sticking to reputable sites.

I think it's quite easy to confuse people and so everyone has a slightly different approach to how they get information which is highly pertinent to them, if they've got something serious like lymphoma.

And my own style, as it were, is to actually seek advice from one source, because I think if you go onto the Internet the Cancerbackup site is excellent and there's one called DIPEx, which is where you are now, and there are all sorts of things on the American websites where it's all jumbled up, so you'll get some excellent stuff from the sort of national cancer agency which will tell you all about the American treatments for cancers, and there is some wacky stuff about snake oil basically, and it's all jumbled up. So if you trawl too much on the Internet, A) it'll scare the pants off you because there'll be lots of stuff from people that are worse than you are, have different prognostic factors, you know, things that means that you're likely to have a worse time of it and your chances of survival are lower. 

And also you've got all these various things which are going to confuse you because, you know, opinions do differ, and it was my worry that if I went into this in too much depth I'd be saying, 'Well why do I need bleomycin, would something else do?' And we'd end up having a discussion about some sort of tailored treatment which may not have the good results that ABVD as a package has, because it's extremely well proven, and it gives me great confidence to know how many people have had it over the years, and coped with it and survived it. Some people even manage to work part-time when they're actually having chemotherapy of this sort.