Interview 23

Age at interview: 41

Age at diagnosis: 28

Brief Outline: Diagnosed with Hodgkin's disease in 1992 after finding a lump in his armpit. Treated with surgery and radiotherapy. Recurrence treated with chemotherapy and autologous and allogenic stem cell transplants. In remission.

Background: Professional pilot, married with one child aged 7. Ethnic background: White English.

More about me...

One day while working on board ship for the Navy, he found a lump under his arm while showering. When it was still there a couple of days later he showed it to the ship's doctor. Once on shore he visited a doctor at the Naval base who organised tests. A biopsy showed that he had Hodgkin's lymphoma stage 1A. He was immediately grounded from flying and started treatment. The lump was removed surgically followed by radiotherapy to his armpit, chest and neck.

After being in remission for 8 years his disease returned. This time his symptoms were weight loss, tiredness and night sweats as well as visual disorientation when flying. The initial assessment was non-Hodgkin's lymphoma and he was started on chemotherapy for that (CHOP), but subsequently it was reassessed as Hodgkin's lymphoma and he was changed to a different type of chemotherapy. Unfortunately the disease did not respond so he went on to have an autologous stem cell transplant which put him into remission for about 18 months before relapsing again. This time he was given an allogenic transplant using his sister as donor. He has been in remission ever since.
 

A pilot said the first clue of his Hodgkin relapse was visual disorientation when flying,...

And the treatment was successful at the time, I was in remission, I was in remission for eight years, and very disappointingly, and also quite devastatingly, I relapsed in August, yeah August 2000. Stage 4b this time, absolutely everywhere, and that was a massive shock. It was, I was married at this stage, I was out of the military and in commercial aviation so my life had moved on quite considerably since that time and also the disease had really ripped into me and I hadn't really realised it but when I look back at the symptoms it all fell into place when I was diagnosed. Subtle things like losing weight that I thought, 'Well I'm just getting fit', because I was doing a lot of exercise at the time, but what it was was actually I was eating like a Trojan and it was, nothing was, I wasn't putting weight on, it was quite a, I don't know, it was a subtle thing initially. And then I realised that I was, I wasn't feeling well, I was feeling tired, I was feeling listless, I also started to get the occasional night sweat. And when I pieced everything together in a big pot, so to speak, it then pointed at the disease again.

But it took, I was actually flying at the time when I thought I'd better go and see the doctor. I was descending into an airfield in Turkey and we were going through cloud, the lights were flashing against the cloud as we descend through the cloud, and I got disorientated and in nearly twenty years of, well twenty years of flying I'd never been disorientated in my life, and, not in the way that I was experiencing anyway. So it was a bit disconcerting. I spoke to the other pilot and told him that I was experiencing this disorientation and it was fine, it wasn't dangerous, I just felt slightly off. So I just said, 'Well I'm working through it, I'm still on instruments and everything's fine. 

We descended, we landed, no problem whatsoever. Now if it had got worse I would've just handed control over but I didn't think anything much of it. I had a little bit of stomach pain at the time and I just thought, you know, 'It could be airline food or something'. But that was starting to hurt and when I got back I went into the simulator for another bit of training and then I got similar disorientation again with some of the lights in the simulator, and the different visual cues that I had, I got disorientated again, I felt funny, I felt like I was getting a sort of fluey type feeling as well, and just everything I thought, all the other things combined I just thought, 'Oh well I'll go and see the doctor and see what's going on'. And I had a little nagging doubt in my mind whether this had come back again.

So then that was it. I went to the doctor, he actually found a lump in my shoulder area which I hadn't even noticed. And they whipped that out, did a biopsy and it was the disease again. Also the scan showed it everywhere, absolutely everywhere' it was in my liver and my spleen, not in my lungs that time, subsequently I did discover it in my lungs, but all through my lymph nodes throughout the whole, everywhere above and below the diaphragm, so it was quite extensive disease. 
 

His sister donated stem cells for an allogenic transplant and the G-CSF injections made her bones...

So did your sister have to go through the same procedure to get hers out?

Yeah but it was much more difficult for her. She absolutely hates needles and she had to be sedated quite heavily to do it. And I was just sitting next to her holding her and holding her hand. But no she didn't enjoy that at all. And it was particularly painful having the growth factor for her. I suppose, and I don't know if this was a fact or not, but because I was having chemotherapy and my immune system was kicked back and the growth factor that they gave me to produce the cells in your bone marrow, to fight disease, because I was, if you like, depleted anyway when they were giving me the growth factor I was probably just producing an increased and probably more normal amount of cells. 

But for my sister who had a functioning immune system, to then have more blood cells, and disease-fighting cells being produced then she had a lot of bone pain. She felt like, she said she felt like her bones were bursting and so' I think the sort of history of people going in with the cork screw to take out bone marrow into your hip years ago, that was, she wasn't keen on that old regime that used to be there. And I said, 'Well it's not like that, we just take a bit of blood this time.' But the changes, which are the injection to give you the sort of growth of disease-fighting cells actually was very painful for her. She didn't, and you know, she was in real trouble with it in terms of felt sick and also because of the actual physical pain. So that poor girl went through it for me but I'm very grateful.

Is she your only sibling?

Yeah.

How did she feel about being volunteered as it were?

She was nervous but really keen to do it, nervous but very keen. She knew it was really one of my last opportunities so there was never any, from her point of view never any, anything really to consider, she was going to do it but she really was nervous about the process. But she was very, very brave.

So once they've taken her stem cells out on that machine does the bone pain stop quite quickly, I mean how long does that growth factor stuff stay in your blood stream?

It took her, I think it took her a couple of weeks actually to stop, she'd stopped the injections to promote the growth of the cells but just the day before, I can't remember how many injections she had but the, I think it took a couple of weeks actually, and actually all told it was probably about a month before she started feeling OK, properly OK. So yeah.

Didn't like his doctor calling his high dose therapy 'salvage chemotherapy' and explains why he...

All of the treatments were intravenous. I had them through needles in the arm, but it wasn't, I didn't have a Hickman line until I started having the salvage, what they called salvage chemotherapy. What a horrendous name that is. I can remember them saying that' 'salvage chemotherapy'. I had salvage chemotherapy prior to having my stem cell autograft, and in fact also prior to my allogenic transplant as well. I remember this, what a horrendous name, it sounds like, you know, they're digging you out from somewhere, salvaging you, but it was very strong chemotherapy just prior to going into having my autografts and the idea was to sort of try and give you a fighting chance of having no disease there prior to having the transplant. 

Do you know why they chose to do the low intensity one that time?

Yes. The stem cell, because I'd had the stem cell autograft with the high dose chemotherapy, the BEAM, I was told that if I had gone for the normal allogenic transplant they would give, which I don't know if they would have still given me radiotherapy with it, but they were just talking about giving me the ordinary allogenic transplant with high dose chemotherapy again, they said that if I'd gone for the normal allogenic transplant then there was an eighty percent chance of mortality, of dying. And I thought, 'Crikey, that's not very good odds, eighty percent'. So they said there is this option to have this low intensity, it's relatively new, and basically what it relies on is the fact that they give you a little bit of chemotherapy to sort of cut back a bit of the disease, but they rely on the fact that the donor's bone marrow, when given to you in stem cell form, would engraft, and actually because they're a healthy person that fights disease off anyway, it would recognise in my system any alien components and fight it off, fight the cancer itself, and if there was anything there, and so it will actually use the new immune system to fight the disease. 

And that's the whole premise of, at least I believe, that's what I was told, and which seemed like a great idea, I thought, 'Fantastic'. And they said, 'There's a good survivability rate at the moment, we don't have much data on it,' they said 'because it's fairly new and we'd be studying you anyway to build data for future statistics.' But they said 'It's nothing like the sort of risk of having the full blown allogenic transplant of old.' This new one has worked great so far, touch wood.

Saw his wife most days when in hospital for his stem cell transplants and occasional visits from...

How long were you in hospital at that time?

About, I can't say exactly, it was about ten weeks.

Really?

That particular one there.

And how often was your wife able to visit?

At the very least it was, at times it was almost every day for various stages, but she was also working, she was working as well. But her work had been very helpful to give her time off, but also our daughter, she was looking after our daughter. We live on the south coast of England, and family are up near the hospitals and that's quite a bit distance to travel. So it was awkward with regard to sort of child care and... But she was seeing me at least two or three times a week at the very least, and sometimes, like I said, she was there every day. So depending on how ill or how much I needed that help. 

And your daughter, did she come and visit you?

Yeah just a few times. I think what we tried to do, because, particularly in the early stages, I saw more of her in the early stages, later when I was prone to infection, not so much because it was just the fewer people that I saw the least chance of catching a bug really. But that was fine, it was good, it was actually quite good to see her just occasionally because at times when I was particularly low, my wife was very clever actually, she, when she knew I was particularly low during all stages of my treatment she'd just bring my daughter along. And I remember the different stages she would just let her run into the room first just a few seconds before, you know, a handful of seconds before she came through, and when I was feeling like, at times when I was thinking, 'Crikey I don't want to carry on with this treatment', she would, my little girl would come through, a little beaming smile, not a care in the world, fantastic, came straight through the door and I was just saying, 'Keep giving it', in my mind I just kept deciding, 'Just keep giving me the drugs, it's only a bit of unpleasantness, just keep coming, if it fixes me, great'.

Banked his sperm before starting treatment that made him permanently infertile; 13 years later he...

Yes, so you said before you embarked on the high dose chemotherapy, I think, for the first transplant that you were offered sperm storage, and you did that in case it knocked your fertility?

No, the start of all the treatment in August 2000, I'

Oh OK, before the CHOP it was?

Yes, before I had any treatment I went to do that, that's when I did that, yes.

OK so do you know, have you been told for a fact that your fertility has been damaged?

Yes we went back, I've been back since, you know, and I'm, yeah, firing blanks.

Have you put it to the test?

Yeah I went back to the hospital and they took a sample and basically checked, and yeah I'm not functioning in that area.

How does than make you feel?

It actually doesn't bother me because I knew it was, in fact I kind of expected it because I thought, 'Well I've had a lot of chemotherapy', I had probably a year's worth of all the different packages of chemotherapy and then the two transplants, so I would have been really surprised actually if I'd been working. And I thought, 'I'm OK', because I managed to do something about it before I had the treatment. If I hadn't had that then yeah I'd be, right now I'd be absolutely devastated because we always planned having a bigger family. But our little girl is a blessing because we had her, and then this problem came along. But we're now looking at sort of broadening the family. 

You say they'll give you some fertility treatment?

Yes.

What does that involve?

I think it's called, it's not IVF it's IUF, I think, intra uterine fertilisation I think it is, I think that's what it's called. So it's a case of using my sperm and my wife who functions normally, and that's it. So it's relatively simplistic because we're not a, if you like, a family with a history of fertility problems, so that's hopefully that's where we'll be at really. And it's not such a sort of painful and uncertain process as much as it could be.

His consultant was insensitive in making light of his planned stem cell transplant which for him...

I'll give you a classic, I'll give you a classic example. During my stem cell autograft, at the start of that, came into hospital, so I'm now going in for this big, for me a huge event, potentially life changing event, either one way or the other possibly. My wife was with me and a particular senior doctor came in, spoke to me, said 'Yeah OK, right, OK, bit of high dose chemotherapy, bit of BEAM, bit of this, really give you a good blast with that and then we'll give you your stem cells back that we harvested the other month, and that's it, pretty elementary really, straight forward, straight down, you know, in, out, that's it, great.' 

And my, it was all my wife could do to stop from crying, all I could do to hold myself back from punching his lights out, and I just, I found it absolutely incredible, even the doctors around him, the junior doctors around this guy were looking on and were open mouthed at his approach and style and manner with us. And I thought, 'Right, OK elementary, yeah? OK come and sit in the seat I'm in now, I'll stand there and I'll say just what you said to me'. It's a bit like when I'm flying an aircraft if I was to say, 'Yeah OK you can jump in this seat and land the aircraft, make sure you put the undercarriage down and just make sure we end up on the runway and don't come off the end', you know, and I just found it absolutely incredible. 

I lost all respect for that man in terms of being human but I trusted his clinical judgement because he obviously knows what he's talking about, but they had no, he had no place being, talking to me, and I would have happily had a junior doctor sit down for five minutes longer and just explain something, and that would have been fine, exactly the same thing, and I'm sure he would've done it with a lot more sympathy and empathy. And I lost, he lost my respect, pretty sad, pretty sad thing to have to say. And I was very disappointed for the people around him professionally, and yeah there's a few changes needs to happen in the medical profession.

Was at first told that the lymphoma would end his flying career, but his employer helped him to...

Do you want to tell me a bit about the impact this illness has had on your career and how your employer has behaved towards you?

OK. I think the disease itself wouldn't have stopped me, even with all the treatment, wouldn't have stopped me being a lawyer, accountant, possibly even a doctor I suppose, because in between treatments and when I felt better I could have gone back to work. Being a pilot' completely different ball game. As soon as I was diagnosed, 'That's it, forget it, you're not flying any more'. And they said, when I was in the military they said ,'Well that's it, end of your flying career'.

They had a case in the Navy where the chap actually had died walking out to an aircraft, he'd collapsed and then subsequently died and he was diagnosed with having Lymphoma. So they had a precedent there saying, 'Right, if anybody with Lymphoma, that's it, the end of the flying career', sort of thing. 

But I then subsequently did some research, I found a paper, I can't remember where it was now but I found some, it was actually an aviation journal, a medical journal, and it said that if successfully treated and at early stages then pilots could return to flying. I think subsequent papers that exist now with the Civil Aviation Authority say as long as various protocols and treatments are done then you can return to flying if you're successfully treated. It takes some time and that's why it's taken such a long time now for me, I've had a good old three and a half, nearly four years of treatment, and then two years subsequently I'm now back in the seat of an aircraft flying again, but I had to cross some huge hurdles. And professionally because of that big, you know, over half a decade I've lost in flying, that's been, if you're working for any company and you lost six years you'd probably, you've certainly lost a promotion prospect, you've certainly lost touch with what the new techniques are, the new things are, and so getting back into it has been a struggle. 

But the company has been fantastic, absolutely fantastic, it wouldn't have happened anywhere else. They said, basically, 'Get yourself fit and you've got a job', and that really helped my recovery actually. One of the things in my mind was the financial aspects of it all was that, 'I can't fly, I'm not being paid, crikey, what do I do? You know, what do I do? Do I retrain, do I do whatever?' And so er it was, I mean a huge problem first off. 

His friends reacted to his illness in different ways: some didn't contact him while a few were...

What about friends and colleagues?

In what respect?

I mean did they, perhaps visiting you in hospital was difficult with the infection risk, but did they kind of keep in touch with emails and cards and things?

No, I see, good point. Yeah I mean I think you're touching on something that I think is quite a big issue with things like cancer. There are those people that can deal with it and those people that can't. And a lot of my friends just, I don't know, they sort of, we didn't hear from. Whether that was because they just thought, 'Well don't want to contact him because I wonder if he's getting worse or he's getting better' or, I don't know, I think there was a lot of that, just that sort of a nervous and uncertainty aspect of it. Then there were those who were just head in the sand and actually couldn't deal with it, some of my family were like that. And there were those that kept in touch and those that just said, 'Yeah hi, I'm coming up'. Went out, sort of thing so, 'Come and say hello'. And it's quite a defining time actually, you realise exactly who is around, who really does genuinely want to sort of be there to help out, and yeah there's a, you can count them on one hand, there's a handful of people that were particularly strong and helpful. So yeah I think that's normal in life isn't it, that's the experiences you have.