Interview 14

Age at interview: 48

Age at diagnosis: 45

Brief Outline: Diagnosed with Hodgkin's Lymphoma in 2003 following tiredness and weight loss. Treated with various chemotherapies. Consistently low blood cell counts led to a splenectomy, resulting in remission.

Background: Photographer/Website Manager, single, no children. Ethnic background: mixed race (Pakistani/Austrian).

More about me...

She felt tired and decided to take a year off work. While on a two month trip she found she had lost a lot of weight very rapidly. On her return she visited her GP who did blood tests and referred her to a liver specialist. An ultrasound scan revealed nodules in her abdomen. Lymphoma was suspected so she was referred to a haematologist. She had various tests done as an inpatient, during which time she quit smoking in order to help her body recover. After some inconclusive test results she was eventually diagnosed with stage 4 Hodgkin's lymphoma.

She started on ABVD chemotherapy administered through a PICC line. She had a allergic reaction to the first treatment so from then on was given additional medication to prevent this recurring. She also contracted her first infection, which nearly caused her death. After this her doctors decided to give her a more aggressive treatment. She had two courses of ESHAP administered through a central line and contracted infections when neutropenic after both. They then tried to extract stem cells from her with the intention of giving her an autologous transplant but, despite taking GCSF to stimulate stem cell production, insufficient cells were harvested. She was then put on mini-BEAM chemotherapy. 

Throughout her various chemotherapies her red and white blood cell counts were consistently low. The doctors considered that her spleen might be responsible for this and planned to remove it. The operation was postponed once because they felt her blood counts were dangerously low. Worried that maybe the problem was the cancer, bone marrow samples were taken. Only when the second came back clear of Hodgkin's did the operation go ahead. When pathology results on the spleen came back clear too, the last course of mini-BEAM was cancelled and she has been in remission ever since.

She praises the doctors and nurses who looked after her.

What do you think in general of all the staff that looked after you?

They were fab. Different people, I mean again it's sort of your, one is in treatment long enough to actually develop relationships. The consultant was a dream, the nurses who were also pretty consistently there through it all were fabulous, they knew their stuff. I mean it's a very special person who chooses to become a cancer nurse and learns how to do the chemotherapy business. And the registrars kept changing because of course they rotate on and off and certainly some of them I had better relationships with than others. But having said that, whenever I'm in and if any of them were sort of floating around the hospital we do all still say hello, which is kind of nice that they haven't forgotten me. 

But I particularly got, I got very close to the registrar I had in my last three months of treatment, largely because they were the most difficult to get through, so I think we, I was very dependent on her. But she, and also she knew her stuff, my God she knew her stuff. I mean when the consultations were happening and she was making suggestions, and in fact I realised that there's a back room team because also they have all these meetings that go on about the patients which you're not at. But she actually was sort of querying the consultant, so I actually sort of, there was something about, and the way he listened to her and sort of realised and went with her suggestions every now and then, over the big decisions, it wasn't a suggestion of something small, it was big decision time. And I just thought, 'This is brilliant, this is such a huge team that's working'. So I just think all power to them, you've got this ghastly bureaucracy of the NHS but my God they still manage to do really well within it.
 

Realised after diagnosis that the tiredness that made her take a year off work had been the first symptom of her lymphoma.

Well I suppose the beginning has got to be before, you know, there's a period that one knows with hindsight was the signal that something was afoot, and for me it started originally, I guess, sort of quite a long time before diagnosis where I was, thought I was just fed up with work, and I thought it was work that was making me tired and listless and all the rest of it. And so I rather foolishly, as it turns out, because I could have got, been a lot more financially stable in illness, but I asked for a sabbatical and I wasn't given one so I just said, 'Sod it, I need the time out' and I took a year off work thinking, 'Well I'll quit my job' and thinking that I'd get something else a year later. 

And so I set off, I think I was, I quit work just before Christmas in 2002 and went off travelling, went off to New Zealand and Australia. And one of the weird things when you're travelling is you never look at yourself in a mirror, I mean I sort of travel like a back packer really so in hostels you never look in mirrors, you're always wearing sort of slightly elasticated comfortable clothing, so I didn't notice I was losing a frightening amount of weight. So I travelled all round New Zealand, got to Australia, stayed with friends and they were sort of looking at me a little bit strangely. And I guess round about sort of early March 2003 I realised that something was a bit wrong and it was just from the weight loss. I had no lumps or bumps or anything so there was nothing to sort of give me a clue as to what was going on. 

And I only had a couple of weeks left of the holiday and I thought, 'Well there's no point in going to a doctor here because they'll run a load of tests and send me home and they'll run a load more tests', so I finished my trip, came home just before Easter. And by then I'd sort of realised how much weight I really had lost, and I'd dropped something like, I think it sort of, I'm still trying to think of how weights work out, so I think I lost something like 20 kilos in about six weeks. I mean I really, and I couldn't sit, you know I sort of was so skinny I had to have pillows put under my bum sitting on hard chairs and everything. 
 

The chemotherapy regimen ESHAP affected her mind and made the whole world seem an ugly place.

So to start off with I had to take the lovely ESHAP for two courses, which is to my mind the nastiest chemo I had. I had three types of chemo in my treatment, this middle one I hated, I really hated the way ESHAP made me feel. No it didn't make me feel sick, because I continued to eat through it, but it just, I don't know, it just sort of just made everything feel awful, it made the whole world seem an ugly place. And so I found a lot that not only was I physically affected by the chemo but I was very aware of the things it did to my mind, and that there were quite a lot of personality weirdnesses going on, which is something I don't think anybody tells you about. I think we're all told about, warned about the physical side effects, but nobody actually says, 'It's not you', that actually some very weird mental stuff happens. You're being poisoned and I think that's something we all forget about because we're concentrating on how chemotherapy is going to cure it, but actually we're being cured by being poisoned, and of course we hallucinate in the process. 

Was terrified by an allergic reaction to her first dose of bleomycin so an antihistamine was added to later treatments.

So we had the first, so all the bits and pieces and everything was attached and you'd got your needles with the orange stuff and the drip bag with the other stuff, and so all the paraphernalia happened and I had it all pumped in, and just as we were about to leave I went into my first hyper. And the sugars and the shakes and all the rest of it started and I was having a really bad reaction to the bleomycin, as it turned out. But of course one didn't know, it was absolutely terrifying, so stuff was pumped into me but couldn't be pumped into me because, crazily, a doctor has to be present for them to, so the nurses knew what to do but they couldn't do it until there was a doctor to sign off on it, and there happened to be nobody in the unit at the time. It was really scary and it wasn't helped by the registrar coming along and saying, 'Oh I've never seen than happen before'. Great! You know, here I am, another perfect learning opportunity for everybody. 

And it's also in that period, it is such a scary time because being the first diagnosis you just don't know, you know you've got this terrible disease and you know you've got a disease that can kill you. So everything that happens is terrifying, anything that goes slightly wrong, slightly deviates from what's being predicted, scares you stupid. I mean I think further down the line you work out that no two patients are the same and that medicine is not an exact science and it's all totally unpredictable and you've just got to roll with the punches. But when the first punch hits you it's not easy. 

So after that little drama we knew what to do, so after that when I was having my treatment we knew that I had to have, I guess, some sort of anti-histamine to stop me going into the allergic reaction, so there was an extra needle to be counted before treatment commenced every fortnight.
 

Hated having a central line hanging out of her 'boob' and had difficulties finding a bra to protect it and support its weight.

Oh and the other thing I didn't like about ESHAP was that my PICC line had gone and I'd had to have a central line put in. And strangely I didn't find hair loss an issue, I found the central line was my big body image issue, I hated having a tube hanging out of my boob and I never got used to it. I was just, I was almost, and I think the worst thing for me was sort of I felt very vulnerable because it was so exposed and it was sort of long and dangly and I had to, I mean I'm a flat-chested woman, I had to start wearing bras for the first time in my life just to hold this tube in, which the bra saleswoman at Marks and Sparks didn't like that because she said, 'Oh no we don't like fitting you for bras when you're already being treated,' sort of thing. I think [they're] mostly used to women with breast cancer. And I was going, 'Well I am being treated and I need the bra now please because what do you want me to do, walk around in agony for the next however long it is with no support for this tube?' 

So I sort of found that really difficult to deal with. As somebody who sort of thought she was being the caring person because she understood breast cancer but didn't really understand the issues of central lines and the fact that, yes, so I think I had to say it was totally my own responsibility that I was going in to a changing room to try on a bra. And I guess when you're trying to do the normal things through treatment and you're kind of knocked back every now and then, and that kind of upset me. 
 

Her autologous stem cell transplant was abandoned when not enough cells were harvested, and an allogenic transplant was out of the question.

So the two sessions of ESHAP happened with all the excitement, and then it was time to try and get my stem cells out. Because I am an only child and because I am of mixed race parentage there was never going to be a donor for me. The mixed race meant that Anthony Nolan [Trust] were never going to find anybody, and the only child meant there was no one in the family. So it was always talk about it being my own stem cells that were going to get put back in. 

But then we found that the problem with my lack, inability to regenerate blood starts kicking in so I had the old GCSF injections and we tried to prime me and build up, basically get huge amount of white blood cells going for them to be able to get some of them out. And it was all looking good on one day and then the day before we were due to actually go in and attach, hook me up to the machines, my counts, having been doing that, suddenly went ferdoink. And then some sort of argy bargy was going on. But anyway basically I ended up being hooked up to the machines anyway. 

I think things were felt to be getting desperate so I was hooked up to the machines and because there weren't many spare blood cells floating around, I hadn't really made a lot of stem cells, but there were one or two floating around, the nurses were trying to manually sort of adjust the level, there's something complicated goes on with the levels in the machines and basically if you've got enough going on in the band then they can just leave the machine to do it. But because of the band of collectable blood cells for me was about that thin I had a nurse jiggling it every thirty seconds. And it's a long process. So for the nurse to be desperately trying to extract what she could. And the machines are pretty grim to be hooked up to anyway, it's a sort of, it's painful, you can't move, all the rest of it. Anyway it didn't work, to cut a long story short it didn't work at all. 

So that was a worrying thing in itself. So anyway so back to another meeting with the medical staff. 

They never put your stem cells back in either?

Well they didn't take enough to. 

Right.

Basically they didn't have, they didn't manage to harvest enough to do that procedure, so they had to abandon, that was one of our blind alleys really, of what was expected to be, you know, this is what we do in these cases didn't quite work, so they had to do some rapid thinking on their feet and do a quick U turn and go somewhere else. 
 

Counselling when her treatment finished helped her to deal with her feelings about the illness and the shock of no longer needing to go to the hospital.

I think you mentioned to me earlier that you had some counselling, is that right?

Yes, oh yes. Well I was operating on a if it's free I'll have it as well, so at the Cancer Information Centre they run a self-referral counselling service. So in fact I tried to start having some counselling when I was still in treatment but because of my skill at having infections and needing to rush in for blood products realised it was impossible to timetable regular meetings. So we then sort of called it off and I had my six free sessions immediately after treatment. And I found that hugely beneficial. Again just sort of because there's all sorts of nasty stuff that you feel that you, that somehow the safe environment to let it all hang out and admit certain truths about oneself, counselling is to me a marvellous thing but as you can tell I like to talk, so talking cure works for me. 

But I certainly think that it's a shame it's not more readily available, I mean it is available if you want it but to a limited extent, just, you know, it's the old chestnut, lack of resources. But I certainly found that, well it did particularly for me because of the time I went for the counselling, it helped me formulate a strategy for what would happen after, what would happen in that period after treatment. Because there is that terrible limbo, I think this is again back to the support group, I think actually where a support group can be really helpful is that limbo land you go into when they say, 'Well we've got no more treatment to give you. Bye'. And you go, 'What?' Especially because I'd been going in five days a week, it was sort of like, that was bereavement. I mean never mind the shock of being told you had cancer, the shock of being told you didn't need treatment any more was also pretty big. 

And suddenly I realised that my day-to-day life didn't exist any more, I just didn't know what to do with myself. And of course because I was still very tired, I mean I actually think that it took me two years, I only feel that I'm now beginning to get energy levels back to do anything, I actually really think it's taken two years to recover from treatment. What do you do with yourself in that time? There's only so many episodes of Law and Order you can watch really.
 

Can't imagine forming a close relationship after going through such a major crisis alone; feels unattractive and associates her body with illness not sexual pleasure.

Has it affected the way you feel about your femininity at all?

Yes.

In what way?

What femininity? I mean in a glib kind of way. Yes very much. I think what happened is because my body became a site of treatment, so obviously, and I was on my own when I was diagnosed, I mean it's just one of these coincidences that happens in life, I was not in a relationship when I was diagnosed. So I think one of the things that's happened is that I've been through this kind of major experience on my own so I find it very difficult to conceive of forming a close relationship with somebody now. It's something I need to think about really, I'll get a bit lonely at some point. 

And my sex drive hasn't come back at all. And I think because in treatment your, the body image, I mean I was like a borg, I had a tube hanging out of me and I didn't find my body attractive and I had no sex drive. And now I still think of my body in terms of illness not in terms of a physical relationship and closeness with somebody else. It's kind of, because I go to the gym, I do yoga, I do all these things, but it's all to do with avoiding disease. And I think that is a fairly basic thing that I haven't, this is the first time I'm thinking about it actually. I don't think I've asked myself this question recently. But I don't think of my body as a site of sexual pleasure at all. There you go.
 

Used the library at the Maggie's Centre and looked up her proposed treatments on the internet - but some of her effort was wasted when her treatment plan changed.

I'm an information junky, yes. They were very good at giving me sort of some basic information at the hospital and then again what is now the Maggie's Centre has a very good library so I went trotting off there and got a few books out because again I sort of, I think it was the days before broadband so I used books more than I do now. And that was nice because they had a library and you could take whatever you liked out so I immediately grabbed all the books on food and everything and used the internet a lot. I think actually one of the things I did use my critical illness cover for was to get broadband early. I also used it to buy a wide-screen television and a nice leather sofa because I knew I'd be spending a lot of time watching TV lying on a sofa. 

And so the internet was a huge source of information for me and I think if the DIPEx site had had this section I would have been watching it avidly. There is a lot of information out there if you want to find it. I mean there are, I think there are some sites that are particularly accessible but I even got to the extent of I was reading journals, you know, medical journal papers and research papers and, well I wasn't reading the whole paper but they usually have a nice little summary at the beginning that tells you basically what the research has found out, so you don't need to read, understand anything because the summary two sentences are written in pretty plain English. 

But I think one of the great things is again we can deal with it in the way we want, the information is there if you need it and if you don't want to hear it it's not thrust at you. I mean I keep thinking it would be useful to have a sort of slightly more specific collection of web addresses and page addresses that we keep, actually it's one of the things that we as a support group think of doing is actually making the list of the sites that we used and which pages within those sites that we used, accessible to people. We may get around to it.

I mean the thing that used to really irritate was when we were doing the chopping and changing of treatment, because there was actually some talk of me having some other treatment at some point, and I went off and researched it, because the first thing I used to, you know, write down what I was going to be given, come straight home and look it up on the internet.