Interview 40

Age at interview: 47

Age at diagnosis: 47

Brief Outline:

Mantle Cell non-Hodgkin's lymphoma diagnosed in 2006 after having stomach cramps, which may or may not have been related. Having chemotherapy and may face an autologous stem cell transplant in the future.

Background:

Musician, single, no children. Ethnic background: White British.

More about me...

She experienced stomach cramps while on holiday abroad and went to her GP on her return. Blood tests were done which showed a proliferation of lymphocytes. Her spleen was enlarged so she was originally diagnosed has having Splenic Marginal Zone lymphoma and started on a course of fludarabine chemotherapy tablets. Her immune system didn't recover very well from the first dose so she had to inject herself with granulocyte colony stimuating factor (GCSF) to boost it but this caused her legs to swell. She also developed a skin rash as a side effect of one of the accompanying drugs that prevents gout, so that was stopped and she has to drink lots of fluid instead.

After testing her bone marrow the specialists changed their mind about the diagnosis and said it could be Chronic Lymphocytic Leukaemia, but finally decided it was Mantle Cell non-Hodgkin's lymphoma. Her treatment was changed to cyclophosphamide and fludarabine tablets with intravenous rituximab. She has had three sessions so far and has worked throughout. She is unsure whether she will need any more treatment; the possiblity of an autologous stem cell transplant has been suggested.

She is unsure as to whether or not her initial gut symptoms were associated with the lymphoma as they had gone away by the time she started treatment, although they recurred briefly during it.
 

Had few side effects from chemotherapy and could plan her work around treatments.

But I have carried on working all the way through. I'm incredibly lucky with my work that it's flexible, it's more vocational than just a job. And there are lots of times when I'll be working through weekends or late evening, and then if I want a day off, like today, or yesterday when I had the treatment, that's not a problem. They're also, the ones who know, they've been very supportive and very understanding. And I haven't really felt any need to take time off work. I think I have been relatively lucky. I do get quite a bit of nausea, not very bad most of the time. I know the next two days will probably be quite bad, but most of the time it's just sort of a low level thing, which also I think is because the Mantle Cell Lymphoma often, and chemotherapy generally often, in general, often affect the bowels and all the gastro stuff. 

But on the whole I've not been too bad so I've been able to carry on working. I've still got my hair, which is why I haven't had to tell anyone, although they've been trying to persuade me to have a wig fitting, so I think they're reckoning it will go. It definitely would with a bone marrow transplant but in this weather I'm not too fussed about that.
 

Described how different doctors took bone marrow biopsies with her lying in different positions, which affected what she could see of the procedure.

And the idea is' I've had two sessions, I don't know how much detail you want, but twice I've had the bone marrow taken out and a bit of bone as well, by two different consultants because the first one did go on leave [the job], which was also fascinating because they did it different ways. And the most' the thing that has nothing to do with how it felt at all, was that the' that one way of doing is where you lie on your side, curled up, and everything's done behind you so you can't see a thing. But the other way of doing it is where you're actually lying on your front, which means that you can see everything that's going on at the side, which is, if you've got a sort of' if you're a bit squeamish like I'm afraid I still am, despite all the blood that I'm having taken and stuff, is not very nice to see all these bits of bone marrow being squished out onto pieces of glass. 

You said you had a bone marrow sample taken twice?

Yes.

By different doctors?

Yes, yeah.

And done differently. Was it painful at all?

Not as much as it's made out to be. I think when I first heard about it and read about it, people said it was going to be this awful thing. But in fact, I mean, particularly the first time I had it done, she was quite amazing. I often wish that they didn't explain everything because you sort of, then the anticipation is worse than, than it actually is, which is maybe why they explain it. But she was wonderful and put loads and loads of anaesthetic in and the moment it started hurting when she actually did the bone, took the bone out, trephine I think it's called, then she stopped and she had enough anyway. But the, no, neither time is it really painful. It's, if it is, it's momentary and thank goodness you don't remember pain. 

Is it sore afterwards when the anaesthetic wears off?

No. No, not at all.

Looked up her blood test results on the internet and found she was seriously ill. Her doctors gave her two different diagnoses before the definitive one of mantle cell lymphoma.

When I went it was something like December 23rd, so it was right on the brink of being Christmas. The doctor did blood tests. I was already getting a bit better by then, but she did the blood tests. And as soon as the Christmas holiday was over I got a phone call asking me to make an appointment to go in. And she very kindly gave me all the results of the blood tests and at the bottom - I can't remember exactly what it said - but it was, basically it said that there was a proliferation of lymphocytes many of which had villous features. And of course I went on the internet immediately and realised that that meant something like leukaemia or AIDS or I think one of Hepatisises. So I already had a good idea. 

She'd sent me to Haematology at the hospital to have the whole thing followed up. So I went to to hospital finally. I already had an idea of what was going on. And I suppose the most annoying thing about it after that is, because the lymphoma I've got is relatively rare and not easy to diagnose - it's a Mantle Cell non-Hodgkin's lymphoma - it was nearly three months before they finally came to that conclusion. 

So you went straight onto the Internet to look up what this thing might be?

Yes.

And found out that it could be one of a number of things, all quite serious. How did you feel about that?

Fairly sanguine. I mean I knew it wasn't AIDS. I thought it was highly unlikely it was one of the hepatitises, so I was fully expecting it to be a leukaemia. And I know that leukaemia treatments have improved enormously over the last few years. I had a friend who had it, unfortunately, ten years ago. And she had quite a good period in remission before it came back again, she died. But I know the treatments since then have moved on and, hey, what can you say? There are good things and bad things that happen to everyone. I've had an awful lot of good things.

It was, it's funny in a way, because the final diagnosis of Mantle cell lymphoma, which is not a nice one, I mean it's a three to five year prognosis, although I'm hoping to beat that. Because the three to five year prognosis is based on the fact that it's mostly men in their 60s who get it. So I'm hoping that being female and being reasonably healthy and in my forties might make a difference. But by the time they made that diagnosis I'd already been through all the emotion of knowing it was cancer, thinking it was this particular, not very nice one, the Splenic Marginal Zone one, and then thinking it was relatively OK, you know, so in fact by then I think, as I say, it wasn't so much of a big deal.

Was reluctant at first to swallow her chemotherapy tablets because she was frightened of the possible side effects, but then had none whatsoever.

So tell me a bit more about the treatment and what effects it's had on you so far?

OK. Well the first dose of fludarabine, I remember, they're tiny oblong orange tablets. I remember pushing them out of their covering and looking at these and not wanting to take them the first time at all. It was quite a psychological thing. It was the same as, I used to wear contact lenses and my eyes are very sensitive to all sorts of things, and I got to the stage where I'd get the contact, my finger a few inches away from my eye and I just couldn't make myself put the contact lens in because I knew it was going to make my eye sting. And it was like this with these tablets. I was just staring at these orange tablets not wanting to swallow them because I was sure that the instant I swallowed them I'd be having all the effects that you think of from chemotherapy' my hair would fall out straight away and blah, blah, blah. And of course none of that happened. I swallowed them and it was absolutely fine. I had not one side effect whatsoever from the fludarabine. 

Was glad she hadn't refused chemotherapy as it had so far been easier to tolerate than she had expected.

They've discussed it, they've described it, but I haven't been involved in any decision over what to do. 

How do you feel about that?

I don't feel bad about it. I feel they know, they are the specialists. The one decision I suppose I would have maybe been expected to be asked was, 'Do you want to have treatment or not?' And that wasn't asked. And maybe it was just as well it wasn't asked because in my own mind I'd always decided, having seen other people go through cancer treatment and then still with the same outcome in the end, I've often thought, well maybe I wouldn't do that. Maybe I'd just deal with the cancer and not worry about all the effects of the chemotherapy. But, given that the chemotherapy hasn't been as bad as it could have been, so far, this is not with the bone marrow in the offing, maybe it's just as well that I wasn't given that choice. But no, otherwise there's been no decision for me to make in this.

Found it hard to tell others without crying so at first used email, later phone, then face-to-face as she learnt to handle her emotions and those of others.

How did you go about telling other people close to you about what the matter was?

Well, as I say, to begin with email was absolutely fabulous. I told my parents over the phone, which was not easy, partly because I think it's always, well, people close to you they don't have to deal with it. I mean they can't do anything about it. When you're having to deal with it yourself then you've got something to do. But I think it's far worse for people looking on. So that wasn't easy, but then there was quite a long period when I didn't actually tell anyone on the phone or face-to-face, but I did via email. Oh, I say quite a long period, I'm saying about a week. And then gradually I began to talk about it on the phone, and then face-to-face, initially actually with colleagues at work because by then I'd, as I say, it was over the Christmas break and by then I'd got to go back to work and started telling a few people there, almost experimentally, you know, 'Can I tell this person without having to run out of the room in tears?' And gradually it got better and better and better. 

Did you run out of the room in tears ever?

No, but I stayed near the door and always prefaced what I was going to say with, 'Don't say anything, whatever you do, don't be sympathetic, but I just want you to know blah, blah, blah.' Because I think the worst thing is when people, when other people get upset and sympathetic, that's what I couldn't, at that point I wouldn't have been able to deal with it. Now it's easier.