Interview 39

Age at interview: 52

Age at diagnosis: 45

Brief Outline: Mantle Cell non-Hodgkin's lymphoma was diagnosed in 1999 after she found a lump in her thigh. She was treated with chemotherapy and rituximab. She is in remission.

Background: Retired Health Visitor, married with two adult stepchildren. Ethnic background: White British.

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She found a lump in the top of her thigh, and wondered whether it might be a secondary tumour from the breast cancer she'd had three years earlier. When the lump hadn't gone away after several weeks she decided to consult the GP. She saw a locum GP who thought it was nothing to worry about, but when pressed agreed to arrange for an ultrasound scan. The radiographer suspected an aneurism and suggested she see a vascular surgeon. The vascular surgeon said it wasn't an aneurism but did an MRI scan that showed it to be an enlarged lymph node, and a fine needle aspiration that confirmed it was high grade non-Hodgkin's lymphoma, so referred her to a haematologist. The lump was removed and the pathology results classified the lymphoma as Mantle Cell, which usually has a poor prognosis, although a CAT scan confirmed that it had not spread beyond the one lymph node.

The treatment plan was for CHOP chemotherapy followed by localised radiotherapy. However, after 3 chemotherapy sessions a bone marrow biopsy showed lymphoma in her bone marrow so the radiotherapy was cancelled and the chemotherapy changed to the more aggressive ESHAP. She had one dose of ESHAP followed by a dose of rituximab, and a second dose of ESHAP. They then harvested her stem cells to store for a possible future stem cell transplant if she were to relapse. Her sisters were tested to see if they could also be stem cell donors if necessary in the future, and one was found to be a perfect match. A bone marrow biopsy then showed that she was in remission

She returned to work as a health visitor for a short while but was advised to retire on health grounds, which she did. She is now a patient representative on a professional body and a magistrate.

The consultant told her she had mantle cell lymphoma, which has a poor prognosis, but he hoped...

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And then my consultant came in, and he sat down on the bed and said, 'How are you?' And I said, 'Oh I'm OK'. And he said, 'Right well we've had the final results,' he said, 'of the biopsy.' And he said, 'The type of lymphoma you've got is something called Mantle cell lymphoma'. And he said, 'It's quite rare, it's unusual for it to happen in younger people, it tends to affect people in their sort of late 50s, 60s, 70s, it predominantly affects men. It's normally diagnosed in the late stages, and you can look up anything you like on the internet but the answer is it's not a good one to have and if we haven't got a better treatment than the one we've got now within the next five years we're going to be in trouble. There isn't a cure rate, you can't cure it, and the treatment that we have actually doesn't tend to work awfully well generally. But I'm prepared to work with you and we'll see if we can re-write the history books and the medical books'. And I said, 'I'll go for that one'.

And of course we did look it up and yes it has a very, very poor prognosis, normally three to five years from diagnosis to death. But again, as I say, it's not normally diagnosed in the early stages, and mine was early stages because apart from the lump I had no symptoms, I had no night sweats, I had no weight loss, I didn't have any of the other symptoms that you normally associate with late stage. And at the time it could only be found in this one area, the CAT scan had revealed that it wasn't anywhere else in my body. So that was good news, so the plan was to have, I think it was six rounds of CHOP chemotherapy and then irradiation to the localised area, and hopefully that would be the best treatment at that time.

Had no side effects from rituximab and said that it was much easier to tolerate than chemotherapy.

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I'm just thinking, somewhere in the middle of that I had rituximab. I had, yes I had rituximab as well and I'm just trying to remember, it's so long ago. Between the first lot of ESHAP and the second lot of ESHAP I had rituximab, which is the antibody therapy. This was a very new cutting edge therapy at that time, very much tried and tested in the States but not really used an awful lot over here. And I was one of the, I think I was about the second or third patient that my consultant had actually used it on. So I had, I think that's right, I had the rituximab and then the second lot of ESHAP and that's when they told me that my bone marrow was clear and that I was in remission. I was never quite sure whether it was the ESHAP or the rituximab which cleared it but the fact was it was clear at that stage so I was considered to be in remission.

But as far as the treatment goes, with each of the treatments we've read the information from the Lymphoma Association and Cancerbackup. The staff at the hospital were excellent at talking about, you know, sort of explaining the treatment to us. And when it came to the rituximab we did look up quite a lot of information on, again from places like Johns Hopkins. We were given information from the hospital and we were certainly allowed to ask all sorts of questions and had a thoroughly clear understanding of the treatment before we chose whether or not to take it up. Which I did and it was very successful for me, you know, I had no reaction to the rituximab. On the whole it tends to be well tolerated, it was lot more, it was lot more tolerable than the chemotherapy I can tell you, much more comfortable to receive and you didn't get the side effects in that way, so that was quite good.

Likens high dose therapy with stem cell transplant to killing a lawn with weed killer before...

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And the way I best describe it I think it helps people that don't understand, is if you imagine a lawn, if you image your body is a lawn and the cancer cells are weeds, and the idea is that you use the chemotherapy as a weedkiller. And the ESHAP was a weedkiller and it killed some of the grass but hopefully most of the weeds. But of course you can't get rid of all the weed seeds but you do your best. So they cleanse it so that you've got it as weedless as possible and then when you have a stem cell transplant they give you a general purpose weed killer, they kill the entire lawn and then they re-seed it with as much good quality seed as they can, and hope that the amount of weed in there is very small and that they then manage it afterwards. So that was the plan, so the ESHAP was to prepare my lawn, remove as many of the weeds as they could so that you got the best quantity of grass seed ready for reseeding afterwards.

Her consultant did not mind her having massage during her remission. She also used Reiki and...

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I did yoga and my yoga teacher was a Reiki therapist too, so I had some Reiki treatment which I found really very relaxing and very pleasant. I'm always very open minded about alternative therapy. I've also had reflexology, which I love. And actually a friend of mine was doing a massage course and wanted to know if I would be a guinea pig for her. And I said yes I was happy to do that. So I told her what my history was and she went off to her tutor who said, 'Oh, cancer, sort of, you know, haematological cancer, so you can't do, I don't think you can use this person. If you do you'd have to get her consultant to consent. I'd like you to do that'. So I went to my consultant, said, 'What do you think?' And he said, 'You're in remission,' he said 'I've got no strong views about it, I don't claim to know anything about it, if you want do it you do it. From a medical point of view I don't have a problem.' So in fact this lady's tutor was delighted because she felt that it was great that a consultant had actually said yes, he didn't have a problem. So yes, so I've had massage.

I still do yoga, I do my yoga because it helps to keep me supple, a bit, more than I usually am. It gives me space, it gives me an hour and a half once a week to switch off because even though I'm retired I'm still leading a chaotic lifestyle. It's a time for sort of meditating and actually sort of really thinking about oneself. So I still do, I still use that. So yes I guess I do.

Did you do yoga before you had your lymphoma?

I did.

So it's something that you continued?

Yes, yes.

Her parents were shocked, and her sister angry, to learn that she had lymphoma having had breast...

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Tell me about your family and how they reacted to your diagnosis and coped with your illness?

Well going back to, if I may, to when I had my breast cancer, it was very hard because I had to go and tell my parents, who were elderly, and my sisters, that I had breast cancer. And of course they were all incredibly shocked and upset but I was able to tell them that the lump was small and the prognosis was good, and in fact when the lump was removed and it was tested in fact I had no lymph node involvement and it was the best possible outcome. So that was good because I could very quickly say, 'Yes I have had breast cancer but I have a very good prognosis'.

Three years later, d'j' vu, my parents were actually living in a granny annex of my sister and I'd had my hair cut short because I went and had it cut short very quickly because I knew I was going to have the chemotherapy. And I rang up and said, 'We'll pop over and see you', to my parents. And I saw my sister in the garden and she said, 'Oh you've had your hair cut'. And I said, 'Yes'. She said, 'Oh gosh, that's unusual for you to have short hair'. I said, 'Well I fancied a change'.

So I went in and saw my parents, and my sister actually sort of popped her head around the door and I said, 'Actually while you're here can you come in?' And she said, 'You've something to tell me?' And I said, 'Yeah and it will be easier to say it once', so she and my brother-in-law came in and I told them. And I could have wept, I did. My mother crumbled, my father went pale and he was elderly and quite frail, and the distress on their faces. My sister got so angry she said, 'I can't believe you could do this to us twice' and stormed out into the house. And so I sat and I said to mum, 'I'm sorry, I didn't mean to do this, it's not something I chose to do'. She said, 'Of course it's not, don't be silly'. So I actually left them to sort of take it in and I went to my sister and she was in her bedroom and she was crying and she said, 'I'm sorry'. I said, 'I'm so sorry, I didn't mean to do this, it's not something I wanted to do'. And she said, 'No', she said, 'it's just it's so unfair, why can this happen to you, why? It's not fair, it's not fair that this should happen, I'm so angry. I'm just so angry, not with you, I'm just so angry'. And that was her reaction, she was just angry with the world, that they'd had to go through this twice with the same person. And my sister and I are very, very close.

But once I told them, I mean they rallied, but my mother worries, I mean she, and I actually kept quite a lot of the hard facts from her. I never ever told her, my mother died three years ago, she never knew my prognosis, she never knew that it was an incurable form of cancer, she never knew it would come back. And a lot of people said, 'Well isn't that unkind because when it comes back it's just going to hit her again?' I said, 'Yes but actually she's elderly and if I can save her the trauma I would prefer to do that'. And my father is 94, he's still alive, he still doesn't know my prognosis. And I'm glad because seven years on he hasn't had to go through the trauma of knowing that at any time it could come back. And as far as he's concerned I still go to the doctors, the consultant, I still have my check-ups but that's just something that you do, don't you?

Had 10 months off sick but went in occasionally when her blood counts were high; struggled on her...

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We've made a lot of lifestyle changes, I did go back to work as a health visitor after my treatment, but after six months I was finding I was struggling to do the work, I was tired, it's quite a stressful job, I was working on my own and I went to, I was referred to occupational health. And they said, 'Why are you doing this, why are you working in a stressful situation with children', who are obviously great bug carriers, 'In a GP's surgery where people with all sorts of infections turn up, with a compromised immune system? It's crazy that you should be doing this with a prognosis where you, with the best will, you've been told you've maybe got three to five years. We think that', the nurse said, 'I think you should be considering retiring on grounds of ill health. I will put a case that I think that that is the situation, I strongly recommend that you retire and I suggest you clear your desk on Monday'.

So that was another brick wall that I hit because I was working, and although I was struggling and finding it hard work, it hadn't really occurred to me to stop working. And a lot of people say, 'Well that's outrageous, she shouldn't have just done that'. But I'm the sort of person that I need somebody to give me permission I think, I'm not very good at saying, 'I'm sorry, I really have had enough of this, I'm walking'. I don't do that, I'm too reliable. So I suppose in a way actually being given permission to do that was what I needed. I came home, I told my husband and he said, 'Right if you're retiring I'm retiring too'. I said, 'No you can't do that'. And he said, 'I can,' he said, 'it's something that'' and to be fair it was something we had even talked about, even before I'd been diagnosed with my illness. He'd said, 'I'd like to retire in my early 50s.' I said, 'No, no, no, no, no, you at 55, I'll retire at 50, that's quite reasonable'. Anyway I was retired at 46, he said ,'I'm going'. So at, I was 46, he was 50 and we both retired. I left in the, I think probably about the May, and he retired in, or the June, and he retired in the July.

We spent the next three months planning a tour round the world and we spent 3' months doing a world tour, which shocked and surprised everyone, not least of all his daughters, because we're not impulsive people, but it was something that we chose to do and it was a wonderful way to celebrate retiring and the start of a new era in our lives. And we came back from there and we have continued to remain retired. I sit on a professional body as a patient representative for haematology, working with consultants and professionals looking at where haematology practice is going in the way of research and funding and all the other, you know, and best practice. I also applied for and was accepted as a magistrate so I do that about a day a fortnight on average, which keeps the grey cells going and gets me out of the house.

My husband runs his business interests from home. We have our two dogs, we walk the dogs, we enjoy life, we're busy, but I now take time to do what I call 'sniff the air'. And on a beautiful day like today you stop and you think, 'Hey God, isn't it good to be alive?' And that's actually I think the difference is that now we take life as it comes, we enjoy life for what it is, which is something that so many people just don't do. And if you ask me, having had cancer twice, am I unlucky? I would say no, I've been incredibly lucky because it's made us realise how important life is, and we enjoy it.