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Interview 24

Age at interview: 41
Age at diagnosis: 19
Brief Outline: Diagnosed with Hodgkin's disease in 1984, which relapsed in 1996, and non-Hodgkin's lymphoma in 2004. Treated with radiotherapy, chemotherapy, rituximab and autologous stem cell transplant. In remission.
Background: Picture Research Manager, married with two children aged 5 and 2. Ethnic background: White British.

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She found a pea-sized lump in her groin. On two occasions the university doctor reassured her but advised her to monitor it. She became very concerned and at a third consultation the doctor requested a biopsy, which showed she had Hodgkin's disease. A 'staging laparotomy' showed her disease to be at Stage 1 but radiotherapy was given to her groins and abdomen as a precaution. To preserve her fertility they stapled her ovaries to her uterus and partially shielded the area with lead to reduce the radiation exposure. 

Twelve years later a lump appeared on her neck and she arranged for a biopsy to be done at the same time as a scheduled tonsillectomy, which showed that the Hodgkin's had returned. She was by now planning a family so was concerned to protect her fertility. She was given radiotherapy to her neck, chest and armpits. She went on to get pregnant twice but had difficult pregnancies because of her displaced ovaries.

After her second pregnancy she lost weight, had night sweats and leg pain. Tests proved that it was not a recurrence of her Hodgkin's, but non-Hodgkin's lymphoma. She was treated with CHOP chemotherapy with rituximab, followed by ESHAP chemotherapy and an autologous stem cell transplant, following which she contracted a series of infections. She was diagnosed as having an enlargement of the bronchioles in the lungs and an immune system deficiency. She is receiving gamma-globulins, antibiotics and physiotherapy. 

Her lymphoma is in remission and she now knows that her type of Hodgkin's lymphoma tends to relapse and culminate in non-Hodgkin's. The chemotherapy has induced an early menopause so she is grateful that she was able to have children when she did.
 
 

Originally had Hodgkin but became ill again after 20 years and was diagnosed with non-Hodgkin's...

Originally had Hodgkin but became ill again after 20 years and was diagnosed with non-Hodgkin's...

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And then my biggest experience of lymphoma happened after my little girl was born. She was about six months old and I was losing a lot of weight, which I put down to the breast feeding, and I thought that was OK. I was feeling quite tired and poorly, which again I put down to having had a baby and a young toddler running round as well. The main symptoms that I then noticed were the night sweats where I was getting dreadful fevers in the middle of the night and peculiar cramps in my legs which were waking me up in the night, I was getting incredible pains in the back of my legs at night, leaping out of bed really in agony, didn't know what this was, what was going on, went to see my GP and he said, 'Well I think you'd better go back to the oncologists who saw you when you had your Hodgkin's disease and get it checked out.' 

So I went back to them and I could see in their eyes immediately that they knew what was happening, which was that I was relapsing again. And they sent me off for a CT scan. And sure enough I came back with a diagnosis of non-Hodgkin's lymphoma. Now at that point I had two kind of experiences in my brain' one was the horrendous experience of my Dad having been ill with it, so I knew that non-Hodgkin's was possibly a bit more scary than the Hodgkin's that I'd had before; but also I'd had a very positive experience with my last treatment of Hodgkin's, so I wasn't sure whether I was just going to take six pills and be fine, whether the technology had moved on that much, or whether things were going to be quite hard. So it was a bit of a period of not knowing what was going to happen next.
 
 

Was very sick after her first chemotherapy treatment but less sick after later treatments because...

Was very sick after her first chemotherapy treatment but less sick after later treatments because...

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I started off really just thinking I was going to survive the CHOP. It wasn't very nice, it was probably worse than I expected. It made me very poorly and made me very ill, very sick, and I got a lot of infections while I was having it. But we survived, and it was also very hard having a young family at the time, but we did find lots of survival mechanisms, you know, coping strategies for coping with things. And the first few months were very, very hard up until Christmas, so this was treatment starting in October so it was kind of October, November, December, three months-worth of treatments. 

The first time round was the worst because we were getting to grips with all the drugs that were going to stop me being ill. After that probably the second and third times got easier because we knew what to expect and I knew what drugs to ask for, and so I was much less sick, I was on top of it a lot more. 

 

Had worried after a poor 1st day's harvest that not enough stem cells would be harvested, but was...

Had worried after a poor 1st day's harvest that not enough stem cells would be harvested, but was...

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After my two lots of ESHAP I was down to have the stem cell harvest, and to that end I was injecting myself with GCSF growth factor to make my bone marrow produce extra red blood cells that were going to come out into my blood so that they could be harvested from my blood. That was fine, I got used to that, didn't have any problems with it. The actual process of harvesting the stem cells was quite peculiar, I won't go into lots of details about that, but that was enormously stressful because I hadn't realised until I was actually doing it that there was a possibility that they wouldn't get enough and that I wouldn't be able to have the high dose chemotherapy and the autograft because I might not have enough stem cells to put back. 

It took two days to get them out and at the end of the first day it looked as if they weren't going to have enough, and I had a really sleepless night of worrying to hell about would they get enough? But thank God something happened and overnight I produced a lot more and the next day they had a much more successful harvest. The staff up in the Blood Donation Unit at the hospital were wonderful and very kind and stayed behind late to do all sorts of tests to make the lab get the results so they could ring me that night and tell me that they'd got enough stem cells for the autograft, which was really really good and saved a hell of a lot of heartache about it. 

 

After being discharged from hospital after her stem cell transplant she spent days in bed at home...

After being discharged from hospital after her stem cell transplant she spent days in bed at home...

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After my three-and-a-half weeks I really did not want to go home, I felt so weak I was practically on my knees begging the staff to keep me. But they said, 'Look you're going to feel like this for a long time, you've got to get a way of coping, being back at home again. We want to get you out of the hospital, the sooner you get out the sooner you're going to start your recovery.' So I gritted my teeth and came home. That was probably the hardest part of all in some ways because I was so exhausted and tired that I could hardly move, and some days I would just lie in bed all day, sometimes I'd manage to crawl down onto the sofa for a bit. 

We'd got to the bit about post stem cell transplant. That was very hard because I was so exhausted all the time and I expected to come home and to get better quite quickly, and I sort of thought, 'Oh April', I thought, 'Well by July I'll be feeling a lot better', and I thought, 'Oh maybe I'll just have the summer and then I'll go back to work in the autumn', and I was thinking, 'Maybe I'll go back to work in September', and then I thought, 'Maybe I'll go back to work in November'. And I just carried on being exhausted all the time. 
 
 

Had so many chest infections that her doctors decided her lungs had been permanently damaged and...

Had so many chest infections that her doctors decided her lungs had been permanently damaged and...

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I also had an awful lot of post treatment infections and those were chest and sinus infections, and I was just finding that the staff at the hospital were very concerned about it, every time I got an infection and a temperature they wanted me to go up to the hospital. And that was something that we didn't expect because we thought once we'd finished the treatment in April things would get better and better. And I was finding that I was going into hospital for an average of about one week in four or one week in five with an infection, and each time I was staying in for between four, five, six days having IV antibiotics to get back on top of it again. And this continued right through until my last hospital treatment, which was in October, so from April to October I had pretty much continual infections all the time in my chest and sinuses and was on a lot of big antibiotics. 

At this point the consultant realised that I had a problem with my immunoglobulins. Don't ask me to tell you all about immunoglobulins because you need an immunologist for that. But I was diagnosed with something called hypogammaglobulinaemia, which was I had very low amounts of two gamma-globulins and I was deficient in one of them, which meant that I had very little immunity to infections, particularly chest and sinus infections. And I was also having trouble with my chest so I was sent off in two directions' 1) to the immunologists, and 2) to the chest clinic. 

The chest clinic took a little while but eventually managed to diagnose me with something called bronchiectasis, which is a problem with some parts of my lungs where my bronchioles have become enlarged and they've not come back again because of all the chest infections that I've had last year. And I'm getting a lot of sort of mucus trapped in there and that's providing an ideal breeding ground for the infections. So I'm having that treated with various courses of antibiotics and physiotherapy, which they're hoping will get on top of it. 

And the immunologists are now investigating a line of thought which is that I may have a primary immune deficiency and I may have had the problem with my gamma-globulins to start with, and that may have given me a genetic tendency towards the lymphomas. 

I'm hoping to go back [to work] round about the end of April, beginning of May, which is when I'm hoping that my gamma-globulin therapy will have started to really take effect and I won't be getting all these infections all the time. So at the moment I just live constantly on antibiotics with infections in my chest and sinuses.

Are you still having those treatments?

Yes and'

How many more have you got of those?

That will carry on forever' 

Oh I see.

'unless I suddenly start making immunoglobulins, which they think is unlikely. So it will probably be one day every three weeks or one day every two weeks for the foreseeable future.

And that's an intravenous infusion?

Yes it takes me the best part of a day really. By the time I get up there at about 9 o'clock, I usually get away by about 2. But I haven't had a lot of them at the moment so I haven't really got the pattern properly organised. But I'm hoping that I'll be able to drop the kids off and get up there and be home in time to pick them up from school and nursery.

 

She and her husband planned to have children and worried that chemotherapy for her relapsed...

She and her husband planned to have children and worried that chemotherapy for her relapsed...

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They took the biopsy and lo and behold it was the Hodgkin's disease again, which was quite a shock to everybody. Again they did lots of tests, at this point they were able to do more scans and things, and again it didn't seem to have spread anywhere except it had obviously gone, somehow it had got from my groin up into my neck. At that point I was utterly convinced that I was going to have chemotherapy and that I would be made infertile, because at that point I was thinking about having children, I'd just met my husband, we were very happy, we were thinking about our future together and we definitely knew we wanted to have children. And that was the thing, I must say, that was uppermost in my mind was, was I going to have chemotherapy? Was it going to make me infertile? And I've since talked to lots of people who've said, 'Well you could've had chemotherapy and it may well not have made you infertile', but at that time that was what I was worried about. 

As it turned out by the time I got to see the specialists they said, 'No we'll treat it with radiotherapy again'.

 

Had an operation to preserve her fertility by stapling her ovaries to her uterus, outside the...

Had an operation to preserve her fertility by stapling her ovaries to her uterus, outside the...

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They'd taken my spleen away by that point so I didn't have a spleen any more, but they decided that what they would do would be to treat me with a course of radiotherapy to the area just to make sure that nothing was going to recur. And they were suggesting something called an inverted Y radiotherapy, which was going to cover both my groins and sort of up my stomach, although they hadn't found any signs of the disease in my stomach at all. 

At this point I was told, 'Oh well you do know that this treatment is going to make you sterile', because the radiotherapy would have covered my ovaries. And I was not happy about that at all, being only nineteen , so we went back to the hospital and asked them if there was anything they could do about it. And they agreed, after quite a lot of haggling, to perform an operation called an ovarian swing where they cut me across my bikini line and they took my ovaries and they moved them and actually stapled them onto my uterus, one on the front and one on the back with kind of metal staples. 

The next things that happened, which may or may not be of interest to anybody, was having children, which was, I was very lucky in the fact that I got pregnant quite easily. Having had all this I was told that it was very likely that I was going to have problems getting pregnant. I didn't have any problems getting pregnant at all, it took me about four months. What I did have was a huge amount of problems in the pregnancy because of having had this operation to move my ovaries. So ironically the operation which had saved my fertility actually made my pregnancy pretty horrendous because my ovaries and ovarian tubes were being yanked and pulled in all directions as the baby grew. And I was kind of immobilised by about twenty weeks, by about half way through my pregnancy I could hardly walk at all. But I got through it, I managed to find some techniques for coping with that which were non-drug based, and I was doing relaxation exercises and visualisation exercises, which in the end carried me right through my pregnancy and the birth, which was helpful. And my son came along, which was great. 

Didn't think any more about the lymphomas again, decided we wanted to have a second child, and got pregnant again. Had another slightly less traumatic pregnancy, used all the techniques again. And at least by this time we knew what it was that was causing all the problems, because the first time around my operation notes were lost in the mists of the bowels of the hospital. By the time the second pregnancy happened we knew what to expect so we could cope with it, although we did have a sort of three-year-old running around as well, which was quite hard work. 

 

Knew that complementary therapies were used to help people with cancer but was surprised that the...

Knew that complementary therapies were used to help people with cancer but was surprised that the...

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I felt that there was a wealth of complementary stuff that was about, that was one of the things I found very strange, was that I expected when I was on a cancer ward or a haematology ward with lots of people with lymphomas and leukaemias, that there would be a lot more openness to complementary therapies. And actually there was a completely closed mind up there, they weren't interested in them at all. And I found that quite strange because I think I would have liked to have more. 

The Cancer Support Centre at the hospital offered things like massage and relaxation and things, which was good, but the actual health professionals themselves were quite anti, and I found them quite closed minded about complementary therapies. What I felt was that there were loads and loads of complementary therapies, you know, you go on the internet, complementary therapies to go with types of cancer, and there are millions of them, so where do you start? So you go back to your consultant and say, 'Look I've seen all these things, which one do you think I should try?' And they just say,' Oh well we haven't tested any of those, we couldn't possibly recommend anything and we don't think any of them are going to work anyway.' That was an area where they were quite closed minded I'd say. I would have liked a bit more of that. 

Having said that, I can understand that they're spending so long researching into all the conventional aspects of it that they just don't have the time and energy to keep up with it all, and they couldn't possibly recommend anything to you. But I think they should work more closely hand-in-hand. 

 

Her doctors didn't explain properly how much her tumours had shrunk with each treatment, causing...

Her doctors didn't explain properly how much her tumours had shrunk with each treatment, causing...

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So what do you think of the various health professionals that have looked after you?

I think they've been very good. There were times where I felt some of the, not the consultants actually but the slightly less senior doctors, registrar level, were unwittingly quite insensitive and particularly where they accidentally withheld information or said things to me that I misinterpreted. I don't think any of it was intentional, I think they'd just become immune to what they're talking about. 

I'm trying to think of the particular occasion. It was when I had had the CHOP chemotherapy and then I had a CT scan and I wasn't told what the results were. And I was told that in order to go ahead with the high dose chemotherapy and the autograft my tumours would have needed to have shrunk by at least fifty percent from their original size. Now after I had the second lot of chemotherapy, the ESHAP, I had another CT scan, I went to see the doctor, and the first thing he said to me was, 'Well your tumours haven't changed size at all since you had the CHOP.' What he didn't tell me was that they had reduced more than fifty percent in size after the CHOP, and he didn't tell me that after I'd had the CHOP. So after the first lot of chemotherapy they could have told me that whatever happened with the ESHAP, the ESHAP was preparing me for the high dose chemotherapy, they could have told me that whatever happened to my tumours as long as they didn't get bigger I would have been able to have that treatment. But they didn't tell me, they didn't think to tell me that. And they sort of announced, 'Oh your tumours haven't changed in size with the ESHAP,' and I immediately thought, 'Oh my God, that means I can't have the high dose chemotherapy', which everything had been, I'd been led to believe was the kind of Holy Grail of getting rid of it. 

And I then sort of forced him to explain, but I had a really horrible few minutes where I thought everything was going horribly wrong. And I think if they'd just been a little bit more thoughtful they could have alleviated a lot my worry. And basically through the whole ESHAP treatment, which was two rounds of quite nasty chemotherapy, they could have told me, I could have known that basically the CHOP had worked really successfully. And that was just a thoughtlessness, it wasn't a conscious thing by anybody.

 

Has taken a long time to recover from her stem cell transplant and after 2½ years off work has...

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Has taken a long time to recover from her stem cell transplant and after 2½ years off work has...

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I had gone on maternity leave with my second child and I was intending to come back to work round about the same number of part-time hours as I had been after my son was born. And obviously I've been away for a long time. I think the main thing is that it's affected my confidence about going back to work because I've just been away for such a long time, it's nearly two-and-a-half years since I was at work. But I know that I was there for such a long time that I'm sure I will have been back for a couple of weeks and I'll probably feel as if I've never been away because it's that kind of place really and I've been there for a long time really. So it feels scary at the moment but I know it'll be OK really.

Do you have a date for going back? 

No I don't. I went to see my personnel officer at work and they, work have been very good and very supportive and they're going to look at my medical situation and work together with their occupational health team who will recommend a sort of phased in programme of when I'm going to go back. 
 

 

Her husband missed work to look after the children and lost pay. They paid for extra childcare...

Her husband missed work to look after the children and lost pay. They paid for extra childcare...

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So how has it worked out financially with you being off work all that time?

That has been quite hard and I've recently done a Cancer Research phone survey about the implications, financial implications of cancer. My husband is actually still working short hours, because at the times when I was ill he had to be the main care giver for the children, so he's been going to work late and coming home early, so getting to work at sort of 10 and coming home at half past 4 in order to be there at both ends of the day for them if necessary. So that's obviously had quite a financial implication. 

I've been on long term sickness scheme at work, which is great, and they pay a portion of my salary, but also I was supposed to get statutory sick pay. Unfortunately that's based on your pay in the last six weeks before you are diagnosed as ill, and because I was on unpaid maternity leave at the time my pay is deemed to be nothing, so I can't get statutory sick pay even though I've been working full-time for something like fifteen years beforehand. So that's a bit of a blow. 

We've had to run two cars and that's obviously got financial implications. That's partly to do with having the kids as well, but I've had to carry on having a car really because I've been ill, that's helped out a lot. 

One of the biggest things is the cost of keeping everything clean. I spent a fortune on a cleaning company who are lovely but, and very good, and they come and clean the house, when you leave the hospital having had a high dose therapy and a stem cell transplant you're very, very, very open to infection, and they give you all these lists of things about boiling your towels and having your house cleaned and wiping your surfaces down with bleach every day and everything, which I'm afraid I just couldn't do. And so yes keeping everything clean costs a lot and probably over '200 a month we spend on cleaning bills, and still do try and keep everything under control so that I don't get infections. 

Childcare has been enormously expensive. It would have been, if I'd been full-time back at work again, my daughter would have been at nursery, but we've had to give that up through the time that I was ill, so that's over '500 a month for childcare, I think it's '550 or something. Fortunately my son's at school but he's had to go to holiday clubs and after school club so that's ratcheted it up as well. 

So it's been quite a hard year financially but I know that we're not in a terrible state, we were in the fortunate position of having some savings that we could use, so I'll wait another few years for my new kitchen.

So it hasn't put you in debt?

It hasn't put us in debt, thank God, because we had some savings. But I know that other people have, I've spoken to other people up at the hospital who've suffered a lot. I was fortunate that my job did have a long term sickness scheme attached to it and that they're still holding my job open after nearly two-and-a-half years.

And what about state benefits, were you eligible for any of that?

Yes I get, I'm going to forget the name of it, but I do get the sick'

Incapacity?

Incapacity benefit, yes. I didn't get Disabled Living Allowance, but I do get Incapacity Benefit.

And is that ongoing until you're back at work?

Yes that will obviously stop when I go back to work.
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