Interview 38

Age at interview: 61

Age at diagnosis: 60

Brief Outline: Non-Hodgkin's lymphoma diagnosed in 2005 following diarrhoea and swollen lymph glands in her neck. Treated with chemotherapy and rituximab. A new tumour was discovered immediately after being told she was in remission.

Background: Mature PhD student, married with two adult children. Ethnic background: White British.

More about me...

Her symptoms were persistent swollen lymph glands in her neck and diarrhoea. Her GP referred her to hospital for tests, and after several months, the biopsy results revealed low grade follicular non-Hodgkins lymphoma.

She found out about a clinical trial of rituximab and asked to join it. The local hospital was not participating in the trial so she chose to be referred to a hospital in another city. There she was advised that she was unsuitable for the trial but that she could be treated with chemotherapy and rituximab (R-CVP) if she moved to that city, so she rented a flat temporarily. 

She had a much better relationship with the consultant at the teaching hospital and felt much more supported by staff at this hospital than she had at her local hospital.

Her local hospital had given her a month's course of chlorambucil chemotherapy tablets, which she completed before starting on the R-CVP, which was administered via a PICC line. A bad reaction to the first treatment resulted in a hospital stay, during which time her husband had to stay away as he had developed bronchitis. On discharge she relied on a friend of a friend to stock the flat with food and the clean linen that she had been advised was necessary to avoid infection.

After eight treatment sessions she was told she was in unconfirmed complete remission. However, later that week she felt feverish and was admitted to her local hospital. Paracetamol reduced her temperature so she was discharged. Two days later the fever recurred so she was readmitted. A new scan showed a tumour between her lungs. She is awaiting an endoscopic ultrasound and biopsy to confirm what type of lymphoma it is, and is expecting to receive more chemotherapy and possibly a stem cell transplant.
 

Had to take so many different medications with her chemotherapy that she felt her life was...

The worst bit was the' when you'd had the treatment for about a week, you had a complicated regime of medication and the pharmacist went through it and said, 'Oh that mustn't be taken with that and that mustn't be taken with milk' so for that week, one week in three, my life was completely regimented, and I hate fussing about food and fussing about hygiene and things and I had to sort of write out the order of my day, so' take this, half an hour later take that, don't have any milk until two hours after that, have the mouthwash regime at this time and then half an hour later the second mouthwash and it was really tedious and went against the grain but I followed it slavishly because I thought the only way to get better is to do exactly what they say. 

Felt faint during her first rituximab infusion so it was stopped and restarted when she had...

So, I started my treatment straightaway and with the rituximab, I'd read that you could have a bad reaction the first time, and I'd been having it for about an hour or an hour and a half, I think, and I suddenly started to feel faint and I just managed to call a nurse who was nearby and say, 'I'm going to faint' and when I came round they were, you know, the circle of doctors and nurses round my chair, and they took me off it and then started it again, very, very slowly when I'd recovered and I think my pulse, would it be my pulse, went down to 41 or something, but it wasn't the worst reaction that you could have apparently. You could, your breathing can be affected and all sorts of things but I had, I knew that I could have a bad reaction so I was, I thought, 'Oh yes, this is part of the bad reaction' so it wasn't worrying and all the way along I've had the idea that if you know what the next step involves then you're forewarned and forearmed and it's much better, but I've instructed my family not to let me know if they read very negative things about what I'm going to go through, I just want to know what can go wrong but not the gory detail.

Moved home in order to get a certain treatment and used a friend-of-a-friend, not only to buy her...

Of course, one of the things I hadn't bargained for, because I didn't know until I got to the teaching hospital city that I needed these, was they were saying, 'Have a clean towel every day. Have a clean flannel regularly. Clean tea towel regularly' so you know, I'd brought two tea towels, 'one to wash and one to wear', and that was no good because I was supposed to be having a completely sort of hygienic regime so she had to go out, this friend-of-a-friend, had to go out, not only and buy me all the basic, staple food, but towels and tea towels and flannels and everything so she was absolutely wonderful.

There was something else I was going to say about that regime. Oh yes, that was the good thing actually about having moved house, that, because everything was new, all the rules that came from this rule book that they gave me, I could sort of attach in my memory, if you see what I mean, to the new kitchen and the new bathroom and the new hall and so on, so it made it much easier to remember. I think I would have found it fiendishly difficult to alter the habits of a lifetime in my home environment, so that was actually an advantage. 

Compares consultants at two different hospitals: one didn't allow her to finish her questions and...

Anyway, eventually, in the middle of August I got to see my local consultant and I went armed with a list of questions and he let me work through a certain number of questions and then he got up and opened the door and held it open and I said, 'Oh, excuse me, I haven't finished asking questions yet' and he said, 'What do you expect me to do about that? I've got a waiting room full of patients!' and I thought that was so insensitive, and he obviously had a spiel which he recited and he didn't do what we used to do in social work, which is 'start where the client is'. He didn't say, 'Do you know anything about lymphoma? Do you know, you know, have you read blah, blah, blah?' with a consequence that I didn't get a chance to have a proper discussion about the fact that I'd read up about all the new treatments and I knew that monoclonal antibodies, rituximab, were the treatment of choice for non-Hodgkin's lymphoma, and I'd also found out that there was a research trial going on and I wanted to be on it so I asked him about it but he said, 'Oh, no, no, that's winding down, that's finished' and I thought, 'That's odd, because why was it still on the Internet, looking very much alive, if it was actually finished' so I had to wait another month till I had my next appointment with him, check my facts and go back armed with the documentation saying this trial is very much, it's still recruiting and it's only just begun to recruit in fact, you know, far from what he'd said, so he then said, 'Oh well, all right, if you want to go on that trial I will recommend you, or refer you,' or whatever the procedure was. 

As a result of the letter that my local consultant wrote I went to see the teaching hospital consultant, who was like a breath of fresh air. He was, he believed in sort of two way consultations, having a conversation with the patient, and at the end of it he said, 'Have you got any more questions?' which I thought was absolutely wonderful, and he's also got, it's making me cry to think of it now actually, because he's so lovely. 

The teaching hospital consultant was everything that a consultant should be. He was, he believed in having a two way conversation with the patient, finding out what the patient wanted to know, making sure that all questions were answered and even using metaphors that would, getting to know his patient and using metaphors to describe the illness that would fit in with the patient's experience, so he apparently said to one patient, or one patient asked him, 'What will chemotherapy be like?' and that patient was a yachtsman, and he said, some, I don't know the technical terms but something like, 'Well it won't be storm force, hurricane force twelve,' whatever it is, 'but it'll be gale force nine' and there was just such a gulf between these two consultants that when I met the one in the teaching hospital I thought, I never want to see the one who'd ignored my letter and who'd refused to answer my questions and who'd actually, well, I'm reluctant to say lied to me about the trials but had misinformed me about the trials. And I didn't feel confident enough of my knowledge at the time to contradict him. 

One daughter finds information and updates people via email; the other is giving her mother a...

And what about your daughters? You said one was very good with information?

Yeah.

And you were going to live with one in the future?

Yeah. Yeah, Yes, they're very different. The one is like a sort of librarian and filling all my information needs and doing this emailing list, which is wonderful because I don't have to repeat what's happened to me each time when people phone up. They know exactly, they've heard the latest bulletin and they're often ringing up in response to that, and she also got a book for relatives of people with cancer on how to help, which has been useful. 

And the other daughter is, she's got a whole lot of problems of her own at the moment and she's said she's been thinking about me every day but it doesn't often convey itself into reality, into actuality but she's done this wonderful thing of buying a house in a place where I can have the treatment and have my address and not need to worry about whether I qualify for the treatment there still so she couldn't have done better and so they've both been extremely helpful and supportive in their own way. 

A friend of a friend supplied her new flat with essential food when she was discharged from...

Yes and then I got home at five o'clock on the Thursday having come to the teaching hospital city on the Monday, and of course we'd come from our home thinking, 'There's no point in carrying a load of food because there are supermarkets in every town' but I hadn't bargained for the fact that I would be knocked sideways by the treatment and the pneumonia and that my husband would have had to have gone home. So there I was at five o'clock on a Thursday evening in November with a bizarre collection of food that I happened to have picked up from home because it was things that were going out of date, so things like pine nuts and marmite and nothing decent at all. 

And I felt so isolated and terrified really because I didn't even know where the local shops were. I hadn't seen any local shops on the way there because I'd come through the sort of residential quarter and there was a shop actually in the next street, but I didn't know that and I thought, 'What am I going to do? I've got no food.' It was a huge effort to walk from one end of the tiny flat to the other and somehow or other, I think what saved my bacon really was that a friend of ours had been in touch with a friend of hers who lived in the teaching hospital city and she rang me up and said, 'If there's anything I can do to help, let me know' so I wrote her a shopping list and by the time I'd written the shopping list I was completely exhausted just from doing that, and she, a total stranger, turned up and went to two supermarkets and got me all the stuff.