Interview 06

Non-Hodgkin’s lymphoma diagnosed in 2005 after finding a swollen lymph gland. Currently being treated with chemotherapy (CHOP-R).

A week after completing a cycling holiday she had an aching neck and felt a lump. She looked on the NHS Direct website, which advised reporting lumps in the neck to a doctor immediately. Being a bank holiday weekend she went to the GP early on the Tuesday morning. The GP advised her to return in three weeks if it persisted, which she did.

The GP did a blood test and two weeks later she was referred to hospital urgently for a biopsy under local anaesthetic. Unfortunately this was inadequate and a second biopsy arranged, this time under general anaesthetic. When she attended her GP a few days later to check how the wound was healing she was told the hospital suspected lymphoma. The surgeon telephoned her to confirm the diagnosis of diffuse large B-cell non-Hodgkin’s lymphoma. She was thankful for the support of her niece who was with her at the time of that phone call.

Two weeks later she saw a specialist who recommended chemotherapy with monoclonal antibody (CHOP-R). The wait for treatment to begin seemed endless, during which time she was preoccupied by thoughts about the illness, and was relieved when finally given a date for treatment. She suffered no ill effects on the day of her first treatment, but experienced thick-headedness that lasted for the next two days, followed by slight headaches on waking for about five days. She started to lose her hair about two weeks after the first treatment. Other side effects were mild and included tiredness, sore gums and tingling fingers. She was able to continue with her Open University studies and after two treatments of six was surprised how well she felt.

She discovered her lump and her GP asked her to return in two or three weeks if it hadn’t gone away.

Age at interview 67

Gender Female

Age at diagnosis 67

Well May started off well, I spent three weeks, cycling holiday, came home May 20th. May 28th I was sitting reading and I couldn’t get my neck comfortable, it was aching and I thought, ‘Oh I’m not sitting right’ and ‘I’ll put a cushion behind my neck. And when you’ve got an ache you tend to touch the part that’s aching, don’t you? And so, on Saturday May 28th I found this lump. I went to NHS Direct and read that any lumps or swellings in the neck report to your doctor immediately. Of course it was a bank holiday wasn’t it? So that was Saturday, I was outside the doctors’ before they opened on Tuesday morning. And the doctor explained it could be what I think the proper name is a gland, lymphatic gland which had swollen up to fight off an infection that I had, and I was to go back in two or three weeks if it got larger or if it hadn’t gone away. Well I like to think I don’t dramatise things, I take things calmly, so I thought, ‘Oh I’ll give it the full three weeks and then we really know where we are. So I left it the full three weeks, went back, the doctor immediately said, ‘I think it’s getting larger, I need blood tests this morning. I thought, ‘Oh gosh.

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Although she expected to feel sick after her chemotherapy, the anti-emetic tablets she was taking…

Age at interview 67

Gender Female

Age at diagnosis 67

When I first started treatment I had a bucket near me in the living room and took one upstairs to bed for two or three nights expecting to be sick. It never happened, I didn’t have any feeling of nausea or sickness and I haven’t since. And I feel I can’t tell enough people this good news because so many people express surprise and astonishment that I haven’t had any nausea or sickness.

You said you never had any nausea from this treatment?

No.

Did they give you anti-sickness drugs to take?

Oh yes.

And you’re taking those?

I only take them for about five days after the chemotherapy session, that’s all. So when I come home after chemotherapy session I have about four or five tablets which I take, but that’s only that many tablets for about the first five days. After that I’m down to one tablet three times a day.

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To reduce her risk of catching infections she stopped going out, and instead of going to the…

Age at interview 67

Gender Female

Age at diagnosis 67

I did decide early on that to minimise the risk of infection I would stop going to theatre, cinema. I go to school normally a couple of times a week to listen to children reading, and I decided I wouldn’t do that throughout my treatment, and decided to stop travelling on buses. I am a rather independent person, I choose not to drive, I can get around quite happily with public transport or my bike, but although I’m physically capable of going to the hospital on the bus for my treatment, I decided because people have been very kind and wanted to help, to accept offers of a lift from them to and from the hospital to save me going on the bus, where I would be exposed to the risk of infection.

I still go shopping but it’s quite a small supermarket we have and I go at the quiet times. And I like to go out, walk into town, I invariably see someone I know and sometimes I bump into someone in Waitrose, I do tend to give people wide berths and I’m listening for coughs and sniffles.

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Had been given some information about complementary approaches but had felt no need to use any.

Age at interview 67

Gender Female

Age at diagnosis 67

Have you thought about or tried any complementary remedies at all?

A friend did send me information from the Bristol Cancer Information Centre, which I did read but I don’t feel that I have felt in need of relaxation tapes or the need to have special foods, I haven’t a problem with my appetite. Apart from really one low point I haven’t felt the need for encouragement to get me through, you know, I have felt quite positive about it and quite happy. But I can see that the Cancer Information Centre at Bristol would help people who have more aggressive cancers, who are suffering pain and other side effects. But fortunately I haven’t felt the need for that. So no I haven’t tried any complementary medicines.

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Was given information about lymphoma first, and about the chemotherapy and side effects later -…

Age at interview 67

Gender Female

Age at diagnosis 67

So you had quite lot of information, did you feel it was about the right level of information or did you want more or was it too much?

I would say that was about the right level. I was glad they didn’t give me information about chemotherapy and its possible side effects until later, because I had some time to try to digest what I had been given. Although I had quite a bit of information and I felt it was adequate, I still did have a look at the Cancerbackup website, Lymphoma Association website and the Oxford Lymphoma Group. And that was useful and I did find additional information and I guess it all helped me to feel that, well it’s almost a common everyday occurrence. But I have relied most heavily on the information I was given at the hospital. Even then there was quite a bit to take in because the side effects can be different in different people and I was expecting, ‘Well I might be this, I might be this, I might have this and I might have that’, then when it came down to it I had very few.

And when did they give you the information about the chemotherapy, because you said you didn’t have that straight away?

That was given to me when I went to the hospital for the bone marrow scan at the haematology unit and I met the registrar and the nurse there and she showed me, while I was in the day unit, the waiting room, told me it was quite a relaxed atmosphere in there, and there were patients having treatment sitting in chairs with drips in their arms, so that was when I was given the information about chemotherapy, which was two weeks before my treatment started.

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