Interview 38 - Lymphoma
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.
Audio & video
- Age at interview:
- Age at diagnosis:
- Mature PhD student, married with two adult children. Ethnic background: White British.
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.
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