Bill - Interview 114
Age at interview: 54
Age at diagnosis: 46
Brief Outline: Was diagnosed with breast cancer in 2001. Had a mastectomy and lymph nodes removed, then chemotherapy, tamoxifen and Arimidex (which he later took with testosterone replacement, Nebido). He later developed itching in his other nipple and had a second mastectomy in 2002.
Background: Bill is a retired education guidance advisor. He is married and has 3 adult children. Ethnic Background: White Scottish.
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When Bill found a lump in 2001, he was immediately worried about what it might be. He had known a man who had died of breast cancer. He made an appointment at the first opportunity with the GP who referred him for tests. In the meantime, he began to experience itching in both nipples.
The core biopsy, which he found painful and caused extensive bruising, revealed that he had breast cancer. He initially felt relieved because they quickly made plans for treatment. He had a mastectomy as an inpatient on an oncology ward. On seeing his mastectomy scar, he was struck by how big it was and particularly by the loss of his nipple. After a recovery period of about a month, he began six sessions of chemotherapy, which made him more and more exhausted as time went on. He experienced some nausea but, on his sister’s advice (she is a midwife), he requested ondansetron which helped to quell the nausea. He disliked the way that steroids made him hyper immediately after his treatment and his mouth became quite sore and painful. He was hospitalised for an infection during his chemotherapy and he experienced a widespread rash at another stage. During the six months when he had been receiving active treatment, his life revolved around the hospital; when the chemotherapy finished he felt a sense of absolute abandonment.
He took tamoxifen for a while but found the side effects intolerable. He felt moody and angry and had extreme hot flushes. He then took Arimidex, at that time a relatively new drug. In March 2002 he experienced itching again in his remaining nipple and some swelling. He was advised to have a second mastectomy. He had not been offered reconstruction after his first mastectomy and this time he insisted on being referred to a plastic surgeon, which was greeted with some astonishment. This surgeon agreed to ‘do something for him’ once his wound had healed, and later he had nipples tattooed onto his chest. He was pleased with the tattoos because they made him look the same he had used to look. During the waiting period however, for the first time, everything that had happened to him hit him ‘like a brick’. The oncologist recognised that he was clinically depressed, and he was referred to a psychiatrist who helped him to overcome his depression.
Following his illness and treatment, he experienced a wide range of health problems. He developed osteoporosis, his testosterone levels became very low and his libido was affected, he had pernicious anaemia and type 2 diabetes, and developed an enlarged prostate. Prior to his breast cancer his only health problem had been recurrent kidney stones.
Time and time again, since his diagnosis with breast cancer, Bill has been confronted by the assumption that breast cancer patients are all female. The leaflets he was given were written for women; he felt they were useless or offensive for older women or men with breast cancer. The overlooking of men and the inappropriate images of women made him feel like he had to ‘crusade’ for changes to prevent unnecessary grief to him and other men with breast cancer. When he went to the pharmacy for his tamoxifen prescription he was told the medicine was only for women. When he called for an appointment with the plastic surgeon, the secretary assumed he was looking for an appointment for his wife. Other people’s reactions to his diagnosis have sometimes made him think that they think he is a bit of a freak or ‘perhaps not a man’. He has actively campaigned for changes in treatment for, and attitudes towards, breast cancer in men; he doesn’t want other men to feel embarrassed about going to a breast clinic and strongly believes that men and women should receive the same treatment opportunities. Throughout his illness he has had very good family support, particularly from his wife.
Bill has developed diabetes, anaemia, bladder and bone problems and blames them all on his earlier breast cancer treatment; he hasn't felt well since and takes 15 different medications.
Bill has developed diabetes, anaemia, bladder and bone problems and blames them all on his earlier breast cancer treatment; he hasn't felt well since and takes 15 different medications.
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No, I mean, I’ve very much coming to terms… I’ve come to terms with it, I’m living with it, it’s not… it’s just a path that many people have to take. I mean, I’m not unique and although I feel a bit sorry for myself now and again, but here I went from a position of going to hospital after accidents or because of kidney stones, taking no medication except related to them, to having fifteen things on a repeat prescription. All caused by the cancer, not specifically caused by the cancer but caused by the treatment for the cancer.
Yeah, the domino effect all the way?
It’s the continuing grief from the treatment that people tend to forget. They think, oh no, they’ve cut the cancer out of him, they’ve given him chemotherapy, that’ll be him, fine, and it’s not true. The number of people who must be like me and have constant and continuing problems caused by treatment for cancer…
Yeah, physical consequences and the emotional consequences as well… yeah.
Yeah, it must be a huge number, or a high number of people.
Yeah.
But you have to be… I’m very aware that all my medical problems now can be directly related back to the cancer treatment.
Yeah.
And I must not be unique in that sense.
And do you ever… would you every say you felt fit and well these days or…?
No.
No. So you really feel like you’re living with the legacy of the illness.
I would always say I’ve never felt well for years, because I don’t feel well all the time.
And that’s a real contrast to how you were before.
But it’s not something that I go on and on about. You come here to visit me today after over the last few weeks I’ve had a whole barrage of blood tests indicating things that are high and low, and I’ve had a whole load of symptoms which have worsened. I’m very sore in my bones and can’t sleep. I have serious cramps in my leg. I’m tired, depressed. I feel a bit depressed because I know when…
You recognise that feeling now after…
So I had that feeling that this depression is returning, and they tell me I have low calcium. One day, the next time I have low phosphate, and I’m thinking, well, these symptoms can all be related to that, because I don’t hang about, I do some reading up.
