Stories of Cancer
Giving Voice to Real Experiences

Desperately seeking support

I dreaded the idea of chemotherapy, with its sickness and baldness. At the meeting with the surgeon he said chemo might be necessary but wasn’t prepared to say any more than that – it was up to the oncologist that I was being referred to. He/she would discuss the options with us. I said that I wanted to be able to continue to use complementary medicines, like homeopathy and herbs, and wondered aloud whether the oncologist would be supportive of this. He said he would refer me to someone who he thought would be okay with it. I was still shaken from the shock of the cancer being grade three, the most serious grade, beginning to realise that I was in for the long haul, and just hoped that I would get someone I could trust.

In the meantime, I wanted emotional and practical support, to help me make decisions. I wanted expertise and I wanted to meet other women. When we were introduced to Jane, the breast care nurse, I’d hoped this would be part of her role, but I was to be disappointed. When we met up I had lots of questions for her, but she didn’t seem to have any answers.

“My arm’s still stiff from surgery, can I get some physiotherapy from somewhere?”

“There’s nothing on the NHS these days, I’ll give you the number of a private firm”

“I’m really scared of chemo, any advice about how to get through it?”

“They’re really good these days with the anti-nausea medications, you’ll be fine, some women sail through it”

[later I get really sick of hearing sentences that begin with “some women…” and – how do I get to be one of those women who “sail through it”?]

“I want to meet other women, are there any support groups running locally?”

“There used to be a support group here but I don’t think its running any more, don’t worry you’ll meet people when you get to the cancer hospital, and there’s lots of notices on the boards there”

“I’ve heard of the Bristol Cancer Care Centre, and like the sound of it, maybe I’ll think of going down there. Have you heard of it?”

“Oh you don’t want to go there, it’s only for people who are much sicker than you” (I assume she means terminal)

After this I give up, and leave after asking her to let me know if she hears of any support groups that I could join.

In the months to come, remembering this conversation annoys me more and more. Terry refers to it frequently as this isn’t the first time she’s shown her lack of up to date knowledge about services. She also told us that he would be able to stay with me all the time at the dedicated breast care ward when I had surgery, when in fact the breast care ward had closed 7 months previously and it was now a general ward with limited visiting hours. It felt that no was the answer to each question I asked. I came to the conclusion that getting emotional support, or referrals to complementary therapies, isn’t the role of the breast care nurse. Each time we went to the cancer hospital I looked for support group notices, calling in at the information centre there, only finding information about support in places miles away, eventually believing there were no local groups.

Some months later I discover the local charities, including a day centre which is part of a local hospice, in fact located within the same hospital where I had surgery. Complementary therapies are also provided there, and on the team is a specialist physiotherapist who sorts out my arm (long after I’ve spent money on Jane’s private people!). Then I discover another centre where I can also get free complementary support and do courses on healthy living.

When I do one of these courses, about six months after the conversation with Jane, I meet a woman who tells me about the support group she’s a member of, which runs from the same office that Jane works in, from the same clinic where I got my diagnosis, minutes away from where I live! There are only four of five nurses working from this office: how could she not know about the group? Or did she decide it wasn’t for me? If she did how dare she? Later, to cap it all, when I eventually go to the Bristol Centre I find out that they are keen to support people from diagnosis onwards. Maybe I shouldn’t have taken everything Jane said at face value, but I was vulnerable and didn’t have the energy to double check everything I was being told. She was supremely ill informed about what was available. Anyway, now I had other things to think about. The dreaded chemo for one.