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Explains that the hospice nurse has been very helpful and suggests that people should not be afraid to call on hospice nurses.
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When [name of husband] first came home and [name], the hospice care nurse, wanted to come round, at first he said “Oh no, no, no” because hospice care, or Macmillan is synonymous with, "That's the end," you know, you know my last. But when we persuaded him to let her come, he was so glad, because she has given him a different outlook, you know. She explained to him that just because it's hospice care it doesn't mean you're on your last legs. But she's the one who can help with things just outside of the medical -
Yes.
- the practical care.
Yes.
She's been so helpful. And I would say to anyone, don't be frightened, just because it's hospice care; don't be frightened to let the person in. |
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He and his wife describe what happens at their support group for people with bowel cancer.
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Wife: He found that there was no one to talk to -
Yeah,
Wife: - and he felt alone. Then when he'd get a problem other people'd come out of the woodwork and say, “Ah yes, I've got this or that cancer” and he found there are quite a lot of people he knew had different cancers.
Oh really?
Patient: Yeah, yeah.
Wife: - so, it -
So they all got together.
Wife: He said, "Well let's start a group" and it's gone from strength to strength. We meet once a month and usually have a speaker on some aspect that's going to be helpful to some of the people. We all find it interesting, and then between times we have social events when we go out and enjoy ourselves and the 'C' word is banned sort of thing.
You talk about other things because we've had our serious meetings and to talk to other people, just around locally and know that you all share the same problems is a massive boost.
So family members go as well.
Wife: Yes. It's usually couples isn't it?
Patient: Yes. There's a carer for everybody, so yeah.
Wife: Husbands and wives go along.
Can you tell me what... which subjects come up at the group?
Patient: I organised one speaker one night, and I asked the stoma nurse and the colorectal nurse. Now the colorectal nurse takes over when the stomas are reversed, so I'm under her now. So those two came along and I'd like to think that's been the most informative meeting they've had. Yeah.
Wife: They've also had -
Patient: Carers.
Wife: The Carers UK. The local branch -
Oh right.
Wife: - of Carers UK came and gave a talk, which amazed us at how much help is available for carers.
Yeah.
Wife: And there's also been one for relaxation. What's that called? To counteract the depressions that could come -
Patient: Yeah.
Wife: - positive thinking and -
Patient: Yeah.
Wife: - all that sort of thing. |
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His wife says it is important to accept help from friends and neighbours as well as professionals.
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Wife: If people offer to do errands for you when you're busy you know running backwards and forwards to hospital or just early days when caring takes more of your day, say yes rather than no.
Do you think some people are just reluctant to ask for help then when its offered?
Patient: Yes.
Wife: In my case it's a... I've always coped and 'oh no I don't need help' but when you stop and think about it, that help makes a lot of difference. Because you…
You're really at the point where it's like people are willing aren't they?
Wife: Yeah.
And you've got to pick up on their willingness.
Wife: You've not got to be afraid to say, “Yes please” and take it. You know just a little help makes so much difference.
And often people want to help don't they?
Wife: Yes. And if you push them away they might not come, they might not offer again or they might be reluctant to come just to visit because they think you've put a shell around yourselves.
Yeah, you've kind of rebuffed them?
Patient: Yes. |
