Living with dying
Support and counselling
Support and companionship are hugely important to those with terminal illness. We heard that family, friends, doctors, nurses, Macmillan nurses, social workers, and others often gave excellent support to those living at home (see 'Care at home'). But sometimes support was lacking. In hospital, doctors and nurses were often too busy to sit and listen (see 'Hospital care'). Though many found support in a hospice or in a day unit attached to a hospice (see 'Hospice day care'), this care was not available to all.
Says that it is easier to talk to people who know about the illness.
It could be a terminal illness but at my age it isn't going to be long anyway, probably. It's a question of coming to terms with reality really and I've had a great deal of help from the Macmillan people and the local District Nurse and my GP has been outstandingly supportive, as have my family as well.
I get lots of kind help and I also go to the Sue Ryder home because I find that it's very much easier to talk to people who are professionals than it is to my friends; they tend to back off. It seems to me that if you're bereaved people's sympathy has got a span of about 3 weeks, and with cancer it feels much the same. It's very much easier to talk to people who know about the illness.
Some people attended weekly or monthly meetings held by various support groups; they valued that they could sometimes give support and advice and sometimes receive help from others. A man who had bowel cancer belonged to a group called Living with Cancer. The group invited a regular speaker, and organised various social events. His wife said that membership of the group gave them a 'massive boost' because they could share their problems with others.
He and his wife describe what happens at their support group for people with bowel cancer.
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.
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 -
Wife' The Carers UK. The local branch -
Wife' - of Carers UK came and gave a talk, which amazed us at how much help is available for carers.
Wife' And there's also been one for relaxation. What's that called? To counteract the depressions that could come -
Wife' - positive thinking and -
Wife' - all that sort of thing.
A woman who had breast cancer also enjoyed weekly meetings organised by her support group, ABCD (Advanced Breast Cancer Discussion Group). She recommended weekly rather than monthly meetings. She had also used a telephone support group, but concluded that it was better to see other people's faces when discussing death and other 'scary stuff,' so that you know how to respond to what others say.
She enjoyed her support group for women with advanced breast cancer, finding it better than...
What's that stand for?
Advanced Breast Cancer Discussion group I think. I mean we did talk about names but we didn't really come up with a name.
But it went really, really well, and the people facilitating the group fortunately kept a sort of a list of what things came up, so they could steer us a bit, cos we got quite sort of heated, really. It was wonderful. When I compare that with the telephone group...
Why doesn't that work so well?
Oh, I don't know. I think... I'd just been diagnosed with the secondary cancer, and a lot of the women on the group... the phone group live all over the country. All ages, but all have been quite ill, a lot iller than me, well, in my, in my opinion, a lot iller than me. Some very ill. In fact one of them died while the group was in progress and after the first couple of weeks I thought 'oh this is good, this is helpful'.
Then I started to think 'Oh God. Is this what I'm going to have?' And of course it was all fairly recent. I started to worry and then I decide I didn't like what was happening. I stayed 'til the end, and I think I participated, and I think I contributed you know, quite well to the group, but I think the fact that you can't see people's faces... If you're going to be talking about things like that... I can't even say in... anonymity can be good in some respects, but I think when you're talking about life threatening things and death and all that I think you have to see someone.
You can't do it over the phone. You can't. You have to see their faces to know how they're responding to what you're saying. And I wouldn't do it again. And I wouldn't recommend anybody I know doing it either. That was just my... thing. I know other people don't find it like that I'm sure, because its not just a one off. That's been an ongoing thing I know.
A few people imagined that support groups would be very gloomy, and some people said that they didn't want to discuss their illness with others. A man with cancer of the pancreas said that such a cancer support group would not be his 'cup of tea'.
Says she wouldn't like to spend an afternoon talking to other people about motor neurone disease.
Well, no-one has told me that, but I'm not a complete fool. I know it won't go away. And unfortunately for me, having got a nature that draws on it, the only thing that I wouldn't do is to go to a group where they're all motor neurone.
When I'm in the hospice there is at least one gentleman in the day centre, who has the same. I don't want to speak to him. Not because I don't like him, but [because] I don't want an afternoon with people talking about illness. But there is no other reason.
One woman, whose husband had multiple myeloma, attended a support group for people with the condition. She didn't find the experience helpful because all the other people were so unwell, so when she developed the same illness she didn't attend a similar group.
She went to a support group when her husband had myeloma but found it 'rather difficult' because...
Some people would find it helpful to be among other people with the same illness. I didn't. And when I got ill myself I haven't been in touch with the support group but oddly enough the other day out of the blue, I thought maybe now that I'm through it I might be able to help somebody. So I've offered my services to the myeloma group in case they would find it useful.
Others wanted to join a support group but couldn't find one for people with their particular illness, or only found out about a group many months later. A young man with a brain tumour was dismayed by the lack of support for people of his age with cancer and he helped to get a support group started. This man also desperately wanted one-to-one counselling. He wanted help so that he could better understand his illness, and where it was taking him, and he wanted someone to help him make his own decisions.
He was dismayed with the lack of support for people with brain tumours.
If you had somebody there with the same condition, same symptoms, or there's someone there to talk to who knows what you're going through - 'cause it's hard to talk to somebody who's on the outside because we know what we are going through and we know what we're dealing with and we can help each other, but there's nothing there.
One-to-one counselling is sometimes available, and usually appreciated although one woman described a rather 'silly' conversation in hospital with someone who may have been a counsellor. A man who had testicular cancer and kidney disease said that he had benefited enormously from his regular sessions with a trained counsellor. He appreciated her honest approach, her promise that she would support him until he died, and the way she had helped him overcome his fear of words such as 'death' and 'dying'.
She remembers a rather 'silly' conversation with a woman who she thought was a counsellor.
There was one stage, yes... there was one incidence. I was in hospital, this was recently, and this counsellor came in and I would say sort of forced herself on me and I had great difficulty in keeping a straight face because I do look upon myself as being very worldly-wise and as I said in full control of my situation. I thought she was rather silly. She didn't look at the person she was talking to and she spoke to me like a child. She said, 'If I may say so, you are wearing the wrong colour. You should wear brighter colours.' And she... what was another thing she said? She said 'You remind me of a duck, quacking on the water and paddling as fast as he can to get away.' And I thought I don't need this. So that is the nearest I have come to counselling.
Oh dear. Have you had any other visitors that you haven't really wanted?
No, this was in the hospital.
I can't say I didn't want her coming in. I mean, obviously I did. She wanted to make a set time and I just took her card and thanked her kindly and didn't follow it up, and avoided her whilst I was in hospital. But I really did think that was... that was silly.
Explains why his meetings with a trained counsellor were so helpful.
Yeah I do very much.
Can you explain how she's different then?
We, we meet at a cancer centre and I can say things to her in the room where we are and I know that it's, it's my time with her.What I found very important was that I'm only, I'm one of a group of people and it's the only time in the week that is my time and she devotes totally her time to me. She has other patients of course but when I'm in there for that hour, hour and a half with her I feel that I can say what I need to say, I can express what I need to express and she's totally focussed on helping me. Whatever she does, whatever she says, is aimed at making things as easy and as possible and as comfortable for me as they can be.
The other thing is we came to an agreement that she would tell me, not necessarily what I wanted to know but what I need to know. I'm sure that when she deals and talks with older patients who may be don't want to know the details and don't want to know the ins and outs but need the sympathetic support, I know that she's capable of that. But the type of support that I need for her is the honest approach of "this is how it's going to be but I will be there with you as far, as long as you want me to be with you," and I find that very, very important.
Others also explained how counselling had helped them to face their frightening thoughts about death.
Explains how a counsellor helped her to talk about things that worry her.
We'd not talked about that before had we?
No. Sorry. Well that was another thing. At the hospice, despite going to the hospice and you know, being there, it's not a place that its easy to have quiet conversations. I mean, you can go off into a little room and things but quite... honestly there's not a lot of time to go off and have quiet conversations for any length of time.
I do still get quite sort of dazed when I feel really, 'Oooh, woe is me', you know, and my life is ruined and all that sort of thing which I think is quite normal and I have bad patches. They arranged for me to see somebody, a counsellor, who I've been seeing since November, just for an hour a week and I find that very helpful. She tries to pin me down and talk about things that worry me. And like I said, I protect my family and my partner, and you protect yourself as well really and you try not to think about things if you think they're going to be upsetting.
Do you talk about that to the counsellor?
Do you find that you can go beyond things? You know, cos we were talking earlier and you were saying there comes a point where you don't want to think any more.
So do you think you're getting pushed a bit too far?
She's got a good memory, so if I don't want to talk about anything more she remembers and brings it up later
Do you mind?
No, because sometimes, by mentioning it briefly something that is frightening, by mentioning it even if you don't go into it deeply then, it makes it easier to approach another time.
Counselling helped her to talk about her fear of death and dying.
And what they're frightened of but you seem to be different in that respect and I'm just wondering how you've managed to be different about it?
I didn't always used to be. I used to hide behind the cloud of death. I would get paranoid about it. It was going to be this, it was going to be that. Then I found I had some counselling talking and all of a sudden I found that my worst enemy was myself, hiding behind, not talking what I was frightened about. And sometimes if you bring a problem out into the open and talk to other people about it you can sort it out.
When you're told that you've got an illness that you're dying from, you've got to make that decision in your mind to talk. It's easy to hide behind a pillow and cry on your own and not tell everybody you're frightened. It's hard to admit that you are. And I should think anybody who's just been told they are now terminal is terrified. The best way to deal with that fear is to talk, to be in control so you call the shots. It's your life. Which is what I've done. I've decided it's my life, I'm going to call the shots. If I want to do something I'm going to do it. If I want to buy something I'm going to buy it. One thing I've been very careful is not to get myself in debt at all so nobody else has to worry about that.
A counsellor had suggested to one woman that she might like to write letters to each of her children to leave with her will or to give to them at an appropriate moment. She found this very helpful. A man with multiple sclerosis had regular meetings with a psychologist, who helped him to enjoy the time he had left with his family.
Last reviewed July 2017.
Last updated August 2014.