Counselling, support groups and religion

If you have cancer, there is a lot of support available to help you deal with the emotional side of your illness. Here we talk to people who have pancreatic cancer about support they get from counselling or talking therapy, cancer support groups, online groups or information and religion.

Counselling or talking therapy

Some people found that counselling had helped. William, for example, said that he benefited from the counselling offered by a local charity based at the hospital. He had some individual counselling and he also went to a useful stress management course which ran for eight weeks.

John found it very worthwhile to talk to a psychologist based at the local hospice. She visited…

Age at interview 57

Gender Male

Age at diagnosis 52

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Did you meet anybody else at the hospice? Was there anybody else in the team there that you could talk to?

There is a psychologist, who has been visiting me at home.

Yes.

On four occasions now. And I find that very helpful for somebody just to speak to as a release valve, where, where sometimes where you maybe build something up inside you and you don’t want it bothering your, your family but in that respect the psychologist then makes it easier just to discuss simple things I suppose.

Yes. Did you ask to see a psychologist or did somebody suggest it?

The consultant who, for the pain management suggested that. They work in the same, they work in the same team, and he suggested that I speak to, it wasn’t compulsory.

But if I wanted to, as he found it was helpful to speak to them, and he was absolutely right. it’s been worthwhile.

And you said the psychologist came here.

Yes, she comes here to visit me. I was willing to go to the hospice, but she prefers us to meet in just like a local or your own environment because it’s more relaxed and.

Yes. And what happens during one of those sessions?

Just a talking session really. Sometimes just about things in general or if I’ve got any questions that may, that may be appertaining to the pain management. Or the pain or whatever. it’s just a general chit chat, as it were.

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After Susan’s mother died she felt that she needed a counsellor because her culture made her feel…

Age at interview 79

Gender Female

Age at diagnosis 46

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Did you find overall the counselling helpful?

It was helpful because I find that, you know, that a lot of the time I’m just not able to talk, talk you know about my Mum, like at work I’m just not able to talk about her.

It, it’s just our culture. But I need to talk. I feel that the British culture doesn’t allow me to express my feelings and emotions as much as I want to.

You say it’s our culture. How do other people react when you, when you said that your mother was very ill. How did they react when you said that perhaps she had cancer or something? Did they find it hard to talk to you?

When, when I broke the news they were okay. But, I just felt I just could not keep you know, you know keep talking about it. And I feel I can’t, I’m not allowed to get too emotional, it’s just the culture.

Mm. So you’d like to be able to talk about her?

Yes.

Would you like to say more about how she passed away etc?

Yes.

But you find that hard because of our culture?

Yes. Yes I do.

So it was nice to have a counsellor you could talk to?

Mm. Mm Yes..

But has that finished now, the counselling?

it’s finished, yes.

Would you be able to have any more if you wanted it?

I’m thinking about it.

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When Anthonys wife, Martine, was ill, the hospital provided counselling and therapy. The counselling was generally helpful, but Martine found the cognitive behaviour therapy unhelpful and not in-depth enough. Not everyone wanted counselling. Ann felt that she had enough support from family and friends.

Ann decided to cope with her cancer by just getting on with life. She did not want to talk to a…

Gender Female

Age at diagnosis 62

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Yes, I think the idea that you’re not dealing with it properly because you’re not facing up to it I think is quite wrong. I’ve decided to face up to it by just getting on with life and that seems to me a perfectly good option of a way to deal with having cancer. I don’t see that you, and there’s quite good evidence now that, you know, that a lot of post-trauma counselling is actually not very helpful. And I, in a way having cancer is a trauma and there is a randomised trial I think of people who’ve been involved in car accidents some of whom had counselling and some didn’t and the ones who didn’t did better. I mean, I’m sure the counsellors would say there’s a lot of criticism of that sort of trial but for me, I don’t want counselling, I don’t want to have to talk through my cancer. It seems to me nothing much to talk about really.

I mean, I, there are very practical things I’ve done like re-do my will, and think about all that, sort out some of my drawers, throw away quite a lot of rubbish and stick in all the photos so they’re up to date. You know, practical things that I want to do, but I don’t think that’s anything, I don’t want to be talking through my cancer and dying. I don’t feel that would be helpful. And I don’t think, I think sometimes people think it’s very negative that you don’t want to do that. Well, I see it, for me it’s positive.

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Support groups

Anthony’s wife, Martine, looked for a support group for people with pancreatic cancer but couldn’t find one. She realised that the best support she could get was through the staff and the group of people she met while having chemotherapy or radiotherapy. It made a big difference that the receptionist knew everybody’s name.

Theadora’s mother joined a cancer support group. The group was for people with various types of cancer, not just pancreatic cancer. John (Interview 40) found a support group at his local Maggie’s Centre.

Johns local Maggies centre was terrific. It helped him to listen to other peoples…

Age at interview 57

Gender Male

Age at diagnosis 52

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Have you been in touch with any support groups?

Yes, initially, when I was diagnosed with pancreatic cancer I was told about Maggie’s Cancer Care Centre.

And although I was told I just didn’t bother, but about six months after my operation my GP suggested that I visit them, and I went there and that was really terrific for me, sitting talking with people with the same cancer, or similar cancers, and the experience they went through and that really helped. And, unfortunately, a lot of people don’t know that places like Maggie’s Cancer Care Centre exists.

And they should be given more time, and effort towards them to help people.

So how often do you go there, have you been there?

Well, I’ve not been for quite a while but I used to go every second day, every third day when I was going for relaxation exercises.

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Vicky had contacted someone who ran a support group for people with neuroendocrine tumours but had not been to a meeting. Vicky’s oncologist had told her about the group, run by the NET Patient Foundation.

Others didn’t want to join a support group. They felt that they had enough support from family and friends. Carol had been to a local support group to find information. She said she might go back so she could help other people but she didn’t need a support group for herself. Simon’s wife did not think of herself as a ‘cancer patient’ and she wanted nothing to do with cancer support groups. After recovery from surgery, other people wanted to forget about cancer and get on with life.

Richard didn’t want to join a support group, regarding them as a ‘double-edged sword.

Age at interview 63

Gender Male

Age at diagnosis 60

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Have you joined any support group for other people with, with cancer? I mean have you joined a hospital support group or anything like that?

No, I regard the, I think, support groups as a double-edged sword. Yes, I’m sure they can be very useful, and, and you can learn things that’ll help you and you can get support from people. I’ve no doubt about that. But the other side of the coin is that you might see things or see people or learn things that you don’t want to know about. And I find that quite upsetting.

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Online support

People also found it useful to join online support groups and networks. Ben communicated online with others affected by cancer. He found Facebook useful and said that people could help each other by providing a ‘Cyber shoulder to cry on’.

When Anthony’s wife was ill he looked at various websites, such as Pancreatic Cancer UK. People with teenagers and young children also found support for their children through the internet. Lesley’s 11-year-old daughter looked at a website called Riprap, which aims to help young people when a parent has cancer. Others found the website of the charity called Winston’s Wish, useful for children too (also see ‘Telling others about the illness’).

As a carer Anthony found it very helpful to look at internet sites such as Pancreatic Cancer UK…

Age at interview 65

Gender Male

Age at diagnosis 56

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Certainly as a carer I did find it useful and found it very helpful to look on the pancreatic support sites. Clearly I hope this video will be on this one, and will be a support to people, but other ones like the Pancreatic Cancer UK, the stories on there I did find helpful. And being able to follow different people’s treatment, you felt there was a community there because as I say there’s, there’s no such thing as a Pancreatic Support group, they just don’t work, unlike breast cancer or prostate cancer, where I think they’re very important. So you do need to look to see where you will get help, and I certainly got help from them.

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Religion

Some people found comfort and support through their religious faith. Audrey was touched when she got cards from members of her church congregation. She decided to go to church regularly and found great comfort from this. Michael’s local church members were ‘brilliant’ in the support they gave him, through their prayers and visits. Others wanted to ‘put themselves in God’s hands’. Dorothy didn’t fear dying because of her religious faith.

Fred could not have managed without his faith. He slept with his Bible under his pillow and knew…

Age at interview 64

Gender Male

Age at diagnosis 63

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Did you look for information anywhere else before the operation? Did you look at the Internet, for example?

My wife did. I was too frightened to, to, to look at things. I didn’t really want to know. I’m religious and I wanted to put myself in God’s hands for whatever was going to come. And that’s what I did.

Did you pray that everything would be all right?

Yes, I prayed like I’ve never prayed before. And I slept with my Bible under my pillow every night. And I know I was being protected.

So has your faith helped you?

Yes, it has immensely helped me. I don’t, I couldn’t have done it without my faith, yes.

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When her mother was dying, Saba would sit by her bed and read to her from the Quran (the religious text of Islam). Saba thought that her mother needed inner peace. Saba asked an Imam (Islamic leader) to visit her mother. He came almost immediately and read from the Quran. As he was reading her mother died peacefully.

Some people didn’t find religion helpful. Bob, for example, did not like it when the local vicar kept appearing at the door. Bob told him that he would call him when he was needed. The vicar asked Bob if he had thought about his funeral and Bob replied that he was not planning on one.

Support from nurses

Here people who have pancreatic cancer talk about the support they got from nurses. Nurses can play an important role in the treatment and support...