People we interviewed were well supported by family and friends (see ‘Support from family and friends’). They also admired the consultants responsible for their care and were grateful for the support from their GPs (also see ‘Professional Care’). However, it was rare that consultants or GPs offer them the number of their direct phone line. This contrasted with specialist nurses in the clinic and Macmillan nurses who made a point of giving patients a phone number which allowed direct access to the clinic. Virtually all the people we interviewed mentioned this as an important source of support to them and their family.
Nurses involved in palliative care can have various titles. The charity Macmillan Cancer Support provides ‘pump-priming’ funding for many palliative care nurses. These nurses call themselves Macmillan clinical nurse specialists, or ‘Macmillan’, often even after charitable funding ceases. Some specialist palliative care nurses are funded by the primary care trust or hospital trust and may be known as ‘hospice nurses’. Others are named after local hospice charities, such as Marie Curie, Iain Rennie or Hospiscare.
Steve is an office worker (retired due to ill health). He is married. Nationality/ethnic background: White British.
The Macmillan nurse talked through end of life issues, we’ve been able to talk with her honestly about how it might be to feel unwell. But to be honest we met the Macmillan nurse in the hospital and subsequently the Macmillan nurse has visited us here in our home a couple of times. The first time was to talk about the fact that I was now diagnosed with a terminal illness. The second time was to help us with the DLA [Disability Living Allowance] application. But really we were able to say to her, we don’t feel the need to speak to you regularly at this stage because I’m not unwell yet, but I think when I start to feel more unwell then I’ll certainly pick up the phone to her and say, “Look things are getting a bit worse, you know, would you come round and see me and let, reassure me that this is normal. That, you know, this is expected maybe.”
And I feel very reassured that I’ve got a good GP and that the Macmillan nurse is there to talk to, to be honest, and say you know, “What is it going to be like to be seriously ill, to be dying? To actually you know be bed bound?” Or I feel reassured that I can actually ask people you know, “What would it feel like to be dying?” That’s very reassuring to me. To be able to talk to people honestly and frankly about it.
These nurses have many roles in addition to traditional nursing. Steve and others told how their Macmillan nurse had guided them through the benefits applications (also see ‘Financial and Other Practical Issues’).
Phil is the manager of a betting shop, but is not working at the moment due to ill health. He is married and has a son. Ethnic background/Nationality: White British.
And where have you looked for support? Apart from your family I guess?
Yes I’ve, I’m very lucky sort of with family and friends, sort of very supportive and involved, but the best thing I did was contact the Macmillan nurses, and they’ve been very helpful. Kind of, my company aren’t very considerate and I only get statutory sick pay, which obviously is quite a financial strain.
R' But the Macmillan nurses sort of went through all the benefits I could be receiving, and sort of claimed them on my behalf, so they’ve been very good. I recommend people…
Can you remember what, can you remember what those benefits are called? Because other people might not know about those.
There’s my, I get a disability benefit of £70 a week. And a carers benefit of £50 a week. And that, this was actually back dated from when, and she put in the claim for me. So that makes quite a lot of difference.
Mm. And that’s not means tested is it?
No, not at all.
And how did you find the Macmillan nurses? Did somebody put you in touch with them?
I was told kind of to get in contact with them sort of, that they were the best people to kind of go through. And we just picked up the forms and there’s a local one, fairly close to where I live, where they’re based, and we contact them and they came out to the house and interviewed me and my wife and kind of discussed our needs and what they could do for us. And they’ve kept in contact with us, they sort of, even though they’ve got the benefit’s sorted out, they’ve phoned up. They get reports on how my progress is going.
The nurse had helped one man ‘to get to grips with the great change in one’s life’. She also helped him to understand what palliative care means. Other people told how Macmillan nurses had organised support groups (see below), answered questions, helped them to get pain relief and dealt with dressings. The Macmillan nurse helped to mediate when one man’s family members had disagreements. Helen said that she could rely on the Macmillan nurse for help. Several people including Steve and Dorothy said that after the initial contact it was reassuring to know that they could reach the Macmillan nurse if ever things became more difficult: this was someone to whom they could talk about painful topics. However, Saba felt unhappy that when her mother was dying she had not appeared to benefit from seeing a Macmillan nurse because she had found it hard to talk about emotional issues with a stranger in a second language.
Lilian was a doctors' receptionist before she retired. She is married and has two children. Ethnic background/Nationality: White British.
You said that your husband has been very supportive. Have you sought help from anywhere else? From any of the cancer support groups?
Well, Macmillan’s actually got in touch with me.
We have a local Macmillan nurse and she contacted me. But it was rather funny because she kept phoning me leaving messages. I kept phoning her leaving messages. This went on for weeks. Eventually a month ago we did meet up and in the local town they meet up once a month in a little hall by one of the surgeries, and they have a little get together. There are people there who have lost someone recently from cancer, or they’ve got cancer, or like George will come with me, their partners go along with them. And it is quite a nice little get together; it’s only a couple of hours. And you can, if you’ve got any very serious problems the Macmillan nurse is there. And she likes to meet you because, well, just in case I ever need her, then she’ll know who she’s coming to see. But there’s a very supportive system for cancer patients. Not just pancreatic cancer in in this little community.
Different specialist cancer teams had their own nurses working both in the clinic and at patients’ homes. They too gave out their phone numbers and email addresses and were available to provide support. A specialist nurse sat in on Dorothy’s consultations with the consultant and was then ready to go over anything that worried her afterwards. Adrian’s specialist nurse helped him obtain a Macmillan grant, which was useful because he wasn’t working. A Macmillan grant is a one-off payment for adults, young people or children with cancer, to cover practical needs (see Macmillan Cancer Support). Other nurses specialised in palliative care were based either in the specialist clinic or in a local hospice.
Richard was a finance director for a multi-national company. He is now retired. He is divorced and has three children. Nationality/ethnic background: White British.
And I have to say that the, the team I dealt with in oncology have been absolutely superb in terms of the information that I’ve had. Their ability to answer questions. And one of the most important people in my treatment has been my specialist nurse, because obviously one of the things that happens when you’re undergoing treatment is that you sometimes feel less well than you want to. And you don’t quite know whether that’s serious or not. And the great advantage of the specialist nurse is they’re used to dealing with people who are having your treatment. And, certainly I found that they’re absolutely invaluable to me, and I think to the doctors too, in terms of being able to reassure you when there isn’t anything very serious, but also expediting things quickly if you’re not feeling well, and saying, “Oh come on in, I’ll arrange for you to see someone today.” Or, “Why don’t you come into clinic in a couple of day’s time?”
So you can just ring them direct?
Absolutely. And so I have a specialist nurse who I use, who I ring on the telephone. And the other thing I do is use e-mail. Because sometimes when they’re busy during the day, I can just fire off an e-mail first thing in the morning, saying, “I’ve been feeling a bit nauseous,” or whatever it is, “should I worry about it?” And they can come back to me when it’s an appropriate moment in their day. So that’s worked very well indeed.
And I think that more and more hospitals are having specialist nurses as part of the team, and certainly it’s worked brilliantly for me, in terms of just, just reassuring me that what I’m going through is normal. And as I’ll come on and talk about in a moment, when things haven’t been going quite so well, making sure that I got very speedy treatment.
District nurses gave help and support too. After operations the district nurse visited them at home to remove staples or to change a dressing, or if they had a feeding tube, to keep an eye on it. They also gave injections to help with pain (see ‘Professional care’). Davinder’s district nurse had helped her to obtain much-needed equipment for her room so that she could look after herself more easily (see ‘Potentially curative surgery’). Ben’s district nurse called regularly to see how he was getting on.
Ben was a Care Worker before he was registered disabled and had to retire due to ill health. He is married and has 4 children. Ethnic background/Nationality: Black British.
So anyway we got this discharge after the four weeks. Everything went well.
Came home to stay with my mum because obviously, we had stairs so it was easier for me to stay here than me try to climb stairs. So mum helped out and had the children to come and stay here and my wife and that they all came as well, sisters, my brother was around, good family support, friends and so on. And then with the job I was working in community the community care, the district nurses who came out to remove the staples, were actually people who I help them look after the... And one of the guys who I was quite good friends with turned up on the Saturday morning to take the staples out and that. “I’ve come to see so and so.”
Come to what?
Come to see come to see me but he didn’t realise it was actually me who he was coming to see.
Oh, I see.
So he was like, “Hello, mate. What happened?” I said, “Well, here I am still fighting, slow, you know, just unfortunately it’s me you’ve come to see.”
So we had a good chat then and that made it easier as well because, obviously, I’ve known him from the past with working in the community and that so I we had a good little chat and he took the staples out. And then, two or three weeks later, the district nurses were there for support as well as making sure the wounds were clean and no problems. And they said, “Well, there’s nothing else we can really do for you now. Is there anything you want? If there are any problems in the future, just give us a call.” I said, “Well, instead of discharging me from yourselves why don’t you just come out every two weeks or I can phone you every two weeks and give me an update on how things was.” And the team leader said, “Yeah, that’s no problem.”
So we’re still in contact from say February last year to now, they come out every three months now or if I need anything, I can also ring them.
Because my motto is, “If you’ve got something in place and you know you will need it in future, why discharge yourself from it?”
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 attended a useful stress management course which ran for eight weeks.
John was a shipwright before he retired in 2007 due to ill health. He is married and has two adult children. Ethnic background/Nationality: White Scottish.
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.
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.
Age at interview:
Age at diagnosis:
Susan is an administrator/secretary. She is divorced. Ethnic background/Nationality: White British.
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?
Would you like to say more about how she passed away etc?
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.
When Anthony's wife, Martine, was ill, the hospital provided counselling and therapy. The counselling was generally helpful, but Martine found the cognitive behaviour therapy very superficial and unhelpful. Not everyone wanted counselling. Ann had enough support from family and friends.
Ann is married with 3 children. She was a GP for over 35 years til her retirement when she developed pancreatic cancer, co-founder of the charity that runs healthtalk.org inspired by her own experience of breast cancer, and Medical Director of the Oxford University Health Experiences Research Group. Ethnic background/Nationality: White British.
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.
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. Maggie’s Centres are places for anyone affected by cancer. Maggie's is an independent charity. There are Maggie’s centresin various parts of the UK.
John was a shipwright before he retired in 2007 due to ill health. He is married and has two adult children. Ethnic background/Nationality: White Scottish.
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.
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, The NET Patient Foundation, a charity in the UK & Ireland that offers information and advice to people with neuroendocrine tumours.
Others didn’t want to join a support group, feeling that they had enough support from family and friends. Carol had been to a local support group to find information, and said she might return so that she could help others and ‘give something back’, 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. Others, having recovered from surgery, wanted to forget about cancer and get on with life.
Richard is single. He is a teacher (now retired). Ethnic background/Nationality: White British.
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.
The internet was another source of support (see ‘Finding information’). Ben used it to communicate 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’).
Anthony is a retired education officer. He is now a part time hospital chaplain. He is a widower and has two grown up children. Ethnic background/Nationality: White British/South African.
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.
Some people found comfort and support through their religious faith. Audrey, for example, 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 was a college lecturer until he retired in 2009 due to ill health. He is married and has 4 adult children. Ethnic background/Nationality: White Scottish.
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.
When Saba’s mother was dying she used to sit by her mother’s bed and read the Koran. Saba thought that her mother needed inner peace. Saba also found a friend, an Imam, and asked him to visit her mother. He came almost immediately and read from the Koran. As he was reading her mother died peacefully.
Religion was not always seen as a source of support and irritated some. 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.
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