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 of people who have cancer. This includes NHS nurses and those who work for cancer charities like Marie Curie or Macmillan.
Virtually all the people we spoke to said how useful it was to be able to call the nurses. Specialist nurses in the clinic and Macmillan nurses make a point of giving patients a phone number which allowed direct access.
Palliative care nurses
People with pancreatic cancer that can't be treated will be offered palliative care. This is care that treats the symptoms of an illness and side effects of treatment. It aims to give you a better quality of life. You might meet nurses from charities like Macmillan Cancer Support or Marie Curie, or from the NHS.
Steve's Macmillan nurse helped him obtain Disability Living Allowance, and answered his questions about issues he might face at the end of life.
Steve's Macmillan nurse helped him obtain Disability Living Allowance, and answered his questions about issues he might face at the end of life.
Age at interview: 47
Sex: Male
Age at diagnosis: 47
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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 provide lots of help and support in addition to traditional nursing duties. Steve and others told how their Macmillan nurse had helped with benefits applications.
Phil contacted a Macmillan nurse who visited him at home to discuss his needs and applied for state benefits on his behalf.
Phil contacted a Macmillan nurse who visited him at home to discuss his needs and applied for state benefits on his behalf.
Age at interview: 50
Sex: Male
Age at diagnosis: 50
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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.
Gosh.
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 his life. She also helped him to understand what palliative care means. Other people told how Macmillan nurses had organised support groups, 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 it was reassuring to know that they could reach the Macmillan nurse if ever things became more difficult. They could talk to the nurse about painful topics.
However, Saba felt that seeing a Macmillan nurse hadn’t helped her mother. She said she found it hard to talk about emotions with a stranger when English was not her first language.
The Macmillan nurse told Lilian about regular meetings in the town for people with cancer. The nurse answered questions there.
The Macmillan nurse told Lilian about regular meetings in the town for people with cancer. The nurse answered questions there.
Age at interview: 74
Sex: Female
Age at diagnosis: 74
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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.
Specialist cancer nurses
Different specialist cancer teams had their own nurses working both in the clinic and at patients’ homes. They 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 get a grant from Macmillan, to help support him while he wasn’t working. Other nurses specialised in palliative care were based either in the specialist clinic or in a local hospice.
Richard's specialist nurse was most important. She answered questions, reassured him, and helped him make appointments.
Richard's specialist nurse was most important. She answered questions, reassured him, and helped him make appointments.
Age at interview: 59
Sex: Male
Age at diagnosis: 58
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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
District nurses gave help and support too. After operations, the district nurse visited them at home to remove staples, change a dressing, or check a feeding tube. They also gave injections to help with pain (see ‘Professional care’). Davinder’s district nurse had helped her get much-needed equipment for her room so that she could look after herself more easily. Ben’s district nurse called regularly to see how he was getting on.
After Ben had surgery the district nurse called at his home to remove the staples from the incision. The nurses also listened to Ben and offered support.
After Ben had surgery the district nurse called at his home to remove the staples from the incision. The nurses also listened to Ben and offered support.
Age at interview: 40
Sex: Male
Age at diagnosis: 39
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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?”
Last reviewed November 2020.
Last updated November 2020.
Next review November 2023.
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