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Donna - Interview 08

Age at interview: 54
Age at diagnosis: 53
Brief Outline: Donna was diagnosed with pancreatic cancer 7 months ago after a prolonged period of vomiting and abdominal pain. The tumour was inoperable and she decided against chemotherapy. Her only treatment has been anti-nausea tablets and pain control.
Background: Donna is married with 3 adult daughters. She is a housewife. Ethnic background: White British.

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Donna went to her GP repeatedly with vomiting, abdominal pain and unintended weight loss. She had had irritable bowel syndrome for years before that and her GP seemed unconcerned about her symptoms. One day her usual GP was unavailable so she saw a different one, who referred her for tests. While waiting she took a turn for the worst and the GP called an ambulance. By this time Donna had become jaundiced so it was assumed she had a liver problem and was treated accordingly over an 8 week stay in hospital.
 
During this time she had various scans and an ERCP (endoscopic retrograde cholangio pancreatography). They found a cancer on her pancreas and inserted a plastic stent to prevent it blocking her bile duct. The consultant explained that she had an inoperable pancreatic tumour and therefore a short life expectancy. She was offered chemotherapy but after a week’s deliberation decided against it because she was too ill to withstand it, a decision which her consultant supported.
 
Donna then stayed with a daughter but was admitted to a hospice for pain relief. After two weeks she returned home but her pain worsened so she went back to the hospice. Pain relief has been delivered in various ways including via lollipops, which she enjoyed because of their lemony flavour, a syringe driver and morphine injections. A nerve block was also attempted but not completed.
 
Donna is home again but managing pain relief has been difficult since her pain is now unresponsive to all forms of pain relief except morphine injections and she often has to wait several hours for a district nurse to respond to a request for the next one. Her husband has today learned how to do the injections himself, which will improve her quality of life. The cancer has spread to her liver and she takes anti-nausea tablets daily to counter nausea and vomiting.
 
Donna is visited regularly by her GP and a cancer specialist. Her husband has had to give up work to look after her so they are living on state benefits. She knows that she will die but has adopted a positive attitude and tries not to think about the future. She feels sad that no treatments were available to her and wonders why more research isn’t being done into pancreatic cancer.
 

Donna was interviewed for Healthtalk in 2010  

 

Donna had pain, was vomiting and lost three stone in weight but at first her GP did not take her...

Donna had pain, was vomiting and lost three stone in weight but at first her GP did not take her...

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How it came about was I was getting a lot of pains in my tummy. I was feeling generally very unwell and I kept saying to my GP that I didn’t feel well and that I was getting all these pains in my tummy and that and he wasn’t really taking a lot of notice. He wasn’t taking it on board at all. He just kept nodding his head and nothing much was happening. And I got really, I got worse and worse and then my husband phoned the health centre for an appointment and this particular doctor wasn’t available. So we went with another one that we’d not been to before. He took a different viewpoint on it entirely and he was very worried about me. He was looking at my condition and he examined me thoroughly and he said, “Something is not right here and I’m going to send you off for some tests.” 
 
Well, while these tests were going on, I suddenly took a turn for the worse. I’d been vomiting constantly as well was the other thing. I couldn’t keep anything down. I’d been vomiting literally, you know, constantly throughout the day. Towards the end, you know, just nothing stayed down whatsoever. And finally, my husband was so worried about me, I’d had an appointment made with my GP and I was just too ill to get out of bed to make it. I was hurting. I felt sick. I, you know, I just didn’t think I could get there. So he went for me and he said to the doctor, “You’ve got to do something about her because she’s in a terrible state.” And he said, “I’m going to send her to hospital.” And he phoned an ambulance and by the time the ambulance arrived I’d started to turn bright yellow. My face was going more and more yellow as between our house and the journey to the hospital. And when we got there the doctor said I was one of the most yellow looking jaundiced people they’d ever seen and they immediately assumed I had something wrong with my liver because of it. 
 
 

Reflexology made Donna feel very relaxed. She also tried aromatherapy but found the smell of the...

Reflexology made Donna feel very relaxed. She also tried aromatherapy but found the smell of the...

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What was it like when you stayed in the hospice to have your pain control?
 
I was bored. The hospice was lovely. They were very kind in there and, you know, they did all that they could to make me comfortable but, you know, it was a lot of elderly people in there and quite a few dying as well and it was just a boring environment for me and I couldn’t wait to get out of there. But the actual place itself was, is very nice, you know, the way it’s laid out. There are lots of nurses per patient. Far more than in a hospital, so medical, you know, drugs and things are available a lot quicker to you if you need them and they have more time to talk to you and that. And they’ve got various alternative therapies that they offer you such as reflexology, massage, aromatherapy and they do classes like pottery and bead making. So there are things that you can do but even so, the hours did drag.
 
Did you have any of those complementary therapies?
 
Yes, I did and I had few of them, especially reflexology, which I loved, which was foot massage. That was wonderful. It made me feel so relaxed.
 
Had you ever had it before?
 
No, it’s all new to me. It was very, very nice. It’s the only thing I miss, actually.
 
Did you have anything else?
 
Aromatherapy and I had just straight forward massage once.
 
Any good?
 
Not bad. I wasn’t keen on the aromatherapy because I found the smells a bit overpowering. The massage I liked but my favourite was definitely the reflexology.
 
 

Donna was very upset when the district nurse did not arrive for hours and so could not give her...

Donna was very upset when the district nurse did not arrive for hours and so could not give her...

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Can you tell me a bit more about the problem with the district nurses, without mentioning any names?
 
Well, we found that the trouble is with it is when you phone them up ideally you would phone them and then they would turn up within the hour, but that wasn’t happening, it was taking, you know, hours and hours for them to arrive and the pain was getting worse for me until it got intolerable. And then when I was getting the injection it wasn’t as effective because I’d had to wait so long. I mean the longest wait I had was six and a half hours and by then I was ready to climb the walls. It was just awful. But there was no way round it, you know, they couldn’t make a special case for me although I was prioritised, apparently, but somehow it never seemed to get through to the people at ground level, that I was a priority case.
 
And what were they like when they did turn up? Were they nice or…?
 
Oh, very nice. They were lovely ladies that did the injections, you know, very efficient, very kind, you know, couldn’t fault what they were doing. It was just the system that was in place, unfortunately.
 
 

Donna went into a hospice for a while so that doctors could control the pain. Then at home her...

Donna went into a hospice for a while so that doctors could control the pain. Then at home her...

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And I came home and I was home for about a week and a half but I was in terrible pain. I didn’t actually go to my home. I went to my daughter’s house because we had building work going on here, but while I was there I developed terrible pain that the painkillers weren’t helping. And the palliative care team were coming out and keeping an eye on me and the palliative care nurse suggested that I went to into a hospice, which she said they could get on top of the pain for me and help me. So I went into the hospice for a couple more weeks and it did get on top of the pain and I was able to come out and sort of resume my life and I had, I was doing things quite well at that point. I was going out and getting dressed every day and, you know, doing lots of stuff, going out to the market, going round friends’ houses, you know, I was in pretty good condition. 
 
But then I started to go downhill again and I was getting a lot of pain again and I had to go back into the hospice just recently for another week and a half just to get on top of this pain again, strengthen the injections that I was having, basically. And then they’ve let me home and this is the point I’m at now, where I’m home taking injections each day, two to three times a day, which sort of keep me okay, keep me sort of pain-free. It’s been a rough ride because we were waiting for the district nurses to do it and they could only come out every six hours or so, and by then I was climbing the wall with agony. But my husband has been taught how to do the injections now and he’s just learnt today, so it’s been really good. He’s done it fine and that’s going to open up a whole new life for us. We’ll be back to being able to go out again and do what we want to do.
 
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