Peter - Interview 13

Age at interview: 62

Age at diagnosis: 62

Brief Outline:

Peter was diagnosed with pancreatic cancer eight months ago after losing weight and having stomach pains. He has recently finished a course of radiotherapy with chemotherapy tablets and is awaiting a scan to find out what effect it has had.

Background:

Peter is a retired sheltered housing officer, he is married with two adult children. Ethnic background: White British.

More about me...

Peter went to his GP with stomach pains which he thought were an infection. Six months later, two courses of antibiotics had made no difference to the pain. He was referred to a gastroenterologist ( a doctor specialising in the disgestive system) who sent him for a series of endoscopies and breath tests. He then had CT scan and biopsy and the doctors found a tumour on the tail of his pancreas. The doctors said that the tumour could not be operated on.

 

Peter had also lost weight. At first this happened slowly, then more quickly after the stomach pains started. He had thought his weight loss was due to stress at work. A dietician gave Peter advice to help him put on weight. Peter had diabetes and a lot of the advice was the opposite to what he was doing before, to manage his diabetes.

 

He was given radiotherapy each week day for 6 weeks (with a break for Christmas), and capecitabine chemotherapy tablets. The treatment made him nauseous so the dose of his anti-sickness medication was increased. He also had painful constipation. His stomach pains continued throughout treatment, sometimes with a rumbling stomach too. They stopped for a while after treatment but soon came back. An anti-nausea medication he was prescribed upset him, but he found that a supermarket brand of anti-indigestion medicine worked for him.

 

Peter is due to have a scan in two weeks time to find out what effect the treatment has had on his tumour and whether more treatment will be needed. 

 

He has retired since his diagnosis and plans to make the most of what time he has left. He lives off his pensions, housing benefit and disability benefit. He has a car, which will help him to do some of the things he plans to do. Peter’s marriage is breaking down but he has support from family and friends.

 

We spoke to Peter in 2010

Peter had several endoscopies. On one occasion the doctor did a biopsy. Peter does not recall any discomfort or pain.

Well I know that some people have bad experiences having endoscopies but I never had any bad experiences, didn’t feel anything at all. Because what, what they do, you, you lie on a, on a bench, well, bed, and they introduce a camera, little camera thing on a tube and stick it down your throat. But they give you a choice. You can either have an anaesthetic or, or you can have a numbing thing to relax the muscles of your throat. The disadvantage of having the full works is that you have to have somebody to accompany you home afterwards because you might be a bit dozy. I think I had both at different times because I had several endoscopies, but I never had, I never felt any discomfort or pain from any of them as an aftermath, I didn’t feel a thing, didn’t feel a thing in fact. Didn’t feel the thing going down, didn’t feel it coming out. I was quite comfortable. But I think I was lucky because I think some people do experience adverse effects but fortunately I wasn’t one of them. And, and they were very attentive, again, the staff there, making sure that I knew what was happening and, and fussing around me, you know, like a mother hen round her chicks. It was, it was quite a good experience all in all, really.

 

And, and also, I know people go on about waiting and waiting in hospitals but I never found that I had to wait too long, you know, to be seen. Not more than I would have expected anyway, like within half an hour. So that was OK. And similarly I had x-rays done as well, and that was the same kind of experience.

 

So one occasion when they were doing an endoscopy they also took a biopsy?

 

Hm.

 

Presumably you didn’t feel that either?

 

No, even, even though that involved a needle extracting a portion of tissue. That was OK, fortunately. 

 

Peter's wife seemed unemotional when he told her about the diagnosis. She never went with him to the hospital during his treatment.

So has your wife helped you at all with your illness? Has she been with you to hospital or anything like that?

 

No. In fact on a number of occasions when I’ve come back from seeing the specialist or whatever she hasn’t even asked me how it went. And she’s also now suffering from a degree of, well I wouldn’t like to label it as dementia because that would be a, a medical pronouncement, but certainly symptoms of, serious episodes of forgetfulness. Like, for example, if I’ve been to the hospital on a number of occasions she’ll refer to me having gone to college. “How did you get on at college?” would be one. And she may not even remember on, on some occasions that I’ve actually been there. She doesn’t even know where I’m going, where I’m coming today. Didn’t ask me about it. She said, when I got dressed up in a jacket and tie, she said, “Oh it must be something important”. But that was as far as it went. 

 

So I take it she wasn’t even with you when you got your diagnosis?

 

No. 

 

How did you go about telling her?

 

She wasn’t with me, not with me physically, all through, throughout the six weeks course of treatment that I had I went there on my own on every occasion. I did ask her once, I said, “Would you just like to come and see where I’m going and what goes on there?” And, but nothing happened. It didn’t happen. 

 

So how did she react when you told her what was wrong with you?

 

Not sure that I can remember precisely. I think she may have been somewhat matter of fact about it. As I recall. She certainly didn’t burst into floods of tears, neither did she throw all her clothes off and go running round the garden naked whooping for joy, but no, I suppose, matter of fact is the best way I can think of it really.

 

Peter had no support from his wife. Members of his own family supported him, but needed to be reassured that the situation was less bad than they feared.

So what do you do for support? 

 

…. Well, there’s my family who have since the diagnosis been very supportive, and there was a family get together at Christmas 2009, I went down to [the town] where most of them live, had a get together and when I spoke to one of the family members afterwards she said that after I’d left everybody burst into tears. So that kind of gave me food for thought, because that indicated to me the strength of feeling there was about what was wrong with me, and one of my granddaughters, for example, was very, very upset, and was full of tears, mistakenly thinking I was going to, like, die within a few days. And I had to go with her into the kitchen at my sister’s house and I had to have a talk with her and try to make her understand exactly what was happening and what the likely outcomes were going to be, and reassure her. So, in a way, I’m getting support from them but I’m also having to provide reassurance for them, to explain the facts as opposed to what they may or may not know or assume, you know, about whatever it is I’ve got and what’s likely to be the outcome. Interesting that it’s a two-way thing really. 

 

But the main thing is I, I know that I can call them up and talk to them, and also I have a couple of friends who’ve also had cancer and I’m able to indulge in a kind of mutual support system with them as well. I can talk to them and they can talk to me about, you know, how they’ve been and how I’ve been and, and so it works like that. But I can’t, I can’t talk to my wife about it at all. She gets angry if I even talk on the phone to someone else, because she says that’s all, all she ever hears. So she gets a bit fed up with it, to say the least.

 

Peter decided to get as 'much out of life as possible' before he died. For example, he was determined to join the National Trust and to visit all their properties.

In my, in myself, as far as my attitude and my reaction to all this is I’ve always been a positive person and I remain so. In fact more so because I’ve made this conscious decision that I’m going to get as much out of life now as I possibly can, given that I don’t know how much longer of that life I’ve got left. And I may have been sleepwalking a bit in the past, prior to diagnosis, but since, but post diagnosis I’m determined to do as much as I can, although I am restricted to some extent by my energy levels, because some days I make plans to do things and then I have to cancel them because I just don’t have the, I just don’t have the stamina to carry them out. So that’s where we are right now at this moment. So it’s a year later now. It’s now a year since I, since I started having problems and around about eight months since the actual diagnosis was confirmed. 

 

And the, the idea of retiring, I wouldn’t even call it retirement really. It’s not retirement from life, it’s just extricating myself from the madness that is daily office life and the world of emails and [laugh] being, being told that something is wanted yesterday, and all the stresses that that involves. 

 

As an example, I have for a number, a number of years had this idea in my head of joining the National Trust, which I think a lot of retired people tend to do, and I haven’t had the time to do it before, but I’ve, I’m now determined to join the National Trust and then I can go and visit all their properties, of which they’ve got 300 or something in the country. 

 

And I may say that my lifestyle is, and will be, considerably enhanced by the fact that I’ve now got a Motability car; the mobility element of my Disabled Living Allowance I swapped for a brand new car. And for those people who don’t know, I get insurance, tax, servicing, breakdowns all covered. All I do is the government takes back about £49 a week, which is the mobility element of my DLA, and in return I’ve got this brand new car, and all it costs me is petrol. This is going to be my passport to a future life, whatever the future holds, because I’m now much more mobile obviously. I can get to and from places much more easily and the National Trust being one example, and my plan is to maybe find somewhere to stay overnight if it’s far enough away, so I can stay in a nice hotel, go and visit National Trust property and I will not be comfortable with being idle, because I never have been. I’ll have to find something to do, and I’ve also put my name down to volunteer with the National Trust as well, driving their electric buggies to and from, which I need a full driving licence, which I’ve got. 

 

And for me personally, as I’ve spent 30 years out of the last 33 years caring for and being concerned about other people, I cannot switch that off entirely, but I’ve now got to the stage where I, I don’t feel guilty now about worrying about myself. I’m more concerned about me than I, than I used to be. And I think there’s nothing wrong with that because my time has come.