David - Interview 30

Age at interview: 43

Brief Outline:

In July 2006 David's wife, Fiona, was aged 40. It was a shock when she was diagnosed with pancreatic cancer. She had chemotherapy, which was not effective. She also tried alternative therapies. She died in December 2006. Her death was 'largely peaceful'.

Background:

David is a hydrologist (senior consultant). He is a widower and has two children. Ethnic background/Nationality: White British.

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In 2006, David’s wife, Fiona, experienced pain in her back and in her upper abdomen. Previously she had suffered from colitis, so at first she assumed that these pains were due to that. She went to see her GP, who thought the pain might be due to an ulcer, and who prescribed some medicine to treat that. After a while David could see that Fiona was in considerable pain, so he ‘frog marched’ her down to the local hospital for more investigations. At this stage Fiona began to look a bit jaundiced.

 

Fiona had various scans and an endoscopy, during which the doctor inserted a stent into her bile duct to relieve a blockage. This also relieved the jaundice. Initially doctors thought that the problem was due to an abnormality in the gall bladder, but it soon became apparent that there was another problem. The doctor told Fiona and David that they had found a ‘growth’, which was probably a cancer. This was shocking news. Fiona and David found it incredibly difficult to tell their young sons that Fiona had cancer, but they were sure that this was the right thing to do. They wanted to involve their sons at every stage of Fiona’s illness. 

 

Fiona wanted to know exactly what her treatment options were. She wanted plenty of information. She learnt that surgery was impossible because the cancer had spread beyond the pancreas. In August 2006 she started chemotherapy. After three months it became clear that this treatment was not shrinking the tumour. Fiona had the option of taking part in a clinical trial, but she decided not to do so. David thinks this may have been because Fiona wanted an element of control and sense of dignity at the end of her life. 

 

By November 2006 Fiona had lost a lot of weight, she was very tired and needed strong painkillers. However, she was mentally very alert and could make her own treatment decisions. She tried a range of complementary treatments, such as hypnosis, positive thinking, special diets and various vitamins and minerals.

 

Fiona was keen to stay at home as long as possible. Family, friends, local nurses, the Macmillan nurse and the GP all helped in her care. About a week before she died Fiona moved to the local hospice. The health professionals there helped with pain control and other aspects of her care. At this stage Fiona felt that the hospice was the best place for her. The atmosphere was calm, relaxed and friendly, and visitors could stay at any time during the night or day. Fiona passed away on 6th December 2006. Her death was ‘largely peaceful’. In some ways David felt glad when Fiona passed away because he felt that at last she was at rest. However, he felt devastated and still feels tremendous pain because he misses her so dreadfully. He feels a huge sense of loss. 

 

Fiona helped to plan her own funeral, which was well attended by family and friends. She was buried in the local cemetery. David and the boys have wonderful memories of Fiona. Now, three and a half years on, their memories and their discussions about Fiona do not monopolise every moment of the day. The boys have memory boxes, which they sometimes open when they miss their Mum. 

 

From the time Fiona was diagnosed with cancer David found that friends and family really wanted to help and that they still want to help whenever he asks for assistance. He recommends that other people in his situation ask for help when they need it. 

 

David was interviewed for Healthtalk in 2010 

 

 

David and Fiona told their young sons about Fiona's cancer. The boys were upset but at times seemed to forget the serious situation and played normally.

Well, we’ve got two children, both boys. They were both at primary school at the time. They obviously knew that Fiona was unwell. And you have a … you’ve got a lot of difficult things going on…..

 

And one of the difficult things is how you tell your children [crying].

 

Yes. … Did you have any help with that? Did anybody advise you?

 

No, because we dealt with it quite quickly. Dealt with it…. Both Fiona and myself were, we were both of the same mind etcetera. We didn’t want to, we didn’t want to hide things away. Neither of us thought that was the correct way of going about it. 

 

But we wanted to … when we told the children we wanted it to be when we knew what it was. So rather than before the diagnosis, rather than saying, “Oh it might be this or it might be that”, which I think to a child would be quite scary, I think probably for children, knowing what it is that’s affecting their mother was what they needed to hear. So once the diagnosis was there, we did speak to them and we let them know that it was a cancer. I think because we weren’t exactly certain what type of cancer, we couldn’t put a … the pancreatic term to that. But we, we did tell them and it happened in a rather unplanned thought out way. And in fact I was with one of my sons, [name] who’s the younger one, and [our elder son] was with his mum. And we both talked about the issue and described the issue, without actually knowing the other one was doing the same at the other side. And I think it’s probably … well it’s almost a bigger issue to the parent when you do this because I think you have the feeling of the gianormity of what you’re saying, whereas the child is obviously concerned, worried about what’s going on….

 

But doesn’t fully understand or appreciate what you’re saying even though, I can talk for what I said. I said that it was very serious and this could be a very serious thing for his mum. And that there is a prospect that one outcome could be that she may die. So that’s a very difficult thing to go through. 

 

But once it was done that’s, that, that side of what you’re going through is no longer an issue for you because you’ve done it. And there was you to concentrate on, the important things of what you’re going to do and, well going forward from there. And I think it’s … I, well looking back on it, I’m a bit upset at the moment but…. 

 

Would you like a break?

 

No it’s ok… I think it’s probably for us and I can’t speak for other people, it’s the right thing to have done. And I think for the boys and I’m saying us as in the family, the four of us, I think that was the right thing for the boys as well. 

 

And how were the children when you told them about it? 

 

They were upset…. I found with the children, I think children react probably in a different way possibly to adults. I think it hits them and goes hot and cold. They can be very upset one moment and then playing with their toys the next, which is quite surprising I think because for Fiona and myself we were, we were feeling like we had this huge pressure all the time with us.

 

David's wife, Fiona, tried various complementary therapies. She changed her diet and used supplements including vitamins and minerals.

In terms of food and things, we also looked at nutritional things. There seems to be a very big literature out there which talks about good foods, bad foods, in terms of cancers. So, we followed those which seemed to be, we, we didn’t just follow one person saying you’ve got to do this, we kind of looked at it …

 

Yes.

 

… And there seems to be families of foods which are good. So, things like fruits which, the redder, the darker, red fruits all seemed to come up scoring quite highly, so we went for that. I was open-minded, and I think that Fiona was open-minded but quite kind of, quite determined to follow through on the good things. So, probably a slightly greater lead from Fiona than myself, we never really sat down and said, “What do we think really works here?” We, it, it kind of just all morphed into a way of, of being and I think we just felt that we’ll tackle this whichever way we can. And we were fairly open-minded. So we had the kind of nutrition, foody things that we were doing. Things like fried food was off the agenda. 

 

Then you’re moving into kind of the, the vitamins and minerals and the food supplements of which there is a big literature. So we looked at those things and we managed to end up with quite a few containers of capsules and the like. And we were quite open to our GPs, the other medical people, it’s like we told them, “Look, we’re open-minded to this”. I think probably we asked them, “What’s you view?” I think their view was, they were slightly open, well fairly open-minded and that they wouldn’t be able to tell us, yes/no on these things. And that goes with the specialist care at the hospital where we received the more traditional kind of stuff. I think our worry was that you’d get conflicts and people saying …

 

 “Whatever you do, don’t do that”. Or, “If you do that you’re going to worsen this.” We didn’t get that.

 

Good.

 

Which I think was good. 

 

David's wife Fiona was very ill, found it hard to eat, was sick, constipated, had fluid retention, and was sleepy, but her mind was unaffected.

Although Fiona was physically quite deteriorated, she was still thinking very clearly so...

 

How physically deteriorated, was she in pain? Or, or what? Was she just tired or...

 

Well, [coughs] there is pain. And she’d been on painkillers for a good deal of the time now and she was receiving painkillers automatically. So, in terms of pain, yes, but that was being controlled.

 

Was that a morphine pump?

 

Oh yes, yes, yes, she had other painkillers before but she was on to morphine, but in terms of deterioration of the body she was now, well, I suppose you would say, haggard, drawn, not the person she was six months before.

 

Had she lost a lot of weight?

 

She’d lost a lot of weight, her complexion was an ill complexion. Somewhere between grey and yellow which is not nice. So physically, I mean she was in a wheelchair. But in terms of upstairs and mentally, she was still very with it. She, she would be quite sleepy, but when she was not sleepy she was still very much herself, clear thinking person. So, when approached or discussed, this trial, I was very comfortable to allow her to ask the questions that she needed to know...

 

Also she was finding it very difficult to eat and she was being sick or attempting to be sick quite a lot, a lot of the time. Now that didn’t just occur near the end, that had been going for a little while. 

 

But that and also … well it depends …it’s like in terms of bowel movements that almost stopped and there was constipation, things happening from some of the things she was taking.

 

So that in itself was a handful. But I think she had deteriorated anyway. She had to go into hospital and be drained a couple of times. And it … though I suppose the cancer was running its course and she was quite weak. And being able to, to manage that here was difficult. Not so that … well for me I was now off work.

 

After David's wife died a gathering was held in the village hall, with lots of flowers, great food and lots of people. He was sure Fiona would have wanted that.

And was she buried? 

 

She was buried in a local cemetery. The boys were there as well. It was a very large number of people there. So it was really split into three bits. You had the, the church bit, you had the burial bit and then there was a gathering, some people might call it a wake. Not quite sure what I’d call it, but we had the village hall and in terms of the day, well probably, I think Fiona probably thought more about many of those aspects than the kind of ceremonial aspects. 

 

Did she plan that as well?

 

Yes, I think she’d kind of thought about that and she certainly had a flavour and it wasn’t to be sad. 

 

Did you have a memorial stone or something like that?

 

As a, like a gravestone, yes. But that comes all a bit later in the process.

 

I was just trying to muster up kind of the right words to describe the, the kind of like the wake. Lots of flowers, lots of great food, lots of people and it was, went I think from Fiona’s view as much a social thing as a standing round glum-looking thing. And it went really well. 

 

Good.

 

And there were quite a few children. And there were children dashing around having fun [crying] …. And that was all the way it needed to be. 

 

When David's wife was ill he turned to friends for support. They responded to his despair, and helped with the children.

Yes, I just, I was just thinking about what we went through and partly what happened to me and slightly how I coped. Early on, immediately after diagnosis, I managed to have a, a bad moment at a friend’s house where I basically I couldn’t speak and I was very upset. 

 

And this was before, this was actually immediately after the diagnosis so most people didn’t know it. And the two people who, the house that I was in, the two people there were very good because I, I had a huge howl …

 

.. and it let an awful lot out of me and they were very kind, supportive, she actually comes from a kind of, a caring kind of profession so I think she probably understood my upset-ness. So doing that I think was a bit of a release in some ways. The other thing, and again it’s, it’s kind, it’s a support issue, you have lots of friends but there are certain people who during the course of what we went through I found more useful. But I don’t mean they’re better friends or anything... but you will, I think you will find that there are some people who you connect with, or they connect with you and that is really important because I think that they, they have a, not a full understanding but they, the empathy, empathy is right there. And the thing with friends is that when you’re going through this it before this I probably wouldn’t ask too much of people but when I was there I just put every, all those kind of inhibitions to one side and in my mind I just said, “Look, I will ask people.” People were saying to me all the time, “You’ve got to ask us.” 

 

And I did. And that’s really, really useful to do that. And people genuinely want to help. And as a result there, you, you find that there are friendships, at the time which are so helpful. And if I had advice, which seems a strange thing to say, if I had advice it would be, accept that, those offers of help, of friendship, and really don’t worry. It’s like, we’ve got children, if I needed the children to be looked after, straight on the phone and just ask someone. Before Fiona was unwell I’d have found that difficult, I was imposing.

 

People want to help. They genuinely do. And that can be very helpful. 

 

David's wife went into a hospice a week before she died. He said it was 'completely the right move'. She was comfortable and pain was well controlled.

So it … well at the end of , well at the end of November Fiona was not in a good place in terms of her … how well she was now coping with her health. So we, we decided it was time to use the hospice, and it was completely the right move. 

 

Was it mainly pain control that was difficult, which she needed more help with?

 

Pain control, definitely that was awkward. I think the pain control they, they managed it pretty well. But as things moved on the pain level or the degree of pain with her body was increasing. 

 

I think I probably had a view that it would be a bit like a hospital but with more flowers. So it’s still very medical kind of minded. It wasn’t anything like that actually. It’s a rather nice building, really quite modern. The décor was nice. The décor was like, like it was for people as opposed to functionality, and pushing through, pushing people through a medical process. So it was homely. It’s not going to be exactly what you have at home but there was space, food was good, for those who aren’t effectively the patient the food was good as well. 

 

Yes.

 

And you can be there for much of the time, most of the time. So it’s not like a hospital and you’re chased away and things like that. The boys joined us. The boys were … now the boys had been good throughout. I say they’ve been good, they … they, it sounds a bit daft but to have travelled this journey they had done remarkably well…. So it was, to Fiona and myself it was obvious that the boys are going come to the hospice. There was no kind of, oh perhaps they shouldn’t go. 

 

And at the hospice we could stay the night. The room she was in was a family room. So one night all four of us were there [crying]. 

 

That’s good. 

 

And the staff were very, very good. I think in a hospital all the staff are under pressure to get things done i.e. their, their work patterns are a bit different. In the hospice it was actually all quite light, light-hearted. 

 

Did they control any pain she had very well, did they care for her well?

 

Yes. I think the ability for, for Fiona as a patient to control her pain was enhanced by being at the hospice. 

 

They were, well they were always there, not like hovering, but if needed they were there and it would be fairly immediate. But well I think people at the hospice are the … it must be very difficult job. 

 

But they do it very well.

 

So I stayed I think every night bar one. The boys joined us on one night. Fiona was, I think she was a lot more relaxed and I think she recognised that because there’d been a decision to, to go there, I think once she was there, she freely admitted that this was nicer for her. And we had, we had quite a nice time there actually. 

 

That might sound a bit strange but in terms of I was no longer worrying about having, being on top of any medicine that she required or painkillers.

 

I didn’t have to be chasing anything else. It was, I had more time. Fiona was more comfortable. So to say we had a nice time sounds really daft. But it was a … a good time [crying] 

 

How long was she there altogether for? 

 

It was about a week, about a week. And she died at the end of that week.