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David & Fiona ' Interview 35

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 had not realised how serious his wife’s illness was before the diagnosis. The doctor told...

David had not realised how serious his wife’s illness was before the diagnosis. The doctor told...

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I think probably Fiona was a bit stronger that I was at that point. I found that very difficult. I don’t know if that’s because perhaps she had a, a bit more of an inkling that there was something fairly major going on inside. And whether or not I felt, well I just didn’t realise how major that might have been. I found that difficult. But, I remember at the time being very upset.

I’m sure. How was the news delivered?


Fairly matter of fact. The consultant for her liver, was the person who passed the information to us. And I think it was delivered in, in quite the right way. It was fairly straight forward really. We went to a room to discuss what the findings were. And didn’t beat around the bush, went fairly quickly to what it was. Mentioned words, which needed clarification like a growth, you’re not quite sure what that means. And then palliative care came up and that was a word I didn’t understand.

When you said he explained what the growth meant, what did he say?

I… well I think at that point they hadn’t actually diagnosed what it was in terms of a cancer. But I think cancer was what he was telling us. And but… the precise type of cancer source and all of those things, they still needed to do tests on. But in a very short time, we were talking to the doctor, we were put into the picture that we were in a very bad position.
 

 

David and his wife Fiona had been told there would be a wait to see a specialist after her cancer...

David and his wife Fiona had been told there would be a wait to see a specialist after her cancer...

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To get referred and to get seen at the, at the specialist one wasn’t quite, although I might have suggested that it was like “Right, guys you go there, off you go, you’ve got, you’re in next day”. I actually phoned them up because we were told that there could be a wait. Now, having a wait didn’t seem like a very useful thing to do at all.
 
No.
 
I’m not a doctor but I could see the way my wife was deteriorating was quite quick. OK, a stent went in, the jaundice went away, but we were told that the, the reason for the illness was something different.
 
And it was a bad thing to have, very bad thing to have. And as far as I was concerned waiting wasn’t on the books. So I actually phoned up I, I, the, the name of the person who was the main specialist was, we were told, so I got through to his secretary, to try and find out whether things could happen a bit faster. And a rather deplorable thing is that, these people are under a lot of workload, and as a result things can’t happen at the snap of a fingers.
 
So was there a bit more delay? How long did you have to wait again?
 
Well, there, there wasn’t that big a delay because, having been told that it can’t happen, it then did happen. I got phoned up and said, “Look, there is now a place for you”.
 
Oh good.
 
So that was a huge relief. But I think the delay they were talking about was of weeks, and as it happened it was probably a week in total. But I felt that I didn’t have an option other than to try and push…
 
I suppose it’s push a case for someone but, because you’re so, you know, you’re so wrapped up on the one person in your mind you, but you can sort of step out of that and look in and go, well these guys, they’re, they’re having to deal with an awful lot and at no point do I think that they’re sitting there drinking cups of tea and going off and playing golf and things.
 
Do really do get the impression that they’ve got an awful lot on their hands and they have waiting lists because they can’t get through to people fast enough. But you on the, on the other side of the equation, you want to happen, you want it to happen yesterday.
 
Of course.
 
And I wouldn’t put myself down as a pushy person but I had to, I felt I had to be pushy. Which is an unpleasantness and an awkwardness within
 

David is grateful to friends who supported him immediately after he received Fiona’s diagnosis of...

David is grateful to friends who supported him immediately after he received Fiona’s diagnosis of...

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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 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 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…

No.

…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 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, 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 described the hospice that his wife Fiona went into for respite as more like a hotel than a...

David described the hospice that his wife Fiona went into for respite as more like a hotel than a...

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Talk about the hospice because some people don’t know what a hospice is like.

Yeah well. I, you, 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 the, like it was people for as opposed to functionality and pushing through, pushing kind of people through a medical process. So you go… it was homely. It’s not going to be exactly what you have home but, there was space. Food was good. For those who aren’t effectively the patient, the food was good as well.

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. 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 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.
 

 

Telling the children that their mother might be dying was very difficult. It helped that David...

Telling the children that their mother might be dying was very difficult. It helped that David...

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Well we’ve got two children, both boys. They’re 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.

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, in the fact that I was with one of my sons, [name] who’s the younger one, and [our elder son] was with his, with his mum. And we both talked about the issue and, 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 side of what you’re going through is no longer an issue for you because you’ve done it. And, 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.

They knew, they could give it name. They could, well possibly not relate to it as well as Fiona and myself, but we had a kind of a common cause we were up against. So that was difficult.

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 feeling like we had this huge pressure all the time with us.

Whereas for the children, they seemed to be able to jump in and out of it or go in and out of it, in a different way to the way that we were feeling. But we’re actually hugely pleased that they could play and that they could have fun time.
 

 

David talks to his sons regularly about their mother. Although after three and a half years they...

David talks to his sons regularly about their mother. Although after three and a half years they...

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It’s very difficult, it’s just the pain of the loss. That’s the way I feel now, but I’m three years, three and a half years on and contrary to the fact that I feel quite emotional, things have moved on. We go forward. We do look back. It’s like, with the boys I, we constantly talk about Fiona or their mum. But it’s slightly less now. Before it was like always a topic of conversation. Now it’s less so and, and that’s really good in some respects because we don’t forget, but it’s not monopolising what we’re doing. Because I think that would be, that wouldn’t be too clever to do that. But the boys are doing well.

Good.

I’m doing quite well. Even though I’m crying at the moment [laughs]. And, yeah, we’re, we’re going forward.

But for three, six months afterwards, issues regularly but I just assumed that was kind of normal. I say regularly, I don’t mean throughout the whole day there was tears, but I could be fielding something you know, there wasn’t a period in those first three, six months where I’d think, “Oh, they’re totally over it and they’re, it’s just, you know, it’s normal issues on their mind.” And I could be fielding a, a sudden concern if they see a photo or there’s a thought, there’s memory or something and still now it’s only actually about a week ago [our elder son] who’s now 12 had a moment where he was missing his mum.

Yeah, I’m sure.

And it’s, it is quite interesting because if you’re mind isn’t open to that and ready to link with that i.e. you’re focused on doing something else you actually have to force yourself, because you’re no longer, you know, constantly thinking there, you have to be able to flip to the, to the other person quite quickly to kind of capture that. So, well, we’re three and a half years on, so, but by no means has this a monopoly on our life. It’s just very occasionally now.

Yeah. Did Fiona leave any memory boxes or anything like that for the children?

We put memory boxes together.

Oh, that was nice.

So, yeah, that is good. I mentioned [our elder son] being a bit unhappy, he went to the memory box so that’s three and half years on he went there. I wasn’t aware of these things, it was my sister who told me. So Fiona didn’t sort of want to, she didn’t have this in her mind, but after her death my sister mentioned that. So we had two boxes made by a local, local chap, very nice boxes. And they’ve got a whole load of memories.
 

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