Simon & Karen ' Interview 37

Age at interview: 39

Brief Outline: In 2007 Simon's wife was diagnosed with pancreatic cancer. She was aged 39. She started the TeloVac trial. The chemotherapy was effective but the vaccine was not. She had more chemotherapy and also complementary therapies. She died peacefully in 2009.

Background: Simon is a teacher. He is a widower and has two children. Ethnic background/nationality' White British.

More about me...

In April 2007, Simon’s wife, Karen, experienced severe pain in her abdomen. This happened after the birth of their son. The pain was around her middle and going into her back. The doctor suspected an infection, so prescribed antibiotics. A nagging pain continued and the GP thought it might be irritable bowel syndrome.

In July 2007 Karen decided that she wanted to see a consultant, so the GP referred her to a consultant who saw private patients. Karen had an ultrasound scan, which showed that there was something wrong with her pancreas. The consultant referred Karen to another consultant, who did an endoscopy and took a biopsy of Karen’s pancreas. This consultant told Simon that Karen had an enormous cancerous growth. This was a huge shock to Simon. He did not tell Karen immediately because she was recovering from the anaesthetic. A few days later Simon and Karen returned to see a consultant oncologist (again privately), who told them both the devastating news that Karen had terminal cancer and that an operation was impossible and that she probably only had two years to live.

Simon and Karen dreaded having to tell other people about this terrible news. Neither of them really believed that death was a possibility and Karen said that she was convinced that she would recover. Both Simon and Karen slightly resented the pessimistic attitude of the oncologist, but looking back Simon realised that the doctor had no choice. Simon spent a great deal of time on the internet looking for possible treatments.

Within a few days Karen started chemotherapy as part of the TeloVac trial. The chemotherapy was very effective and from the scan it was evident that the treatment had shrunk the tumour. The chemotherapy, as part of the trial was given to Karen in an NHS hospital. The treatment made her feel very sick for a few hours afterwards. However, she did not lose her hair.

After about 12 weeks of chemotherapy (one day a week in 4 week cycles- three weeks on and one week off) Karen stopped the chemotherapy and was given vaccine treatment, but the vaccine was not effective (her tumour markers went up) so she soon stopped the vaccine. Looking back Simon had mixed feeling about Karen being on the trial. He said that he felt that Karen was being treated as ‘data’ rather than as a ‘human being’ (because looking back he realised that the doctors knew that Karen was going to die anyway).

Karen went back to regular chemotherapy, this time given to her in a private hospital. She liked the environment at the private hospital. During this time Karen was still convinced that she would beat the cancer and recover. She went to London to see another consultant. This was partly for a second opinion and partly to ask him about the possibility of CyberKnife treatment. CyberKnife uses pencil beams of radiation which can be directed at any part of the body from any direction via a robotic arm. This consultant did not offer them any hope of recovery and his attitude and manner was upsetting.

Karen was determined to survive. She consulted a doctor (an ex-GP) who sold products such as Carctol, an Indian plant extract, and also vitamins and minerals, which she said might be beneficial. This doctor gave Karen and Simon enthusiasm and optimism. Karen spent a great deal of money on these products, and Simon is convinced that the doctor’s attitude and the products that she sold helped to prolong Karen’s life. However, he feels suspicious about people who make a living by selling to people with a terminal diagnosis.

Karen also consulted a therapist who practiced the Bowen technique, and she saw a spiritualist healer at regular intervals. Karen did not want to be seen as a ‘cancer patient’. She did not join a support group and she did not seek any counselling. Simon, on the other hand, did have some counselling to help him cope with the traumatic situation. He felt that he needed to talk to someone. He found this counselling invaluable.

Karen went on with the chemotherapy until about November 2008. She stopped the chemotherapy because of the side effects and because it was affecting her blood count.

Karen was in pain all the time, but at first she did not have any other symptoms of pancreatic cancer. After about six months she started to have chronic diarrhoea, which was very distressing. She took Creon, but this did not really help. By the end of 2008 she also retained fluid, which made her stomach distended. Sometimes she had to have this fluid drained off her abdomen.

By this time Simon had stopped working because he wanted to have time to be with Karen. They went on a skiing holiday, which was spoilt because Karen was vomiting. Looking back Simon wishes that they had consulted their GP and the local palliative care team for advice. Eventually they found that there was an injection which helped to cure the vomiting.

Karen gradually got weaker, and then the GP and the community nurse team got involved and they were wonderful. By mid January Karen was housebound and needed more care. Karen needed more pain relief, including morphine. The nurses cared for Karen and they also provided support for Simon. They were a ‘life-line’. Karen got thinner and thinner and needed more drugs for the pain. At times she became confused and was hallucinating. Eventually she drifted in and out of consciousness. Karen died peacefully at home on 6th February 2009. Simon arranged the funeral, which was exactly as Karen would have wanted. It was well organised and very moving and inspiring. During all this time Simon had huge support from his parents and his sister.
 

Simon had mixed feelings about the way the consultant delivered his wife's terminal diagnosis but was grateful that she showed humanity.

How was that? How was that consultation managed?

 

Well it was, looking back it, it was, it was managed probably as well as it can be. Because I understand about, more now about what they have to do, they cannot pull any punches I think, I mean you know so I understand now but at the time it feels like it’s managed badly because, well I’m still very mixed. I think that if someone is going to die, and that’s a foregone conclusion and the consultant knows that they are going to die, and there’s nothing you can do about that, in a way I don’t see any harm in pulling the punch slightly to start with. You know on the basis that if you, if you give the news at least gradually to an extent you just soften the blow. I mean in a way I don’t see the harm in that.

 

What did the consultant say then?

 

She said that, you know you go into a little clinical room, on, off a corridor, and sit down and she took a nurse with her. She in fact took two nurses with her this time, you know so by this stage I know that if someone takes a nurse with them it’s serious.

 

And she said, very matter of factly, she said, “Well you know,” along the lines of, you, it is cancer and it is malignant, and she said, it’s in your pancreas and we can’t operate. I think fairly early on she said, “We can’t remove it.” And then you know so you know, I then said, “Well, okay so you can’t remove it, but,” and she said, “Well we can give you chemotherapy to contain it.” So I then said, “Okay well, so you can contain it then indefinitely?” Because it, you know, you just, I think you go into shock and you clutch at straws, and she said, “There is only so long that you can contain it for you know, it will develop but we, but we can’t get rid of it.”

 

And I think I then was carrying on with, “Okay, well we’ll contain it then.” So she, I think she knew then that the message wasn’t getting through. But the way the, then she just, she then just said, I think it was along the lines of, you know, “You’re looking at, you know, another two years, and basically you need,” she said, “Basically you need to make provision for your children now.”

 

So that was quite shocking.

 

And that, it was that phrase, just stuck with me all, you know even, even now I just think, it was sort of too, she wanted, she was using a shock factor to make the point. And I was, I’m very mixed, I’m very mixed because you know she would’ve known that we’re, that as soon as she told us the news you go into shock. I mean you go into a deep shock where you’re not really thinking straight. And maybe they’re trained to, you know maybe, I don’t know, but then you, maybe they use shock to sort of shock you out of it. You know the equivalent of slapping someone’s face. Where she you know, and she knew that mentioning the children would make it real.

 

The other thing I do remember is that she actually sort of almost welled up at one point. And I was so glad actually, that obviously that sounds horrible, I don’t mean that I’m glad that she was upset, it’s just that that level of humanity you need because it’s so clinical.

 

And they’re so well practised in delivering the news, that when she sort of slightly welled up because she’s, she had young children, in fact she was pregnant when she gave us the news so she must’ve felt for Karen. They were probably of similar age so she must have felt for Karen qui

After learning his wife's diagnosis Simon felt he was burdened with carrying a bomb because he knew what a shock it would be for the family.

It felt to me like carrying a bomb. It felt to me like carrying a bomb that if I opened my mouth would pull the pin, you know. And it was, you know as though we were, as though I was sort of cradling this news.

Who did you feel you wanted to tell first? Who?

Oh well I didn’t want to tell anyone. I mean I, it was a case of we were going to have to tell, my parents were here, they’d come to look after the children. While we went to the appointment. Or I think it was just my mum actually and, so we knew that we had to tell them. And Karen’s family. But it was a case of have, we had to, you know. We, we didn’t want to tell anyone. Because we knew how, we knew what a shock it was for us. Or this is how I felt at least that it was such a shock that I didn’t want to burden anyone with that.
 

Simon found the Winston's Wish website helped them to talk to the children about their mother's death.

You said that you got help through Winston’s Wish for how to look after and deal with the children, support the children. Would you recommend to other people they got in touch with Winston’s Wish?

Absolutely. Yeah. There, there may be other similar sites but that was one that was recommended to me and it was just the practical advice of what sorts of things can you say to a child. Some of it I sort of knew anyway, the idea of, of not creating metaphors around you know in our case cancer, don’t call it a name. Don’t you know, don’t create metaphors that aren’t true because that will, so all that sort of thing is in there and it, and it, just very useful practical advice. How to deal with children was it, what I used it for because that was the only thing I just was totally unsure of what to do.

It has lots of nice ideas about memory boxes and you know all that sort of thing. So just lovely, I would yeah I would recommend anyone with any kind of bereavement. I recommended it to a friend of mine recently who’s got young children dealing with the death of their grandfather. And he said it was useful.
 

Simon described how the palliative care nurse would come in whenever his wife needed her pain medication even if they were in bed.

So yeah, it was just this sort of very, very strange lifestyle really of people. Literally in the middle of the night, because sometimes she would have, she wanted her pain relief just before bedtime, so sometimes we would be in bed, and I’d have left the front door open, and the nurses would let themselves in. They’d come upstairs, knock on the door, I’d be in bed with Karen, she you know, she had all sorts of things propping her up by this stage and they’d come in and give her, her pain relief and let themselves out.

That was an injection?

Yeah. Yeah.

Did they ever suggest that you might give her an injection?

No. No.

But they’d, they’d come whatever time you need?

Yeah.
 

Simon's wife eventually had to use a hospital bed which they had in their front room.

She was in our bed, so basically I was sort of spending half the time in a spare room, just to make sure that I got some, some decent sleep. And she was given a special sort of mattress to sit on because it got to the point where she was on a lot of morphine for the pain. And spending so much time in bed obviously is, is bad for you because you get these sore points. So she was on a special mattress.

And, and then gradually she got more and more ill. Then we got a hospital bed brought in which you know, for, which had an electronic lifting mechanism. So that they could, because her positioning was painful. She still had a very distended stomach, but they couldn’t really drain it anymore.

So there was a lot of discomfort and also the nurses were struggling to sort of deal with her. So gradually it moved from the bedroom to the spare room to the hospital bed, and then eventually downstairs, in the, in the front room on the hospital bed.
 

Knowledge and understanding can help take away the fear. Simon found the website 'Winston's Wish' helpful in explaining the illness to his 3 year-old daughter.

So what did you tell the children all this time?

They, our son was only four months old when she was diagnosed.

So he was largely unaware. My daughter was three, and we told her that it was called cancer. We told her that there was a lump in Mummy’s tummy. And that she was going to hospital to have medicine to try and take the lump away I think. You know we didn’t want to give it any funny names. This is where resources, such as, well would I, I don’t know if I should mention names but a website, Winston’s Wish, was useful. And also the hospital were good at giving literature as to you know some of the basics, and where to find information. And I thought it made sense to me that you shouldn’t make up strange names or, or analogies, or metaphors for this for a child, because that can actually end up you know sort of confusing things. So we just told her honestly.

And so she understood, you know the way children do. They, they take everything on you know as it is so she understood why Mummy was being sick. She understood why Mummy had to go to bed. She understood why she couldn’t go in and see her. One time or I think one or two times she came in to see Karen in hospital because we didn’t want her to be scared. You know she knew that Mummy went there and that she came back different, so we wanted to take that fear away.
 

Simon was upset when the registrar said she had to keep the cause of death form signed by the GP. Simon considered her inhuman and officious.

Yeah I mean the nurses were there so they, they did that for me and then I think they phoned the GP straight away. And at some point she must have come round to officially declare Karen as dead and to fill in I think a bit of paperwork at that time. Not that I had to be involved in any of that but she needed to come in and sort of ascertain that she was dead. And which, I didn’t mind, I knew that they’d have to do that.

And then did you have to go and register her death the next day or, did you have to go somewhere?

Well you’re given a time period of maybe two weeks, that was that was pretty awful I must admit because, well there’s a whole new story of doing that because it’s at the same registry office down the road that we registered our marriage in.

And the woman dealing with me, I went in with my sister and the woman dealing with me just was socially inept and she was she was just utterly clueless. I had a certificate with me signed by the doctor, the original certificate and the woman said that she would need to take that. And I wanted to keep it. Because it was symbolic, this was my wife’s death.

And she said, “Well you’ll get a copy blah, blah, blah,” and I you know and I was saying, “Well no, I don’t want, I want, you know I’d like this one.”

And she’d already just been very officious; I mean the whole thing was just very officious. You know considering I was registering my wife’s death, there was less than, well I don’t know it was only days previously, their attitude was you know the same as when we were, register your marriage.

They were very officious about this being a very legal thing and just inhuman. I mean I was gobsmacked. And, and it started to upset and annoy me, you know being a bloke, being upset actually made me frustrated.

So I think I was already feeling very sort of just awful about the whole thing. And then she started arguing with me about whether I could keep this thing, and I was saying, “Well could you do a photocopy for me?”

And the way that she dealt with it was just very abrupt and very defensive. I mean she, you know, I don’t want to get too psychological but she was so defensive that she got aggressive with me about, “This isn’t your property,” and blah, blah, blah. And it was the most awful, awful exchange I’ve ever had.

Given the circumstances and we didn’t have a sort of stand-up row, I was just sort of being assertive, but it was just very, very disappointing. So, they did send me, I never filled it in but I wish I had, they sent a questionnaire a few weeks later about, “How was your experience?”

Oh.

And, I really, if I’d had more time I really could, would have liked to have spelt out to them how they need to do some training. You know. But anyway.