Simon - Interview 26

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 was interviewed for Health Experience Insightsin 2010

 

Simon was with his wife when she received the diagnosis. They had to tell his parents that day but didn't want to burden others with their news

I think we both felt the sense of having a horrible secret. 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, 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? 

 

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 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.

 

And so we just went to, you know a field near here and sort of went for a walk. Just to try and well, you know you feel like you can’t feel your legs. You feel like you’re floating. We went to, we went to a pub, near there to, just to, for something to do, because you don’t know what to do with yourself. And we went to the bar and neither of us could talk. We, it was almost embarrassing. We went to the bar and the barman said you know, “Can I help you?” There was no-one else in there. And I suddenly thought, “I can’t think.” I couldn’t even; I didn’t even know what I wanted. I didn’t know what to say. I looked at Karen and she was, she just looked at me, and she was the same. And you know, and I had to sort of really force myself to sort of be able to be normal and order a drink. Phew. Its, it’s just, so... Eventually we had to come home, you know, there was no way, there was no way round it. I mean and gently I think, you know, just sort of said, “Well there is a growth.” And I think there were tears then and, but they, aah the, I think the children were in bed by then. It had been an afternoon consultation but of course we’d, we’d taken a few hours to get home. So the children weren’t there and yes it was, it was quite emotional then. I don’t think we talked about it being terminal at that point.

 

When Simon and Karen told their daughter about Karen's illness they did not make up names or use analogies or metaphors. They were honest.

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 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 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, 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 looked at the internet for treatments that might help his wife. He found useful information, such as details about the TeloVac trial.

Did you find some sites more useful than others?

 

Yes. You see a lot of, I noticed Hugh Grant mentioning, mentioning the sort of number of sites that are not very helpful. I mean I’m lucky that I teach psychology and therefore I’ve got a background in you know, I know how to recognise a more academic paper. So I know, I was able to filter things out. But you quite quickly learnt there’s an industry you know, of, there’s an industry on the back of people dying. And so a lot of the, a lot of the websites are wanting you to, you know, get involved in their products. But I mean I was looking for information, but even then the information you get, you need to be very careful, as to who’s written it, and why have they written it, you know. And you know it is a quagmire. I mean I spent hours and hours and hours and hours and hours trawling through, and I think I’m lucky that because of my background that I knew how to recognise serious papers. And I had the time and the know how to sort of even explore them.

 

So if I saw a paper then I would go into, then I’d be looking into their names and finding out who these people were before I even started reading a paper, so I knew I had to trust it you know. So, so I did find some very good information like the Telovac trial, you know I learned all about telomerase and the Telovac trial itself. I looked up reviews of the trial itself, academic papers. So you know I was just lucky really that I could do all of that. And I mean I had to, I was driven, you know. Karen didn’t want to know because she was, she’d be seeing her spiritual healer, while I’d be looking at academic papers. She didn’t want to know. She didn’t want to know facts and figures. She wanted to know of any research which was positive.

 

Simon and his wife Karen found the atmosphere in the oncology clinic rather depressing. Karen disliked having the needle inserted.

Can you describe what happened during a sort of typical day of having her chemotherapy?

 

In the early days at the, at the NHS hospital you know, you walk into the waiting room full of you know sick people. A big waiting room, it was quite a busy department really. And we always felt very uncomfortable there and, quite sort of, I don’t know, what’s the word, sort of self conscious in a way as well because Karen was you know, for someone with cancer was very young. She was only 39, so we were younger than most people there. And she also looked well. I mean even, even months into her treatment, after months of chemotherapy she looked as well as anyone else. I mean she was just so physically healthy and fit. So we’d sort of go in there, these sort of, you know we felt relatively young, healthy looking people. 

 

And I always felt slightly self conscious, but also just depressed by the atmosphere in there because it’s just, it’s just not nice. I mean you know people are friendly, and we, but we didn’t really want to, Karen never saw herself as a patient. So she was never going to be one of these who would go into the waiting room and get to know people, because you see the same faces every week. But she was never going to do that. She, we would sort of stay on the outside and just read a magazine and try and take our minds off it.

 

And then going to the, you know the chemo room, which was very odd the first time I, we went in there because, it just looks like another, well I suppose it looks like a treatment room, but just with armchairs. And there were just people casually sitting there, reading magazines, with a drip in their hand. And again, being ignorant as to really what goes on, what chemo was, I always thought you’d be in a room with all sorts of equipment and, so it seemed all very low key.

 

And you know she would sit down, they’d go through all the paperwork, checking her name and double checking and all that sort of rigmarole. And get her hooked up. She never liked the needle going in, it always hurt a lot. And I think she was just tense you know. And then it was a case of just sit there with the machine next to you pumping away, beeping away, and I would sort of sit with her and we’d talk and try and take her mind off it. There was a lovely woman who used to come round and give us biscuits and you know get drinks. 

 

Do you know what her chemotherapy was called?

 

Yes, she had gemcitabine and another one that I can’t remember now.

 

Capecitabine?

 

Yes. Gemcap yes, that was it. So she had both.

 

So she had that for a few weeks first of all?

 

Yes. Well this was, this was on the trial so it was, I think it was twelve weeks of chemo. But it was every, they were four week cycles so I think it was three weeks on and then one week off.

 

Both Simon and his wife, Karen, visited a therapist who practised the Bowen technique. Simon thought it was quite powerful.

You know she was also seeing, seeing a therapist who was using the Bowen technique, and he was, he’s, you know he’s in that whole world of complementary health so he had some product that she was, that he was getting for her as well.

 

What is that? 

 

Bowen, I’ve had it done so I know. It’s actually quite powerful really. I don’t know quite what it’s based on, what actually happens is that you lie on, on the table and there are certain, it’s all based on probably, goes back to Chinese medicine maybe, there are, there are certain areas of the body, pressure points or whatever, that he sort of manipulates for a while. And then will just sort of touch a particular area and then stop. 

 

And, so I remember sort of chuckling to myself really thinking I’m paying money for this, and he was sort of you know would just lightly touch one area of your body. And then go off out of the room [laughs]. You know and go and make a cup of tea. And then come back and do it again. But I must say that it sort of seemed quite powerful.

 

When Simon's wife was very ill she spent a lot of money on various products, including vitamins, minerals and Carctol (Indian herbs).

Yes. It was, I did you know mentally decide to join her on the quest. So I didn’t allow myself to think negatively. Even when I saw the data, because it all boiled down to a similar picture really of life span, life, you know expectancy etcetera, given what she had. But I also then, you know, focused on any glimmer of hope. And that’s when you do; I did stray from the academic papers in looking for more anecdotal evidence of things can work. And Karen was also doing some research as well in terms of, well I bought her a book by a woman who Karen sort of had heard about. And you know I don’t, I’m very, I feel very cynical about this particular woman and what she does. And she’s just one of a whole host of people. As I say there’s an industry out there that that is built on people who are dying. 

 

Was she offering complementary therapies?

 

Yes. Yes..

 

What sort of therapy?

 

Well she, I mean she in particular, what she, what she got you to buy was, her kit, the lifeline kit, which involved a, you know a folder and various leaflets and pamphlets as to the things to do, but also vitamins and various health products that you had to buy through her. 

 

And did you buy those?

 

Yes, Karen absolutely, you know and you know I backed her everything, everything she wanted to do I backed you know.

 

So she took extra vitamins and things?

 

Yes. And actually I do think that they probably worked. You know she absolutely you know went to town on healthy products and I, again when you look at how gobsmacked the specialists were, at how well she was, way into her treatment, there had to be something that was causing that. And I think her attitude and probably the things that she was taking were helping. But some of the products that were, that she was told that she should take I think were so you know, what was it, Carctol I think, some Indian plant extract, extract that she was on, that she was told to take you know. And you have to take enormous quantities of these things.

 

Did she take, did she take it?

 

Yes, yes, yes. And you know on one hand people are offering these things, yes taking healthy products and vitamins is, is always going to be a good idea. And she subscribed to Karen’s optimism and enthusiasm which mentally for Karen was brilliant you know.

 

Yes, she tried a whole host of things. I mean there were, there were, there were vegetable extracts, there were you know fruit extracts, there were a whole host of pills. I mean she, she, she spent hundreds, probably thousands of pounds on products,

 

Gosh.

 

You know and she would take them religiously every day. And I do think they worked. I think if you, if you bombard your body with you know with all these intense forms of vitamin etc, and mineral, you know it probably can’t be a bad thing really. 

 

When Simon's wife was dying they both resented the attitude of her oncologist who did not pretend to be optimistic about her future. Later Simon realised that the doctor had no choice.

You said decisions had to be made. Who made those decisions? Did you make them with your wife, or in conjunction with the doctors? Did you feel there was joint decision making going on?

 

Yes, they were very, yes, I mean they were very good at information and communication, but quite quickly Karen in particular was really sort of at war with the specialists, with all the you know the whole of the clinical side of it because they wouldn’t, you know the oncologist, our oncologist would not sort of join Karen in her optimism. And again, at the time I resented it, and I didn’t think it was right. Looking back she had no choice.

 

How was that, how was that consultation managed?

 

Well it was, looking back 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. 

Simon's wife Karen was in gradually worsening pain near the end of her life. She also had persistent diarrhoea and fluid retention.

But you know as I say, pain was an issue almost every day, for the whole eighteen months. And it got gradually worse and worse and worse, because obviously the cancer was growing.

 

Did she have any other symptoms at that stage? Did she have any jaundice or did she develop any diabetes?

 

No. She, no. I mean for the first few months there were just no symptoms at all. She never got jaundiced, she never got any of the classic signs or symptoms of pancreatic cancer. What ended up happening was the pain was always an issue. Then she started getting diarrhoea, which was awful because that was chronic. And that went on for oh, I mean that must’ve started after about six months, it, you know.

 

Was she given anything for that?

 

Again they tried, they tried everything they had. She saw the specialists. She went back to you know the specialist through her private health, and they tried everything they had, but it didn’t work. You know just chronic diarrhoea. And it, that was, that was crippling. 

 

I mean you know cancer just tears you apart. You know it just gradually seems to just destroy you know the body, and this happened fairly early on really. Karen loved food. She lived for food…

 

But in the end I suppose, I don’t know the month but getting towards the end of 2008 she started getting a distended stomach, just retaining fluid, and I think that you know the body at that point is just trying to cope isn’t it? So, that was also very crippling.

 

You know to the point where we went, well I suppose about November time 2008, just over a year after the diagnosis we went away to a hotel for the weekend with the children, and Karen was having to sleep sitting up.

 

You know. So each night I would sort of arrange all these pillows and everything so that she could, because she, because lying down was too painful. And that wasn’t, that was, I suppose that was partly the pain in her back, but also this distended stomach. It just was so sad for a woman who had always been so fit and active. She took it on the chin you know and she, she never seemed to really complain that much considering her life had you know was, had just been taken away from her really. So the diarrhoea and the swollen stomach were two of the main things.

 

Simon found members of the community nurse team 'phenomenal'. They gave him and his wife 'amazing' support day and night.

So you had enough help and support, nursing help? There was enough?

 

Yes. Once that, once the sort of machine got into gear, once the GP’s got involved and again, they seemed to be learning a bit. I don’t know what experience they’d had, but they seemed to be sort of get into their stride more as we went on. The community nurse team were just phenomenal, I mean you know it sounds clichéd but I could not sing their praises enough. They were just incredible people and incredibly efficient you know, they were in, they were really very impressive you know on every level. But once that machine was in place it was it was, yes it was brilliant.

 

So would they come and wash Karen and do everything that was needed, when it got to that stage?

 

Yes. When it got to the stage where she couldn’t do anything, I still used to do as much as I, as much as she’d let me you know. But it got to the point where she didn’t want to see me without her clothes on anymore, and so they did all of that. They would do any of the nursing she wanted. But it, but it, it was just far more than nursing. That was the amazing thing. There were, there were, one or two were two women in particular who I’ll never forget because you know, we had a relationship with them and Karen had a relationship with them. And they cried as much as I did when she died……. and they would come, they wouldn’t just do the nursing, they would just stay here for two or three hours sometimes. And they would make sure I was alright. They were always making sure I was alright. They would help her do whatever she wanted to do. And just them being around was really reassuring. I kept their phone numbers on the fridge for months afterwards, just because it was so reassuring. All these numbers that I used to use in an emergency, I kept it but I kept it there because it was so as I say it was a sort of lifeline.

 

Simon encouraged his children, who were only two and four at the time, to spend time with their mother before she died.

But anyway where was I going with that? It was to do with the last day, yes, on the last, it’s just funny you know, it, it sounds very clichéd but the last day things happened which will always stay with me. In the morning I’d been in here. I’d asked my daughter whether she wanted to come in, I think I asked both of them but it was more aimed at her because she was older, whether she wanted to help me with Karen. Whether she wanted to help me you know stroke her hand or something. And I was enticing her in for, for a few days she’d not wanted to go in. 

 

She’d always been around Karen, but increasingly over time she went in less and less because you know there wasn’t much she could do and it was obviously disturbing for her. For a few days she’d not gone near the room and I suddenly wanted to sort of entice her in. And she did, and not only did she come in but she got onto the bed and kissed Karen and stroked her head. And she went out of the room and I noticed Karen’s pulse in her neck going like the clappers. And I’m absolutely convinced that she was aware of my, her daughter being there. And her heart rate was going up like mad. In fact I was a bit worried. 

 

One of the nurses told Simon that Karen had opened her eyes just before she died. Simon was disappointed he wasn't with Karen then.

You said you went into the room and found your wife. She looked as though she was sleeping.

 

Yes, and I said to her that I thought it was time that she went. I think I just said, “I think it’s time. I think it’s time you go now,” or something like that, and walked out the room. And about maybe half an hour later the nurses arrived doing their normal daily thing. And they needed to change Karen, and basically we were in the kitchen and one of the nurses came in. And it just so happened that on that day it was the nurse, it was the nurse that had had the closest relationship with Karen, and she just came in and she said, “I think, I think she’s died.” And we went in and I always, I always maintain that, that Karen had, because apparently she opened her eyes, which is quite common, because the nurse told me what had happened. She opened her eyes and then and then died. And I always think that that was sort of typical of Karen that I think she, you know was aware of this and she thought, “I’m not going; I’m not bloody well going through this again. You’re not,” you know, because they had to manhandle her and change her and everything. And I think she sort of chose that moment to just you know call it a day. 

 

But it was really important to me, I wanted to be there when she died…… partly just because having you know, she, she was my wife and we’d been though everything, everything together. We were, we were, you know she gave birth to both of our children in this room,

 

Did she?

 

And she and she was dying in the house as well, and I wanted to be there. And I was disappointed that I wasn’t actually there at that moment. But of course it was only seconds later because the, the nurse rushed straight out. And we went in and it was, it was, it was different, she was different, but probably only because I knew that she was dead. You know she, she looked, there were, there were many times before she actually died that I walked into the room and thought she might be dead because she looked so gaunt, and her breathing was so shallow. So I’d sort of almost been through rehearsals of this moment.

 

Because I used to then have to check that she was breathing. And this time I knew she was dead and I wanted to get on the bed with her. So I asked the nurses to arrange her so that I could get on the bed. So I could be with her.

 

Simon and one of his young children got onto the bed with Karen after she had died. Simon appreciated the way his daughter made sense of the situation.

Yes. I asked them to go out so I could have some time. And you know I just all, all my emotion came out then. And they all gave me some time but not long afterwards I wanted the children to come in.

 

Yes.

 

So I called them in and Alicia got on the bed with me, on the other side of Karen, and you know being children, you know children being what they are she was not yet four at this stage. No sorry, she wasn’t, she, it was 2009, so she was, she was over four, but she sort of explored Karen’s body, she had no clothes on so she’d go on the bed, and I said, “Mummy’s died.” And I was crying so she knew that that and she said, she looked at her eye and her eyes were still open and she said, “She’s not dead, I can see her eyes.” 

 

I’d read, I’ve mentioned Winston’s Wish website. I’d used that for you know what sorts of things do you say to children. And one of the useful things was to just talk about the body not working, that that was something that they’d understand. So when she said, “She’s not died.” I explained all about her body not working. I said, “Her heart isn’t pumping.” We felt her chest, and I said, “Her blood isn’t pumping and she’s not breathing.” And I got her to listen so that she knew all of that. And I’d you know, I thought it was the most natural thing in the world. I think I was as scared of death as anyone else beforehand, but I also knew that it must be far, far scarier to a child to be absent from these things than to be present that and so I thought the more she knows the more she’ll understand.

 

Yes. And was that the right thing to have done do you think?

 

Absolutely, one hundred percent. Since then everyone has always you know remarked on how amazingly well adjusted they were right from the first day. Not that they haven’t been through grief but I think it, I think it was important and Alicia remembers it to this day. And she pulled the covers back and looked at Karen’s body and asked why it looked different. Because it you know, the skin complexion was different and she was very thin. And she…… she was all; she sort of laughed a bit. It was that sort of nervous confused, but it was sinking in.

 

And she wasn’t sure if I was telling her the truth. And of course once I’d explained it she understood that I was. But then, then she was in her own childish way was dealing with it, but she said to me, “If she’s died, does that mean I can have her jewelry?”

 

Ah.

 

And I said, “Yes, you can, you know we’ll talk about things that you can have.” And the sort of comedy bit was where she, she explored all over Karen’s body and was just getting used to the idea. It wasn’t that, you know, because she’d been at home all the way through and because Karen had been, in inverted commas, absent, for so long that it was just a natural progression. So it wasn’t so disturbing for her, but then she sort of looked at me a bit conspiratorially at one point and she said, “Can we keep, can I keep her as my doll?”

 

Ah.

 

You know the body.

 

Yes. She’s four at this stage?

 

She was four yes, yes, and despite you know my tears I think, I think I actually laughed at that point. And that’s the wonderful gift that children have of being able to make sense of situations that adults can’t do. Or at least give a perspective on them that, you know. 

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.

Yes, 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 pretty awful I must admit because, well there’s a whole, that’s a whole new story, 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 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 you register your marriage, they were very officious about this being a very legal thing and just inhuman. I mean I was gobsmacked. 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…

 

Simon and his wife, Karen, were told that she had inoperable cancer, and were shocked to hear that she only had about two years to live.

What did the consultant say then?

 

She said that, you know, you go into a little clinical room, 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, 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, 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, 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.

 

How did your wife react to that?

 

Ah well it was, I mean she, she wailed. I mean she, it was, it was slightly surreal, as you can imagine. It’s just

 

Awful.

 

She, Karen sort of, Karen I suppose had suspected that this was a possibility. She must have done. So when she heard the words that she was, I suppose you know, the back of her mind was dreading. She just was wailing and screaming, “No, no, no. Don’t say that. That’s not what I want to hear.” And sort of beating my, my legs in just anguish.

 

I’m so sorry.

 

Its, you know it’s something that you never recover from because it’s just very intense. And I just sort of went into shock and I just remember sort of, all I could hear in my, in my own head was the word, “No.” I was just shaking my head saying, “No, no.”  I didn’t, you know I didn’t know what I meant by that. Whether it was, “No it can’t be true,” or, “No don’t tell me, “or what but I sort of shut down I think.

 

Simon thought that if the health care professionals worked better together patients would be better informed and know what was going on.

Have you got any message for health professionals?

 

One of the things that came out for me from the whole thing was the, the sense really of the lack of good communication between all the parties involved. So when you’ve got a situation like mine where Karen was you know being cared for at home, right from the start really, I don’t think there’s a, I don’t think there’s a well established structure of communication between the various parties involved in healthcare. You know in the region. So the relationship between the GP, hospices, community healthcare teams, and this, and the specialists. You know obviously the communication is there if sort of necessary. But it doesn’t seem to be a well oiled cohesive unit. And I think if it was, you wouldn’t get, you know, everyone would be much more informed, and I, and you know and patients would feel that they know what’s going on. Because we had the sense of, people were telling us we could get information. We could, we could get people involved but we didn’t really know where to start.

 

So what you would, what would be ideal is that as soon as you were put in this situation, that, that there’d be a very clear structure of what, of this is the, this is the whole picture and you know it, if someone could actually sit down with you straightaway and say, “Right, well this is the picture. You’ve got these people here and they’re all talking to each other all the time. And everyone knows what’s going on, and you know and this is the person that you need to talk to about any queries you’ve got.” You know, if it was all nice and clearly laid out then you’d get the sense of sort of knowing who to turn to and where to turn, and you’d have the sense of that they all know what’s going on. They’re all very good independently, but I don’t think they work well together.

 

We would have visits from you know an emergency out of hours doctor for example, who didn’t have any notes on Karen, you know, and there’s no reason for that with electronic communication. Everyone should have all the information all the time. The whole thing about us relating, communicating with the, with the specialist team when probably we should have been talking to more the sort of the health team, the community team more, they didn’t know what each other was doing. So I just didn’t feel that that was, I mean that’s, you know that’s a big issue isn’t it? That’s a, that’s a national, you know that’s a government level issue. 

 

Simon's wife Karen did not take enough analgesia to stop her pain. When she was very ill she had morphine, but sometimes this caused hallucinations.

Yes. Pain was always an issue, all the way through. 

 

How was that being alleviated?

 

Well the problem was that Karen was not good, I never, I never understood her attitude to be honest, towards her pain. She never allowed the practitioners to fully deal with the pain. Or put it this way they told, they told us about the whole levels of pain relief that you can go through, starting with the lowest level of obviously just paracetomol to start with. And we understood about the hierarchy. 

 

And they also made it clear from the very start that the only effective pain relief is pain prevention as opposed to pain relief. Take all the medication you need to, to not allow it through, and then that’s how you manage it. And we understood this, and Karen seemed to understand it, yet she never actually practised it. So through the whole eighteen months of her illness, pain was an issue every single day.

 

You know, she was just amazing. And that went on until the point at which she just you know just couldn’t get out of bed anymore. And by this stage, you know, she was being given such a high dosage of morphine that she’s largely not aware of what’s going on anyway. So she would drift in and out of consciousness. She would time, sometimes be hallucinating. She refused to have very much morphine until very late on. This whole thing about her never really accepting drugs and just putting up with the pain went on and on and on.

 

But in the end she started, her mind, she started getting confused. Now I do wonder whether the cancer had actually spread to her brain by this stage. And she’d be sort of hallucinating and having strange thoughts, and getting quite anxious. And at one point as well when she was, again you know basically so ill that we thought any day she’s going to die, she actually started becoming more and more alert, and wanting to make all sorts of decisions about all sorts of things. She was phoning people and getting them to come over so she could sort things out. I mean it was, it was you know, it was, all a bit disturbing really that she was getting sort of more and more alert.

 

But in the end I think she realised that that was disturbing her as well. And in the end she sort of asked them to give her a higher dose of morphine. And after that you know, that was the point at which she, she largely became, she just would drift in and out of consciousness. And that was the point at which she stopped being able to get out of bed. And that must’ve only been days or a week or so before she died.