What about end of life? Sometimes people say, How will I die

Yes. End of life care in pancreatic cancer can be very variable and one of the keys is to be working, and, hopefully, dealing with every issue of a patient coming to their end of their life, through the management team that they have been dealing with throughout their care.

Certainly within our own practice, we actually try and involve our palliative team at a very early stage, well before they have got anywhere near the end of life care, because they are experts in the management of symptom control, and often patients, when we introduce this initially, feel that we are perhaps premature, but it’s trying to look at the patient’s overall management, and not just introduce the palliative consultants towards the end of life. For those patients who are approaching the end of life, pancreatic tumours and tumours in general, how they tend to catch up with you is by making you generally weak and your ability to deal with another medical problem reduces with time.

So that when you develop a chest infection, for instance, that you would normally be able to brush off, you’re just unable to manage to do so. The majority of patients, we would hope, would be extremely comfortable. They would be in an environment which suits both them and their family.

And we work hard to try and make sure that both patients that wish to be at home with their family can be. Those that would rather be within a hospice environment can be, or even within the hospital environment, with people they know and making sure that their symptoms are well controlled.

A lot of patients ask questions as to how long they’re going to have before the tumour catches up with them and there is no way of predicting this, although we can have ideas that the patient’s general condition is deteriorating, because it is often the development of a secondary medical problem, such as a chest infection, that eventually is too much for them, none of us know when we’re next going to get our next cold.

And, consequently, we need to try and be dealing with each day as it comes and making sure that the symptom control for that day, for that week, for that month, is as good as we possibly can even though the general condition of the patient is reducing.

We then had a, had another problem in sort of mid-November in that Ann had severe chest pains and both arms, I phoned the local GP, and his recommendation was that we phone 999. That I did, and she was again taken to the local hospital, and they diagnosed that she’d got probably a loss of blood from her intestine which was creating shock and all manner of other problems. Surgeons reviewed the notes, because they managed to lay their hands on them all very quickly, and they filled her up with liquids, she was completely disorientated, and eventually they tucked her up in bed and a surgeon I hadn’t seen before came and talked to me, and he explained to me that we were very close to the end. And we agreed and he put a note on the notes, no resuscitation.

That was fine and Ann stayed in hospital that night, by eight o’clock in the morning she’s up and about again. So [laughs] we just get completely lost as to what’s happening and what’s not happening. The Ellenor nurses, I don’t know how they did it, but they turned up at about eight o’clock on the morning, so they had got a, they had obviously got a system of knowing who the, who had been admitted overnight. They organised bits and pieces and within, oh, 24 hours of having been taken into hospital by ambulance and the surgeon telling me that we wouldn’t go through resuscitation Ann’s back home again, which is quite a shock, because I had got all the, I had got both the, both the children with me by then, they had both travelled to get, to get to us. And although Ann wasn’t feeling very well, she was still a little bit disorientated, she was back home and, and feeling better. I think the morphine had kicked in by then and, you know, that was it. The local GP called in and everything seemed to be going well and that was the end of November.

They did more tests and it didn’t look good and the cancer had in fact spread and I remember the day I was sitting with her in the hospital and the doctors came in and said that it was not good, and really she had about two or three weeks left at that point. And that was pretty bleak.

And that is indeed what she had. And so we brought her home and that’s when the magnificent Marie Curie nurses came into our lives. We hadn’t known about them before and the GP explained that there was this amazing service where these nurses come round for free – it’s a charity – and they look after the patients, especially at night. It gives a lot of relief to the family and they were very professional. And they’re also great girls, I mean they’re just a fantastic spirit and my mother got on with them very well, had a good gossip – she knew all their sex lives. And, anyway they were great and there was a wonderful doctor who sort of specialised in end of life care and palliative pain relief and stuff.

And she was on the morphine drip; I remember having to rush out and buy batteries for that. And then, yes, she duly did die. But I mean as far as you can have a good death, I think she had a pretty good death with her family around.

Did she die at home?

Yes.

Is that where she wanted to die?

Yes that’s right, hence the Marie Curie factor, because that’s what they’re there for, they’re there if you want to die at home. And apparently most people do.

it’s rough, pancreatic cancer is a rough one. And it’s not good. it’s not good. So I’ve got nothing good to say about it. The only thing I can say is that death, I think, can be handled in many ways and you know I like to think that my Mother handled her death with such good humour and bravery.

And you talked about sitting next to somebody when they’re dying. Did your Mum have a peaceful death do you think?

Yes, well as I say I think she had a very peaceful death. A lot of family visiting, and we were having a laugh. I think pretty much the day she died, maybe it was the, certainly the day before we had a laugh. I was there with my Aunts and my mother had wanted her hair to be washed. She was very, very finickety about her hair, and normally went to the salon over the green. And so my Aunts washed her hair and there was a lot of laughter. And then to tease my mother I said I would blow dry it, and I did a kind of Italian hairdresser routine for her, and we had a, yes that was a laugh. I mean we did have a lot of fun with my Mother’s cancer one way or another. I can remember being in hospitals and I’d go and visit her and frankly kick her out of bed so I could lie in bed with an oxygen mask, because I had such a bad hangover. Endless fun, you know, there’s endless fun to be had with rubber gloves and cardboard potties. It certainly was not grim. And I mean there’s a certain grim undertow to everything, but we definitely had a laugh.

Were you actually with her when she died?

I wasn’t, I missed it. I was at home and my brother called me over. So I missed that moment.

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 diedhellip;. 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.

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.

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 diedhellip; 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.

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.

On the thirteenth we did go out and we went shopping again, and then in the afternoon of the thirteenth Ann said that she was in severe pain, took some more morphine and went to bed, and that was in the afternoon. I phoned the Ellenor nurses and a couple of them turned up. They gave her some more painkilling injections, and we talked and they in, they did bits and pieces and made her comfortable, and they disappeared and Ann didn’t get up in the night, she was very, very still, and the Ellenor nurses, and a doctor from the Ellenor organisation turned up at about nine o’clock, nine, half past nine the following morning, and basically Ann didn’t wake up on, on that, on that fourteenth of December, she died at about twelve-thirty

So do you feel it was a good death?

It was an easy death because basically she, she’d got enough morphine and she went into a coma. She wasn’t in any pain at that time. It was very simple, she just literally just stopped breathing and that was it. There were no, there were no dramatics, she just, just hadn’t ever woken up that morning . it was just very simple.

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.

We brought her in, A&E was very slow on Sunday nights, but she was admitted that evening, and the Monday she got sicker and sicker, and she started to go down and I got, one of my son’s was here, the other son was in, in France. And I told the son here that you know, do come, and he came, and eventually I think it was probably the Monday night, at suppertime we realised that she was really going down because they kept saying her blood, not her blood, her heart rate was going too fast now, and all sorts of things were happening. And they were saying her organs are in danger.

So as it happened I had sent a text to my other son in France, and he, he made it back, he got back I think at lunchtime on the Tuesday. And at that stage her heart was racing, and she was starting to really go down, and was going in and out of consciousness, but quite peaceful, in one, in that sense. And we just sat with her, holding her hand for the rest of that afternoon.

At one point you know I went and talked with the; there’d been a doctor there, an oncologist who Martine related to very well, I talked to her and she said, You must prepare herself, I don’t think she’s going to survive this

And it was about 7 o’clock that night, she just stopped breathing, very quiet and, we’d agreed beforehand, a no, no rescuss agreement, that if her heart stopped that was it, because you know it had, it had, she’d have been through so much at that point.

At first they said, Oh no she’s going to be alright but then they realised she was just going down and down. And so her, in the end it was very peaceful and quiet. We’d got, some friends came in, who were shocked because you know, she’d, everybody just heard, Oh she’s back from holiday and started her treatment And then for most people, suddenly, Martine has died. So it was a great shock. Thank goodness the boys were there, for them I think it was the most important thing that they were holding their Mum’s hand when she died.

And she died peacefully.

And she died peacefully, that’s right. And, I mean, they gave her all the painkillers she needed.

When Martine died did the hospital support you?

Yes, when she died, in a number of ways the hospital supported us, and supported me. Perhaps the most important thing was there were a couple of nurses on duty that night, and they each took it in turn just to come in, close the door, stand there with their head bowed, and then walk out again. There was a sign of recognition that somebody has died, because we, after she died we probably spent an hour, an hour and a half in the room. We were in a room, a separate room.

And then I went out and I spoke to whoever was the nurse in charge, and said, What happens now And she gave me that leaflet and said, What happens is that Martine’s body is taken down to the hospital mortuary, and then tomorrow morning, you must go to the bereavement office, and there you hand this piece of paper in, and then they give you another piece of paper