Joanna - Interview 35

Age at interview: 63

Brief Outline: Joanna looked after her husband for ten years after he was diagnosed with acute myeloid leukaemia. Although initial treatment put him into remission the disease recurred after five years in remission. Further treatment did not work and he eventually died.

Background: Joanna is an architect. She is widowed with 3 adult children. Ethnic background: White British.

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Joanna’s husband was diagnosed with acute myeloid leukaemia ten years ago in the course of dealing with an anal fissure. By the time he was hospitalised he had perineal gangrene and was high on morphine, so Joanna had to make decisions on his behalf from the outset and continued to do so throughout his illness. She found it difficult to build up relationships with the doctors because of frequent personnel changes. Her husband remained in hospital for nine months having treatment. Although staying overnight at the hospital was an option for Joanna her husband didn’t want her to, but she spent a lot of time there, even working when she could. The gangrenous tissue was surgically removed but the wound never healed well and required a new dressing every time he used the toilet, a task that Joanna sometimes did when he was at home.

 

Joanna and her husband found it difficult to predict how long his recovery would take and how to plan for his return to work. Believing that her husband would never return to full time work Joanna turned down offers of long term projects that he might not be able to complete. It was therefore important that she maintain her own work commitments, although she had to reduce them towards the end of his life.

 

It took about three years for Joanna’s husband’s blood counts to stabilise and after five years in remission he was diagnosed with a preleukaemic condition called myelodysplasia which gradually turned to leukaemia. He was invited to join a clinical trial but eventually discovered that he was ineligible. A stem cell transplant was considered but the risks were thought too great. Around the same time Joanna’s mother, who she was also caring for, died from cancer. Joanna believes her husband found this difficult to deal with as he knew that he might also die. He had various chemotherapies but none worked for long. Joanna knew when his condition was deteriorating but found it difficult when he didn’t seem to want to acknowledge or discuss it. He had a series of small strokes that reduced his ability to communicate. Because of this and because she had been so busy dealing with practicalities, they hadn’t really discussed emotional issues.

 

Joanna obtained an NHS bed for their living room and an emergency call system for when her husband fell and she couldn’t get him up. Although she had been preparing herself for her husband’s death for a long time, and there had been several occasions when she had thought it imminent, when it actually came she was taken by surprise and felt it hadn’t been a particularly good death. Joanna thought her husband had wanted to die at home but with hindsight wonders whether that had been the best or the easiest thing for either of them.
 

Joanna was also interviewed for the clinical trials section of this site (see Interview CLT25).

 

Joanna knew from her husband's blood counts that the AML* had relapsed and he was going downhill; she felt frustrated because he didn't want to talk about it.

And then as we were coming up to the five years - and everybody says five years is the marker - that sounded rather nice, we’re actually getting there, and we were being told, “You’re at the tail of the curve, you’re over the hump, you’re likely to be okay”. And then I could see from a set of results that it obviously wasn’t. Something had shifted. Now I don’t think he, although he recorded all the results himself, I don’t think he thought too closely about what they might mean. And I’d been watching them like a hawk for years and I was fairly clear that we’d run into a problem that was quite likely to be serious. And it was just about when one of the children was about to go abroad for a long time and I was quite glad that he set off before we went for the second check, because I felt if we got the results I thought we would get, that might upset his plans.

 

And I knew, I could see from the way the blood results were going, absolutely straightforward blood count of all the normal haemoglobin and white and platelets and the rest of it, what’s happening. And from that point of view, the fact that he was perhaps not trying to take on board the other bits of unfinished business that really are part of what this process is about, was something that I didn’t find at all easy. I still don’t, that he wasn’t able to talk about, you know, recognising that he didn’t have much longer to live, that I did, that those things were going to have to be lived with afterwards. He didn’t want to talk about it. I’m sure he knew, but as far as he was concerned that wasn’t the sort of thing that one needs to spend any time on. I mean we’d been through a few pretty serious crises by the end. I mean four or five fairly serious episodes that looked as if they might have been the end of the line anyway. And I think he got fed up with having to confront this and just stopped wanting to deal with it, which I didn’t find at all easy.

 

But then there was also just all the practical, everyday things. As he gradually got less and less strong we had to start getting off the bicycle into the car, get the disabled permit sorted out, eventually into the wheelchair, those sort of things. And on top of all of that there were the things that I think may be fairly common when you’ve had a lot of chemotherapy, but the whole blood system doesn’t work as well. And I think for him, at least, the results were that there were very small episodes of little strokes which gradually reduced his ability to communicate. So I was about the only person who actually knew what was being said or why. So then he really couldn’t function, couldn’t be trusted to function without someone around at one level. And certainly eventually other people would find it quite difficult to make out what he was actually trying to talk about without a little bit of help.

 

So all of those things added up to quite a serious set of problems, if you like, of practical issues which, in a way I suppose I just sank myself into dealing with them as best I could, and keeping up a job, admittedly, by then only half time, which I felt was absolutely all I could legitimately charge anyone for.

 

But that wasn’t necessarily the only sensible thing to have been doing. I mean it would have been perhaps quite sensible to deal with some of the emotional as well as the practical things which haven’t in a sense had a chance to be sort of ironed through because it just was an awful lot of hard work. I mean we had a lot of fun doing things. We went on going to theatres, to dinner with people and so on, really for a very long time, right until the last few weeks. But I mean it was very upsetting to see that, you know, you went to a theatre and, and theatre was one of his most favourite things and gradually he wasn’t really taking in the plot or able to understand quite what was going on or why and was tired, and, you know, it was, it was more a gesture to, “I’m a survivor”, than something that that he was genuinely enjoying.  

Joanna found it difficult to find out when her husband might die and was surprised when it happened. She had assumed that he wanted to die at home but now wonders whether it had been the best thing.

So would you like to tell me a bit more about your husband’s death and how that came about and how you felt about it?

 

Okay. Well, one of the things that we’d actually, certainly had said between us more than once, was that he didn’t actually like being in the hospital. So I had assumed that what he would like would be to be able to be allowed to die at home. And I certainly had gone through that with my mother. She didn’t want to die in hospital and we were able to get it all organised for her to die at home, so I knew it could be done. And I thought that that’s what he would like.

 

I now know that I don’t know whether he would have liked that, which is upsetting actually, because it might be that he would have felt more secure in a physical environment that was geared up to deal with the problem. But we’d decided to have the bed, have all the facilities that would make the medical people play game and play ball and be willing to help. So, as I said, I mean we did have the hospice people in. I’d had to actually fight to get the hospice people or the Macmillan nurse people to take us on. I’ve never understood this because everybody else I know who’s got cancer said, “Oh, its wonderful. The Macmillan nurse.” I’ve no idea why we weren’t offered one. I’ve no idea why, I had to ask about whether such a thing was available. I just don’t understand that. But anyway our local PCT uses their own employees rather than Macmillan, but they’re the same sort of thing but they don’t call themselves Macmillan, but so there’s one attached to the hospice. And we’d had a number of them because over the years they’d changed.

 

And the one that we did have at the time was one that my husband didn’t feel understood him at all because he kept offering things like art therapy and so on. But I did keep on trying to keep in touch and get him to come round. And eventually, towards the end, towards the last two or three days, he realised that things definitely had taken a visible turn in the direction that death was not that far away. And so he decided to bring in the doctor as well, who hadn’t met him, my husband hadn’t met him, who was associated with the hospice. Because they’re both based, I think, well not based physically, but related to the system through the local hospice. And they both came in the morning and I tried to get both of them to help me to understand, was this really very near the end. Because my husband had actually stopped wanting to eat and he’d become very, I don’t know, a bit agitated actually, and he didn’t seem to be able to eat actually. He didn’t seem to be able to swallow really. And I didn’t actually know why, and it was associated with, he needs to take these pills so let’s try and do it in an easier way with liquid or, I don’t know, I can’t remember what they suggested.

 

But they came round and they sort of started to give me bits of advice and they still, as I think I said, didn’t actually want to commit themselves to saying that this could have been really quite close to death. I don’t know why they didn’t connect up, unless it was that they had seen so little of him. I mean one person hadn’t seen him at all. The other person hadn’t seen him very often. And to be honest I’d not seen much of this sort of thing myself, so although I was quite concerned and kept saying, “Shouldn’t I get my son home?”, they didn’t actually respond to that until afterwards. And then they rang me up, or one of them did, and said, “Well, actually on second thoughts, why don’t you.” And of course by that time it was, it was four in the morning in China so I thought, “Well, I’ll wait a few more hours and do it at breakfast time.”  Well, a few more hours got us to really the very end of the day.

And my other son did come round and was here.  And we were sitting sort of watching what was happening and and my husband had gone very comatose.  I mean he was really making a rather horrible sort of rasping breathing and pretty unconscious.  And [um], I don’t know, we’d turned to make a cup of kettle, cup of tea, turn on the kettle or whatever, and we realised that he’d stopped breathing.  And neither of us could actually quite believe that this meant that he’d died.  I mean, you know, it was, it was still a sort of shock, you know, given that two medical people hadn’t hadn’t had any inkling. 

Joanna's husband was severely ill and on morphine when his leukaemia was diagnosed so she had to talk to staff and take decisions on his behalf; she continued to do so throughout his illness.

But by the time he got there [hospital] he was very ill with gangrene, which was a horrible added complication, and from my point of view meant that I had to take over an awful lot of the interface with the hospital and the decision taking and all of that, because he was virtually out for the count on morphine all the time, and having operations for gangrene, which was perineal, which is not a very nice place to have it. And there were two lots of medics fighting over him, because the leukaemia people didn’t really want him to have plastic surgeons messing around, and the plastic surgeons knew they had to do something quickly or it wouldn’t work. And I was left for the first month really handling most of the interface, which actually meant I went on doing it throughout. And that might have happened anyway because I’ve always paid the bills and done all the admin, but I think it was more because he never could engage with what was going on at the beginning. So all the sorts of decisions like going onto a trial and whether to have things like whole body irradiation, and all of those things, ended up being things that he relied on me. It wasn’t that he didn’t take an interest but he relied on me to actually formulate the problem for him, sort it out and come to the decision, if it was one he was going to share, which actually was quite hard work right at the beginning.

 

It didn’t suit me very well because of the way the hospital is structured. I can relate to people and build up a relationship, and I didn’t realise that they change the doctors on the ward every month. You lose a consultant one month, you lose the senior registrar the next, you lose the house officer the next. Each one of them just does a three month tour of duty. Well, that absolutely threw me.

Joanna was shocked when she heard her husband had leukaemia because she knew little about its treatment and assumed it meant a quick death.

So would you like to tell me the story of your experience of your husband’s leukaemia?

 

Right. Well, I guess it started from my point of view rather dramatically because he’d had a minor, apparently minor problem which eventually the GP said, “Well, get it sorted out privately.” And it didn’t seem to be sorting and he had to go into a hospital to be checked over a bit further and I went off in the normal sort of way to keep on with my normal life and went off to Manchester. And I did get a very nasty shock when I rang him up and over the phone on the train he said, “I’ve got leukaemia.” And I frankly didn’t actually know what to do. And my first thought was actually to ring the GP and find out what was the right hospital to go to because he also said he couldn’t stay where he was, they didn’t deal with leukaemia and he’d have to be moved and there was a choice.

 

So that I was dealing in a big unknown world with an illness that’s fundamentally rather frightening to hear about because as an ordinary member of the public you don’t realise how many advances there have been in leukaemia and, you know, it’s a sort of death sentence type of illness initially and probably a quick one. And they did say, I mean, rather ruthlessly, you know, if we don’t start you immediately on drugs you’ve got three months to live and that’s it, you know. All of which is quite tough actually and so that side of it was quite difficult to get to grips with.

Joanna spent most of each day at the hospital throughout her husband's nine month stay; she managed to do some work while there but found it an unusual and lonely existence.

I spent, I remember hours and hours sitting in the room, because everybody is in a personal, private room when they’re going through all this, doing my office work on my lap at the same time as sitting there for hours and hours. He wouldn’t let me stay overnight, which was allowed by the hospital, but he said I shouldn’t, so I was endlessly bicycling down there at seven in the morning and bicycling back at midnight, things like that, which was also quite lonely really actually doing that.

 

And it was very long drawn out. I mean it’s a long process. If they succeed in getting through a reasonable treatment programme it’s the best part of nine months to a year if you’re doing well. And he did, so he got out, in pretty poor shape but he didn’t have serious complications in the course of the treatment. But still that’s a long time to be basically tied to a hospital. It’s very unusual now and most medical people don’t know what that’s like because they tend to have you in and kick you out again within ten days if they possibly can. So although the haematology people know, the rest of them are, you know, your GP and people like that don’t tend to deal with that sort of problem. So you’re actually sort of, you feel you’re carving out a kind of a slightly unknown route at one level.

 

So that was actually very dramatic and not at all easy but very, very busy so there actually wasn’t all that much time to brood about it.

Joanna says partners cannot fully empathise with their sick loved one as they don't know what it feels like. Coping with her mother's death at the same time as her husband's leukaemia was tough.

Again, I took the initiative almost completely because I’d got the sort of calculating side of these things, not the day-to-day living with it, which I think is very hard to understand when you’re not the person living with it, with the absolute threat that this is life threatening. I think actually that’s one of the hardest things about looking after someone is that you know that your whole attitude to the whole process is different and you don’t know how to get into it, and frankly you don’t even want to at one level. You don’t want to be confronted with that for yourself. And you feel bad about not wanting it, and you feel you should be able to empathise at their level but you can’t, well at least maybe some people can but I think they may be kidding themselves.

 

So what was the worst time for you?

 

I think possibly the last bit of heavy duty chemotherapy where we were told to get my son home from China, so we did. And it was all happening at exactly the same moment as my mother’s memorial service. And he couldn’t be there and wanted to, and I had to be there and didn’t want to, if you know what I mean. I think that was a pretty bad moment actually. Because I mean she didn’t live far from me and so she’d been a very constant presence in my everyday life, and for years, not necessarily always smooth and easy, because these things aren’t, but there was going to be a big gap, whatever. And to have him apparently about to die as well, simultaneously, was not very good either, which didn’t happen then but, there was a conscientious registrar who said, “I really think you should get your son home.” And maybe the consultant would have been slightly different about it, I don’t know. But I don’t feel he made the wrong call; I think it was the right thing to say. And my son was going to come home anyway for this memorial event, but it wasn’t going to be quite so quickly. It was going to take a few more days or a week or whatever. It was new air fares. Panic introduced into the system, you know, so…

Joanna has felt exhausted since her husband died and because of other family commitments has not had time to decide how to reshape her life or grieve properly.

So how has life been since then? It’s been a few months hasn’t it?

 

Well, it’s been non-stop roller coaster with other family affairs unfortunately. I mean those were two sad things' that one of my sons got married shortly after he died, and then my daughter had these twins and has moved in with a family of six, which actually means that my biggest problem is not having had time to think about who I would like to be now. Because that’s been my biggest thing, is that I’ve had my own life on hold for ten years, in a sort of funny way, because it’s always been focused on what happens next to the people round me. And it’s still like that with six of them downstairs it’s hardly not going to be any different. And that I do find hard actually. That’s probably, you know, I no longer know how to work out who the hell I am and what I should be doing for me, and in developing whatever else is left of my life into something that I could say is my own as opposed to a support system.

 

And that’s not comfortable. But I mean it’s nobody’s fault. It’s the way life is.

 

And did you feel you’ve dealt with the grief?

 

No, not yet. No, I mean I think that could take quite a long time. I mean I don’t let it, I don’t imagine it’s less than two years at the least, but I think because it’s had to be sort of chopped up and postponed and parcelled out, it may be much less tidy in some ways and much, much more sort of bitty.