Henry & Jane ' Interview 15

Age at interview: 63

Brief Outline: Henry cared for his partner Jane after she was diagnosed with bowel cancer in 2005. She had surgery and chemotherapy. Brain metastases were treated with radiotherapy. He supported her throughout her illness and she died at home with her family around her.

Background: Henry is a political advisor and is single with 3 adult children. Ethnic Background' White British.

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At age 53 Henry’s partner Jane began to experience gripey abdominal pain while on holiday. On her return a consultant removed a contraceptive coil which he thought was causing the pain. The pain subsided for a while but then returned, so Jane went to her GP, who referred her for tests. After a while Henry felt frustrated that they still didn’t know what was wrong, so he suggested she went private. During a check-up at a private hospital she was told she had an ulcerous area in her bowel.

They went abroad on holiday but returned to the hospital immediately afterwards and was told that Jane had bowel cancer. Henry looked for information on the internet and had been shocked at the survival statistics he found, so he never looked for information about the condition again. Within a few days of the diagnosis Jane had an operation to remove the tumour but she lost a lot of blood and needed a second operation a few hours later to remove her spleen. Two days later Jane’s blood pressure dropped dramatically, her condition became critical and she had a 3rd operation.

A few days later Henry realised that he and Jane had emerged from a meeting with an oncologist with very different perspectives on her future. He thought her life expectancy was low whereas Jane maintained hope that she would make a full recovery. She underwent a course of chemotherapy and then went on holiday. Henry didn’t always accompany Jane to her consultations because he found it difficult to cope with. At one visit she was told the tumour hadn’t spread any further, which gave them both a lot of hope.

After a few weeks Jane awoke in the night with a terrible pain in her leg and Henry rushed her to A&E, where they waited a long time for attention, which made him angry and upset. Two months later he heard a thump and found Jane on the floor having a seizure. He was distraught and thought she was dying. He rang 999 and she was admitted to hospital where she had a variety of tests including an x-ray of her head, which showed an abnormality in her brain. They were told to go home and enjoy Christmas. When they returned she had more tests and it was confirmed that she had 5 tumours in her brain. These were treated with radiotherapy, which caused her to lose all her hair.

After the treatment Jane was told that she also had tumours on her lung but she still seemed convinced that she would survive, although it was clear to Henry that she couldn’t have long left. At this point they went to the GP’s surgery to get a form signed so that she could give up work. Henry saw that the reason stated on the form was ‘terminal illness’ and tried to keep this from Jane, but she demanded to see what it said and became very upset.

After that Jane gradually deteriorated and she began to experience periods of confusion. She also needed a wheelchair and a stair lift. She took to sleeping downstairs while Henry remained upstairs, but Jane would phone him if she needed him. One night she fell on coming out of the toilet and he had to call the paramedics to help him get her up again. Later they engaged a carer from the council, who did housework and gave Jane her breakfast. They also had Marie Curie nurses come to the house at night to keep an eye on Jane while he tried to sleep. Henry was less impressed with some of these nurses than he had been by the Macmillan nurses he had dealt with.

Jane finally accepted that she was going to die and gave him some instructions, which included finding a new partner after she was gone. They discussed her funeral, and she had very clear wishes. They also both sorted out their wills, including leaving a sum to each other. Jane also advised all her children individually on what she would like them to do with their lives. She also contacted her ex-husband who came over from the USA to visit her.

A few days before she died Henry and Jane attended a Buckingham Palace garden party, which Henry had obtained tickets for through his job, and Jane thoroughly enjoyed being there and meeting the queen. Henry then consulted the GP about whether there was any point in Jane continuing to take morphine pills. The GP said no, so in discussion with the whole family it was decided that she should go onto liquid morphine. Jane died at home 24 hours later with her family around her.

Jane had been looked after partly in the NHS and partly in the private sector, and Henry had found that staff in the private sector had seemed more empathic. They had both received good support from the Macmillan nurses but he had not always been made to feel as valued in his caring role by other professionals as he would have liked. He believes it is important that carers should be made to feel well supported and considered because they are being relied upon by the ill person.

Henry and Jane had received fantastic support from friends throughout Jane’s illness. Henry had continued to work most of the time but had wanted to be with Jane to support her, although at times the stress of his caring role had caused slight tensions in their relationship. Although he felt he had been going through ‘a private form of hell’, he had gritted his teeth and got on with what he had to do to give Jane as much support as possible. It had been important to him that he had made it clear to her adult children that he was there for her and would not abandon her even though their relationship had been relatively short.

Several years after Jane’s death Henry is with a new partner and very happy.
 

Henry dialled 999 after he found his partner Jane on the floor having a seizure; he was very shocked and thought she might die.

And then two days before Christmas 2006, I normally would have would have been playing tennis. It was a Saturday morning but I, thank God I didn’t. I was upstairs wrapping presents, Jane was on the telephone downstairs, and I heard a thump, called down and asked, said, “Are you alright?” And there was no reply, so I went down. I wasn’t particularly alarmed. I thought she might have just dropped something, and found her on the floor having a seizure.

And now, I’ve never seen anybody have a seizure, well, a seizure, an epileptic fit, I think is probably what it was. I’ve never seen this before actually and I did think she was dying. She was, you know, shaking compulsively. She was frothing at the mouth. I was absolutely horrified. I hadn’t sort of, I’d had no warning of this. I mean I had, never occurred to me and it certainly never anybody said that possibly, the cancer could have spread to her brain, which, of course, was what had caused it but I didn’t know that at the time. So I was absolutely distraught by that, just the sight of seeing her there, something, you know, ten minutes earlier she’d been happily preparing for Christmas.

So I held her and dialled 999 on my mobile phone - thank God for mobile phones - and I have to say the ambulance service were brilliant. They were round very quickly, very, very sympathetic and, to my surprise, Jane was already beginning to come round when they arrived and was, actually, you know, even sort of joking with them a little bit and seemed to be okay. So went into [Town] Hospital again.
 

Henry's men friends asked him out for meals and chats. His sick partner Jane had a network of good friends locally who popped in regularly with food and gifts.

The people were very aware of what I was going through, you know, because Jane and I were in a fairly new relationship and, you know, we were very, very close and, you know, it was sort of one of those things that was working very well and everyone thought it was very sort of tragic and terrible bad luck that this had happened. When we’d sort of both found unhappy, happiness after a, for both of us, quite a long period of unhappiness, and so some of my men friends would ask me out and take me out for a meal and chat it through. This is when I was at work during the day, so I would sort of meet up for lunch. And equally, Jane’s girlfriends could not have been more sympathetic or more supportive or helpful. I mean they were they were brilliant, yeah.

We were exceptionally lucky living in that funny little neck of the woods in London, where everybody is, there’s an enormous sort of network of very good friends who will go out of their way, and the support that Jane’s friends gave her was unbelievable, absolutely incredible. People would turn up, you know, knock on the door and they’d bring round huge suppers for us all to have, and Jane would be brought downstairs, and they’d just deliver up this fantastic food. And people came round every day with things, food and presents and flowers and make-up, you know, and it was absolutely brilliant the, that side of it.
 

Henry was so shocked to discover the prognosis of his partner's cancer on the internet that he never used it again.

We, when we were told that Jane had bowel cancer I knew nothing about bowel cancer at all. I mean I’m, it meant nothing to me. I didn’t know where it was in the range of cancers or anything. And I went on the internet and was absolutely shocked to discover that sort of, there was a sort of fifty per cent chance of dying within the first five years. I just couldn’t believe it. And, I never went on the internet again in connection with the illness. Jane’s eldest son had this, exactly the same experience. He was shocked, because we all thought Jane was, you know, immortal, you know, sort of couldn’t believe that she had anything wrong with her. And so it was a question of how much you want to know.  

The surgeon gave Henry permission to visit Jane on the high dependency unit out of visiting hours. When he did this another doctor made him feel very uncomfortable.

 My first bad experience that I suffered at that point, was that the surgeon, who was a female surgeon and very, very nice and very sympathetic to us, had said that I and two of Jane’s children, her sons who had both grown up, could go and see Jane in the in the, now, which ward was it? It wasn’t intensive care but it was something similar to intensive care, and although it was two in the morning, she said, the surgeon rang through to the this ward and said that arranged for us to go down and see Jane. We got there and it was quite clear that the young doctor there did not welcome our presence at all. By the way, we were now in an NHS hospital. I should explain that. We’d gone from private, second, second operation was done privately. The third operation, because they’d had a different surgeon, was done in a, in [Town] in an NHS hospital. The young doctor made us all feel terribly uncomfortable. He clearly didn’t think we should be there and he was very hostile and it was very, very upsetting. And I’ve never mentioned that to anyone before but I did feel that, I almost wrote to the hospital and said, you know, “This is not the way to treat people who’ve not gone through what the patient’s gone through but who the nevertheless are going through absolute hell and who’s, who need to keep their strength and their spirits up in order to be able to help the patient.” So that was my first bad experience with a doctor.

Henry found the Macmillan nurses extremely helpful and practical and said that they were a great source of strength to him.

The, at this point, when it was clear to all of us except Jane that it was terminal, we got in the Macmillan nurses, and they were absolutely brilliant. They did all the things that we weren’t sure about. Sorted out everything, they, they arranged for Jane to have a new bed brought into the house, which sort of she could press buttons and sort of lift up and all that kind of thing. They arranged for, I’m just trying to think what else they did. They, they just took over and all the sort of admin side of it was sorted for us. They knew exactly what to do. They were incredibly nice people, and I mean I can’t fault them. They were absolutely brilliant.

Did you feel that you were cared for at all in your role?

Well, only in the way that people dealt with me in a very, very sympathetic way, yes. Again, I’m going to go back to the Macmillan nurses, who were I found a huge source of strength for myself as well because, just because of the way they dealt with me and talked to me and made life seem normal, in a way, in a funny way. They were so sort of straight-forward and kind and practical.
 

As his partner's health deteriorated, Henry found that she became more demanding. At times she wasn't the calm and sensitive person he had known.

Did Jane’s illness have an impact on your relationship?

Yes, well, it did a bit towards the end. I mean, obviously, obviously, the physical side of things and we were sort of sleeping in separate beds [coughs] for the last sort of two or three months I suppose. She, trouble with it was that, yeah, she, she Jane was a very, very even tempered, calm person, very gentle and that in the last two or three months, she could get quite difficult about silly little things and started complaining about things, you know. All silly things, you know, like a door that hadn’t been closed, which possibly was creaking and therefore irritating her, but there were little things and a lot of it was directed at me, why wasn’t I, why hadn’t I sorted out? And I did one at one point I sort of said, you know, something, words to the effect of, which was when I snapped at her. I sort of said, “How come everything round here seems to be my fault?” And I said it in a rather a sort of unpleasant way, and I actually walked out the room because I sort of, [grrr] sort of a bit cross. But then she called me back and said that she apologised. She said she was, it was sort of heart breaking, she sort of apologised for upsetting me.

But she did change in that sense, that she became very demanding. She’s not a demanding person normally but she became very, very demanding and you know, [click] “Snap to it.” And, you know, I remember once when she she’d sort of rung my phone in the middle of the night to go to the loo, and then I’d just got back, just going back to sleep and the phone rang yet again, and she wanted a glass of water, and part of me felt we could have done both those together. But Jane hadn’t seen that. She was… I was just there to sort of do things for her, and she lost a lot of her sort of sensitivity. But equally, at other times, she could be incredibly sensitive while all this was going on, so it sort of tended to vary a bit. But she was very sensitive, you know, when she had the chat with, sort of last full conversation we had just before she died about sort of how she wanted me to lead my life. And that was very, very sensitive and very understanding and caring. So it could change, but, yes. It did change a bit.
 

When Henry found out that his partner's cancer might be terminal, he felt all he could do was grit his teeth, get on with things and give her all the support he possibly could.

Well, that was when I, through looking at it in the, on the internet I sort of realised that it was potentially terminal. But I think it was the first interview with the oncologist, just after her three operations, when I sort of thought it didn’t sound, I think Jane’s friend came to see her in the ward or, well, in her room that, that evening and I went out to see her and I said, “I can’t believe what I’ve just heard. I think he’s told, just told Jane that she’s got about a twenty five per cent chance. He hadn’t said it, but sort of that’s what I think I’ve just read into it.” And, “But,” I said, “Don’t for God’s sake tell Jane because she seems to be, you know, thrilled that she’s making such good progress.” But that so, I mean very early on I sort of read into what they were saying that it was very bad.

How did you cope with that?

How did I cope with it? Just gritted my teeth and got on with it. You know, there’s nothing I could do other than to give her all the support I could and you know, make sure that she was getting, where possible, the best possible treatment. But I’m not a sort of, I don’t [laughs], I just get on with things [laughs]. I deal with things in my own way so I did, just sort of gritted my teeth. I mean I was going through a sort of private form of hell, you know, you sort of, did sort of dream up stupid things to sort of, keep you going, like sort of, I’d walk back from the station every night and I’d say, “If a number 36 bus doesn’t pass me before I get back home, Jane’s going to live forever.” You know, it’s that sort of stupid thing that you go through your mind, you sort of make up these silly mind games to sort of keep you going, and then the 36 bus hasn’t passed you by the time you got to the front door, you think, “Yeah.” You know, I know it’s ridiculous but it’s those kind of games I play with myself that kept me going. And, and also the determination, well, to see Jane right and also to, I wanted her children to know that, who also had been very supportive, to know that they were, that I was sort of there for her and doing my bit. And just because I’d had sort of a relative short, very few, very good years with her didn’t mean that I was going to desert her when she needed me. So that was very important to me for them to know that I was there for her.