Janet & Chris: Interview 02

Age at interview: 59

Brief Outline:

Janet was able to fit her work around supporting and caring for her partner Chris, who was diagnosed with ovarian cancer in May2008. Chris died in February 2010. Janet is currently struggling to come to terms with her loss.

Background:

Janet is a self-employed classical musician and conductor. Janet was married to Chris for three and a half years. Ethnic background - White British.

More about me...

Chris’s diagnosis of ovarian cancer was a tremendous shock, and Janet and Chris sat up into the night discussing the implications of the diagnosis on all aspects of their lives. Janet accompanied Chris to her appointment with the cancer specialist where they discovered she had significant tumour spread, so surgery was booked very quickly with the expectation of a successful outcome. Chris was able to take 6 months sick leave on full pay. This was a great relief as Chris was the main ‘bread-winner' so they had financial security while she recovered from her treatments. Subsequently they also found that Chris’s pension would also be payable to Janet, giving her some financial security in the future.

The surgery went well and the surgeon informed Janet that there was a very good chance of a good recovery. Janet felt very comforted and positive by this news. Janet visited Chris in hospital every day to take in things she might want, to show solidarity and to let Chris know that she really cared for her. Janet and Chris attended the specialist cancer counselling together. Although the counsellors normally expect to just see the patient, for Janet and Chris this was very much a joint experience and so they went to counselling together.

Surgery was followed by chemotherapy and Chris lost all her hair. Chris wore a wig to work but she found it itchy, hot and uncomfortable, so she took it off at home. Initially Janet found seeing Chris with no hair distressing but she got used to it. As Janet was able to work from home she was able to support Chris during her chemotherapy, making her food, checking she had things to read or to listen to and generally comforting and caring for her.

After the last cycle of chemotherapy Janet and Chris went on a long weekend away. Whilst they were away Janet heard that a close friend of hers had died suddenly. She found this very alarming and it heightened her awareness of Chris’s illness and the uncertainty of her recovery.

Blood tests after the chemotherapy indicated that whilst the tumours had not completely gone, they had receded. This news was encouraging and allowed Janet to look ahead to the next phase of their lives, knowing that one day the cancer would return. They anticipated several years together and made plans to enjoy this time with each other.

After the chemotherapy Janet and Chris resumed their old routines, sharing the household tasks and gardening. Chris was able to sing in the choir that Janet conducts and they did several concerts together, which was a joy for both of them. They had several very enjoyable holidays in the following 9 months before the cancer returned.

The first signs of the cancer becoming active again were very distressing but Janet and Chris talked through their options together, and with their MacMillan nurse, and decided to delay another cycle of chemotherapy for a few months. They took a holiday in New Zealand; a place which had special meaning for them.

On their return Chris started chemotherapy at a local hospital and as she felt very unwell, she was unable to return to work. After her second session of chemotherapy, Chris went into hospital for several days. Janet supported her by visiting every day. On her release from hospital, the district nurse visited daily and Janet cared for Chris at home.

Half way through the third cycle Chris was having problems and was admitted to the local hospice. Chris remained at the hospice until she died and Janet visited every day she could. Bad weather prevented her visiting on 2 days and Janet found it very hard to be unable to visit Chris on those days. Chris stayed in the hospice over the Christmas period and Janet was able to stay at the hospice with her. Janet knew Chris was becoming weaker and the most important thing for Janet was that Chris received any kind of care that she felt she needed.

Chris died while Janet was not at the hospice and Janet received the news over the phone. Janet felt numb but had to start thinking about all the practical issues around Chris’s death; telling family and friends; registering her death and collection of Chris’s personal effects from the hospice. These practical things filled Janet’s time and gave her something to focus on.

Chris and Janet had discussed funeral arrangements, so Janet was able to organise a funeral that reflected all Chris’s wishes. It was a comfort knowing that everything was as Chris would want it. Unfortunately Chris’s parents were unable to attend the funeral so Janet arranged a recording of the funeral. For several weeks after the funeral there were many practical things still to do, responding to cards and letters of condolence from friends and family and also dealing with legal issues. Janet also started to reflect on her future life without Chris.

Janet found being at home alone very hard. A significant anniversary was a watershed and Janet sought counselling to help her cope with the onset of depression. Janet felt unable to think ahead. Music concerts that were already planned gave Janet a focus and one of the concerts became a memorial concert for Chris. This was very uplifting for Janet.
Chris’s birthday was filled with planned activities but the day after Janet was very low and depressed. Friends were always available to talk to and this sustained Janet through the next few months.

It is now nine months since Chris died and Janet is still trying to come to terms with a life on her own. There are days when Janet feels it is so difficult that she is not sure how she can bear it. She is comforted by the knowledge that Chris felt her life had been full and that she had been able to support Chris through the cancer journey.

 

Janet would advise others to focus on a handful of things they really want to do. But also, be ready to let the loved one go when their quality of life becomes too poor.

If you reflect back on the whole journey, if you were talking to somebody who was at the start of that journey, what would you, what advice would you give them?

I would give them two bits of advice I think. First of all, discovering that your partner is terminally ill and does has a limited time, to try to make the most of the time that is left, not in the sense of rushing around trying to do everything possible, but just trying to focus on a handful of things that you’d really like to do, if possible, to just try and do those. Don’t try and cram as much as possible, just do a few things.

And then the second thing is, and this wouldn’t apply to everybody, but to, to realise that the best thing is not to try and remain alive for as long as possible for its own sake but to retain the quality of life for as long as possible and to engage with palliative care on, on a proactive basis say, “I want the palliative care to allow me, not to stay alive as long as possible, but to remain as well and as enjoying, enjoying of life as possible during that period.”

So from a partner, carer’s, supporter’s viewpoint is there anything you would advise a supporter to do to help that process?

Well, again, I suppose in my case, although I desperately wanted her to be with me for longer I was also aware that to help her, it was best to accept the facts that my time, that for the time that remained to us together to be as bearable as possible, it was also important for it to be shorter. And to just accept the fact that that she wasn’t suffering for any length of time more than necessary.
 

Janet's partner Chris decided she wanted to stay in the hospice and not to go home and take her sickness into the home.

Yes, I mean she was really from, from well, I mean I’ve already explained when, when she went into the hospice, it was almost two months that she spent in the hospice and really the level of care that she had at the hospice was very, very good indeed and I felt it was an appropriate kind of care that she was receiving. I felt it was totally appropriate that she was at the hospice and, and that she was allowed to be there for all that period.

Now, if you reflect back to that, do you feel that has, was a good decision for coming back here, you know, you still live here?

Yes.

And so the last time she was here she was not….

That ill.

that unwell?

Exactly, yes. I think it was a really good decision that she, she suggested that she didn’t come home but she did say to me, “Look, I’ve decided I really want to stay in the hospice. I don’t want to come home and the reason I want it is because I don’t want to take my condition, my sickness, home for you to have to feel it in the house.” She said, “I think it’s much better for me to be here. Do you agree?” And I thought about it, really quite briefly, and said, “Yes, I do agree. If you’re happy with that, I agree that it will help me to cope with being in that house.” And, and I’m sure it was the right decision and I was happy about it. I didn’t feel that I really wanted her to be at home with me. I wanted her to be with me, of course, but not feeling the way she did. I didn’t want her to feel sick and be with me.
 

Janet's partner Chris had not wanted to know the details of her condition, so they were both upset when the consultant insisted on telling them anyway.

I’d like to know if you felt you had enough information at each stage? Did you feel you were informed and in control of what was about to..?

Well, this again was a slightly odd situation because Chris has said to me as soon as she’d been diagnosed and had started the treatment, she’d said to me, “I don’t really want to know very much about the details about my treatment.” And, again, because that was her choice I went along with that. So she was never given very specific details unless she asked for them except, and this was the one real sort of black period, when she was with the, she was under the consultant of the hospital, who was governing her treatment. That the chemotherapy, basically, the choice of chemotherapy, this was not the consultant to do with the surgery. This was the chemo.

We went for an interview with him and he, he said to her, “I understand from the, the staff that you’ve already talked to, that you don’t want to have very many details about your treatment.” And she said, “That’s right.” And he said, “Well, unfortunately, I believe that I can’t give you the correct, my own chosen level of care unless I give you all the information that I have and I’m going to insist that I give you that information.” And she said, “Well, I’m not happy about this.” He said, “Well, look. I insist and I’m going to give you this information.” And he went ahead and told her what her condition was, exactly what the name of her condition, what her likely prognosis was, that the possible treatment and the likely prognosis. And I could see that she wasn’t very comfortable with this and I didn’t break in here because I didn’t feel that it was really my place to say anything but after that interview with the consultant she was really beside herself with, you know, she was in tears.

She was really, really unhappy and the nurse, the Macmillan nurse, gave us a great deal of sort of comfort then and said, you know, “I understand that maybe he overstepped the mark by going against your wishes.” And I still believe that that he was wrong to do this but after this, again you know, I didn’t feel I needed to know the tiny details about her cancer and about what stage it had reached. She was only given enough information to know that that it had started to grow again and that it was affecting the operation of her body.
 

Janet felt the hospital care was too focussed on achieving a good medical outcome rather than controlling Chris' symptoms.

The care that she had from the, the replacement consultant on the oncology unit, not, not the consultant who’d originally gone against her wishes, but the, the new one was very, very good and Chris was always very complimentary about the way she was treated by that consultant and the way she was spoken to, the conversations they had, the information that she was given, the help she was given. She had very, very high respect for that.

She was then put in touch with the staff at the other hospital and again, she didn’t have an issue with the care but she felt that it was a little bit focussed on, “We want to make you better come what may.” Or, “We want to treat you the best way we know how regardless of how you may be reacting to it.” The, “Regardless of the actual palliative care that maybe we should be beginning to address.” They were more concerned with the medical outcome rather than the actual care that she was experiencing and I was aware of that because I met with the consultant there as well with Chris and I got the feeling that it was, although she was very nice and, you know, we could understand each other on an intellectual level, I felt that it was just slightly focussed on something that that didn’t seem appropriate to Chris.
 

During the time she cared for her partner, Janet felt they were drawing closer together, talking about how much they meant to each other.

When you think about your relationship do you think it changed as her illness started to take hold? Did you feel the balance of your relationship change?

Yes, but in, not in a bad way. I mean I felt that we actually drew closer together because we began to really talk about some things that we’d maybe not bothered to talk about before because it didn’t seem to be important. But we began to talk much more about what we meant to each other and the things that we’d experienced that we’d really enjoyed together. So that was a positive thing.

That, in another way, our relationship changed in that I began to take a little bit more, what’s the word, responsibility for things that she tended to have taken responsibility for before, like she always she actually really enjoyed shopping and I hated shopping. We’re talking about, you know, day to day shopping, shopping for food and things, so because she was happy to do it and because I hated doing it, she always did the shopping. She always did the supermarket run. Well, of course, I now had to do it. And I was quite capable of doing it but I was a bit out of a practice so I had to kind of really focus on making lists and things of what to get. So yeah, that balance changed slightly, from the point, yeah.