Interview 04

Age at interview: 63

Age at diagnosis: 61

Brief Outline: Diagnosed with leukaemia in July 2001; treated with chemotherapy and radiotherapy.

Background: Teacher and youth community officer (retired); married, no children

A nurse from the hospice gave her very useful advice.

And another nurse told me that I could apply for palliative care through my GP. And another nurse told me about Cancerbackup which is a telephone number that you can ring and ask any questions about your form of cancer, and also they send booklets out that are appropriate to you. 

So we did apply for palliative care, and in due course a hospice nurse came to see me here in my own home and she explained that she could help with things which weren't entirely to do with my treatment, but they would perhaps help to make life a little bit easier for me in the circumstances that I had found myself in very unexpectedly. For instance, I was in a wheelchair before anybody knew what was wrong with me and fortunately I've managed to get much better now at moving about through the treatment I've had, but at the time I did need quite a lot of help and support of that kind.

Now, the sorts of help that she's been able to give me... At one stage I said to her that because I couldn't stand up and make any meals, my husband was doing it all and she pointed out that there were two things in the neighbourhood that could help with that. 

There's a firm that will deliver you two weeks supply of frozen food and there's another one that will supply hot lunches. And we actually have the hot lunches now, even though we always used to have our main meal in the evening, we don't now, we have this hot lunch, which has relieved my husband tremendously, because for a year he did do all the cooking and then, because he likes cooking, but then it got just a bit too much for him, so that's what we do now and this was, you know, a suggestion from the hospice nurse. 

Now some of the suggestions are much more sort of to do with medical things - for instance, if I haven't got enough of some particular prescription then she has very close contact with the GPs and she can just get any prescription. And she explained that the local pharmacy will bring... will deliver the prescriptions, which you know, I haven't really known that a person like me could ask for that service.

Explains why caring for someone with terminal illness can be difficult.

And particularly when one has to change one's whole approach to life; both my husband and I, or whoever is the carer and the patient, probably have to change their entire outlook on life. The things that they might have once been planning to do, holidays and things, might be quite out of the question and, and they have to find another way of  thinking about what they can do. And their attitude to life really. Yes, their attitude to life as well, because for the carer it must be a huge shock to realise that perhaps the person isn't going to live very long that with a spouse anyhow, that, you know, can make a huge difference. 

They might think everything's nice in life and then suddenly, this happens and if it's, I was going to say, if it happens sort of early on in retirement as I suppose it did for us, when you think you've got many years ahead, then it's a big shock. 

I mean my mother lived to 101 and her sister lived to 103, well, it was only six months after my mother died that I acquired this illness quite out of the blue when I thought I'd got another forty years to live, and so it puts a different emphasis on life and you have to change your attitude really, and that isn't easily done and it may be even harder for the carer than for the person who's ill.

So I think that the support which somebody such as a hospice nurse, or it might be a Macmillan nurse or there are other forms of palliative care, I think these are essential really, to help people to get through it because I can quite see how perhaps a carer could have a nervous breakdown because of the huge changes in life. 

I mean it may be even worse if the person who's ill is working and is bringing, normally bringing in income and then is not able to do so. I wasn't in that position but a young family... so there must be terrible shocks to the system that have to be coped with really.

Her husband's health suffered because of her own illness.

Oh yes, now I'm very fortunate in that respect that I can... that my husband and I do talk about things. And then, I mean he... there are also aspects such as the health of the carer as well. And that has to be taken into account and we found that we weren't thinking of his health sufficiently. 

And we discovered that whereas the two of us had been going to the gym regularly twice a week, it all suddenly stopped when I became ill and so he wasn't going to the gym, and so he put on weight and then he was found to have high blood pressure and so on. And so that's all been dealt with now, but it was actually over a year before we realised that his health was suffering because of my illness, so that's something which has to be born in mind.

"Everyone should have a key worker such as my hospice nurse".

My hospice nurse says that she is my key worker and I think each person with an illness of this kind needs to see, find out who their key worker is. 

One thing that she suggested to me at one stage was a TENS machine; it means Trans Electrical Nerve Stimulation. And I was able to hire one from the local pharmacy for a week and try it out. So sometimes there are things which you might think are expensive, but could be hired.

Yeah.

And it's worth really finding out from, from the local pharmacy perhaps. You know, if things can be hired rather than bought.