I spent a month in the hospice before you know and after having this shunt fitted and in that month just unfortunately probably nine different ladies came into the ward and died. I watched them. I saw them come in on day one they’d be fine, chatting and by about day four or five they’d gone. So I have seen what happens at the end and if I could avoid it happening to me I would, simple as that. I know what I’ve got to look forward to;

It’s was bad luck really in a way for me that I spent that month in the hospice really bad luck because I’ve seen it first hand where as in the past I could only guess at I suppose what it could be like at the end and its not a pleasant prospect and if I could just take enough of something to put myself to sleep for good. I would happily do it and… If somebody wants, you know wanted to help me… if somebody was brave enough to help me I’d be grateful to them.

Well some countries are introducing, it as a policy, aren’t they? So it is being..

Yes I know but I haven’t read anything about it. I mean I’ve seen the headlines from time to time somebody went to the European court didn’t they for the right to die? I can’t remember what the outcome was now;

But it’s a way of people having control isn’t it?

Yes, I was gonna say it’s almost a nonsense if we can’t decide what to do with our life at the end isn’t it; Why should a judge be able to say no I can’t kill myself if I want to?

When you said it was bad luck to be in the hospice then, do you mean because there were that number of people who were coming to the end of their lives?

I think so, the nursing staff kept saying to me, ‘It’s just unfortunate that you’re here at this time. It just happened to be a bad time for them apparently, but it wasn’t pleasant. It wasn’t a pleasant experience for me.

You see conversely a week ago I went to a day centre that we have here for cancer sufferers. it’s literally just a day centre. You go between the hours of 10 and 4 and there are other people to talk to. But again on that day I wasn’t comfortable because some of the other patients there wanted to offload on me, and tell me all about their situations and I couldt cope with that. I didn’t want to hear it and I didn’t want to be involved in telling them about my situation. I tell you, I am just very confused. There must be younger people who are terminally ill like me but I don’t know where they are;

I went to this local day care centre a couple of weeks ago for the day and even there, although I was told that some of the patients, that particularly on Friday, are younger they weren’t. They were in their 7s at least. The trouble is we never see ourselves as old do we? that’s the problem.

If we are in our 5s and 6s that is a generation isn’t it? Our generation is different from people in their 7s and 8s.

Somebody somewhere must have information about younger people who are ill but I wouldt know how to access that. I’ve got no idea who could tell me that;;

As things are going to progress and the illness takes its course, what sort of care do you think you will need?

Yes. I’m definitely going to need more care than I have at the moment and that is itself very difficult because… Well, les go back to when I had this infection and this shunt. I felt I was very ill at that time and I thought I was going to have open access, as it were, to the hospice that I’ve been in for a month, but sadly that’s not the case. You cat just pick up the phone and say,I’m not well, can I come back in;

Once yore out of th; hospital system you then become the responsibility of your GP, apparently and so if I’m not well I have to call on the GP and then he would refer me back to hospital or some respite care somewhere, if there is some available;

So are we back to resources again;

Yes, wre back to resources again, that’s right. There just aret any. There aret any. And what I suppose I will end up doing is paying somebody to look after me full time here in my own home and… yes.

You mentioned that if you wanted respite you contacted your GP and he would look whether specific facilities were available. Were you saying that you were almost quite in favour of the care provided in that setting? That you would opt for that;

To go back to the hospice that I’ve been in?

Yes, did I get tha; right?

Yeah, I just assumed that’s what I could do and I was wrong. I was wrong to make that assumption.

But I was thinking yod thought about it just as a sort of break?

Yes.

But supposing you wanted that for permanent care, instead of for nursing care?

I would have to provide it [care] for myself. I’ve since learnt that I’ve got to provide it for myself unless I’m so ill that the doctor says,Oh no, yove really got to go to hospita. Then I gather he can arrange something for me somewhere but it wot be at the hospice I’ve been in, it will jus; a local hospital somewhere that’s got a bed. A palliative care bed, but if it’s just a case of me being generally under the weather and not able to do much for myself at all, but not really needing nursing care, it’s up to me to find somebody to pay for, somebody to be here to live with me in my own home;;

Well one of the things you said to me on the phone was that it was something that you mentioned in the first interview and that was the difficulties of when you’re on your own, you come out of hospital;

Yes.

And the support isn’t really there as much as you would want to;

No, it isn’t but I’ve learnt that by talking to the Social Service Care Manager she has given me various bits of information which I can now draw on. Before I left hospital she devised a Care Plan for me for somebody to come in first thing in the morning to get me up and for somebody to come in at bedtime and help me go to bed. Well, since then I’ve discovered that’s not enough and I now have somebody who comes in at sort of tea time and helps me to get a meal at tea time;

So basically… you have to ask. Sometimes the help is there but you have to make the right place to ask and I think that’s the difficult bit finding out who to ask.

How did you sort of discover who to ask? Was it through the Macmillan nurse?

Mainly through the social services lady, I think.

You just rang them up?

Yes I was given her name and telephone number whilst I was still in hospital I was going to show you. That’s the Care Plan that was devised for me and so I contacted her.

How is the Care Plan worked out for you?

The lady, her name is [name] she simply asked me questions and said ‘What do you think you need, will this be enough?’ Because part of the problem there is that you agree to the Care Plan whilst you are still in hospital not really understanding what you’re going to need but it has been assessed a couple of times. She has been in touch with me and said, ‘Is this enough or do you need more?. So that is when we were able to build a bit more in;

The drawback though of course it that I did not appreciate that social services do not actually employ their own staff they actually use private agencies and even though the social services may agree to you having this extra time the agency has to be able to find the staff to cover it and that isn’t always easy. I haven’t been able to have help over the weekends except Sunday. I can have help Sunday tea time, I can’t have help Saturday tea time because there isn’t anybody that is prepared to work;

You say that you feel let down.

I do, I feel very let down because the last few months I have discovered this – well I’ve always… I’ve heard about a CT scanner and didn’t realise what it did;

I just feel that maybe that option should have been there earlier, and could have been there earlier, except that the cynical side of me says that it must just come down to cost. I understand that the majority of women that are treated for breast cancer it’s successful treatment. I suspect that the percentage that slips through is actually very small.

Did you ask if it would have been available to you?

I havet asked. I only received all this information about four weeks ago and it’s initially you just try to take on board what yove been told, I mean the questions sort of come later. I havet asked as many questions as I should ask because part of me realises that they’re not going to be able to help me so what now is the point of having a post mortem on it all;

theres little point in finding out what they should have done because they didn’t do it and they cat do it now to help me anyway. I’m half way through my current chemotherapy session. it’s obviously not controlling the cancer yet because I’m still building up this fluid and I’ve got to go into hospital again next week to have it drained off.

And when I saw the oncologist yesterday I said I’d like to go in again and have it drained off because I’m convinced that it is actually slowing and I, it would help me psychologically to see it disappear and then I can better see how much is being produced each daand he just said to me,You know don’t bank on it, it probably, it may not sto, because hes giving me the message all the time,don’t build up your hopes because this is the end and you know yove got to try to accept it it’s just so hard when in September you thought yod got 20 years and in April you havet even got 20 months, and there is… oh dear, I don’t… it’s so hard;

Whilst they give you medications and treatment to help you they sort of forgot that they need to treat my brain a bit as well; You know the emotional side of it and they seem to have sort of forgotten that in a way;;

I am angry and I cat accept it and that’s nothing at all to do with the staff at the hospital or anything it’s just life isn’t it;

I’m not a particularly religious person and so I don’t find… I don’t really have a sort of strong faith to hold me up;

I think probably my attitude at the moment would be anyway,How could God love me if you know hes made this happen to me And,Why should, why should this be me? Why me That must be the question that everybody that’s younger must ask. We expect to live until we are in our 8s or even 9s and the thought I’m going to pre-decease my mother is not a good one.

Just comes back to the fact of not being able to accept the fact that I’m dying, just cat accept it. I’m too young. I’m not ready to go. I’ve got all these lovely babies and it’s just not fair but then you know nobody ever said life was going to be fair, I know.

There is one more hurdle I have got to overcome and that is really and truly explaining the position to my sons, but my nurse said to me this morning that in fact there is a service available through the hospice, a counselling service and if I wanted to that counsellor would actually sit down with my sons;

I wouldt go that far, I mean it is something I will do myself, but perhaps I will try and have a chat with this lady first to give me an idea of how to actually go about it. So I will do that, yes. Next time I see my nurse I will ask her if she can put me in touch with this person.