Weve just been talking about how some people find it quite difficult to talk about death and dying.
Yes
And what they’re frightened of but you seem to be different in that respect and I’m just wondering how you’ve managed to be different about it?

I didn’t always used to be. I used to hide behind the cloud of death. I would get paranoid about it. It was going to be this, it was going to be that. Then I found I had some counselling talking and all of a sudden I found that my worst enemy was myself, hiding behind, not talking what I was frightened about. And sometimes if you bring a problem out into the open and talk to other people about it you can sort it out;

When you’re told that you’ve got an illness that you’re dying from, you’ve got to make that decision in your mind to talk. It’s easy to hide behind a pillow and cry on your own and not tell everybody you’re frightened. It’s hard to admit that you are. And I should think anybody who’s just been told they are now terminal is terrified. The best way to deal with that fear is to talk, to be in control so you call the shots. It’s your life. Which is what I’ve done. I’ve decided it’s my life, I’m going to call the shots. If I want to do something I’m going to do it. If I want to buy something I’m going to buy it. One thing I’ve been very careful is not to get myself in debt at all so nobody else has to worry about that.

I want to take control now. I don’t want to be resuscitated. I don’t want intervention. If it’s going to happen, I want it to happen. I don’t want to be in a vegetative situation where my family have to sit round a machine that’s breathing for me and thinking for me. I want them to remember the Mum that fought to the end and just went to sleep.

Have you written this out?

I’ve written it out myself as I want and instilled it in a letter but I’ve got to… I’ve evidently got to get a proper ‘living will done. I have notified my hospital that I do not want to be resuscitated, something I did have to rescind recently but it’s back in place again now.

Why did you have to rescind it?

Because I had to have surgery on my mouth and it was just in case anything went wrong during it, but it would be a bit pathetic going out having your teeth removed. So, I decided after great talking with the doctor that I would agree to it being removed while that was being done. If anything went wrong they would resuscitate me but I was still tongue in cheek, well tried to be, while it was happening because I did feel that if I had to go out then, actually I didn’t really want to come back;

If I’d known, you know it was going to be so uncomfortable afterwards I probably would have changed my mind anyway. But apart from that, it’s something I’m in the throes of sorting out. I will keep a copy with me at all times so wherever I am nobody tries to resuscitate me or if anything else comes along, that I will refuse treatment.

Have you talked about the kind of terms you’ve specified with anybody?

My consultant. Weve talked. Hes known me for a very long time, since I was a kid and it’s hard for him; It’s hard for me. He knows I will fight for as long as I can but he also knows that I will go with my dignity.

When I know I’m not going to be able to cope with life any more, the pain is bad now, I’m on morphine, I get a lot of break through pain. When I get to the pitch where I really can’t cope with anything any more, where my quality of life is totally gone, I will tell my husband I want a really good day out with the kids, which is when hell know that when I go to bed that night I won’t wake up the next morning.

Because you’re going to take control?

Yes.

Have you talked to anyone else about that?

Yes I’ve talked to my GP about it. He wishes I lived in another country because that decision would be helped.

Mmm. This is something I talked about to your friend this morning, and we talked about the Government’s national policy on it,

Yes

On assisted suicide and euthanasia,

Yes

And how theres a lot of debate at the moment about this,

Yes

And I wondered like if you were in control of legislation what would you say should happen?

It has to be really carefully dealt with. I think that you have to really look into it seriously, whether this is the right thing for the right person because I think there is the risk it might be abused. But with myself if the legislation was there then it would be nicer for me so I’m not on my own which I know I will be because I don’t want any of the family here when it happens.

Why don’t you want anyone with you?

Because I don’t want them involved, I don’t want them to get in trouble.

You don’t want them to get into trouble?

No. Which is a tough one.

Mm

But I shall concentrate on the day weve had out beforehand.

Will you explain it to them in a letter or…

I’ve done it already yes. I’ve already written a poem to be read out at my funeral. I’ve written a letter to both my children. In the letter I’ve told them if they’ve ever been angry with me and they’re feeling guilty please don’t because it’s no more angry than I felt at myself. I’ve given them permission to be cross at the end which I think is going to be important for them because they will be angry, they will be cross. They’ll be hurt, they’ll want to know, they’ll be in denial that it’s happened.

You’ve thought about it so deeply and so thoroughly haven’t you?

Yes I’ve, I have because I wanted to stay in control;

Well thank you for telling me all that because it’s such an important,

Yes

Aspect of everything isn’t it?

Yes, yes

And anybody like me tries with difficulty to put myself in your shoes.

Mm

No one can but respect what you said.

Yes. I think if some of these ministers and politicians who are against euthanasia, I often wonder if it was their life or their wife or mother how they’d feel then. I don’t like my child

What would you really like to happen? You say you’d like hospice care. You said why that’s not possible. Given that reality, what then would you want?

The basic things I’ve been given from the District Nurse, like the bed and the oxygen machine and stuff. But theres… it’s the pastoral care to help you prepare. The understanding. Knowing that theres going to be somebody there for my family afterwards. Prepare, you know help in preparing my family. I try to do as much groundwork as I can myself by going to the library and reading as much as I can and finding books which are the right books to give to my children to prepare them;

I’ve written a poem for them, my son and I have recently written a song so that hes got something positive to work on when it’s going to be a negative time. It hasn’t been easy, theres been many tears while weve been doing it.

‘I’ve got my religion, I’ve got my church but even there, you know it’s one vicar who covers the whole parish. Hes got everybody else and it’s quite an elderly area so hes got a lot of elderly people to look after. And sometimes, because you’re young, whether you’re terminally ill or not, you get forgotten. You go by the by where with hospices you have the hospice chaplain who’s trained and has got an understanding of waiting for death, more so than the everyday chaplain;

I’m angry because the government doesn’t make sure that everybody’s equal. This is not right, this is wrong. Theres so many people with so many different illnesses at so many different ages; you’ve got young kiddies. Things are beginning to change with the hospice care for children; they are beginning to take all different illnesses, which is brilliant. You know they need as much support as possible and bless their hearts;

But also the parents who get ill, they need as much support as well, and I think the attitudes of this government and the medical people out there, they have got to look at everybody in an equal way. Weve all got to be treated equally;

Just because one person’s got cancer you give them everything. Somebody else has got another disease, which okay it’s not cancer, but it’s equal to cancer, it’s just as painful and may need just as much pain relief, support, understanding, pastoral care as the next person. So why are we treating people differently?

What about carers allowance?

Right. Care Allowance is not brilliant in Good Care Allowance. I don’t know how much it is. I think it’s about ’53 now;
When you think somebody’s given up their work and they’re full time nurse and carer for 24 hours a day, it’s not a lot to give a person and they certainly lose their dignity. For my own husband that happened.

Is that what happened?

Yes;

When did that happen?

Quite early on in the disease when he became a carer because at the time my children were very young and they needed… and they were very unsettled because every time I’d go to hospital I’d end up being admitted or they’d come home from school and find me collapsed on the floor not breathing. One time my eldest found me totally unconscious, got me breathing and then rang for an ambulance. At the time he was 5 years old. No 5 year old should have to do that.

So your husband, you say, is a full-time carer?

He was, yes. He is back in employment now, mainly because I think it’s important, especially at his age. He needs to be in a job. Plus it also puts a normality range, that even if I go…

Are you all right?

Yes. Even if I go he has still got a job. Hes still got something to keep going and I think that’s important for a carer. People forget the carers; it’s a very hard task. Ironic, you know for a while I was my son’s carer and then I became ill so I needed a carer and it is hard. You’re on call 24 hours a day and sometimes with him I would never get to bed for 3 days. Wed go 3 days with no sleep.

Yes. That’s how I try and see things. I always try and find a perspective. If I’m trying to understand something, I’ll try and find a physical thing so it helps me understand and then I can picture it in my mind. As with pain, pain winds me up sometimes so I try and picture the pain as a stone, and I try to imagine picking the stone up and throwing it out to sea. And all right, the sea might bring it back and cause the pain a bit more but I’m hoping a bit of the stone has eroded away so it’s come back smaller. And I keep throwing it away until the pain ends up a tiny grain of sand. And in my mind I’ve managed to crush the pain away.

And you’re finding that helpful?

I do that all the time, constantly do that, especially at night. Night-time I climb walls.

Because of the pain at night, you mean?

Yes. I’ve got quite an interesting bits of wallpaper missing from the back of wall where at night I grab on to back of the bed sometimes, when I’m in so much pain and I’m crying. And I just catch the thing and then I rip to try and get rid of it.

That’s very hard for me to imagine, you know.

It’s something you have to come to terms with. It’s something you have to accept is part and parcel. We have drugs, MST and stuff like that which is slow release morphine. But at the same time I don’t want to be drugged up to the eyeballs. I want to be in control. And if I can try and be in control of the pain… sometimes you’re too tired to control it.

The district nurse comes out although shes told me once I get bed ridden, they will come in every day. I haven’t got any pain control clinic, where, if I had something like cancer I’d be under the hospice and I would have a pain nurse, a Macmillan nurse, whatever.

Pain management?

Yes, pain management, which I don’t now. When I’ve been helping with the research the person who’s doing it is a palliative nurse and hes looked at my medication and just… so he keeps offering his support and has said I should be having Oramorph as well as the MST for the breakthrough pain. But because I’m not under a pain clinic it doesn’t happen.

And you can’t get it through your GP?

I can do but hes not a great lover of drugs so I don’t like ringing the doctors unless I really need them.

But you come across as a really assertive person.

Yes

And I’m surprised that you’ve not gone to your GP and said, “Look I’ve got this pain, please…”.

I’ve tired. I have spoken to them. The MST this time went up to maximum for breathing.

You’re up to maximum?

Yes, so, well it can go higher but it suppresses my breathing.

What kind of things have you said to them to try and prepare them?

I’ve told them it’s OK if they get angry. I don’t mind, you know that’s OK, you’re allowed to be angry. You’re allowed to cry. I’ve tried to let them see that I will be there for them. They won’t be able to see me but I will be there. I will be around making sure they’re OK. I’ll try and be their Guardian Angel if I can and I’ve told them that.

So you’re trying to convey to them that even when you’re dead you’re still going to be with them?

Yes, especially with the younger one with the AS [Asperger’s syndrome]. I’ve sort of told him it doesn’t matter, a person living is only just a particle, if that particle goes the memory doesn’t. The love doesn’t go; it’s left its imprint so that will always be around.

What other sorts of things have you tried to get across to them about how things are?

They get upset when I have bad days. The eldest one thinks I should go in hospital and can’t understand why I don’t want go in hospital, I want to be at home. With the younger one, he knows I don’t like hospitals so he tends to you know… although he gets frightened and gets very protective if I have bad days. He also gets frightened if it’s a bad day. It’s not the easiest thing.

Are you able to talk to them about what the future might be?

I try to yes, I try to

Or do you feel that’s not appropriate?

I try not to look ahead. We take one day at a time and if bad days are there then we try and forget they’re there, so they don’t have to look back on them. I tend… bad days I tend to detach myself from them so they don’t have the memory of it.

You were saying that a friend of yours has died recently and it’s been making you think about the care people have when they’re dying ‘

Yes, very much.

‘ and what it might be like for you. Can you tell me a bit about that?
Well, she had a cancer, a form of cancer, she was given hospice care. She was given her dignity, she was allowed to have her dignity when she died. She was in the hospice with her family around her and her last few days made wonderful, you know, taken to the cinema and days out, so her family on her last few days had days to look back at, but where with my disease and people with other diseases which aren’t cancer, we don’t have that;

We don’t have the palliative care, which we should be getting. Some health authorities will have a palliative care unit but it depends if you live in the right road, really. It’s the old postcode lottery. A few miles down the road from where I live there is palliative care but because I live 5 miles away from that, I don’t get it. My Social Services only have ordinary home care, which is personal care, and anything else I have to ask for. There isn’t a place for me to go for respite to give my family a rest; there isn’t a support to help my family prepare for what lies ahead of us;

I’m having to do it all on my own and try and cope on my own and try and prepare my family on my own when I should be really trying to take time to prepare for my ending and what I want to do, and have the time to do the things instead of losing my time preparing everybody else when I really feel it would be helpful if somebody was there to help me prepare them and let them accept it.

Ideally, what do you think you need?

Pain control is one thing that there is, with hospice care you have a pain management team. With non-hospice, you don’t. There are pain clinics but they’re few and far between and you’re lucky if you get on to one;

You have Macmillan nurses with cancers, with me we don’t. We have the breathing nurses but when you bear in mind theres 3 nurses and theres probably 3 or 4,000 lung patients under their care they can’t come and look after all of us. So you end up learning how to cope on your own;

You have to rely on your GPs, it’s okay if you’ve got a good GP and who is willing to come out. Some GP practices will come out when you call them; others will come out automatically. Once again it’s the postcode lottery whether they’ve got the money to do it. It’s not their fault if the government doesn’t give the money. Also theres the chance to meet other people in the same situation as myself;

Within the hospice care it’s a peaceful, having visited friends in a hospice, theres a lovely peaceful, tranquil feeling a feeling of reverence and total dignity;

Where if I go for respite, it’s in the local cottage hospital with lots of hip patients, etc… and the nurses have to take care of them first and sometimes you’re forgotten in a corner. ‘Oh well, shes young, shell be okay. But what they forget is yes, I’m young but my body’s old and I need as much care as the 90-year-old you’re helping to the toilet now.

You very openly admitted that you have your low days and you get really depressed and frightened and scared.

You will do, everybody does. It’s only human nature. Even animals get depressed. You have to, it’s part of the grieving process. It is the bereavement logic. It’s the loss. If a person has a leg removed they still feel the leg. Just because it’s gone doesn’t mean to say it wasn’t there. And that’s how you have to look when somebody’s got a life-threatening illness;
Yes, they’re going to die, yes, were going to die but we were there beforehand and you’ve got the memories to look back on.