Interview 11

Age at interview: 67

Age at diagnosis: 56

Brief Outline: Diagnosed in 1993 with lymphoma, treated with chemotherapy, and then developed heart failure.

Background: Auxiliary nurse (retired), divorced, 7 children

To her the hospice is a happy, loving place where she has learnt to write poetry.

You said that writing your poetry is your way of expressing your feelings

That's right, that's right.

Do you think you do that because there's not that many people around to talk to? 

It came to me, well I wasn't doing poetry first of all. I never think I could do poetry because I used to like it, and I... but I write. I was writing my life story from when I left Jamaica and then I revert back to my childhood and then I write it up to my illness, that's when I started. And then, as I said, at the day centre they said to me, "Are you going to bring some creative writing?" and I jumped at the idea. And she said to do poetry and I said, "No I can't do poetry" so she gave us the tree. "Write about the tree, write about the bed". And she said, "Look at the one who can't do poetry" and it started from there.

What does the hospice day centre do for people? 

It's a happy place. For me it's love. You get love. From when you walk in until you come out its love. I'm not saying people are not people. You get love.

Who do you get the love from?

The staff. And as I said, really as a patient, although you may not sit and communicate that much we really. We really don't have time to communicate over illness, cos you've been laughing, you been talking you don't have time to discuss your illness. Really, So much going on.

What's going on?

Well, you have... you test your brain, you know, your IQ. Like, you know, every day you got something different testing you. What you remember from what you remember. Singsong. People come in and talk to you and sing for you, and the staff themselves sometimes you know. You get excited cos they're all dressed up in the Georgian days... It's exciting. 

Good. 

You love to go, you want to go. I don't miss one day. Not unless I can't go. I'm sick.

Explains that she is an immigrant and would like to have more of her family around to care about...

I don't have anybody to talk to apart from, saying to my sister-in-law, "I went to the hospital today" and so I don't know anybody like my family I mean. My sister-in-law, my brother... they is not even together, we just friends. You know, she could say, "I don't want to know". But I just want a member of my family to understand a bit more. 

I'm in a strange country they is the only one I've got. I've got nobody to run around to. I've got no cousins near, you know, all I've got is them. 

When you say you're in a strange country do you mean you came to this country from Jamaica? 

Yes, yes.

What year was that?

1962. 

She would like someone from social services to make time to talk to her or take her out.

What things do you think should be happening for people who live on their own?

I don't think they should be sent home. 

They are sending them home, [assuming] that the Social Service are looking after them but they are not. A girl came in here this morning, and she said to me, 'Can I make you breakfast?', and all she had to do was heat something up for me, heat it up. One minute in the microwave and make a cup of tea and she stayed in standing here half an hour and I sat in the toilet waiting for her even to come and find out if I'm alright. She didn't come. 

And I came out, I got up and came out to face something and she said to me, "Oh [her name] your breakfast is made. It's in the kitchen" and I said, "Can you put it on the table for me please". And she put it on the table and she gone. That's not help to me is it. 

But what would be better help for you? If you could design the services

If she...

What would you change?

If she come in the... if somebody came in the morning I know she don't have that long but she can talk to me a bit. 

Hm. So apart from doing practical jobs you'd like someone to talk to.

Oh yeah. You can make me feel at home as though I make her feel at home when she came in.

What would you like to chat about? Or talk about?

Not myself but, you know, whatever comes along. 

Yeah. And what, what other ways could someone in your situation be helped more? By the services, like health, social services, 

Somebody to come and say "Would you like to go out? Would you like to go out?"

What, for a ride in the car or...

A ride, you know, or something. Take you out of the house for half an hour.

She is a Christian and looks forward to life after death.

You said earlier that your faith has helped you.

Yes.

Its helped you in how you live and it's helped you at the thoughts of the end of living might come.

Yes, I'm not afraid. Yes.

Can you explain a bit more about that?

Well, we came into this earth... I think that you're not wood or stone, you are going to die. Just some of us just go quick, and some have a longer suffering. I don't know why. But I think when you believe in God and believe that he loves you and he sent his only son Jesus Christ to die for you and there is a place that when you leave this earth you going to go there and live, and be happy, and no more pain, no more sorrow. I think you look forward to that and I'm not saying I'm not afraid of death, because I don't know what its like, but whatever it is when it come I just have to face it. 

Because if there is a God, then as he said 'there is no pain for a dead child of God'. There is life, you just go through another door. Just slip away. And I believe it. I believe that. If it not so, well bad luck to me! 

But you believe that we're going to be going on to another life?

I think so, I think so. There is life.
 

Her social worker helped her to fill in the forms to obtain Disability Living Allowance.

And what about... Thinking now about finances and money and benefits. Have you got enough information?

I've got... because the hospice has got a social worker and she helps you with that very much. She's very good so they don't keep you short of money. 

What kind of benefits do people need in your circumstances if you've got to advise someone?

What do you call it there? I don't know these benefits...

Disabled Living Allowance?

That's right. That's a good one because once they give it to you they don't come every month nagging you, you know. They gave me a supplementary what's it called, this one?

Is it the supplementary benefit to the disabled living allowance?

No. I don't have... my pension doesn't pay me enough so they make it up. I forget what that one called...

Is that called income support?

That's right. And every year they come and they nag you like 'you not working', you know? They just nag you and you have to be searching for forms and papers and once I put down anything I just forget where I put it. 

Says that acceptance is a great thing because it heals the mind.

Have you got any particular advice for people where they've been told their illness means they may not have many years to live?

Everybody is so different. Some people can shout, some people can scream, some people are quiet, it's very different, difficult. But acceptance is a great thing. It heals the mind. You know, you didn't bring it on yourself. You didn't make yourself sick. It comes on. You don't know why. So, that's all I can say because that's all I can get from it. I accept it.