June 19, 2011

UK: Living with death

LONDON, England / The Guardian / Health & Wellbeing / June 19, 2011

What's it like to know that you are dying?  Share experiences of living with a terminal illness of a biker who's angry as hell

By Shahesta Shaitly
 
“I’ve lived enough for two lives, but I’d like a third”: Victor Fournere, 65, who was diagnosed with prostate cancer in 2006, on the beloved motorbike he built himself. Photograph: Andy Hall for the Observer
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Victor Fournere, 65, has prostate cancer and was told in 2006 that he had five years to live. He lives in Essex 
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I thought I had cystitis so I went to the doctor and asked for antibiotics. It went away for three weeks and then came back, so the doctor decided to do a blood test. That afternoon there was a knock at my door. It was my doctor telling me I had prostate cancer and that I needed to go to the hospital.

I wanted to hit someone when I was first diagnosed. I was really, really angry. That hasn't gone away – I just know how to control it now. The slightest twinge and I wonder if that's it, if I'm dying right there and then. The doctors said I have a really aggressive type of cancer. They've said, "It'll kill you. You're going to die from it." I was given a maximum of five years – and I'm now in my fifth year.

Telling my friends was straightforward. I'm not ashamed of it because it's not my fault. I've got no family, so my friends are the only people I have had to tell. If I'm having a good day I'll go to the bike club to see them. I've been a biker since my late teens – bike rallies, camping weekends. It's a big part of my life. My friends try to keep it light and breezy. They say things like: "Don't die yet, we're coming over for a coffee."

The second I found out I had cancer I gave up drinking. I don't think I have any quality of life any more – well, it's not the type of life I want to lead. My life was extraordinary before; it was very different to the norm. Now it's all about "being careful". I take six tablets every morning. They make me feel sick and they've bloated me out. I only had a short burst of chemo. It's unpleasant – your mouth and tongue split, your taste buds go – I couldn't taste the difference between a jam sandwich and a pork pie. The doctors told me that it wasn't working so there was no point in having any more – there was "nothing more they could do for me". That sentence still goes round and round in my head.

Mick, my brother-in-law, is the only family I have. He was married to my foster sister. He's my carer and a real support. Once a week I visit the Fair Havens Hospice in Essex. It's where I can release the pressure valve – talk to nurses and discuss any problems. It's lovely to know that there is somewhere I can go when it all gets too much.

The worst is at night when I am in bed. Lying there on my own I start thinking about funerals and I get the horrors. I'll be sitting watching telly and suddenly remember that I'm dying. There are moments where my brain swirls and I think of things I've done and people I've hurt in the past. It's a suffocating feeling, all jumbled thoughts – it's 60 years of memories at once. I've found a cure though: I just get in the bath. That's the only thing that relaxes me now.

I worked all my life and retired at 60, then I get told at 61 that I have a few years left and that I'm going to die. I'm pissed off. I wouldn't want anybody to upset me,, five years of hate would all go into that one person – that's part of the reason I don't drink. Losing my independence really gets to me. I worked in demolition all my life and all of a sudden I can't even paint a wall.

I want to die at home. I have signed a contract saying that no one can take me out of my house and that Mick has the final decision to bring me to the hospice to die if it all gets too much. My funeral is sorted. Margaret, the vicar at the hospice, will be conducting it. She knows me and it feels right. She's not just going to be saying what someone else has told her to say. In a funny way, I've always believed in God. I don't go to church or anything, but my mum taught me that God is everywhere – he's even in my house.

I've put together a CD of the music I'd like played. It starts with the Biker's Prayer, followed by "I'm Not Alone" by Boney M and then I'd like to go out to "YMCA" by the Village People – that's an in-joke between me and my mates. It'll be the biggest biker funeral in a long time – I'm friends with loads of other clubs. I imagine there will be one hearse for me and the rest will be bikes. I'd like them to remember me and celebrate my life, too.

If I had one wish it'd be to see next Christmas. It would be nice to have more time. I don't feel ready to go. I've been in bands and on the telly. I've built my bikes. It's not fair that I have to go so soon. I value life too much. I've lived enough for two lives, but I'd like a third.

Read of experiences of three others also living with death.

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