We all have to one day wrestle with the reaper, how we manage to do that is unique with everyone. Have you thought about it? Read about four lives that are living with death today.
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This article titled “Living with death” was written by Shahesta Shaitly, for The Observer on Saturday 18th June 2011 23.05 UTC
Victor Fournere, 65, has prostate cancer and was told in 2006 that he had five years to live. He lives in Essex
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.
Holly Webber, 25, has cancer and lives with her boyfriend and family. She hopes to live for another 20 months
I was 19 and at Brighton University when it started. I had a lot of stomach pain and was constantly bloated and constipated. I had symptoms for four years and saw six different GPs while I was at uni – all of them said I had irritable bowel syndrome. By the time I graduated in 2009, the pain was worse. I remember saying to my dad one morning that something wasn’t right – I’d been up all night passing blood. He said that he’d do whatever I wanted to get somebody to take it seriously. I re-registered with our family GP who referred me to a private specialist in order to speed things up. He sent me for a colonoscopy. I’d never been in hospital before and didn’t know what to expect but I was relieved afterwards because it felt like things were finally happening.
The specialist asked me to come back the next day. I spent that evening panicking, but it never crossed my mind it would be cancer. He said he’d found a large growth in my bowel, which had formed from a “polyp”. There was never a mention of me having the C-word then, but to ensure that the growth and polyps in my bowel didn’t become cancerous in the future (which I was told was likely), my specialist suggested surgery to remove my entire colon.
It took me a week to stop crying because I was so scared. The specialist suggested a CT scan to make sure everything was in order for surgery and this scan revealed growths on my liver. I was referred to a liver specialist who carried out an MRI scan and said: “I think we need to try some chemotherapy,” which was enough for me to understand what was happening to me. It was cancer and it had spread from bowel to liver.
In the first week of July 2010, I had another CT scan which showed all the lesions on the liver and bowel had shrunk considerably. I was so relieved. Everything had been worth it. I’d had 25 growths on my liver in all. Following the success of chemo, the surgeons performed a liver resection and removed 70% of my liver. Three months later I had my entire colon removed. The care I received during these difficult months was incredible.
But I was told at the beginning of this year that the cancer had returned to my liver and spread to both my lungs. Statistically, I should have another 16-20 months if I have more chemo, which I’ll start soon. This next round will make me lose my hair, so it just feels like another huge mountain to climb and something else in my physical appearance that’s going to get knocked. I have scarring all over my body and an ileostomy bag attached to my stomach that I change every day – that in itself takes a lot of mental strength. I spend so long carefully choosing clothes to cover things up.
I have a lot of support – an amazing family, loads of friends and my boyfriend, who lives with me and my family. My local hospice, the Phyllis Tuckwell Hospice, has been great. One of my best friends, who is based in Taiwan, quit her job to come and live with us for a couple of months to support me. I’ve gained a perspective on life that is a gift in all its rawness. I’m really quite grateful for that even though the circumstances are awful.
I’ve tried to launch myself into helping others. If I can make people see things about life in a different light, then that’s really quite special. In the past, I never had faith, but this illness has made me more spiritual. I feel much more connected. Everything is just more beautiful to me now, it’s much more valuable. I’ve always been passionate about the environment and nature; now I feel that more than ever.
What’s cruel about this illness is that I’ve been given a time limit. Life is so precious and we all believe we’re invincible, but I know what’s happening to my body. Somebody asked me recently how I cope with despair, and the only answer that I could come up with is that what keeps me going is the hope that everything will somehow be OK. I’ve been told I have a terminal illness, and I get that, but if I didn’t wake up every morning hopeful, then I wouldn’t get out of bed, get dressed, eat or breathe. What’s anyone without hope?
Sometimes I feel like I’m on another planet looking in on this one. I can’t relate to people stressing about work or getting the Tube. People are so wound up, but it’s such a waste of time and energy. Chill out! I hope that by reading this, someone out there will take a second to think, “I’m glad that’s not me. Maybe I should worry less about the things that don’t really matter.”
Help the Hospices is the charity for hospice care, representing and supporting local hospices. For more information, go to helpthehospices.org.uk
Peter White, 57, has Multiple System Atrophy, a neurological disorder. He lives in Sheffield with his wife Josie
I was an electrician and hardly missed a day of work in 40 years. Then, in 2005, I started losing my balance so Josie, my wife, suggested I see a doctor. It took about a year to get diagnosed with Multiple System Atrophy (MSA). I never felt sorry for myself: if the numbers of people getting ill need to be kept up, then I would rather it was me than any of my family.
As a result of the MSA I’ve developed another condition called cataplexy, which is triggered by strong emotions – laughter in my case. Once I start laughing I can’t stop, and that triggers a seizure. It’s very difficult to keep my emotions on an even keel. Josie says I’ve turned into a miserable sod.
There are things that bother me about having this disease – the fact that there’s no cure being one. The idea of losing the ability to speak is hard. Josie and I are writing cards out so I can hold them up to communicate when the time comes. I’ve been in a wheelchair for about a year now. I can walk with a frame, but it’s getting harder.
I have never believed in an afterlife, but Josie and my youngest daughter are both practising Christians and I’ve been tilting towards their side of things recently. I’m also finding peace in art. I spend most of my time at the hospice painting ties and scarves. I paint a lot of catfish because fishing is something I enjoy and can’t do any more. If I could do one more thing in life, I’d love to catch a really big catfish with my grandson.
I feel lucky in that I’ve had time to prepare. The reality is, we’re all going to die – it’s just I know of what and that my time is sooner rather than later. There won’t be any hymns at my funeral. Hopefully, mine will be the last one of the day and I’ll go out to Eric Clapton’s “Layla” – turned up really, really loud.
Diagnosed with Motor Neurone Disease in 2000, Sarah Ezekiel, 42, was told she had three to five years to live
When I was pregnant with my son, I noticed that the index finger on my left hand was slightly bent and my speech was slower, especially at night. I thought I’d had a mild stroke or that my baby was lying on a nerve. My doctor referred me to a neurologist, who I think knew immediately that I had Motor Neurone Disease (MND).
I’ll never forget the day I was diagnosed. I went to the doctor’s with my husband, but he got fed up waiting so left me to receive my diagnosis alone. My neurologist didn’t present MND in a negative way or give me a prognosis (it’s three to five years), so I didn’t understand the enormity of it. But the disease progressed rapidly once my son Eric (pictured below) was born. Within one year I was unable to use my hands. It was heartbreaking for me to watch carers do everything for my daughter and son. I want to hug and kiss them, but I can’t. The worst physical aspect was the loss of speech. I can communicate using computers, but I can’t make phone calls or join group conversations. I miss that so much. I divorced my husband in 2004. He’d become abusive – I suppose because he was angry. We didn’t talk for years, but we get on OK now. I miss being married, too.
I thought about committing suicide early on, but I’m pleased I didn’t as I’d have missed some wonderful experiences. Seeing my children grow up is by far the most rewarding reason for living. I believe I’ve achieved more during my time with MND than when I was well. I was in a bad place for the first few years, but in 2005 I got a laptop which I could operate with my chin. That changed everything and I started writing about my experiences. I only read negative stories about MND after I was diagnosed, so I hope I have helped other sufferers.
I thought about death all the time initially, but I rarely do now. I’m too busy getting on with life. I felt hopeless after my diagnosis, but managed to overcome that with support. I’ve attended my local hospice since 2001 and the staff help me with emotional and medical problems. I believe all difficulties can be solved with the right resources – I’ve been fortunate to find them. I suppose that I’m trying to say that however bad life appears to be, there is always hope. I feel as if I’ve been given a window of opportunity, not a death sentence. I’m going to make the most of it.
For information on the Motor Neurone Association, go to mndassociation.org. Their helpline, MND Connect, is on 08457 626 262
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