11 August 2010

A good end

Every year, hundreds of thousands of South Africans grapple with a terminal illness, yet talking about death and dying is not something that comes naturally to most of us.


Every year, hundreds of thousands of South Africans grapple with a terminal illness, yet talking about death and dying is not something that comes naturally to most of us. Facing up to death is difficult, but for the individual who knows his or her life is drawing to a close, being able to communicate openly and honestly with family and friends is often of immeasurable comfort.
By HELEN SIGNY, additional reporting by GLYNIS HORNING for Reader's Digest magazine

“Talking about death to many South Africans is still taboo,” says Dr Michelle Meiring of the Hospice Palliative Care Association of South Africa (HPCA). “Many South Africans are still unaware of their right to receive palliative care,” she says. “And many don’t really know what palliative care is all about. Some only receive it near the end of life, when in fact palliative care services could have been involved a lot earlier to assist patients living with life-threatening illnesses.”

It’s this lack of awareness about how to live until you die – and how to die well when death is inevitable – that needs to be addressed. “We need to open up the discussion around death and dying so that it is no longer a taboo subject in whatever culture,” says Meiring.

Here, four people facing death talk about their experiences:

Catherine Treister, aged 62

My GP was the one who gave me the death sentence: pancreatic cancer. At first I just went into shock. I had watched my father die a horrible death of the same thing at 69, and I’d seen friends go through chemotherapy. I remember saying to my doctor that I didn’t want any treatment. She replied, “There isn’t any.”

The first round of calls was from people who said they had cures. I had a lot to think about without worrying about looking for alternative medicine or anything like that. I have a few friends who will not discuss death, which I find inhibiting. Others say, “Are you feeling positive today?” Of course I’m not feeling bloody positive.

I have always been a very materialistic person. I regret now that I concentrated so much on material things, as they really don’t give you that much joy. The most joy I get isfrom people I love and care about.

I was single until the age of 52, when I met Ted. We had never known what love was all about until we met. So I’ve had my share of miracles. My life was so hard at the beginning and now at the end it’s good. I’m just sad it can’t carry on. Sometimes I feel I’m going to go out on a bad note, as I feel like I’m getting so cross with Ted. He says I’m not, but I know I’m very hard on him and he’s very distressed.

Having been through what Ted is going through, I have an understanding of his dilemma. His situation is harder than mine and I’m hopeless to help him. I don’t know what to say or do. We’re now spending our days lying here together in bed, listening to music, snoozing a lot. I just want to be with people I really like. I like being in bed and half-asleep with a crowd here. They can talk to each other and I can just listen to it and drift in and out.

Sometimes I sit bolt upright and voice my opinion and give them a shock. I have no fear of death. As a child living in the country, I grew up seeing animals being born and dying. From a young age I found divinity lessons more interesting than schooling, and I particularly liked the Old Testament stories. In my early teens my family began to unravel and I made a conscious decision that religion hadn’t helped me and bugger it. On an intellectual level, of course, I don’t believe in an afterlife. I think death will be just the end, that the brain just shuts down. But I had so much religion as a child it’s got into me.

However, Ted is a Catholic and our local priest has been an inspiration to me. He works in the community and feeds the homeless. He’s an example of a working Christian and has converted me by example. He married us last year, and a few times he’s administered the last rites.

I’m taking very strong painkillers. When I’m sick or in pain I feel death would be a relief. But when I’m feeling well, like I am at the moment, another couple of months would be good. I want to write my own eulogy and make it a good one. My business affairs are in order and I’m trying to get the house in order. I do things slowly so I’m very busy, and I like that part.

I have had time to tell all my friends that I love them and I have even fixed a few relationships. I do regret I couldn’t have helped the people I loved more or couldn’t have loved them better. But I certainly have had time to reflect on all the good things that have happened in life. We have had a beautiful relationship and I’m very grateful for that. I would like to die at home, in my very comfortable bed, with Ted.

At the time of going to press, Catherine was facing her last days in hospital, comfortable, pain-free and with her sense of humour intact.

Julian (Lee) Duclos, age 74

When you’re about to die, it’s time to get your act together, to think about what life really means and concentrate on the things that matter. That’s what I’m doing to my utmost, trying to enjoy every day I’ve got left. I plan to go out with a laugh rather than a whimper.

Pulmonary fibrosis came upon me five years ago. I couldn’t get rid of a cough and a specialist diagnosed me with this condition, which is untreatable other than with cortisone. Most people have a five-year life expectancy after diagnosis. I’m right at the end of that period.

The initial diagnosis came as a shock, but I have never felt lachrymose or morose or depressed. I’m sad I didn’t have another ten years because my wife and I had planned to do a lot of travel.

If I stand up to do almost anything, to walk five paces with my walking machine, I’m extremely breathless at the end. It’s a feeling akin to drowning. My palliative care team have found a way of alleviating the time that’s required to catch my breath. They’ve been fiddling around with the medication and have given me a special chair that moves into all sorts of positions and makes resting and sleeping bearably comfortable. They have been a fantastic support to me, and especially to [my wife] Sheila – she can call them any time of the day or night if she’s worried.

An undertaker, a good friend, has been round to have a chat, so we understand those aspects. I would much sooner die at home surrounded by my things, as long as that was compatible with what was good for my kids and my wife. We have covered as many of the bases as we can, legal and financial. It’s all set up so that when I drop off, everything will just flow on exactly as normal for Sheila.

I was brought up in the Anglican tradition, but I’ve been an atheist since my late teens. Whatever happens to me at the end will be secular. We’ll probably have a wake at my golf club, a celebration of my life and times.

We have a holiday place on the sea, opposite a cemetery, and we decided we would buy a plot there. When our grandchildren wander down to the high street for a coffee, they can go past our grave and say hello. The only things in the world that matter to me are my family and friends, and the only thing left of me in the hereafter will be any values, morality and philosophy that I might have passed on to my kids and my grandchildren.

My family is handling it all very well, on the face of it. At one stage one of my daughters wouldn’t even talk about the fact I was going to die, but now they’re all showing a level of strength that pleases and surprises me. I’ve even had a message from my oldest grandchild in London telling me not to die before she gets over here or she’ll kill me!

We are a very close family and I treasure them more than anything. We talk a lot. I have written two letters to my wife and entrusted them to our middle daughter. I think I have expressed in those letters and our conversations almost everything I can. I just want to tell them thank you.

I have been an inordinately lucky man to marry a wonderful woman who has been my soul mate for 50 years, and to have had fabulous kids – there isn’t a whole lot that I would take back. I’m not frightened of death. I would rather it didn’t happen, but I’m comfortable with the fact it’s imminent. I have had a bloody good run.

Julian died on November 20 last year. More than 500 people turned up at his golf club to celebrate his life.

Kerrie Freeman, aged 28

Every time I go to the doctor and he says, “What can I do for you today?” I say, “Don’t tell me when I’m going to die.” Besides the fact I don’t think they can tell me, a lot has to do with my mind. I don’t want to be an emotional wreck for the rest of my life. I’m not living each day as if it’s my last – I live each day as if I have a future.

I was first diagnosed with liposarcoma just before my 21st birthday. So far they’ve found over ten malignant fatty tumours, always in my trunk. Each time you think you’re going to be prepared, but emotionally and physically it gets harder.

I believe I was put on this earth to be a mother. The best I have ever felt was when I was pregnant with Ella, who is now four. I fell pregnant while I was on the pill. Then, four days before Matt and I got married, I had a 20-week scan and they found another two tumours. They suggested termination because they were worried I wouldn’t survive the pregnancy, but that just wasn’t an option for us. We went between surgeons, obstetricians and oncologists, and we got to 31 weeks before I had a caesarean. They took out the tumour at the same time.

Ella understands that Mummy’s sick. Every day, either in the bath or shower, she asks me about my scars. “Was this where I was in your belly?”; “Was this from a tumour?”

I think about [dying] every second. I say to Matt I would love to wake up and it not be the first thing I think about. Normality would be fantastic. I go to a support group for people with life-threatening illnesses. Before I went, no-one was allowed to say the D-word in my house. Now, I can talk about it a little. I don’t know what will happen to me after I die. I don’t really know what my beliefs are. I think that’s what scares me.

I’m used to pain. But I fear not being here for Matt and Ella, not here to protect them. I like to be in control. I used to not be able to go to bed unless the house was tidy and the washing and ironing was done. Now, there are more important things to worry about.

That’s the whole thing with dying – you are no longer in control. I don’t want Matt to be lonely for the rest of his life. He was only 18 when we met, and I feel I’ve robbed him of being normal and young.

I have a phobia of not waking up from surgery, so every time I go in for more treatment I have a big talk with my family. I tell them that if I do die I want them to support Matt with whoever he chooses to be with. I want it to be somebody who loves them both as much as I do. Somebody who is not sick. Somebody normal.

A lot of my friends disappeared when I had my last surgery. I guess they don’t know what to say. Obviously it really hurts. They have been fantastic friends for years. They should know me well enough to say, “Hey, I don’t know what to say, but I’m here.” You don’t have to phone and talk about cancer. Just ring and talk about the weather.

At my funeral I want people to drink shots and have fun. I want them to play a certain track by country singer Troy Cassar-Daley. It’s about somebody who has passed away, and Cassar-Daley is saying that even though the person is far away, there are good, fun memories. The person was known for their humour and wit. Ideally, that’s how I would like to be remembered.

Kerrie’s tumour has now spread and takes up the entire left side of her trunk. She is facing major surgery to remove as much of it as possible and is then likely to take part in a new chemotheraphy trial.

Dr Eng Miklos Somogyi, aged 73

It happened many years ago, but the picture of my father as a 30-40kg skin and-bone mass still haunts me. He had lung cancer, went through a major operation, and gradually got worse and worse. He suffered for months and died a horrible death.

Now I am diagnosed with inoperable cancer of the spine, a secondary [cancer] of prostate cancer. I have been told it responds well to palliative care. Medication has taken away the pain in exchange for chronic tiredness. That’s all right – I’m happy, but I have a good idea about what’s in store for me.

Last year I had surgery to remove the cancer and some nuts and bolts put in to strengthen the spine. When I woke up after the nine-hour operation, I was told that it had achieved its stated aim – the badly needed strengthening of the spine – but I’d lost the use of my right leg, except the toes. It took a few days for the facts to sink in.

Voluntary euthanasia was high on my mind. My whole life changed forever. I am in a wheelchair now, and need help to go to the toilet or shower.

A constant stream of injections, a back brace, a hoisting machine to go to the toilet: what kind of life is that? For what? For a few months of life outside the hospital? Cancer works in the background, so soon I’ll be back in hospital to be prodded and to suffer a lot, for nothing. The only thing that keeps me sane is my wife of more than 20 years, Erika, whose radiating love gives me reason to live.

Now I’m living at home. I have some disabilities, but I can still do some useful living and I’m not in too much pain. However, this may change very soon, very dramatically. Two weeks ago I was in hospital for the fourth time and doctors told me I was facing total paralysis. Radiation may delay the onset by a year or so, but there’s a 50:50 chance it may hasten the inevitable.

If I had full paralysis it would mean a nursing home, not being able to do what I want to do, and suffering daily indignities. Waiting for death to come along in such circumstances is not my cup of tea. Then I would like to be able to decide when enough is enough.

I want a no-frills funeral with a little good-natured gathering at home. I’ve provided music on a CD that starts with Wagner’s “Siegfried’s Funeral March”. Then I want people to listen to something more applicable: Dean Martin’s “Little Ole Wine Drinker Me”.

I don’t fear death, as it’s natural in our kingdom. Pain-suffering aimlessness- vegetation indignities are what I fear.

As with the Frank Sinatra lyrics, “regrets, I have a few”. Has facing death changed my perspective on my life? Perhaps I value my current time more than before. While it lasts.

Miklos was recently totally paralysed and is unlikely to leave hospital. He is in touch with an euthanasia group.

Read more:

Dealing with death

(This is an edited version of an article that originally appears in the July 2010 edition of Reader's Digest magazine. The current edition is on sale now.)


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