Advertisement

My name is Helen and I am dying. Of cancer and of cold

Helen van Bueren
‘I’m in a constant state of exhaustion and in pain 24/7 despite the morphine. It’s hard to keep going.’ - Lorne Campbell / Guzelian

My name is Helen and I am dying. Of cancer and of cold. I honestly don’t know which will get me first. I’m 76, and I live alone in a house so icy I feel myself fading away with every week that passes.

I’ve switched off my boiler because I can’t afford to pay for heating. I will switch it on in February because that’s when it’s really bitter.

Sometimes I wonder how I came to be here, struggling through; in my previous life things were so different. But terminal cancer changes everything.

Nine years ago I was diagnosed with multiple myeloma, a type of bone marrow cancer, which has since progressed to my actual bones. I was then diagnosed with lupus when the immune system, which normally helps protect the body from infection and disease, attacks its own tissues.

Myeloma affects the circulation in my hands and feet. When the cold starts to creep in, they turn white, go numb and stop working completely. I can’t feel anything. I fumble, I drop things and there are walking sticks scattered all over the house in case I fall.

When I wake, I put on fingerless gloves and sheepskin boots, trying to stimulate the circulation. As it eventually starts coming back, it’s accompanied by a searing pain as my extremities go from white to purple to cherry red.

Now that the myeloma has reached my bones, I’m in a constant state of exhaustion and in pain 24/7 despite the morphine. It’s hard to keep going.

Helen van Bueren
‘My elderly dog, My Boy, also has cancer’ - Lorne Campbell / Guzelian

At one low point, I rang the Samaritans wanting to end my life because I was so distraught. A lovely man on the phone talked me down but that’s how bad and how hopeless I feel.

I had envisaged spending my retirement travelling; it’s always been an ambition to visit the Scottish islands. Having had a career in corporate accountancy that took me to the US for a few years as well as a rewarding sideline teaching tai chi, I had plans.

But having already been widowed once, when my second husband died of a heart attack 10 years ago it was utterly devastating. Then came cancer.

I have two adult children; one lives in South Africa. The other I don’t hear from anymore, so it’s just me with my cat, Billy, and my elderly dog, My Boy, who also has cancer; the rescue charity said we were a perfect match, which we are.

I am sick. I am tired, and the relentless cold saps my spirit as well as robbing my body of energy. Sometimes I can’t even get up. I spend the day in bed, unable to do anything. I can’t lift my head, my arms or my body. I just lie there, chilled and numb to my very core.

It’s terrifying to think that one of these winters I shall die this way; people do. My scenario is common – but in Britain in 2023 it shouldn’t be how things are.

I do get a little help with my winter fuel bills on account of my age but it’s not enough so I have to scrimp and save.

I live in a market town on the outskirts of Nottingham; I love my home and I know I’m lucky to be independent but it’s hard to heat so I carry around a hot water bottle. The very last thing a dying person needs is to be crippled by cold and too scared to switch on the heating.

That’s why I have been working with Marie Curie on their campaign to ensure everyone who receives a terminal diagnosis is granted immediate access to their state pension, as well as targeted help with energy bills; what is known as a “heat prescription”.

The recent trialling of such “heat prescriptions” in certain parts of the country offers a practical and effective solution– particularly when it comes to diagnoses like multiple myeloma or respiratory conditions exacerbated by low temperatures.

For people like me, the cold is a constant enemy. You may die very quickly, say, in a couple of years, but those years could be spent in comfort, living in the present, without the gnawing anxiety about heating bills. If a heat prescription were applied at the point of diagnosis, you would be able to heat your home, sensibly, over the period of time you have left. I can’t stay warm because I haven’t got the money. It’s as simple as that.

Helen van Bueren
‘When I wake, I put on fingerless gloves and sheepskin boots, trying to stimulate the circulation’ - Lorne Campbell / Guzelian

Since I stopped work, my finances have been teetering on a cliff edge. I get my pension, a winter fuel payment and I’ve got a little in the bank for emergencies, but apart from that, I’ve got nothing.

Because I’m at home I’m saving the NHS and the care system money – but I am paying a high personal price. A heat prescription would alleviate a significant amount of the pain in my life and in the lives of others. Physically, it would make me more flexible and able to move more. It would get me out of bed in the mornings and save me from worrying about the nights to come.

When you are in the grip of the sort of pain that I have, you’re automatically tense. Imagine walking into a warm room after being in a very cold place. What do you do? You think, “Oh God, isn’t that lovely?” Your muscles – and your entire being – immediately relax. You don’t clench into a ball trying to tough it out and make it through. It’s no way to live.

For a younger person who’s paid into the system all their working life and with a terminal diagnosis exacerbated by the cold, the importance of help with keeping warm cannot be underestimated.

Marie Curie’s hugely important proposal represents hope for all terminal cancer sufferers. Rather than suddenly finding themselves totally adrift, with no income and dealing with a terminal diagnosis as well as facing huge fuel bills, people would get help with this most basic of human rights. After you’ve paid into the system all your life as a taxpayer, is that really too much to ask?

In my house, the cold is so crippling it seeps into my bones and sits there. It consumes me.

Things would be immeasurably different with a heat prescription. I’d be able to get up in the morning without having to grapple with my frozen limbs. I could go out with the dog – knowing I could then come home to a warm house. It’s what other people take for granted but just the thought brings tears to my eyes.

If you’re terminally ill, struggling to come to terms with the news and with no hope of further treatment, what you want to hear is this: “We’ll make you comfortable so that you can do what you want, what you’re capable of physically, while you’re still alive.”

But being kept in the cold and facing bills you can’t afford to pay, you’re denied that. You have to fight for every penny, for every scrap of warmth; it is demoralising and debilitating. People with a terminal diagnosis deserve better. Marie Curie is battling on our behalf. Please give what you can so we can heat our homes and focus on living not dying. Thank you.

Marie Curie is one of four charities supported by this year’s Telegraph Christmas Charity Appeal. The others are Go Beyond, Race Against Dementia and the RAF Benevolent Fund. To make a donation, please visit telegraph.co.uk/2023appeal or call 0151 284 1927