Why I was devastated when the doctor told me I DIDN’T have cancer: Author Wendy Mitchell, 68, describes how she longed for any escape from the grip of dementia

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A couple of years ago I started losing weight very rapidly, for no apparent reason. The pounds were falling off me, even as I waited for an appointment to see my GP.

My clothes no longer fitted: the waist of my trousers suddenly sat on my hips. I thought, ‘This is it, not only has some disease invaded my brain, but now my body, too.’

I was convinced I had cancer. ‘You know I don’t want treatment?’ I told my GP.

‘Yes,’ she said, ‘but let’s cross that bridge if we come to it’.

I pictured having to break the news to my two daughters and talking through my options for palliative care.

The GP sent me for tests and when they all came back clear she was delighted. How did I feel? Disappointed. Deflated.

I know most people find a cancer scare terrifying, but for that brief, blissful time between test and result I had imagined myself making choices about my future. I would become the lady with cancer. I would no longer be the lady with dementia.

In the ten years since I was diagnosed, aged 58, with young-onset vascular dementia and Alzheimer’s, I have done everything I can to stay positive and demonstrate that there is life — a good life — to be had while living with this progressive disease, Wendy Mitchell writes

It might sound hard to hear that, but it is true. In the ten years since I was diagnosed, aged 58, with young-onset vascular dementia and Alzheimer’s, I have done everything I can to stay positive and demonstrate that there is life — a good life — to be had while living with this progressive disease.

I am a glass half-full person. I have given practical advice to tens of thousands (possibly hundreds of thousands) of people all over the world, wherever my books are sold, and campaigned to increase awareness of the disease.

I have shared my tips for how to live with dementia as a companion — albeit an unwelcome one — not an enemy.

I could even go so far as to say I have enjoyed finding solutions to some of the challenges dementia has presented me — for instance, the bright red notebook I was carrying in my pocket on that first doctor’s visit, in which I had written ‘weight loss’ to remind myself why I was there.

I have often felt a sense of achievement in managing to outwit this opponent inside my brain. I have given people hope, yet I do not have a magic wand.

Dementia is a progressive illness; there will come a time when its moves on the chessboard of life outmanoeuvre mine. If I’m honest, I can feel it happening now.

I saw cancer as my way out, my escape from dementia. I felt guilty for feeling that, but it’s true. I understand how much some people long to receive the all-clear like I did, and I tried to arrange my face into something that resembled relief in front of the GP, but I didn’t feel relief, I felt sadness. Sadness that I had to continue living — or perhaps, rather, dying — with dementia without a way out.

So, I have to begin thinking about the end — and thinking about assisted dying.

This is controversial, I know, but it is a debate that has been drawing in some well-known voices. Actress Diana Rigg’s daughter, Rachael Stirling, wrote recently, very movingly, of recordings made by her 82-year-old mother as she lay dying, painfully, in the last stages of cancer.

Rigg was made furious by her feeling of impotence as she struggled toward the end (‘It’s gone on too long. Push me over the edge,’ she said at one point) and insisted on voicing her support for assisted dying.

Broadcaster Dame Esther Rantzen, who has lung cancer and is nearing the end of life’s journey, said recently that she had joined Dignitas and had considered travelling to its clinic in Switzerland to end her life. She has since started a petition for a parliamentary vote, which now has more than 120,000 signatures.

As things stand, even if the law were to change in the near future, it would not include people like me. Those who are lobbying for assisted dying to be legalised in Britain are asking only that those with terminal illnesses — and with less than six months to live — be able to end their lives with dignity.

That could never apply to me because the time it will take me to die with dementia is unknowable — it could take years. So I write this with no hope of personal gain, but with a desire to make people understand that this debate means much to people in many different situations.

Last autumn, I appeared at the Cheltenham Literature Festival alongside Henry Marsh, retired neurosurgeon and acclaimed author of Do No Harm, who’d been diagnosed with, and treated for, advanced prostate cancer. We were there to discuss our books and, particularly, end of life and assisted dying.

On stage, in front of hundreds of people, Henry described how he thought of his cancer as a vaccination against dementia — implying that one of the advantages of his situation was that the cancer would kill him before he might be diagnosed with dementia.

I understood what he was trying to say — and his dread of losing his faculties. If assisted dying were legal in this country, I would choose it in a heartbeat. At the moment, I retain my independence, but my partner-in-writing, Anna Wharton (who has co-authored all three of my books), once described me as a swan gliding on the top of the water, or appearing so to other people.

She could see my legs frantically pedalling under the water and saw just what that took out of me.

Broadcaster Dame Esther Rantzen, who has lung cancer and is nearing the end of life's journey, said recently that she had joined Dignitas and had considered travelling to its clinic in Switzerland to end her life .

Broadcaster Dame Esther Rantzen, who has lung cancer and is nearing the end of life’s journey, said recently that she had joined Dignitas and had considered travelling to its clinic in Switzerland to end her life .

Those who know me well, like my wonderful daughters, now in their 40s, understand that’s how it works and they also know how exhausting it is becoming. These legs are peddling more frantically now, and more and more often I am unable to give that impression of a swan gliding on the water’s surface. Dementia is winning.

That is why I would take the option of ending my life if I could, while I still have some dignity, while I can still make that decision for myself, before I go over the edge and into the fog of the disease altogether. Because once I have entered that fog for good, I will no longer be the Wendy you, or even I, know.

I don’t want dementia to take me to the point where I’m reliant on others for my daily needs, where others will decide for me when I shower or may insist that I have a bath — which I hate.

I don’t want someone else to tell me when I eat, or what I eat, or decide by the look on my face whether I am happy or sad. That is no life for me. That is no Wendy for me. And I don’t want my daughters to see the husk of a person I will inevitably become.

But, sadly, assisted dying is not an option in Britain, so I have to face the fact that this course for me, unless another intervention is made — by nature or my own decision-making — is inevitable.

As my latest book, One Last Thing: How To Live With The End In Mind, is about to be published in paperback, I will be writing to a number of leading lights in the assisted dying debate, hoping they will see that any change in the law needs to extend beyond the terminally ill with less than six months to live.

It seems incredible to me that we pay so little attention to death when it is something that affects 100 per cent of the population, regardless of wealth, intelligence, ethnicity or religion.

It is something I thought long and hard about as I researched One Last Thing. The book contains much about planning for the end, but I have also used it as an opportunity to explore my belief that people should be allowed to die with dignity, free of pain.

The only legal choice we don’t have in life is when we’re born. For everything else, we, as humans, should have a choice — a choice of how we live and a choice of how we die.

The daughter of actress Diana Rigg (pictured), Rachael Stirling, wrote recently of recordings made by her 82-year-old mother as she lay dying , painfully, in the last stages of cancer

The daughter of actress Diana Rigg (pictured), Rachael Stirling, wrote recently of recordings made by her 82-year-old mother as she lay dying , painfully, in the last stages of cancer

Facts, figures and experience show that, in those countries where assisted dying is legal, many people actually choose to go on living. Having that ‘magic potion’ or ‘poison’ (however you want to look at it) within reach enables them to choose life for much longer.

Refusing to legalise assisted dying does not prolong life, as people like to think. It prolongs death, and often pain. Why would anyone choose that option for themselves or for someone they love?

I believe that having a choice within your grasp enables you to stop worrying and live life.

If it were available to me I could relax, knowing I would not have to suffer.

As I was writing One Last Thing, I spoke to many amazing people, both in favour of assisted dying and against.

I was particularly interested to meet Jane, who happens to be Anna’s best friend. Jane, 50, has secondary progressive multiple sclerosis which has left her paraplegic and using a wheelchair. She suffers from double incontinence, pain and total exhaustion. We made quite a pair, she with her body letting her down but her brain as sharp as ever, me with my brain failing but my body intact.

We had such an open and positive conversation about the end of life — something that many of us find hard to discuss with loved ones or our children.

Jane and I had both got to the point where we found adapting to our two very different diseases exhausting, however positively we have accepted the challenge. ‘I would like to get to a point when it’s OK for me to sit down with the people I love and say: ‘OK, guys, I’m done adapting. Like, I know I could keep adapting, but I don’t want to adapt any more, so can you give me your blessing and can we all just be OK with the fact that my level of adaption stops here?’ ‘ she told me.

I couldn’t agree more. We should be the ones who are able to decide when we’ve done enough adapting to accommodate these burdens we have to live with.

Why do others get to decide for us by blocking assisted dying and insisting we must just keep on going when we find it so tiring?

By being able to choose not to, I would not be waving the white flag at dementia. Instead I’d be saying: ‘I’m done with you and your games; no longer am I going to risk the chance of you winning.’

I have also met people who had to watch their loved ones die slowly and painfully and wished they had been able to help them. I had a conversation with MP Paul Blomfield, whose father sadly took his own life — alone, without being able to say goodbye — because he didn’t want to go through the end stages of his own cancer diagnosis.

Losing his father cemented Paul’s belief that there must be a better way. ‘It’s about people choosing the quality of their life and choosing the right moment when they feel there is insufficient quality in their life,’ he said.

Of course, I absolutely appreciate the other side of the argument and have had long discussions with those championing palliative care. Many specialists believe we should concentrate on providing gold standard end-of-life care but, to me, it shouldn’t be a case of one or the other.

Yes, of course great palliative care should exist for all, but so should the choice to die with dignity. The most wonderful palliative care imaginable could not stem the incoming tide of my dementia. I’m afraid palliative care doctors don’t have magic wands either.

When I talked to Catherine Forest, a doctor in California who administers ‘medical aid in dying’, she told me she felt she was fulfilling her medical promise to her patients, which is to end suffering — as they define it for themselves.

Shouldn’t all of us with terminal or progressive illnesses be able to define what suffering means to us individually?

It has always been my aim to bring hope to those living with or caring for people with dementia. I don’t think that’s at odds with talking of assisted dying. Hope is having choice.

Anyone who disagrees with me is free to do so but, please, don’t deny it as an option to the rest of us.

I ask you, whatever your beliefs, to consider what I have to say with an open mind. None of us knows what life has in store for us. Public opinion has already shifted in favour of assisted dying.

Should the law do the same — and also make provision for those of us with dementia — it might just be something for which you, or someone in your family, will eventually be grateful.

  •  One Last Thing — How To Live With The End In Mind by Wendy Mitchell (Bloomsbury) will be published in paperback on February 29.

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