I want to enjoy my last days – not waste them having chemo: Doctor Kate Granger tells why she's stopped the treatment that could prolong her life
21:33 GMT, 1 October 2012
A year ago, Dr Kate Granger was diagnosed with terminal cancer aged 29.
As she told Good Health, five months of treatment left her so ill she decided to stop.
Here, in an extract from her new book, she explains the devastating impact her decision has had on her husband, Chris Pointon, 35 — and why she still believes she made the right choice…
'Despite Chris supporting my decision, one of the most difficult issues for me is seeing him struggle to come to terms with our situation,' said Dr Kate Granger (pictured with Chris on their wedding day in 2005)
Chris has cried to himself virtually every night since I came home from hospital in January, having decided to stop my treatment.
I try to ignore it and pretend to be asleep when he comes to bed.
He has been brilliantly supportive and completely understands my desire to stop the torture of the treatment.
He was finding it increasingly distressing watching my suffering, which then exacerbated his own feelings of helplessness.
Most people did not really see what we were going through and I was only seen on rare days wearing my brave face when I felt reasonable in between chemotherapy sessions.
But while chemo did shrink my tumours, it made me terribly sick and I had complications such as bone marrow failure, which left me in great pain and put me in hospital with life-threatening infections.
I didn’t know if I could survive any more, mentally or physically.
As a doctor, I am very realistic about what treatments can achieve. I am not hunting for a miracle cure, because I don’t think that will happen for me.
After diagnosis, the average life span of someone with my type of cancer — desmoplastic small round cell tumour — is 14 months, and I have now survived 12 months.
Over the seven years I have worked in medicine, I have witnessed hundreds of deaths, mainly in older patients, but also in younger ones.
I’ve seen a lot of needless suffering, severely ill people flogging their bodies to death with different treatments or more chemo in pursuit of something that is never going to happen — possibly just to please their families.
This has crystallised for me what I want for myself: a dignified and peaceful death.
I hate all the emotive language used around cancer. It’s always a ‘battle’ and sufferers are always ‘brave’ — words for wars.
Society and maybe my profession put pressure on sufferers to try all treatments, to jet all over the world for a miracle cure.
But when people like me decide not to prolong life, does that mean I am not strong or fighting to stay alive
'As a doctor, I am very realistic about what treatments can achieve,' said Kate
I have said I will accept further treatment only if it enhances the quality, not the quantity, of the days I have left.
But I’m choosing to take control of how I live — I just want my old life back, even if it’s for only a couple of months.
We have had a hard time explaining this to everyone, particularly to Chris’s family.
And despite Chris supporting my decision, one of the most difficult issues for me is seeing him struggle to come to terms with our situation.
At home in Wakefield, I normally go to bed an hour before Chris; he tucks me in and gives me a goodnight kiss and then goes back downstairs to spend a good hour weeping to himself.
I don’t know how to help him. The trouble is that while I have completely come to terms with the fact that in a few months I will be dying, Chris can’t accept that the situation is way beyond our control.
He struggles with my matter-of-fact attitude and gets upset at the smallest of comments.
I am perhaps not as sympathetic as I should be, always telling him: ‘Pull yourself together, darling.’
When he is upset he talks about what life will be like without me and how he won’t be able to cope.
This is very difficult to listen to, and is a source of great annoyance for me. I need him to be strong so he can shore me up.
Seeing him struggle emotionally makes it much harder for me to cope with my own feelings and thoughts.
I am the one who is dying and facing potentially a painful, protracted and horrible death, but all he seems to be able to think about is himself.
Perhaps I am the one who is being selfish, or perhaps neither of us is thinking of the other.
Chris also does not share my black humour on the topic of dying. I flippantly make a comment that, being a petrol-head, he can buy a Porsche with my life insurance money.
‘What if I don’t’ he responds.
‘I’ll haunt you!’ I reply. He does not find this amusing.
The doctor in me really wants to sort him out. The wife in me is upset by his distress, and he is my biggest concern at the moment.
I can easily see how he may very well develop a grossly abnormal grief reaction when I do die if we do not attempt to get him to come to terms with everything sooner rather than later.
In order to help him, I arranged a consultation with the palliative care team for both of us.
Although I am abandoning all medical care, I am happy to take anything that will alleviate any distressing symptoms that I have now and at the end.
I am determined not to waste a precious second — perhaps this is contributing to my insomnia
Chris had not accompanied me to an appointment for a long time, but I nagged him to come along to this one.
The session — with the palliative care consultant and one of the Macmillan nurses — felt more like a marriage counselling session.
My eyelashes are growing back, so I deliberately wore mascara because I was determined not to cry.
This kept me focused.
The team work out that one of the reasons Chris is struggling emotionally with this is because he’s so used to planning ahead in his management job for Asda that he cannot get his head around my ‘live-for-the-day’ philosophy.
Slowly, over the coming weeks, Chris manages to accept that we have to live for the day, and it helps as we begin to work through my bucket list.
Getting back to work at Pinderfields Hospital, Wakefield, had been an ambition since I became ill.
In August 2011, when I was diagnosed, my oncology consultant told me he didn’t think I would work again — and I have been determined to prove him wrong. Quite simply, I love my job and always have.
But I was a little apprehensive about doing my first ‘grim reaper’ talk with a patient’s family.
Strangely, I used to find this a satisfying task, and the difference you can make by properly preparing a family for the death of a loved one in a timely fashion is immense — it’s one thing I can do to help Chris and our families in the time I have left.
But now, faced with a patient of my own, I was worried that I’d get over-emotional about the situation.
It was a lovely lady in her 90s who had suffered a massive brain haemorrhage.
She’d been very independent, and from what her family said, was a game old lass who had enjoyed a few whiskies.
In fact, it was easier talking to them than I’d expected and the conversation went as well as it could have. They were realistic and agreed that our focus of care should be on her comfort and dignity.
When I do my grim reaper talk, I am very clear, almost blunt, because the patient and loved ones are often in emotional turmoil and the more straightforward you can be the better.
However, I have got better at it because I now know what it’s like to be that patient.
For the loved ones, it sometimes is not spelled out just how seriously ill the patient is. We only get one chance to get this right.
Chris and I struggle with seeing all our
friends starting their lives — while our married life is soon to end —
and my own life, too
Not only do medics have to be clearer to families about this, but we have to put more emphasis on what the patient wants and follow their wishes.
Do they want to be resuscitated; do they want to know if they are dying; what do they want their family to know; where do they want to die I desperately want people to be better prepared for death.
As well as not wanting to prolong a poor quality of life for myself with brutal cancer treatments, I made it clear from the earliest days of my illness that there is no way I want to be resuscitated.
I could easily have a blood clot or cardiac failure, but I want nature to take its course.
We have to be realistic about what medicine can achieve and be more patient-centred. Some senior consultants see a patient’s death as a failure on their part — but death is part of life.
And there has to be dignity in death. I have led crash teams, done chest compression, seen hundreds of people being resuscitated.
It is not like Casualty on TV — it’s brutal, undignified, a horrible process with only a small percentage surviving. Why would a seriously-ill person want their body pummelled like that
As the weeks go by and my symptoms gradually worsen, the feeling of living on borrowed time is strengthening.
For this reason, I am determined not to waste a precious second — perhaps this is contributing to my insomnia. Death is constantly hanging over me and everything that I do.
It’s so difficult, though, as no one can predict what is going to happen or how long I have left.
I could die of a blood clot tomorrow, or it could be many months away. I do not cope well with this uncertainty and these thought processes dominate my mind during the night, especially in the quiet hours when I cannot sleep.
A bowel obstruction is a likely mode of death, given where the tumours are, says my consultant. It causes horrible symptoms — difficult-to-control vomiting and pain, and I have witnessed such deaths.
It does not fit in with my plan for a serene death.
Chris and I have crammed more into the past eight months than in the whole ten years we’ve been together
I would seriously contemplate suicide instead, even though it goes against everything I pledged when
I became a doctor. I have already stockpiled enough appropriate drugs in the house to make sure this would be successful, but hope it won’t come to it.
I would dearly love to die at home — in all likelihood at my parents’ house, partly so that my personal care can be attended by Mum. I also think it will help Chris to cope if I am there.
I am lucky to know that I will die in the near future because I can prepare my loved ones. But I do feel bleak sometimes thinking about what lies ahead.
My two best friends have just got engaged and have asked me to make their wedding cakes and be their bridesmaids. One of them has set a date for next summer.
In all likelihood, I won’t be there to follow her up the aisle — but I do plan to make a fruit cake for her well in advance.
My brother and his wife are expecting their first child in January — but I daren’t imagine being here for that, much as I want to.
Chris and I struggle with seeing all our friends starting their lives — while our married life is soon to end — and my own life, too.
Of course, we do get a bit weepy. We recently had a brilliant day on the Orient Express but Chris said at the end: ‘This is what we should be doing for our 40th wedding anniversary — not now.’
But life goes on. I have hospital work to do, funds to raise, views to change — I hope my colleagues and the public in general will accept my honesty about death and take some comfort from it when they are dealing with their own or a loved one’s final days.
I could descend into misery or enjoy the life that I have left, and I’m choosing the latter. I have that bucket list to work through, after all.
Chris and I have crammed more into the past eight months than in the whole ten years we’ve been together.
November sees us jetting off to New York first class — courtesy of a kind medical colleague’s Air Miles.
And I know there is a Tiffany bracelet and designer handbag just waiting to be snapped up!
Adapted by Sheron Boyle from The Bright Side, by Kate Granger, £10, available from theothersidestory.co.uk. All profits are being donated to the Yorkshire Cancer Centre, Leeds.