Interview: Dr Kate Granger, doctor and author living with terminal cancer

In August 2011, two months before her 30th birthday, she was diagnosed with a Desmoplastic Small Round Cell Tumour (DSRCT). If this rare and aggressive sarcoma is caught early, in a place where it can be excised, there is some long-term survival, but on average, only 10 per cent of people with this kind of tumour survive five years from diagnosis. Granger’s cancer had invaded her liver and bones, and a pelvic mass caused an obstruction to her kidneys. In cases such as hers, the five-year survival rate is zero.

The phrase “an iron fist in a velvet glove” could have been coined to describe Granger. I’ll bet some confuse her soft-spoken demeanour with weakness. “I am very open about my dying and expect those around me to be, too. I regularly talk about ‘popping my clogs’, even to people I’m not that well acquainted with,” she says.

The experience of being a doctor-turned-patient was so shocking that Granger wrote The Other Side, a book targeted at her fellow doctors, and is now bringing out The Bright Side, to answer all those who wrote asking, “and then what happened?” We meet at Edinburgh’s Botanic Garden, where she used to find sanctuary from the stress of studying medicine at Edinburgh. Over lunch, she explains that one of her goals was to prompt a rethink about how her profession speaks to and cares for patients. She’d also be pleased if everyone was inspired to speak more openly about death. “It’s the one thing we all have in common,” she says.

Though her terminal prognosis was never in doubt, she endured five rounds of gruelling chemotherapy before calling a halt. “It was New Year’s Eve and I was lying in my hospital bed in excruciating pain, with peritonitis, no white blood cell count, a horrible fever. I felt so ill. I was getting four or five good days in three weeks, and even they were average. I was reticent about chemotherapy before I started it: I’d seen how tough it is. I went through with it more for my family than for myself, but I always said when I feel the burden is outweighing the benefit, I will stop.

“Some saw that as giving up, but I don’t. I tried my best. It was time to stop and to live as well as I can, for as long as I can, without that constant upheaval. I am enjoying my life much more. I’ve been so much more emotionally settled. I’ve never regretted my decision for one moment. I fully appreciate that the oncologists have made me a lot better and it definitely had a positive effect on my health. I’m very grateful to them, but this time’s mine now.”

Three weeks after ending chemotherapy she returned to work at Pinderfields Hospital, in Wakefield, where she’s a Registrar in Elderly Medicine.

Her attitude toward cancer is so breathtakingly realistic that it’s bound to startle those who tiptoe around the issue. She writes: “Why are you seen as ‘heroic’ and a ‘fighter’ if you accept all the burdensome, in the most part futile treatment for incurable cancer? ... The Cancer Research charity slogan is, ‘Together we will beat cancer.’ No we won’t. We may become increasingly capable of counteracting the pathology, but I cannot imagine there will ever be a human society without cancer. All too often patients feel under external pressure to battle on when deep down they just want to enjoy their remaining time without so many medical interventions. Death and dying are taboo subjects in our society and I have never understood why.”

Nothing about Granger’s outward appearance suggests that cells are multiplying maliciously in her pelvis. She rivals the Dalai Lama for radiant serenity. Was she always this way? “I wasn’t. I was very career driven and motivated and ambitious. I’m much more content with life now.” But why spend what time remains working? “My job may have stressed me out in the past, but I have always loved it. It’s a privilege to be a doctor. You have an insight into people’s lives when they’re really, really vulnerable, and you can hopefully help them. I think I have more to give now than I did before. Also, I only work three days per week. I don’t do night shifts. I don’t do long days. But I look forward to going to work. My mum and my husband, Chris, wanted me to go back. They know how important it is to me, and they could see me festering a little bit, mentally.”

She was a studious, smart Yorkshire youngster who dreamed of becoming a doctor – there was no Plan B. “I was always interested in how the body worked, and interested in people. My mum used to run a centre for elderly people who had health problems and I used to help out. That is probably why I’m an elderly physician now.” It’s affected her perspective. “There isn’t a day where I’m not looking after a patient going through the final stages of life. It makes you think about your own death, and ‘Would I want this [treatment] for myself?’ So I was very accepting of the terminal nature of my cancer. I wasn’t looking for a miracle, something that’s not going to happen. I thought, ‘Face up to it, because they’re not going to make me better, so get on with living.’”

She’s had great fun drawing up a bucket list with a difference. “It’s more for other people, to make lasting, happy memories. We have just booked a day trip on the Orient Express, we’ve booked a trip to Barcelona, and I’m about to get a tattoo – a butterfly on my ankle. If I can arrange it, I want to see Anne Frank’s house, in Amsterdam.”

There has already been a memorable trip to London which included high tea at the Savoy, a tour of the city in a Rolls-Royce and dinner at Claridges. But her ultimate Bucket List experience was renewing her wedding vows with Chris Pointon. They met when she was a third-year medical student, and courted long distance until she graduated with honours, in 2005.

Describing the big day in The Bright Side, she writes: “To be honest, I was not really expecting to be as well as I am for it. I feel extremely lucky to be able to marry the man of my dreams for a second time. It is so special to see everyone that is important to us in one place. I get a little bit tipsy and spend most of the night in the centre of the dance floor. Chris tells me off for not talking to people more, but I’m having such a good time bopping I don’t want to interrupt that. I had a truly wonderful and remarkable day. Just for one night it felt like we stuck two fingers up to the Big C.”

Granger’s certainly experienced deep grief, especially early on, but it’s Pointon who’s struggled the most with her prognosis. Have things become any easier for him over time? “Chris is in a much calmer place. He was a complete wreck when I was first diagnosed. I think it’s easier for the patient. He is looking in, feeling helpless. But he’s a lot more settled now. I’m very matter of fact and I’ve got very dark humour about dying, and he doesn’t like that.”

Her colleagues were also caught off-balance by her attitude. “When I returned to work people were struggling to accept how I talk about things. I’d be saying, ‘I won’t be here in a couple of months, so I don’t need to follow up on that.’ They’d go, ‘You can’t say that, Kate.’ And I’d say, ‘Well it’s true’.”

This candid approach is partly to ensure that she gets what she wants, both as a patient and after. “There’s something called Advance Care Planning, and something called Preferred Priorities for Care. Any NHS patient can access these forms, and discuss end of life preferences with their doctor and family. Mine says I don’t want to be resuscitated. I don’t want to go to intensive care. Me being on an IC unit is both a waste of NHS resources and not going to do me any good. I would prefer to be at home and die peacefully without all that intervention.”

She is even more adamant on the page: “I have very strong personal views about what constitutes a good death. These revolve around as little medicalisation as possible once the terminal phase of life is recognised, by minimising unnecessary invasive investigations and procedures, concentrating on really good symptom control, and achieving the patient’s preference for their place of care, if at all possible.

“I [may be] abnormally open about these issues… but if just a little of my attitude was adopted, I am sure that many of the communication nightmares towards the end of life would be dissipated. I am astonished that more patients with life-limiting illnesses do not make their wishes known. Perhaps it is to do with denial. Choosing to talk about resuscitation with a patient on their death bed, when they have been battling cancer for months or years, is far from the right time in my eyes, and these conversations need to happen much earlier in illness.”

But why plan a funeral you can’t attend? “I’ll be watching,” she laughs. “You are there, in spirit. It needs to be about you and to come from you. I said no black: I’m a cheerful soul. And a slightly crazy thing: in one of my songs, Angel, by The Corrs, I want people to play air drums.” Her new mantra is, “‘Every second is precious.’ I plan my weeks around having at least three lovely things in the diary. I went out with our nurses a few months ago on an Ale Trail. One said, ‘I cannot comprehend how happy you are, Kate. You brighten up the unit with your smile and you’re always giggling. How can that be, when you’re so ill?’ I don’t really have an answer, other than I just don’t let things get to me any more. What’s the point? I walk on to the ward with a smile on my face because I’m going to do something that I love doing.”

What’s her view on assisted suicide? There’s a big sigh. “As a doctor, I cannot condone euthanasia or assisted suicide. My Hippocratic oath was that I was never going to do any harm. I can understand why people go [to Dignitas] and respect their decision to do that, but as a doctor I couldn’t be involved in it. For myself, I think if I had symptoms that we couldn’t control and I was in an awful lot of pain or had a bowel obstruction that we couldn’t fix easily, I would contemplate suicide. But it would be driven by me. If I wasn’t well enough to do that, I wouldn’t ask anybody else to.”

Her experience of double nephrostomies – tubes sticking directly into the kidneys through the back, linked to catheter bags – left her unwilling to contemplate counteracting a bowel obstruction with an ileostomy or colostomy, though she knows that with tumours located in the peritoneum around her abdomen, she’s likely to die of bowel obstruction. “Those tumours are at some point going to get bigger and press on my bowel, and that’s going to cause them to stop working. It causes vomiting and pain. It’s quite hard to control with medication and sometimes people have to have surgery. But I’m not sure I would go down that route. I think I’d rather die.

“Having the nephrostomies was very disfiguring, very embarrassing. Everything had to be planned. I couldn’t have a shower until the district nurses could come and do the dressings on my back. I couldn’t have a bath. I couldn’t turn over in bed. It was horrendous, everything was such a struggle. They thought it might be permanent. I fought very hard to get stents put in to keep [my kidneys] open.”

She rejects the idea that she’s brave, because bravery implies choice. “I call it pragmatic stoicism. You’ve just got to deal with it. I am just me, ploughing on with my life the only way I know how. I don’t see it as inspiring. I think I’ve remained as well as I have for as long as I have because I think positively. There’s no science to that. Especially in my professional life, I hate the idea of people thinking, ‘Oh, there’s that poor dying doctor. Look at her, I feel really sorry for her.’ I want to be Dr Granger, the competent, bossy registrar.”

Granger is used to measuring her time in small chunks, and is as surprised as her doctors that she’s still here, still feeling reasonably well. Might she reconsider chemotherapy? “In January I was quite adamant that I wouldn’t have any more, but circumstances have changed. My brother and sister-in-law are expecting a baby. I got talked into having another scan and it showed that my disease hasn’t got any worse, so we haven’t gone down another treatment route… yet. I’ve got my long-term goal of the baby being born, but I still live on a two-month window.”

We’ll have to agree to disagree about that word “inspirational”. I, for one, hereby vow to adopt Granger’s Three Lovely Things Per Week Rule – with immediate effect.

• The Other Side and The Bright Side are in paperback, £10 each or eBook formats via http://theothersidestory.co.u/. All profits are being donated to the Yorkshire Cancer Centre, the fundraising arm of St James’s Institute of Oncology, where Dr Kate Granger is being treated.

• For more information about death and dying, visit www.dyingmatters.org or the Glasgow-based www.finalfling.com