Kate Granger is a doctor who, at 31, has terminal cancer. She also has a mission: to break the silence around dying by tweeting from her deathbed

Kate Granger, a 31-year-old doctor with terminal cancer once thought to have only months to live, is looking at her mobile phone in amazement. For the past seven or eight months, she has been gathering Twitter followers in their thousands. Currently, it’s 6,322 and rising. She has no idea who they all are, but they love her. One sent her air miles so she could fly first class to New York with her husband; another was possibly responsible for her unexplained, out-of-the-blue invite to a garden party with the Queen next month. “I don’t really understand it,” she says, shaking her head. “Maybe the world likes a positive story? Maybe it’s the whole idea of my dying and the fact that I talk about it openly, with some humour and sense? Maybe it’s that I tell it for what it is, and that helps people to think about what their futures might hold for them? I don’t know…”

A recent Twitter announcement is that she is going to live-tweet her death from her deathbed. She doesn’t know when she is going to die – she’s already outlived what she calls her “expiry date” – but she says she is as prepared as she can be. Her Twitter followers (she is @GrangerKate) greeted the news of deathbed tweets with enthusiasm and support, sending in suggestions for an appropriate #hashtag, such as #goinggoinggone or #toinfinityandbeyond. (She finally settled on #deathbedlive.) Lots asked her, “Are you serious?” and she tweeted back, “Deadly.”

Given she has terminal cancer, Kate Granger’s humour brings new meaning to “black”. Her approach to death, too, brings new meaning to “modern”. Working in tandem with Twitter, she has attracted a following on her blog, drkategranger.wordpress.com: a doctor and terminally ill cancer patient musing about life and death. In one post, she asks, “Is cancer inherently evil? I think not…”, admitting that, as a scientist, “I quite admire my cancer.” In another – titled “Dying – can it ever be a laughing matter?” – she recalls how she had been enjoying a lovely supper with her husband and asked him, “Would it be fat to have another bun for pudding?” and that he had replied, “Yes, but you’re dying, darling, so does it really matter?”

“We both then fell about laughing hysterically. It was one of those genuinely funny moments in life where you laugh so hard that you cry, and your abdominal muscles hurt.” See what I mean?

So here we are, in her sitting room in Wakefield, drinking tea and chatting away about her terminal illness as if it were the latest issue of Grazia. In August 2011, aged just 29, she was diagnosed with a rare type of cancer usually seen in teenagers – desmoplastic small round cell tumour (DSRCT) – which had spread to her liver and bones. She had become ill while on holiday in California with her husband, Chris, and his grandmother, first with a niggling right-sided back pain, which she ignored. When the pain became unbearable and she started vomiting, Chris took her to ER. Within days, she was told that “several soft tissue masses” had spread through her pelvis and abdomen, blocking her kidneys, which had stopped working and become filled with pus. Her life changed as quickly as that. She knew from the scans that it was cancer, although not what sort. She phoned her mum back home in Huddersfield and broke the news – a terrible conversation, she remembers, because nothing had been properly confirmed. Her mum told her dad. The terminal diagnosis happened not long after Kate got back home. She was told the median survival rate for DSRCT was 14 months, which means, statistically, she should have died in October last year.

Being a doctor, she says, as soon as she heard that the cancer had travelled to her bones and liver, she knew she was going to die. “I accepted it immediately,” she remembers. “There was no anger, no bitterness; just a lot of sadness. I was never in denial, not from day one.” She had just begun to discuss with Chris the prospect of starting a family. That idea of her being a mother had now been crushed, along with everything else. At that point, she had too much else to contemplate to mourn motherhood. She told her parents that she was going to die while they were visiting her in hospital: “We knew at this point it was a terminal condition. They reacted very calmly. I’m sure the tears were hidden from me.”

She writes movingly in the first of two self-published, fundraising e-books, The Other Side, about how on hearing the news she asked the doctors and medical students to leave the room, turned over in bed, pulled up the covers and sobbed.

Little more than four months later, in January 2012, after five rounds of gruelling chemotherapy, she decided to put a stop to all treatment and enjoy what life she had left: a better life, but less of it. “With no treatment, they thought I had months left, four or five at most. It was hard for my family, but I was clear. I was in so much pain that at times I had suicidal thoughts.”

More than a full year after that – now treatment-free – looking at her you’d never know she was terminally ill, except perhaps for the fact that she moves and speaks at a slightly slower pace than normal. It sounds trite, but there is a serenity about her. (“What will be, will be,” she e-mails me a few days later about waiting for some new scan results, which may indicate that the tumours are advancing.)

Her once long, glossy hair is now a dark pixie crop. After the diagnosis, she cut it into a short bob, then, with characteristic let’s-get-down-to-business resolve, she got the nurses to shave off the whole lot with a pair of clippers in preparation for the chemo.

Ironically, she was never much of a Facebook user before she got cancer and she wasn’t even on Twitter (that started eight months ago, after she ran a workshop at a conference and learnt of its power). She began using Facebook as a way of updating friends and family about her treatment. It really took off when she hit upon the idea of her “bucket list”, based on the film in which Jack Nicholson and Morgan Freeman play terminally ill cancer patients who set about trying to achieve things they once thought impossible.

Kate’s bucket list was long (it’s a good job, too, given she’s still alive), and people were riveted. Three weeks after throwing in the towel on chemo, she had a phased return to work as a second-year registrar in elderly medicine at Pinderfields Hospital in Wakefield. There had never been any doubt in her mind that she would go back to work, although people did ask her why, given the terminal diagnosis. She wanted the normality, but she also craved to be back in her white coat. Since being a very small child and watching her mother run a day centre once a week for the elderly with mental health problems, she had set her heart on becoming a doctor. For years she had pushed herself through school – “quite bright and very ambitious” – and then through her medical degree at Edinburgh University: “I’m pretty much defined by being a doctor,” she says. “When I became ill, I had three years of training before becoming a consultant in medicine for older people. I don’t know what I would have done if they’d told me I couldn’t go back.” She looks momentarily panic-stricken. “I love my job so much. It’s who I am.”

She had no eyebrows, no eyelashes and wore a hat. One or two patients asked, “Are you ill?” to which she’d reply honestly. But as her hair grew back, the hat came off and she began to look normal again.

She’s been working ever since, now up to four days a week, with the rest of her life devoted to the bucket list.

There have been trips to London, Edinburgh, Paris and Barcelona. She has recreated some of her childhood memories, such as visiting the zoo, watching a cricket match, riding on a steam train, eating fish and chips by the seaside and cooking bacon on a camp fire on the moors. She renewed her wedding vows to Chris, a manager at Asda, whom she married when she was 23, and recently threw a Staying Alive party. She used the same DJ as at her second wedding party. “See you next year,” he shouted at the end.

She’s getting a butterfly tattooed on her ankle at the end of this month, she’s been an extra in Coronation Street, she’s flown a hang-glider and she’s going to Buckingham Palace on May 22 (new linen dress covered in peonies, with beige fascinator). Her life has been nothing short of amazing, lived with intensity and joy, which has led to her achieving goals she once, pre-diagnosis, would never have thought possible: “I’ve lived my life to the full. I’m no loser. I hate all that cancer speak about ‘fighting a battle’ and ‘losing the fight’.”

She swims 50 lengths three times a week, and still lives by the three-lovely-things-a-week rule. This evening she is going out for a curry with Chris; tomorrow she is going to a spa with a girlfriend; Sunday will be spent in Manchester with her only brother, his wife and their new baby, Jacob, whom Kate adores and whom she never dreamt she’d see born. “My infertility hadn’t bothered me too much until Jacob was born,” she says. “He is so gorgeous and I am besotted, but his arrival has highlighted my own infertility. Somehow it feels wrong to be broody when I know there is no possibility of my ever having my own children.”

Until very recently she has been feeling well. “Maybe they’ll just tell me I’m a bit run-down, or maybe the cancer is getting worse.”

Added to this, she has become a local celebrity, due to the £59,000 she has raised for the Yorkshire Cancer Centre at St James’s Hospital in Leeds (where she was treated), from the proceeds of her two books. (The Bright Side is the second, and deals much more with her emotions.) She’s recognised much more at work again, not because she is ill but because her patients are familiar with her from her charity profile and all the local television appearances.

“Dying gives you a freedom to speak your mind,” she says. “I would never have spoken up before about anything really. I was just a normal girl living a normal life. I wasn’t involved in any of this, but I think the situation I find myself in lets me express what I am feeling in a more clear way. As somebody said to me on Twitter, ‘Oh Kate, I love your tweets, because you say it how it is and nobody else dare say it.’ ”

I confess to her that I don’t think I could bear to follow her dying tweets. It seems too… what? Intrusive? Personal? Morbid? Upsetting? Why would she want to make her death so public when initially, at least with her work colleagues, she had been so private?

“This might sound bigheaded,” she says, “but one of my legacies, or one of the ambitions I have for my legacy, is that I would really like the UK to be more open about dying. I think in order to achieve that, you have to embrace how society functions, and one of the ways that society has changed over recent years is social media. I tweet what I am feeling now, like when I am going through scans, but it would be really interesting to tweet how I am feeling at the end and how

it is going. I think that people don’t want to accept that dying comes to us all. There is this reluctance and inability to contemplate dying.”

Dr Kate Granger certainly has the power to make you think. However, her journey and the unusual manner in which she is approaching her death have not always been easy – far from it – for those who love her the most.

Following her diagnosis, she recalls how Chris would tuck her up in bed and then she would hear him sobbing to himself downstairs on the sofa. At times, she genuinely worried that, after her death, he would commit suicide. In The Bright Side, she writes: “I don’t know how to help him… He struggles so much with my matter-of-fact attitude and gets upset at the smallest of comments. I am perhaps not as sympathetic as I should be and we seem to be constantly at loggerheads recently… 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… The doctor in me really wants to sort him out. The wife in me is distressed by his distress.”

“Behind closed doors I was an emotional wreck,” Chris tells me, “although to everybody else I adopted a very brave face, to the extent that others would comment on how well I was coping with the situation. I was angry with life and asked the ‘Why Kate?’ question several times, of myself and of the sky.”

He found her humour a challenge at times – who wouldn’t when a loved one is quipping about their death? – as well as the fact that Kate often forgot that he isn’t a doctor like her.

But slowly, over the months, he says, he has gradually learnt to share her “live for the day” philosophy. “It’s helped re-engineer my emotions into a more positive and accepting state.” (Hence their shared pudding joke.)

“He’s come a long way in the past few months,” Kate confirms. “He’s been in a really calm, settled emotional state recently. When we do our wonderful things together, he does enjoy them now without that bittersweet feeling that I often have.

“I think about Chris’s future a lot. I hope he will be happy; I hope he will meet another girl, in time, who will make him happy. I hope he continues to have a successful career and he travels to all the places we never got to. I hope he continues to work hard for the charity. But I don’t think he’ll stay in our house in the long run. There will be too many memories for him.”

Recently, I was floored by one of Kate’s tweets in which she revealed that she had written 70 birthday cards for Chris, one for each year, and stored them in her memory box for him to open as he grew old without her. When he turned 36 last month and she was unexpectedly still alive, she tweeted, “Shall I give him the card from Dead Kate?” (You can see why she has so many followers. It’s like a Tom Stoppard play.)

Dead Kate sending cards from the non-existent grave? It’s quite a tweet to get your head round over the Cheerios: “Well, it was Dead Kate,” she says matter-of-factly. “I wrote that card thinking I’d be dead when he opened it. But I do remember thinking, ‘Which part of me wrote that card?’ ”

And did you give it to him? And a “current” one, too? “Yes, he wanted that one. He opened it and had a little cry, and then I gave him another one from what we called ‘alive and kicking Kate’, and then we went out to supper.’ ” I shudder and she bursts out laughing at my squeamishness.

Chris has not always approved of Kate’s use of Twitter. “He thinks I’m addicted to it,” she tells me.

“The thought of Kate tweeting from her deathbed initially made me uneasy,” he admits, “but I’m now totally behind it. Her journey is unique, and I know that. Because she’s a medical professional, I know she wants to use [her death] as an educational tool for others – hence why social media plays a big part of this and why Twitter is a great tool. We call the shots on Twitter and it’s less intrusive than, for example, a documentary.”

After Kate went public that she was going to tweet her death, she was approached by a clutch of documentary-makers, all wanting to film her through to that dying moment, rather like the reality TV show that came out of Jade Goody’s death. She said no to them all: “Having my phone in my deathbed with me is not inviting other people, real people, into that scenario. It is still just me with my family, but I am sharing that experience.”

So how will it work, this tweeting as she dies? I have to stress here how hard I find it to talk to Kate about the exact nature of her death, all the while keeping from my face the “oh-God-you-are-so-young” look that I know she hates. My own profound unease proves her point precisely about how we British fear death, how we are embarrassed talking about it, how we avoid doing so and, as a consequence, often deprive the dying of the chance to both control their end and plan for what Kate calls “a good death”.

She hopes to die at her parents’ home in Huddersfield, where she grew up, with Chris and her parents by her side. She doesn’t know how or when it will happen, whether the cancer will overwhelm her body, whether she will suffer a pulmonary embolism and die immediately, or whether she will develop a painful bowel obstruction (she dreads this the most). She has made a will, planned her funeral and arranged with her palliative care team for pain-relieving medication but minimal intervention. She wants enough time to say goodbye but not a lingering death, where her loved ones see her suffer. As far as possible, she is controlling the prospect.

And the tweets? They are in her control, too. “Well, it actually doesn’t take that much effort to tweet, does it?” she says. “If I am too poorly to do it, then I am going to tell Chris what to write.” Given his initial ambivalence towards Twitter, it’s a mark of his devotion to her and his own journey that her husband has agreed to tweet on her behalf. “I just have to learn to use it now,” he says.

“I don’t envisage it being hundreds of tweets,” Kate continues. “More like two or three a day, just to explain what is going on and to make people stop and think about dying and what people go through.”

Neither of Kate’s parents understand Twitter, and I can’t imagine it will have an impact on them. Her mum shares her humour. When she bought Kate an expensive handbag, she said, “Well, you won’t be needing your inheritance, will you?” The picture Kate paints of her father is almost unbearably poignant: “He is very quiet. He doesn’t say anything, really. I guess he is British. I know he is proud of me and wishes this wasn’t happening to his little girl, but it is, so we have to get on with it.”

Kate’s short-term future is unknowable. She says she only plans eight weeks ahead, although recently she did decide to undertake the last part of her training, which would see her become a consultant in June 2014: “That seems ambitious to me, but you never know.”

If the CT scan comes back with evidence of advancing tumours, she has not ruled out further chemotherapy: “I feel so different now from before; I feel so strong.” But she is by no means decided – even now, when the results are due next week.

Not knowing when she is going to die, as she outlives fellow sufferers she befriended on the internet, is hard. “Everybody around me is pleased, but the doctor in me knows the further away I move from the median survival rate, the faster I am approaching my death. Fourteen per cent of people with my cancer last five years, but they are in the US with up to 15 rounds of chemo, surgery and radiation over their whole tummies. It’s not people who have stopped their treatment.”

And there is guilt, too, attached to her survival. “What’s so special about me?” she has thought in the past. But she tells me today, “Life is for living. There is no scientific evidence that proves a positive outlook increases how long you stay alive, but what I can say, having cared for elderly people who remain positive, is that they tend to live longer than those who don’t.”

She shows me three scrapbooks full of news clippings of her fundraising success. She is the poster girl for the cancer unit at St James’s.

Among them is a letter from 91-year-old Connie Hird, from Bridlington: “I was humbled when I read the article about Dr Kate Granger. I am 91 and, although fit and active and still driving my car, enjoying line dancing and on no medication, I occasionally get depressed when I consider I live totally on my own… I now intend to count my blessings more often after reading about this marvellous lady.”

That’s what Kate Granger does. She makes you count your blessings and invites you to think about a death that, perhaps, one day might be the kind of death you want. Not a bad legacy at all.

To read Kate Granger’s blog, go to drkategranger.wordpress.com. To donate to her charity, visit justgiving.com/kate-granger.

Kate Granger will be taking part in a live web chat on thetimes.co.uk on Friday May 17, 2013, 1-2pm