We’re all dying.
It’s true, and no matter how hard we try to convince ourselves otherwise, there’s no denying our inevitable collective fate. Plastic surgery and Botox won’t save you. Two hours a day at Gold’s Gym won’t, either. You can eat 100 carrots, jog 20 miles, try the lifetime juice diet. Whatever. Come day’s end, we all cease to exist.
The question is: How to use the time we’re given?
Kate Granger has asked herself this quite a bit since 2011, when she was first diagnosed with sarcoma, a rare-yet-terminal form of cancer. At the time, she was a 29-year-old elderly medicine registrar at St. James University Hospital in Leeds, and the news—naturally—hit her like a Mike Tyson hook to the ribs. As a doctor, she had certainly been around death. But …. she was dying? How could this be? Why me? Why now?
Shortly after the diagnosis, Granger made the decision to live. She created an amazing bucket list—and is tackling the items one by one. She has written two books—The Other Side and The Bright Side, chronicling her journey (all proceeded benefit the Yorkshire Cancer Centre). She blogs regularly, and kicked off a social media movement (#HelloMyNameIs) to, in her words, “encourage and remind healthcare staff about the importance of introductions in the delivery of care.” She has thought long and hard about life, about death, about legacy, about love. You can follow Kate on Twitter here, learn more about #HelloMyNameIs here and visit her personal website/blog here.
It’s an honor to welcome our 196th Quaz, Kate Granger …
JEFF PEARLMAN: Kate, I’m gonna start this very bluntly. You are dying of cancer. What is it like to be dying of cancer?
KATE GRANGER: Well, I wouldn’t have chosen it if you’d asked me what my life ambitions were in my early 20s. However, in some ways it has allowed me to make sure my friends and family know I love them and to do some amazing activities over the past three years. I think of it as a kind of gremlin we now carry with us every single day, which sometimes sits quietly and allows me to live my life relatively normally, but sometimes chooses to prod me hard to make sure I know it’s still there. My cancer causes lots of pain, particularly at night so my sleep is disturbed and I’m reliant on strong painkillers to be able to function day to day. However to anyone glancing at me in the street they’d probably see a normal, healthy-looking girl. I struggle with that all-too-common comment, “You look really well!”—especially when I’m feeling rubbish. The invisible effects of dying mean that I carry a huge burden of fears, anxieties and uncertainty about my nonexistent future. I can’t plan anything more than a few months in advance and a common response to wedding invitations is, “I’d love to come, if I’m still alive.” The only way to cope with it, I’ve found, is to live by a one-day-at-a-time mantra, embracing humour as a coping mechanism and trying to enjoy every last little piece of life that I’m lucky enough to have.
J.P.: I have long suffered from a horrible, sometimes crippling fear of dying. It’s not the act itself (cancer, plane crash, drowning, etc). No, it’s being dead. Not existing. No consciousness, no awareness. Just being nothing. I tell this to others and they usually blow it off—with either God talk or the ol’ “You’re dead, so you don’t know you’re dead. What’s so awful?” Neither soothes me. As someone who has surely given her mortality quite a bit of thought, I’m fascinated by what you think …
K.G.: I’m scared of the non-existential aspect of dying, too. I’m scared of the process of actually dying more though—the chances are that my dying will involve bowel obstruction, bleeding and pain. And being unable to control those horrible symptoms is a hugely scary prospect. I’ve seen lots of patients die in similar circumstances throughout my career so my professional experience doesn’t really offer any comfort. I think the aspect that causes me most distress though is the pain I’ll cause my husband Chris and my family when I do die; that I won’t be there to comfort them; that I will be the source of their tears. I was brought up in the Christian faith and we were married in church, but illness seems to have pushed any faith I did have away. I can’t remember the last time I went to church and I’m not sure I even believe in God anymore.
J.P.: Here’s what I know: You have a husband, Chris. You live and work in Yorkshire. You graduated from Edinburgh University in 2005 and passed your MRCP in 2008. But what’s your journey? Like, why did you become a doctor? When did you decide to become a doctor? What sort of medicine do you focus upon?
K.G.: When I was little my mum used to volunteer at a day centre for older people with mental health problems. She used to cook the lunch once a week and in the school holidays I used to go along and help. I loved sitting and chatting with the older people there, playing Bingo and doing crafts. I think that’s where the foundations of my career to become a geriatrician were laid. I was bright at school and worked hard so with my love of people and science it seemed obvious to go for medicine. I was educated at state school but was a very under-confident teenager. I didn’t get a place at university in the first round of offers, but when I was studying for my final A-level exams I received a phone call from the admissions dean at Edinburgh offering me a place to study there. I was obviously elated at this news and didn’t stop smiling for at least a week. All through university I enjoyed the medical as opposed to the surgical specialties and the specialty I loved above all was elderly medicine. I loved the challenge of diagnosis, the variety, the people. I was fascinated by how very different one 90-year old is from the next. The stories patients have to tell and the context of their illnesses within their lives still excites me today. I have trained for 10 years post graduation and have for the past three months been acting up into a consultant role in medicine for older people. It has been hugely exhausting, challenging and scary but wonderful all the same. Many of my professional ambitions were stolen when I was diagnosed so to have the chance to do the job I’ve spend 15 years of my life training for has been amazing and a huge tick on the bucket list.
J.P.: You were diagnosed in 2011 with a rare and aggressive form of sarcoma. How did you know something was wrong? How long did you wait before seeing a doctor? How was the awful news delivered, and how did you initially respond?
K.G.: I was 29 and working hard as a medical registrar doing long days and night shifts. I’d been studying for my last set of post-graduate exams. So I felt tired. Understandably so, but looking back perhaps that fatigue was the first pointer to something being wrong. I then missed a period. I did a pregnancy test which was negative so I didn’t think much of it. Then Chris and I took a holiday to California. His aunty and uncle live in Santa Cruz in California and we love that part of the world. I had back pain when we stepped off the plane but thought I’d just slept awkwardly. I took some painkillers and got on with our holiday. We were very busy exploring San Francisco, Monterey and spending time with family. My symptoms weren’t going away though, and I started to go off my food. I just couldn’t eat—it was really weird. The pain was becoming unbearable. Eventually Chris found me lying on our bed in agony and put his foot down. His uncle took us to an urgent care centre where the doctor thought I looked unwell and referred us to the local emergency room. Within an hour of being in the hospital it became apparent that I was indeed very sick. My kidneys had failed and an ultrasound scan showed my kidneys were swollen. A CT scan showed the reason for my sudden illness; multiple tumours throughout my abdomen and pelvis, obstructing my ureters and causing the renal failure. I’d worked out I had cancer before they told me; there was no other reasonable explanation for the early test results. The doctor who told me stood near the door of my side room with his arms crossed and his back against the wall. He said, “We think it’s ovarian.” He didn’t finish the sentence with the scary big C word. I remember being calm and collected. I had to protect and shield Chris. I had to take charge of telling my family thousands of miles away. It was not a time for hysterics. I had to concentrate on the immediate hurdle of getting well enough to fly home.
J.P.: You’ve started an amazing movement, the #HelloMyNameIs campaign, to “encourage and remind healthcare staff about the importance of introductions in the delivery of care.” Which strikes me as sort of strange, in that, well, why wouldn’t a doctor introduce himself/herself? Why wouldn’t a doctor ooze compassion, humanity, empathy? So, Kate, why was this needed?
K.G.: In the UK healthcare is publicly funded and in the recent times of austerity that funding has been squeezed. This means everybody delivering healthcare in the NHS is under immense pressure. I think when that is the case and you are incredibly busy the first thing that tends to suffer is the compassion staff feel able to deliver. Somewhere we’ve gone wrong and along the way forgotten the basics of care and the person on the receiving end. I started the #HelloMyNameIs movement in 2013 after an experience in hospital where I’d been admitted to a surgical ward with post-operative sepsis following a routine stent exchange. I’m a keen observer of my healthcare and one of my starkest observations on that occasion was that very few staff introduced themselves to me before they started interacting with me. This felt very wrong, as the first thing we are taught in medical school clinical skills sessions is that you start with introducing yourself, your role, asking what the patient would like to be called and explaining what you’re going to do. So I decided, after discovering on Twitter that my experience was not unique, to do something positive about it. Hence #hellomynameis was born. I think it is needed to remind healthcare staff, by using my fairly powerful narrative, that the little things do matter and mean a huge amount to patients, and that delivering truly person-centred care can benefit both patient and staff alike. It is essentially a gentle reminder to inspire and encourage a change in personal behaviour of healthcare staff by harnessing the immense reach and power of social media.
J.P.: In your Nov. 23, 2014 blog entry you wrote this: “Charlie. That was what we planned to call our first born in honour and remembrance of Chris’s paternal Grandfather. But Charlie will always remain in our dreams and never become a reality. I will never have those precious new-born cuddles or experience the wonder of childbirth.” Kate, how have you been able to deal with these things? With the child you’ll never have? The events you miss? Because you seem to possess a profound bravery most people surely lack.
K.G.: Life is what it is. I can’t change what’s happening to Chris and me. We try our absolute hardest to live in the now most of the time. However, I am reflective about my losses and grief in my writing and the space of my blog and books; I guess as a cathartic exercise. I’ve been lucky to have been given much more time than we ever expected. I’ve managed to get to perform those bridesmaid and wedding cake baking duties; I’ve managed to get to know those children I never thought I’d see born. I have to be grateful for those things. I don’t see it as brave because being brave implies making a choice to act in a certain way. I haven’t had any choice about what has happened to us so we just take it each day as it comes. I do shed tears for Charlie, for the life we should have had, for the guilt of not being a complete wife for Chris and causing him pain, for not giving my parents grandchildren. But if I allow myself to dwell on those things I would be overwhelmed by depression and anger so I simply don’t allow myself to. I suppose that is my choice, so that could be viewed as brave.
J.P.: You decided to blog about dying–in v-e-r-y detailed, gripping passages (“Why had you come along to ruin our lives? Abolished dreams of having my own family? Stolen my lifelong ambition to become a Consultant Geriatrician? Chris and I would never grow old together and be able to spoil our Grandchildren”). First, why? And second, do you find it more exhausting or exhilarating? Is it therapy? Painful therapy? You trying to leave a legacy? Both? All? Neither?
K.G.: Writing was not part of my life before illness. During those early days of a six-week hospital admission when I was very sick and the outlook was especially grim my boss at the time suggested to me the idea of writing a diary. It had helped his late sister gather her thoughts and deal with her emotions during her cancer journey. So I did and kept a diary, initially in a notebook, and when the notebook was full on my laptop. It grew into almost an obsession and during long, painful, lonely nights I would take solace in pouring my feelings and observations out onto the page. I wasn’t trying to write a book—not initially anyway. When I read back what I’d written it became clear to me it held a message and that message was to healthcare staff. It had become apparent to me that how the people looking after me behaved, whether that be in a positive or a negative way, had a profound impact on my experience as the patient. Those messages were not ones that I had considered much in my medical training before illness. Sharing my experiences as “one of them” but “one of us” seemed like the right thing to do. One of my passions professionally is medical education and I guess writing is kind of teaching … I enjoy writing and I do find it therapeutic. I like to try and say the “unsaid” to try and stimulate conversation and trigger reflections from others. It is comforting to me that my blog will exist long after I’m gone as a permanent record of my journey. Legacies are important to me. I really don’t want to be remembered as “that poor young doctor who died of a rare cancer before her time,” but rather someone who made a positive improvement to healthcare.
J.P.: Do you feel like people approach you differently since cancer was diagnosed? I mean, are there those who overdo it, those who stay far away? And, going through this, what would you advise people to do, if a friend has cancer? Is there a proper emotional/behavioral response?
K.G.: Inevitably … I want to just be treated as Kate. The Kate that I always was. Just because I have a serious disease doesn’t mean that I don’t still enjoy the same things in life; have the same values. I hate being treated with kid gloves—independence is so important to me. But cancer is part of me now and does mean things are different. I’ve always been the sort of person who has a small circle of close friends and that hasn’t changed. I’m also quite happy in my own company much of the time. I know those people are there for me no matter what, but they don’t smother us with attention. I’m not sure there is a ‘correct’ response to support a friend on a cancer journey as everyone’s needs are so individual. I think remembering the importance of ongoing support after diagnosis is essential though. People can be quick to send cards and presents in the beginning but putting the effort into being there for the long haul means a lot more to me personally.
J.P.: What do you think people, in day to day life, fail to see? Fail to grasp? Fail to do?
K.G.: I think it is very tough for people who look at me to see someone who is not going to get better, who is dying. I have fairly clear skin, glossy hair and I’m certainly not skinny. Even at my most sick I didn’t outwardly look that unwell. I’m also incredibly open about the fact that my life is going to be cut short prematurely and regularly speak about the ‘D’ word. I’m sure trying to associate those two disparate factors can be difficult for people. Because I’ve defied the odds in terms of my prognosis I think many people think I’m invincible. I hear, “You’re not really going to die though, are you?” I am. I always try to keep the realist view of what’s happening.
I’ve often been faced with people who perhaps haven’t seen me in a while who are in fact rendered completely speechless by the situation. They always seem to have those sad, sympathetic, “But you’re too young” eyes. Everyone wanted to be involved at the beginning—we were overwhelmed with messages and visits. But as time has dragged on we’ve found out who our true friends are; those people who have kept up their support week in and week out; and those who have disappeared from the scene. I keep many of my symptoms to myself and don’t allow most people to see my suffering publicly. Chris is the only one who really sees how unwell I become with chemotherapy; the tears at 2 am because I’m in so much pain I can’t move. We are blessed, though, to be surrounded by some wonderful support and are extremely lucky in that respect.
J.P.: I love your bucket list—especially your accomplished goals of making brioche, riding a horse, skydive, visit Venice and getting a tattoo (which, sort of ironically, is listed right above visiting Anne Frank’s house). So tell me, Kate, what was skydiving like? What’s the tattoo, and where’s it located? What was the horse’s name, how was the brioche? And what did you think of Venice?
K.G.: My bucket list has given everyone in my life such a positive focus to create special memories not associated with illness and has led to some amazing experiences. Skydiving was simply awesome—I’ve never done anything like that before but I loved it and would do it again. It was such a rush. The tattoo is a small, pretty purple butterfly on my left ankle. The horse was called Harvey and was very patient with me after so many years since I’d be in the saddle. The brioche turned out really well. I love to cook and bake, and some of the items on the list are about learning new skills. Michel Roux, Jr. who is a famous French chef in the UK, gave me a lesson in brioche baking at his restaurant. With all his tips I’ve made it at home successfully twice now and it was delicious (if I do say so myself!). Venice was beautiful—we’d always talked about going but never quite got there. I loved the Rialto market, the ice cream and the tiny back streets crammed full of a huge array of different shops. We nearly fell out of a gondola on the Grand Canal when we got a little too close to a large boat! I would say my favourite item on the list though has been renewing our wedding vows. It was an incredibly emotional and special day.
QUAZ EXPRESS WITH KATE GRANGER:
• Rank in order (favorite to least): David Beckham, Jet Li, Temple Newsam, Pride and Prejudice, Ed Sheeran, Nas, Kobe Bryant, opera, your wedding ring, the smell of armpit, paper airplanes: My wedding ring, Pride and Prejudice, Temple Newsam (if you mean the Tudor-Jacobean house with beautiful grounds near Leeds!), Ed Sheeran, Paper airplanes, David Beckham, Jet Li, Smell of armpits (Had to Google Nas and Kobe Bryant—so not sure I can have a view of them!)
• Three things you can tell me about your husband, Chris: He’s like a human calculator—if you ask him any mental arithmetic he’ll give you the correct answer straight away. He’s amazing at blagging free stuff which has meant my bucket list has been extra special. He’s a keen walker and has done some amazingly long hikes for charity.
• Should there be another A-Team movie? And do you like the idea of Rampage Jackson filling Mr. T’s shoes?: I’m not really that bothered for me, but if the A-Team fans have an appetite for another movie then fine. I wouldn’t be first in the queue at the cinema to see it though.
• I’m starting to have lots of hair growing from my ears. What should I do?: Don’t stress. Life’s too short.
• What are three things that should immediately turn a person off of a new doctor?: As a patient you form a judgement of a doctor extremely quickly. For me it’s when someone fails to introduce themselves, stands over you when you are in bed or has disinterested body body language such as lack of eye contact.
• If you could have lunch with five celebrities, who would they be?: Michelle Obama, HRH Duchess of Cambridge, Stephen Hawking, Colin Firth and James Galway.
• Tell me the best joke you know: A bit childish but someone told me this one the other day: ‘Doctor, doctor, I’ve got something wrong with my eyes. I keep seeing an insect spinning round my head.’ ‘Don’t worry, that’s just a bug going round.’ I’m rubbish at remembering the punch line to jokes!
• Can you create a poem, right now, that incorporates Starbucks, Cleveland, Muhammad Ali and the number eight?: Been sat in Starbucks since about 8/ They asked me my name, #hellomynameis Kate/ I’m reading an article on Muhammad Ali/ Before meeting my friend from Cleveland called Sally/ Must rush now before I am late! (Thanks to Chris for his help on this!)
• Six words that describe your knees: Pale, fat, scarred (I knelt on a piece of broken glass when playing in long grass as a little girl) and best covered up!
• You have “another visit to California” on your bucket list. I’m officially offering up my house in Southern Cal as a place to stay. You coming?: If you’re offering and I survive round 3 in the chemo boxing ring Chris and I will be there. Thank you! That’s an incredibly generous offer.
