I thought I’d commit some of my thoughts about you to paper. I’ll warn you that this may make for uncomfortable reading at times and I may seem a little harsh.
There is no doubt that just under two years ago when we first encountered each other you managed to save my life. I completely get that and am deeply grateful to the doctors and nurses who helped to prescribe you and infuse you into my damaged body that was teetering on the edge of remaining alive. I had always been a little stand offish about entering into a relationship with you though. I had seen what you could do to my own patients back when I toyed with the idea of becoming a Haematologist.
The first time we came together I will never forget the nausea and vomiting you caused. It was horrendous. I didn’t eat for days and couldn’t even swallow my tablets or sip on water. You also gave me the most horrible colicky abdominal pain that I think if someone had handed me a gun I would have pulled the trigger.
You soon got bored with reeking havoc on my gastrointestinal tract and instead got to work on destroying my bone marrow. This induced the most severe apathy in me. I could barely stand up at times. Then the fevers and rigors started as my immune system came under your control. This meant I was once again incarcerated in the hospital and isolated from the world in my mutilated state. There were days and days of waiting and praying for my bone marrow to overcome the struggle with you and start to function normally again.
Then you cast your spell over my hair follicles; out fell my lovely dark, glossy hair in clumps. I remember being unable to cope with it any longer and asking the nurses to shave it all off for me. Just another mutilation taking away another little essence of Kate.
And so this went on. We learnt to counteract some of the nastier side of your personality but after five rounds in the boxing ring I surrendered and walked away from our relationship. You had left me battered and bruised but had also definitely beaten up my cancer enough for me to escape death for at least a little while.
I’m sure you felt jealous and scorned that I walked away so you left a few little reminders of our relationship on my body; the permanent numbness and tingling of my fingertips that reduced my dexterity; the subtle effects on my cognition that stopped me from being able to juggle several tasks at once; the long term immunosuppression leaving me susceptible to every virus around.
So we met again just a few weeks ago; like lovers who had argued but come together again desperately trying to forgive one another for their indiscretions. With the passage of time I had forgotten much of the less appealing side of your personality. Sadly you haven’t changed though. You still like to make me vomit. You still stop my bone marrow working leaving me hospitalised with infection yet again. You still took my hair leaving my self confidence at rock bottom.
The thing is you and I both know that you will never cure me. You can try and hold the cancer at bay for a little while but that overall fight is not one you’re going to win. So do we stay in this poisonous relationship for as long as we can both tolerate it or do we go our separate ways? It’s a near impossible choice that I’m going to have to ponder some more before I make it. In the meantime I’m afraid you will have to wait.
To mark my two year cancerversary in July this year I wrote a letter to my cancer reflecting on what it was like to live together and thinking about the future. As my cancer has recently decided to progress I thought I would put pen to paper again…
So you decided to wake up from your long sleep then. I wonder what you’ve been dreaming about all those months. Did I give you a nudge? Was it the episode of infection after my stent exchange operation? Did all those cytokines flying around my body jolt you awake? Or have you been waking up more insidiously over a few months, really quietly so that I didn’t notice at first and then bang, did you think it would be fun to give me a very hard tap on the shoulder, just to make sure I knew you were back?
Whatever it was that woke you up I do know about it now. The pain you are causing is horrible and I am not impressed. You are forcing my hand to have to resort to stronger and stronger analgesia, just to quieten your effects on my damaged body. When I sat in the Registrar’s Office at work and looked at the scan pictures my heart sank. There you were. Bold as brass. All over my abdomen. Filling my pelvis. Threatening to obstruct my large bowel. Sneakily hiding behind my left clavicle.
So here’s the thing. I’m not quite ready to let you take my life yet. I have a few more things I’d like to achieve. I want to look after a few more patients of my own. I want to finish my third book. There are so many people out there I would love to meet in real life. So I’m afraid I’m going to have to poison you again in the hope that we can shrink you a bit and send you back off to sleep. You are nothing without me, as when I die so do you, so please be obedient and let the drugs do their work on you. I know the time will come when you get your own way, but I’m not going to let that happen just yet.
I was recently a hospital in-patient with post-operative sepsis following a stent exchange procedure. During this admission I made some observations on the quality of my care. Perhaps the starkest of these was that not every member of staff who approached me introduced themselves. We have it drilled into us on day 1 of Clinical Medicine learning that starting the relationship with a patient begins with an introduction. It was easy marks in our exams. I’m sure it is the same for nursing and other healthcare professionals too. But something has failed…
As a healthcare professional you know so much about your patient. You know their name, their personal details, their health conditions, who they live with and much more. What do we as patients know about our healthcare professionals? The answer is often absolutely nothing, sometimes it seems not even their names. The balance of power is very one-sided in favour of the healthcare professional.
I have always been a strong believer in getting to know people’s names as part of building good working relationships with both patients and other colleagues. I think it is the first rung on the ladder to providing compassionate care and often getting the simple things right, means the more complex things will follow more easily and naturally.
So here the idea of #hellomynameis is born. If you support this idea please leave a comment below with your introduction to a patient. By doing this you are pledging to introduce yourself to every patient you meet. Please share this page with as many healthcare professionals as possible and let’s make things better… The NHS employs 1.7 million people. The majority of these people will interact with patients on some level. Let’s see how many pledges we can get!
Here is mine to get us started:
“Hello. My name is Dr Kate Granger. I’m one of the senior doctors who will be looking after you on the ward while you’re with us. How are you feeling today?”
Earlier this week I tweeted about the wisdom of my first ever boss. Dr Kemp was a fantastic, old-school doctor and I couldn’t have wished for a more supportive or inspiring Consultant in my first FY1 job. I’m sure he is a major reason why I pursued a career as a Physician. At the end of our attachment he checked the rota for a date when none of his team were on call and invited us all to his home for dinner with our partners. Just a demonstration of how lovely he was.
One of the titbits of his wisdom that has stayed with me for nearly 8 years now is his analogy of a medical admission to painting a picture rather than ticking the boxes. He hated the protocol driven Medicine that was starting to dominate practice at the time, and was a great believer in letting time help aid diagnosis. He would also always revisit a patient’s history with the brilliant skill of being able to pick out information, sometimes from the fairly distant past that was crucial in working out what was happening. I used to listen in awe at the back of the ward round, wondering if I could ever come anywhere near to emulating him.
There is the age old debate whether Medicine is an art or a science and most people seem to plump with somewhere in the middle, but I wonder whether we should explore our artistic tendencies a little more in the quest to improve patient care. Another boss who has been incredibly influential in my career taught me to start again and always come to my own conclusions, to paint my own picture. Of course there will always be boxes to tick in the modern day NHS, but perhaps alongside the box ticking we could get our paintbrushes out a little more often.
If being ill has taught me anything about being a doctor it is the importance of seeing a patient as a person and not merely a condition or disease sat in a hospital bed. It is amazing what you learn about people if you just ask. I have looked after a world record breaking knitter, an Olympic cyclist and a lady who had eleven children in the last few months. The disease focussed clinicians may see these facts as irrelevant, but I think they are central to understanding the person, how their pathology impacts on them and why they are special to their family.
When was the last time you stopped and had a conversation with someone on the ward just for the sake of having a conversation? We all blame being too busy on not doing this but are we really? Do we not have 10 minutes to sit down and explore someone’s worries? Having a chat can be therapeutic in itself. I know this. A few months ago when I was struggling with the uncertainty of my prognosis and the effect this was going to have on my career I had a long chat with my Oncologist. There was no examination, no diagnosing, no investigations and no prescribing; just talking. And it helped. It really did.
I see all this as painting the picture. It takes years to be able to paint a masterpiece, but the apprentice learns from the master and surely that is the model of how we all develop as clinicians. I’m going to invest in some more colours for my palette and remember to get my brushes out on Monday….
It has been an extremely interesting 2 years getting to know you. You gave me quite a shock in America all those months ago. To be honest your appearance in my life at that time was unwanted and frightening. My career was flourishing and we were planning to start a family. You took away all those aspirations in one fail swoop and left me in a mutilated and depressed state. I’m not sure I can ever properly forgive you for that although I immediately accepted that this was how my life was going to be, and that you were to be a constant companion that I was going to have to learn to get along with.
The months of treatment to suppress you and bring you under control took their toll on me both physically and mentally until I decided to stop the treatment and let you do your worst. I was determined to keep smiling and live my life to the full including a return to work before you got the better of me. In some ways it is because of you that I have been able to live the most wonderful lifestyle for the past year. I never would have been able to meet the Queen if it wasn’t for you so in a strange kind of way I am grateful. I think you have made me into a much more tolerant, optimistic and happy person and I thank you for that.
Well, you’ve been asleep now for 19 months. I wonder every day how to keep you settled and peaceful in your slumber. I also wonder every day when you are going to awaken and how you plan to take my life. Are you going to obstruct my bowels? Are you going to cause a pulmonary embolism? Are you just going to overwhelm my body? I guess you haven’t decided this yet yourself, but please be kind and let it be quick whichever way you finally settle on.
I am often told “Kate, you are a true inspiration!” This makes me feel uncomfortable. In this short blogpost I want to try and explore what inspiration means and perhaps some of the inspiration I find in my life.
I am prompted to write as earlier this month I was named ‘Yorkshire Woman of Achievement 2013’ and I also recently discovered that my name has been included on the Health Service Journal’s inaugural ‘Most Inspirational Women in Healthcare’ list. All this attention literally bemuses me. I am just a Yorkshire lass trying to deal with a horrible situation in the most positive way I can manage. I never set out on the path of sharing my story thinking I will be recognised for it.
The dictionary definition of inspiration…
- The process of being mentally stimulated to do or feel something, esp. to do something creative: “flashes of inspiration”.
- The quality of having been so stimulated, esp. when evident in something: “a moment of inspiration in an otherwise dull display”.
Not to forget that I am a doctor and inspiration is also the opposite of expiration!
So how does my story ‘mentally stimulate someone to do or feel something’? I wonder if really what people mean is that they feel sympathy for me, but that sounds patronising and ‘inspirational’ sounds less so? Perhaps my live for the day philosophy and Bucket List prompts us to reassess what is important in our own lives and think about ‘what if it were me in Kate’s situation?’ ‘How would I cope?’ However, in one definition it is suggested that inspirational means a desire to emulate someone else. I am really not sure that people out there want to be in my position with terminal cancer age 31. Maybe they want to emulate the fact that I still go to work despite the circumstances; that I try to smile no matter what the world throws at me…
Why do these comments make me feel uneasy? I’m not sure really. I guess I never expected all this attention in a million years. I find it extremely humbling that people often write to me and share incredibly personal stories or tell me that my writing has helped them or a loved one come to terms with a situation. That is a very special feeling which replicates the sense of achievement looking after someone in my role as a doctor. However, it still feels strange, touching the life of a complete stranger. Perhaps I should embrace it all, but in reality I am an introvert, and it is just simply not in my nature to go about saying ‘look at me, I’m extraordinary!’
Where do I find my inspiration? What motivates me to get out of bed in the morning? My family, my work and especially my patients, my kitchen, my music… Simple things in life that allow me to be creative, to try and do some good and to live well while I have the chance…
Have you thought about your funeral? Which music you’d like? Which readings? How you might arrive? It all might seem a little morbid. As Dying Matters awareness week draws to a close I’d like to spend a little time considering funerals. The hash tag for this year’s campaign has been #BeReady and as part of this Dying Matters have suggested 5 steps we could all take to prepare for our own mortality. One of these is making a funeral plan…
I’ve planned my funeral. I sat and wrote down my ideas the day after I discovered the metastatic nature of my cancer. I have added to and edited this rough outline as the months have gone by inspired by my life experiences since. The music is probably the most important aspect of a funeral in my eyes. I have chosen a mixture of uplifting and reflective pieces from classical to pop illustrating my eclectic taste and to allow both joyful and sad moments during the ceremony. I have agonised over the readings and have hopefully found some that will give people comfort. I would like a weaved willow coffin and I would like everyone to decorate it with colourful butterflies at the start of the service. I want to wear my favourite Monsoon maxi dress and I definitely need plenty of makeup on. The after show party I would like if possible to be a joyful event. I have already booked the DJ. Everyone needs to get tipsy and have a really good dance. I will be looking down and scowling if the dance floor is ever empty. I would like the room to be decorated with hundreds of photos. I envisage it as a real celebration of my life – lived to the full and with a sense of purpose. And definitely putting a little fun into funeral…
I have been to 2 funerals recently. Firstly my Grandma. She had written a plan. We read this plan after she died and it really made us smile in parts. She wanted her funeral to happen at Huddersfield Crematorium where he beloved Charlie also made his final journey. She wanted her favourite hymns ‘Praise my soul the King of Heaven’ and ‘Abide with me’. She wanted to enter to ‘The dance of the little swans’ from Swan Lake and to leave to ‘Moon River’ by Frank Sinatra. She made sure there was a free bar at the gathering afterwards and that she was toasted with her favourite tipple of sherry. She was also very specific that the sandwiches should be dainty with the crusts cut off. I gave the eulogy. It was incredibly difficult to condense 90 years into just a few pages with history, humour and reflection all combined. One of my pet hates in life is when the funeral celebrant who has usually never met the person gives the eulogy. It feels so impersonal somehow. I was proud to lead Gran’s tribute and I hope she was looking down and pleased with how I portrayed her.
The second funeral was for my dear friend Katie. She was the one person from the cancer world that I had really connected with. She had sarcoma too and when we first got to know each other my prognosis was deemed to be worse than hers. Unfortunately her cancer turned out to be more aggressive than the Oncologists had first thought and she deteriorated fairly rapidly with no further treatment options. Katie’s funeral was beautiful. It really was. She arrived in a horse drawn carriage pulled by two white horses with huge feathers in their headdresses. She had a beautiful white coffin. She entered the historic Crematorium chapel in Leeds on the shoulders of the pallbearers to ‘Diamonds in the Sky’ by Rihanna. Her friends and family led tributes which were both happy and sad. Becca, Katie’s sister-in-law bravely read aloud a letter Katie had written to everyone:
“My dearest friends and family. I will be where you want me to be, in your hearts, your bumble bee, your angel, your star in the sky, a smell, a flower, a feather, a bird. I’m safe, at peace…” As you can imagine there was not a dry eye in the house.
Both these funerals reflected the people they were celebrating so perfectly. And why? Because they were planned by those people. So please no matter what stage you are in your life make a little time to give your funeral some thought. No-one can ever know what is around the corner…