And a happy new year…

My first Christmas affected by cancer was four years ago. I had just been through my fifth cycle of chemotherapy and was discharged on Christmas Eve. I couldn’t face going anywhere other than home, so Chris, my parents and me ate French onion soup and mince pies for our Christmas dinner and I promptly fell asleep on the sofa. I was readmitted to hospital a few days later with febrile neutropaenia and the worst abdominal pain I’ve ever endured. 

Christmas 2012 was a much happier affair spent at my parents for lunch, then the in-laws in the evening. However, there was still a large dark cancer cloud hanging over us with that continuing sense of “maybe this is my last”. 

Christmas 2013 was in some ways very happy, but was also massively difficult. My cancer had woken up in the preceding October and I was again being poisoned. I made a decision to delay my second cycle, even though I knew it would impact efficacy. This was in order to have Christmas at home, not marred by unpleasant side effects and hospital admissions. I remember escaping from the sarcoma clinic that day with my friend Kay like truanting school girls!

Christmas 2014 was another tricky one. I had a scan for worsening symptoms in mid December and knew that it had shown worsening disease. We decided not to make this common knowledge until after the festivities, in an attempt to make happy memories if it was to be my last. Putting the brave face on was incredibly difficult, then the bad news breaking that followed was even more so.

This Christmas I am for the first time in a long time excited. We are spending the day with my brother, his wife and their two little ones. I’ve bought more presents than an Aunty probably should and am looking forward to trying goose for the first time ever. I can’t wait to get up at some ungodly hour with the kids and see their faces while they open their presents. I don’t know what my cancer is up to right now, nor do I have any inclination to know as I am just settling into my very first Consultant post. I do know however that chemo is becoming less effective and this may well be my last. If it is I’m sure it will be one to remember and I am grateful to be in a physical state to enjoy it. 

This time of year often leads us to reflect on the year that has just past. For me: 4 cycles of chemo, a national launch of #hellomynameis, an MBE, an Honorary Doctorate, a UK wide campaign tour, a trip to California, a CCT and a new job. Not a bad year really…

It is also a time to look forwards to the forthcoming year. I don’t know what 2016 has in store for Chris and me. I can’t keep defying the odds forever, but I remain so physically fit in spite of the cancer. Who knows? ‘One day at a time’ has to be the continuing philosophy for now…

I’d just like to wish everyone touched by cancer in any way a happy, peaceful & symptom free Christmas. 

Dear Jeremy

Dear Jeremy,

I write to you as a junior doctor on the verge of becoming a consultant. I write to you as a family member with young nephews and a niece, and parents about to enter older age. I write to you as a patient dying of cancer. Therefore the NHS is a central and vital part of my life. 

Three weeks ago I came pretty close to dying from a serious consequence of cancer therapy. It was the junior doctors and nurses, not the Consultants who got me better from that episode. The professionalism and compassion from these young people was amazing. 

Junior doctors have a huge amount of responsibility, even from day one after graduation. I’ve saved a fair few lives in my career. I’ve also been so tired that I could barely see straight after my seventh consecutive night shift. Protecting our young doctors so they can work, develop and flourish is essential and as Secretary of State is part of your responsibility. Rewarding them properly for their dedication and hard work is only fair…

I was a junior doctor when the MTAS debacle happened which saw many of my friends and colleagues leave the country. Many have since returned, but your plan will see a much larger exodus of young talented doctors to the rest of the world.

Please do not impose your ridiculously unfair contract on us. Sadly I think we are probably only your first target; no doubt you will be coming for the nurses, midwifes, physiotherapists, dieticians, speech therapists, ward clerks next… The NHS is a cornerstone of the United Kingdom. I am proud to work for it and would not want to receive cancer treatment anywhere else. Please do not destroy it for future generations. 

An extremely worried and angry doctor and patient,

Kate

Happy second birthday to #HelloMyNameIs

Today marks a milestone on the #hellomynameis journey as it reaches its second anniversary. 2 years ago today I was in hospital with a post-operative infection, and was inspired by a conversation with my husband during evening visiting time. I had been moaning to Chris about the lack of introductions from the healthcare staff looking after me. Being the practical optimist that Chris is, he simply told me to “stop whinging darling and if it is that important to you do something about it.” So we did. And it all started with a tweet…

***I’m going to start a ‘Hello. My name is…’ campaign. Sent Chris home to design the logo… #hellomynameis***

Reflecting on everything that has happened 2 years later is quite surreal. We had a tiny idea. We used my voice, passion and dedication to improve the NHS that I so dearly love and my message was heard loud and clear across the care sector. The journey has led us to Buckingham Palace to receive my MBE from HRH Prince of Wales, on a UK wide tour of the country where we met 2000 members of frontline staff, to Downing Street to meet the Prime Minister and to the Scottish Parliament. The campaign has received national media coverage and the social media reach statistics are astounding.

I firmly believe that communication and compassion are the most important of the 6Cs and that stating the obvious is a useful thing to do. I’ve just had another hospital admission for neutropaenic sepsis. When my Consultant came to see me he brought his brand new team of junior doctors. Four new faces looking at a washed out, sweaty, pale and in pain version of me. But DtM did something special. He introduced me with “this is Kate” and then asked them to all introduce themselves. Immediately I was no longer the circus act but an active participant in the consultation, no longer surrounded by strangers. This is why #hellomynameis has become so important to me. It makes a huge difference to patient experience. I continue to receive stories from other fellow patients about their positive and negative experiences of introductions and these are my main motivator to keep the campaign alive and flourishing.

I am so grateful to each and every individual who has pledged their support to the campaign. Without the NHS responding to my call none of this would have been possible. The energy of our champions out there to spread the word is fantastic and I would like to say a huge thank you to anyone who has done anything to promote #hellomynameis.

This is all about a simple behaviour that forces us to connect with our patients, to foster relationships and see the person behind the illness.

What can we do to keep the momentum of the campaign going? All ideas welcomed and appreciated…

Dear Cancer Part 6

Dear Cancer,

Well, this was never a letter I expected to write… 4 years we’ve shared this curious relationship of ours. 4 years. Who’d have thought it? 

Last time I wrote I was incredibly frightened. You had woken up just before Christmas and caused no end of issues. I’m not sure if I was more fearful of the impact of you on my creaking body or the impact further chemotherapy and the associated unrelenting infections were going to have on me. 

I struggled so much with the poisoning this time, not just physically, but mentally too. It was almost as if every little essence of Kate was trickling away with each infusion. I don’t mind admitting to you how down I was, especially when I decided enough was enough on chemo front. I didn’t want to work. I didn’t know what to do with myself. I guess I just felt weak and lost. Looking back on that difficult time I wonder if I was actually having some kind of delayed adjustment reaction to your presence in our lives.

It has taken what seems like such a long time to get back on my feet, although in reality it has only been a few months. Gradually, little by little, with our ‘one day at a time’ mantra I have managed to claw back my sense of self, and am finally feeling some semblance of normality again. Restarting clinical work, charity fundraising, ticking a few more items off the Bucket List, #hellomynameis and spending precious time with friends and family have all helped to discover me again. 

Are you asleep at the moment? Other than the annoyance of the frequent stent infections I have had a good few weeks of actually feeling well. I have become strangely and acutely aware of your activity or lack thereof after living with you for 48 months and the tell-tale signs of your wake up stretch. However saying that every little twinge in my tummy will get analysed, probably overly so. And these last few days those twinges have been occurring too often for comfort, especially during the night. Then there is the firm lymph node that has recently recurred in my left supraclavicular fossa. I find myself palpating it almost constantly, wishing it wasn’t there…

I don’t know how long you’re going to give me. I don’t know if I’ll be able to face future treatment. I don’t know if I can even face a scan. I just don’t know. Uncertainty, for me, is by far the worst aspect of our relationship. I know I keep saying that and you can’t give me any answers. But I cannot stress enough the burden of living with uncertainty day in day out. It really does takes its toll. The trouble is taking your picture doesn’t always resolve this uncertainty; just because you might appear stable on one scan I know how quickly you can get on the move again…

So we just have to take it one day at a time and be grateful for the well time, and deal with the not so well time. I guess that’s what we’ve tried to do the whole way on this journey. Perhaps the end is becoming gradually more visible on the horizon. However there is still so much to live for and difficult decision making awaits over the forthcoming weeks. For now though I’m going to try and ignore you as rude as that sounds. I’ve only just got back to work and all I want right now is a few more weeks of doing the job I love… I am determined you are not going to take that away from me.

Best wishes,

K

The things I love about life…

Serious illness has forced me to think hard about how I spend my remaining time on this planet and what I really enjoy about life. 

This is my list. What would you put on yours?

Christopher

My family & friends

Being a doctor 

Teaching 

Lazy Sunday mornings with no alarm clocks

Cuddles with my nephews & niece

My flute

Baking

Cherry blossom

British asparagus

Podding peas in my parents’ garden

Strawberries and cream

Daffodils

Crunching autumn leaves

Band practice

Exploring new places

Going out for dinner

Sunday roasts

Champagne

Willow trees

California

Embroidery 

Clean bed linen

Spa days

My kitchen

Sunflowers

Candles

Fundraising

Swimming

Afternoon tea

Dear Cancer Part 5

Dear Cancer,

I should wish you a merry Christmas and best wishes for the festive season. But as you’ve recently decided to wake from your slumber and cause no end of disruption to my life, I’m not sure I can find it within myself to wish you well.

I already knew what the images would show as I assumed the position, lying down with my arms above my head on the scan table, and felt that familiar warmness rushing through my body as the contrast was injected. The symptoms of abdominal distension with colicky pain and the distinctive fatigue that never resolves with sleep are such objective measures of your progression, I hardly needed the scan’s different shades of grey to tell me you were on the move.

What is it with you? Could you not face seeing me happy and contented professionally? I know you; you thought you’d wait until I’d settled into my new job then make your move; striking just before Christmas and forcing me to keep it from my family to avoid ruining everyone’s fun. I never thought I’d be able to be a Consultant. My Acting Up job is wonderful, immensely challenging but so fulfilling. It’s all I’ve ever wanted to do. And you’re going to steal it; seizing all my professional dreams and dumping them firmly in the bin.

And now I am faced with the arduous task of having to break the news of you to everyone. The pain etched in my poor Dad’s eyes as he struggled to hold back the tears was almost unbearably painful to watch. The break in my Mother-in-law’s voice as I imparted the terrible truth over the phone made my tears flow uncontrollably but silently.

Last time we were in correspondence I told you I had some things to do that you were not going to get in the way of. Well you I’m pleased to say you didn’t; I’ve cuddled my brand new niece many times and had the pleasure hearing my youngest nephew call me “Aunty Kate”; I’ve jumped out of a plane from 10,000 ft; I’ve somehow acquired two Fellowships; I’ve been taught how to make brioche by the wonderful Michel Rous Jr; we’ve continued to work hard with the fundraising for the YCC; I’ve spearheaded a campaign to improve patient experience across the world which has received so much positive recognition. Considering I should be dead by now it has been quite a year…

As is tradition I will conclude by wishing you a happy New Year. I am about to confront some of the most challenging decision making I have had to on this incredibly tough journey. I’m not sure how I will. Do I give the poisoning another shot? Or do I bow out gracefully now? Will treatment have an outcome that we will be satisfied with? How bearable will the toxicities be? Nobody can answer these questions for me and to coin one of my favourite phrases “no one has an accurate crystal ball”. 2015 is likely to be the year you finally get the better of me, but at least I can look back on a life well lived with a true purpose. I’m really scared so please be kind in the way that you decide to take my life.

Kind regards,

K x

Charlie

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. I’m not bitter about this but I am sad; really sad. I can’t change it. I can’t erase that sorrow and have to carry the burden of it around everywhere I go. The cancer stole most of my fertility as it grew inside and destroyed my ovaries; the intensive chemotherapy finished off any hopes that we would ever have children.

I am at the age where I am surrounded by babies and pregnancy. My friends are all starting to settle down and start their own families. And I have to try so hard to be outwardly happy about this and share in the excitement of those closest to me. But inside I’m crying. I’m grieving for a life that will never be.

It sounds so utterly selfish but these feelings are sometimes so overwhelming I avoid children because I’m scared I will be unable to maintain my public composure. Sometimes I struggle to hold back the tears as I play with my nephews or cuddle my brand new niece.

So not only am I a menopausal woman at the age of 33 but the cancer and the treatment has also pilfered much of my sexuality. I don’t ever feel sexy these days. I have major body image issues. I find it hard to let Chris near me. My body has become this ‘thing’ that gets examined, scanned and poisoned; examined, scanned and poisoned. It’s almost like it’s no longer part of me. It’s scarred and disfigured. No matter how pretty the dress is I don’t feel pretty anymore.

Sex is not something they talk about when you are counselled for cancer treatment other than ‘don’t do it and make sure you don’t get pregnant’. My sexual identity seemed to slip gradually away during the early days after diagnosis and now it’s gone. I guess my hormonal profile isn’t helping the situation either.

In some ways I’m very grateful we didn’t have children when I see the pain that is caused by a parent dying from cancer. At least that will not happen to Chris and he will be able to concentrate on his own grief. But just because I’m dying of cancer I’m still a woman, I still have those maternal desires that most women have.

I would have liked to have met Charlie; to have held him; to have fed him; to have played with him; to have seen him grow up….