Dear Kate – Love Chris xx 23/07/18

Dear Kate,

Happy 13th wedding anniversary my beautiful angel up in heaven. I do hope you are celebrating with family and friends and remembering our amazing times together – so, so many to choose from.

A gust of wind, a feather on my pillow, a butterfly passing by, a robin at the window etc – all these little things remind me that you are certainly still all around me and they make me smile… they also make me sad that I can’t hold you close, that we can’t chat, that I can’t feel your breath on my skin or have those nights in like we loved to always have.

I sometimes impress myself with my strength over the last few months but then I realise that I owe this to you. You are my inspiration every day when I get out of bed and everything I do I aim to make you proud. You know me better than anyone else in the world.

People often say that it gets easier in time and that they understand what I am going through. This is not true – very few people understand our situation – our amazing relationship, our friendship, our togetherness and our wonderful and special times across our years together. I haven’t come across anyone who truly understands what I am going through and I doubt I ever will.

It’s been 2 years now since I held your hand for the last time and kissed your beautiful face….. I often think of that day and either smile for the good times we had or cry as you are no longer with me.

Since my letter to you last year I’ve been extremely busy taking the campaign on a global tour that we spoke about before you died.. It’s taken me to various countries across the world including Australia, New Zealand, USA, Spain to name but a few. I have delivered over 200 talks since Sept 2017 and my diary is starting to fill up to mid-2019. I have also written articles for magazines and chapters for books. I know you will be impressed and proud.

We celebrated the 70th birthday of our beloved NHS this year and we both received accolades on the back of this. You were named as the third most influential person across the NHS in its 70 years and I received an award from the PM (who also posed for a #hellomynameis pic) which I collected a couple of weeks ago and thanked her for the letter she sent to you just before you died.

The campaign we started is going from strength to strength and we operate now in over 20 countries and it continues to make a difference to patients and beyond across the world.

Family wise you are now an Aunty again as Lucy was born just a few months ago – such a cutie!! All the others are doing well and I am as involved as time allows and love the time I spend with them all… you were an amazing Aunty to them all and we will ensure your memory always remains. I often wonder how my life would be now if we had of had children. You would have been an amazing Mum (to Charlie) and I would have so loved to have been a family with you and our children but like we often said we had to play the cards in life we had been dealt.

We scattered your final ashes on your birthday last year across Wessenden moor as requested my beautiful one. It was a lovely occasion with your folks and brother with me. We all had time to reflect and chatted about old times before scattering you at your childhood memory place alongside some roses we threw in the stream. This was a very moving scene as it was almost a final goodbye given they were your final ashes… although I kept a small amount at home for myself…. you are now in our 3 special places and always in my heart.

I have so many amazing people in my life and I speak to hundreds of people each week with the campaign either virtually or in person but I still feel lonely my darling without you by my side. I continue to proudly wear my wedding ring as I am proud to be your husband and always will be irrespective of what the future holds for me. I know we talked about this at length gorgeous.

You will be delighted to hear that the world premiere of our play occurred a few months ago also and this is continuing to tour the uk sharing our story in a different format and raising money for St Gemmas. Our fundraising is up to £370,000 now and target is £500,000 by end of year…. we will achieve this..

A lot of my time is now spent presenting awards named after you as you were the epitome of compassionate care in everything you did throughout your life. Organisations around the world and more locally use your name as part of annual prestigious awards which are won by such amazing individuals and teams who i have the honour of meeting.

Your books have now sold over 30,000 copies across the world and my book (yes darling – my book!!) continues to be written and I aim to have this finished by the end of the year.

Over the next few weeks i have some big decisions to make about the next chapter – for me, for the campaign, for global healthcare but your legacy and our campaign will continue for many generations to come – you have my word darling.

Whatever decisions I make and whichever pathway my life takes you will always be my inspiration and I know you are to many thousands across the world. Let’s see what happens over the next 12 months my darling.

Forever I am yours my beautiful angel Kate – thank you for choosing to spend your life with me… I hope I make you proud.

Love you always

Chris x

Dear Kate – Love from Chris xx

Dear Kate

Happy 12^th Wedding Anniversary my beautiful Angel up in heaven.  I hope you are celebrating with family and friends that I am sure you have made acquaintances with over the last 12 months – how can anyone resist your beautiful and welcoming smile.

Its been a year now since I held your hand for the last time, since I kissed your beautiful face, since we spoke for the last time, since I saw your gorgeous smile and since I had my soul mate with me in body.  You are now my soul mate in heaven and I know one day we will meet again and and I can hold you close once more.

The last year has panned out pretty much as we often spoke about.  I’ve moved house and I think you would really love my new pad – you are very much present in it darling but its not a shrine to you as I know you didn’t want as we laughed about many times.  I’ve done plenty of travelling across the world and taken you to the places you wanted to be scattered – although Shetland was a bit breezy like when we visited!!  I scattered you on my 40^th birthday (thank you for the lovely card beautiful) at tombolo beach in Shetland.

Some days it feels like you passed away yesterday and others it feels like many years ago gorgeous.  I (along with others) are certainly keeping your name alive through various awards named after you (I’m sure you have been watching me presenting them) and also the continued success and growth of #hellomynameis – your amazing legacy that inspires thousands globally each day.  Every time I present an award or give a keynote I sense your presence with me.  Our wedding rings are now combined as one that I proudly wear.

You will be pleased to hear that I am doing the global and uk tour that we talked about on many occasions with me jetting off to Australasia in a few weeks to start it.  I remember us fondly planning our holiday to Oz for when you became a consultant and pre kids but then cancer came and changed our life plan.

The nephews and niece are all doing great and are growing quickly.  I often think how amazing an Aunty you were and that you would have made such an amazing Mum to our children – although you often said living with me was like having a child!!

I often get asked about what life would have been like if you hadn’t died but my response (as we often talked about) is always that I am truly thankful for the 16 years we had physically together and that you shouldn’t live thinking about what could have been, more so be thankful for what was – we certainly lived life to the full gorgeous!  Not many people in the world will ever ever have what we had and I truly know that my life is a trillion times better because I shared your life with you and you made me such a better person that I will now take forward in my life.

You probably want to know how I am darling?  As you probably have guessed I am keeping busy and surrounding myself with friends and family – probably more now than I have ever had but I am probably the loneliest I have ever been and I often find myself just sitting and talking to a photo of you with tears streaming down my cheeks then I have visions of you saying ‘jump up’ and I sort myself out.

I recently re-read some of your blogs and one part you wrote said I would be ok for the first 6 months as I would be busy then it would hit me – you (as always) were correct gorgeous.  I just want to hold you, to snuggle with you, to talk to you, to have our ‘nights in’ etc

You will love to know that your story is going to be made into a play to help others and raise money for St Gemmas, I am writing my book to help others, the global tour commences soon, more awards to present, travelling across the globe ensuring your legacy remains (which it will).

You will always be part of me (especially the butterfly tattoo I had done on my leg like yours) my beautiful and inspiring wife.

Forever I am yours my beautiful Angel Kate

Chris

When I was a lass…

I know there is always a risk of viewing the past with rose tinted glasses but I genuinely believe my experience of training in Medicine 11 years ago was very different to how we treat our young doctors these days.

My first Foundation Year 1 post was on a general medical ward with around 30 beds. There were 2 consultants, 2 registrars, 2 SHOs and 2 FY1s on the firm. Yes we still called it a firm back then. On any particular weekday you could expect 1 registrar, 1 SHO and 1 FY1 to be around. There were enough of us to do other activities – we had time to go to clinic, to do audit work, to start studying for Royal College exams and to get involved in teaching.

We did all our on calls with one of the registrars from the firm. I was paired with Hermione. She was a proper superstar and if I’m honest was probably one of my main inspirations for pursuing general medical training. She was like a swan. Having now been a medical registrar myself I’m sure her legs were kicking furiously under the water, but she was so serenely calm on the surface. She was also an exceptional teacher and taught me how to apply my knowledge to real clinical situations. I always felt supported and we developed a real sense of team during some extremely harrowing experiences. 
After our night shifts we would present all the patients we had clerked to the on call consultant. This would give time for invaluable feedback from a variety of seniors on how we had managed our patients.

I’ll always remember getting myself into some trouble with a terminally ill patient on the respiratory ward. I won’t go into details here but my Consultant was so supportive. He couldn’t have been more so. 

Towards the end of our rotation our boss invited us all to his house, together with our partners, for dinner. He had checked the rota to find a date when none of us were on call. We were all so touched by the thoughtful invitation and the effort that both he and his wife put into the evening. 

What have I described? Adequate staffing, time to train, strong team culture, meaningful feedback and excellent pastoral support. All these factors spurred me on to pursue a career in medicine. 

I fear that in 10 years we have destroyed all that for our junior doctors. Very rarely do they ever get to present the patients they have clerked on the AMU to a consultant. They are never on call with the same colleagues. They are stretched so thinly on the wards during normal working days that all the ‘extra’ stuff has been pushed in their own time. 

Yes things have had to change given increased demand on health services, but I think if we do not look to the recent past and change how we treat our trainee doctors then we are never going to inspire them, value them, encourage them and build them into the senior doctors of the future. 

Dear Cancer part 7

Dear Cancer,

I don’t really need to start this letter with the conventional “how are you?” because sadly I know exactly how you are. On Friday I sat in DtM’s clinic room and scanned the report for myself telling me all about your current state of health. And it did not make for pleasant reading. Not only were you happy to grow all your original tumours but somehow you’ve also wheedled your way back into my liver, and even taken up a new residence in my lung.

I guess the worst reality of all this is accepting that my bone marrow just cannot take the intensive poisoning we have used to suppress and keep you under control in the past. This is a very hard pill to swallow. What that means is this is probably the beginning of the end for our relationship. The options now lie between gentler chemotherapy, which is unlikely to have such sustained efficacy or enter the world of experimental medicine by trying the weirder drugs.

I’ve learned to become wiser on this whole journey. As a newly diagnosed 29 year old girl I thought I knew exactly how I wanted things to be with regards to my treatment. As a hardened and experienced 34 year old cancer patient I now know I have to face each decision at a time and cannot predict how I’m going to react emotionally to any of this. It feels like I’m on this roundabout that is gradually spinning faster and faster with no opportunity to jump off. 

I was proud of myself for reaching the end of training and achieving my CCT. I am proud of myself for holding down a part-time Consultant role in the context of your existence in our lives. I am proud of our fundraising. I am proud of #hellomynameis. I am proud of Chris for reaching his current state of acceptance. Who knows what our future holds? Maybe DtM will persuade someone to give him some PD-L1 inhibitor on the sly & maybe I’ll have one of these miraculous, durable responses that puts you to sleep for a very long time. Or maybe the carboplatin will have no efficacy and I’ll be pushing up the daisies before the year is out. Nobody can answer that, but deep down inside I just don’t feel ready to stop trying yet. 

So that’s where we are. I have no doubt the coming months will be tough on the both of us, but hoping more so on you. 

Kind regards,

K

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