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.
Great writing Kate – your strength and courage come over so powerfully. Biggest hugs to you (and the big man). Thank you for being in our lives xxx
What Paul said, sending much love x
I went through a similar , although much less intense process when our son had reached the end of the treatment options for nephrotic syndrome nearly 20 years ago having been through high dose steroids for years( stopped working) cyclophosphamide ( poisoned his marrow) cyclosporine ( stopped working) after much research on the subject I suggested we try levamisole – his consultant agree as there had been one or two reports of it working and there was nothing to loose. It transformed his life and ours. He went on to become a record breaking athlete. Weird drugs sometimes work as the news only this week will attest to for Her2 breast cancer. There is a lot of life in you yet- and my money is on you any day!
You are a blessing, an inspiration, and one of the most courageous people I’ve ever not met! Wishing you all the very best, and thanking you for all that you are.
You are definitely a fighter and I’m sure you’ll do your best to fight it. We are all thinking of you and sending lots of hugs. I have been lucky to have cancer twice and beat it twice..just send you my best.
Thank you for sharing, I am sure I will not be the only one who is metaphorically holding your hand.
You have helped me so much, Kate. I found you by looking on the Internet for things that supported my own view that I didn’t want to “Fight” something that was part of me. Your editorial in the newspaper was the first confirmation I got. That has meant a lot to me. I’m twice your age, with ovarian cancer, but you are a role model to me.
You a such an inspiration Kate and today I experienced the full ‘Hello my name is ‘ campaign in action at my local hospital. Every nurse introduced themselves, the only exception during the day was the consultant whom I had never met before , in fact I never even saw his face – well he was busy with my rear end, so for all I know it could have been a chimpanzee doing the procedure with a banana!!
What you have achieved in your personal and professional life is truly awe inspiring and you should know that it truly makes a difference to every patient going in to hospital. You should be so proud. I hope you find a path going forwards that helps and I send you hugs and prayers x
You have achieved so much Kate, not just for yourself but for countless others too. I believe that you will do more and in this age of targeted drug therapies that somewhere out there is the one that will rid you of this cancer. Sending love and light your way. Rose.
We’ve never met outside of twitter but I am always blown away by your courage, your resilience, and your upbeat attitude to life in spite of what you are going through. You have so much to be proud of, and you should be proud most of all for who you are. You are a huge inspiration and I truly hope that you are able to fight this as long as is comfortable and possible for you to do so. Much love to you Kate!
Your writing, your strength, your humour all astound me. Deep down, when we read these posts, I think we’re all thinking, “how would I cope…”. For one so young I don’t know how you do it. I’m just so glad for you that you have love and support in your life.
Your courage never ceases to amaze me. You truly are a inspiration .
Thinking of you and your husband .x
Kate: I found your blog while looking for something on loneliness to read as I complete chemo. I find your courage, truth and humour inspiring! I am a geriatric and hospice social worker, and hope that this experience enlightens my practice with my clients. The experience you had in the beginning with the unknown doctor is not unfamiliar to me. My hope is that walking through this journey prevents me from unknowingly leaving scars. I know how sensitive I am now to “the delivery of the message”.
Kate, your attitude is inspiring. Today I went across to my neighbour who has had a recurrence of her original stage 3 terminal cancer after 12 years. She can’t have strong chemo so her treatment options are limited. Reading all your thoughts and words and feelings over the years meant I was able to offer support if needed with confidence. I’ve made a genuine offer, I think it was taken as such. Your honesty and compassionate approach has extended beyond health care and made difficult but supportive conversations possible. Thank you so very much.
I’ve followed you from the beginning of your (public) journey and as with so many other followers have found your honesty and courage to be inspirational. I also work as a doctor and have a (limited) appreciation of how hard it is to confront one’s own mortality when faced daily with others’ illnesses and demise. Whatever happens in the next steps please remember that you touch a huge number of lives both professionally and personally. I send love and support to you and your loved ones.
You are an admirable person and I wish you the best. Sending all my love.
Have faith dear and keep on figthing. You really are courageous and an inspiration to all of us! Lots of love and hugs
I’m so sorry to read this update regarding your latest scan results – sending virtual hugs and praying for a positive outcome from treatment ❤️
Hey Kate I’m thinking what can I say but I think you’ve said it all but I would like to say reading ur past blogs and listening to ur past talks helped me with my own cancer journey bless u and my name is opened my eyes a thousand hugs and kisses to u
You have done what we all would like to do and have “Made a Difference.” “Hello my name is…” will be your memorial, but not too soon we hope. Thank you in advance for all you are doing, have done and will do. Love from Kathleen.
Great insight into how an individual has to deal with cancer progressing & the emotional toll this brings- thank you for continuing to share this painful but inspiring, compassionate story. My thoughts are with you & family.
Kate you are and will always be an inspiration to millions of people and myself, we are all fighting this with you and we won’t stop.bless you and Chris also an amazing person xxx
Hello, I have been reading your blog for a couple of years. I saw the video you and your husband did about planning your death and admired your “hello my name is” campaign.
So you were one of the first people I thought of when we were told a year ago that my husband had grade 4 stage 4 incurable cancer. I told him about how much you had dealt with and how you were still working where you could and achieving so much and it helped us think that we could “live with” cancer for a long time and that incurable didn’t have to mean an immediate death sentence.
As we went through hospital stays and treatment and clinic visits we always noticed who was wearing the bright yellow badges and who wasn’t and who took the time to introduce themselves and who didn’t.
When chemo was the only treatment option I told him how it had done some good for you and helped you live better for longer and that helped us to focus on what was possible.
My husband died last week almost a year to the day after diagnosis. We didn’t have half as long as we would have hoped and it was a long and difficult year for him. But I wanted you to know that you helped us come to terms with his diagnosis, you gave us hope, you made hospital staff easier to identify and a lot of them more conscious of introducing themselves to us, and you helped us discuss his death and his wishes.
Whilst you have had awful news and more challenges ahead I wanted to tell you that I am
thinking of you and wish you well and I wanted to tell you that you have had a direct positive impact on my life and my husbands life. And while I am sure that isn’t much comfort to you right now, please know that your efforts to raise awareness and your openness and honesty has been so helpful to me and I am sure to so many others too. I hope you are rightfully proud of what you have achieved so far and that you know how much you have helped other people dealing with similar issues.
Sending you and your husband lots of love,
Sorry to hear the nemesis is back poison him some more if it’s the right thing for you. Hugs helen
I started reading your blog a couple of years ago and I watched your video on planning for death after seeing a link on Twitter.
A year ago my husband was diagnosed with grade 4 stage 4 (incurable) cancer. I remembered your blog and Twitter feed and it gave us hope that he could “live with” cancer well for a prolonged period of time and it helped reassure us as we started to understand what was wrong and what he needed to go through. I told him about how you were living life and working and it gave us hope.
Then as he started treatment and loads of clinic and scan appointments we noticed who was (and who wasn’t) embracing “hello my name is” with both their badges and their approach and again we spoke of you and what a good idea it was (particularly when the font on the badge is big enough to read!!)
My husband passed away 2 weeks ago, almost a year to the day he was diagnosed. I wanted you to know how much you have helped us personally by sharing your story and showing us that you can “live” with cancer and make good memories and have good times. You also helped us talk about dying and living after the love of your life has died. And “hello my name is” was comforting to us; when we saw the yellow badge we felt like we were with someone who cared about communicating with us and we quietly thanked you for pushing on with such a brilliant and important lesson for healthcare providers.
So as you face some more challenges, I wanted you to know that you have directly helped other people facing incurable cancer by living your life the way you have and sharing your story with people. I used to tell my husband what you were up to to keep our hopes going that it was always possible to bounce back, recover a bit more and get back some of your normality after awful treatments, when we were having bad days.
I hope it helps in some small way to know what a difference you have made in the lives of people you have never met and how you helped inspire and reassure us to keep going.
Thinking of you and sending love to you and your husband xxx
Thank you Kate for your great courage and deep insight, which helps me and so many people touched by cancer. You are a wise, wise woman and I think of you everyday.
If anyone deserves a miraculous, durable response, you do. Sending cyberhugs.
Wishing you the best of luck with the “gentler” treatment, and the strength and courage to keep on keeping on. I also the that a milkshake or other treat is in order.
Hello Kate I’m Nikki, Ive just finished reading your books and am so happy that I have the chance to write to you personally. Firstly I admire your strength, my sister Emma passed at 26 two years ago I can empathize fully on many levels your experiences. She had a tattoo ” one life, live it” which I live by. Your final summary of life is too short to be mad and have regrets I could not agree more and this really touched me. I’m from Ossett ( near leeds) originally but have lived abroad for several years. A dream led me to your book and from your book I’ve found inspiration and hope. I feel words are just not enough in this situation, however if you will accept my thoughts of love are with you. Finally ( as I’m now crying) I wish you so much peace, peace in your heart that you were connected enough to yourself to make the right choices for you. Peace knowing how amazing you are and finally peace that your family will be there with you in body, mind, heart and soul forever x sending love and strength Nikki x
sending massive cyber hugs to you Katie.
you are amazing! keep strong and I know its harder for you to read then to do but please find it somehow. my son is only 3 and recently been cleared from Neuroblastoma childhood cancer. we are sending you all our loves and strength xxx
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I know reading your twitter, you feel defeated Kate, I know you don’t need advice on have you tried eating more this that and the other; but as a treatment schedule I do wish to stick my nose in. I have had cancer, 20 years ago when I was in college, I am now a cancer researcher, a medicinal chemist. I think you could look at a VDA / conventional chemotherapeutic regime i.e. combretastatin A4 phosphate and carboplatin at a reduced but more regular dosage. However combretastatin A4 phosphate is not approved; it is given as an acute dose, followed by low dose but regular chemo i.e metronomic therapy.The expectation would be to control the cancer for several years and live with it rather than ‘cure it’. You are very young and can probably take the negative effects. Maybe there is a trial you can find or a way to procure the drug being a doctor. I don’t know, I only want to help and wish the best for you. i faced my own mortality at a young age and I am not that old yet, that I would give up on a single chance.
Anyway, that is the best my research has to offer and yes if I have a reoccurrence, I would try this drug and schedule myself.
Words seem pretty inadequate right now as I read your latest tweets. I don’t know what to say, but I do want to reach out and tell you how much of a difference you’ve made, by your openness and your campaign. You will be remembered with immense gratitude by so many people, including those of us who have been dealing with cancer ourselves.
I would love you to stay writing, baking,making music, doing all the things you love. I appreciate that may not be possible. Be gentle on yourself. You have been the most massive inspiration to so many people, and you are loved and appreciated more than you can imagine.
Much love and hugs,
You information has helped me so much, Kate. I found you by searching online for things that supported my own view that I didn’t want to “Fight” something that was part of me. Yourpublication in the newspaper was the first confirmation I got. That has meant a lot to me. I’m twice your age, with ovarian cancer, but you are a role model to me.
You are amazing. I highly appreciate your hard work for creating this inspirational post. I can’t wait to dig deep you have shared here
Thanks for sharing. You are so inspiration