Today is a special day.
Well I believe that all days are special, but today is particularly so.
Today is the four year anniversary of me hearing the words “you have cancer”. And not just any cancer. Stage four, terminal, incurable and inoperable non genetic high grade serous ovarian cancer. When we are talking about the shittiest types of cancer to get at age 30, or any age for that matter, this one would be very near the top of the list!
When I was diagnosed I was told that I was terminal. That there was a possibility that I wouldn’t survive a year and that, if I did, the statistics said that I had a 17% chance of making it to 5 years. “What about after that?” I’d asked at the time. “There are no statistics beyond 5 years.” I’d been told.
This puts my statistical odds of surviving the next year at just 17%…less really if we take into account my current health situation (more on this and my latest scan results later in this post…)
And yet here I am. Very much alive, albeit suffering physically and emotionally in the wake of recent bad scan results but I certainly don’t feel like I am about to die anytime soon.
In my favourite ‘cancer book’ and the one I most actively recommend (aside from the one I wrote of course!) “Radical Remissions” by Dr Kelly Turner, she writes that a Radical Remission is any cancer remission that is statistically unexpected…and occurs whenever:
- a person’s cancer goes away without using any conventional medicine; or
- a cancer patient tries conventional medicine, but the cancer does not go into remission, so he or she switches to alternative methods of healing, which do lead to a remission; or
- a cancer patient uses conventional medicine and alternative healing methods at the same time in order to outlive a statistically dire prognosis (i.e., cancer with less than 20 percent chance of five-year survival).
I am sure you will not be surprised to learn that my aim after reading this book following my diagnosis in 2016 (in part due to my background as a PhD researcher and in part due to my stubbornness and joy of proving statistics wrong), has always been to be a radical remission.
So I find myself musing over the fact that if I survive the next year, the next 365 precious days, then I will have achieved my aim. I will be “a cancer patient [who] uses conventional medicine and alternative healing methods at the same time in order to outlive a statistically dire prognosis (i.e., cancer with less than 20 percent chance of five-year survival).” EDIT: my brother in law has just reminded me it’s a leap year so it’s 366 days…for fucks sake…365 felt hard enough! Haha!
That feels pretty monumental and, I may be stretching my imagination a little far, but it also feels entirely possible – despite my current health situation. I mean it’s just 365 days right? How hard can it be? (I am only jesting in part here). So that’s my aim moving forward. At the very least, I want to survive the next 366 days (and more please!) and play a part in changing the statistics around late stage cancer.
Thinking about this as a possibility and reflecting on everything that’s happened in the past four years I can’t help but have my mind blown.
Four years of living with terminal cancer has completely changed me as a person. Not only has my life changed beyond recognition but I have experience and achieved so much more than my wildest dreams could ever have imagined. I have published two books, won countless awards, trained as yoga teacher and launched may own yoga business, trained as a shaman (graduating in March this year), raised tens of thousands of pounds for charity, spoken at Westminster, received personal letters from both the Prime Minister (at the time Teresa May) and Prince Charles thanking me for my work raising awareness of ovarian cancer, been in two BBC documentaries, spoken at many amazing events, been in so many newspaper articles I’ve lost count, been interviewed by some incredible people and interviewed some even more incredible people myself too and so much more amazing crazy shit!
But it isn’t these aspects of my story over the past four years that are what matters most to me. No, when I reflect on the past four years I find myself realising how incredibly lucky I am to have LIVED those four years. I have seen my sister bring her forth child into the world and watched him grow into a crazy 3 year old, I have watched my niece flourish from a chatty 3 year old into an inquisitive 7 year old, I have watched her start school and seen her thrive as she questions the world around her, I have watched one of my nephews change from a young 6 year old to an incredible 10 year old with a passion for animals met only by Sir David Attenborough himself (he also shares my passion for food which is pretty cool!), I have watched my eldest nephew mature into a young man of 12, watching him start high school, having been only 8 when I was first diagnosed. It is because of him that I do my random acts of kindness and I have had the pleasure of sharing these stories with him over the past few years and watching as they make his heart and mind shine. I have watched my sister and her husband raise these incredible children that I love with all of my heart and it has been one of the greatest gifts of these past four years. To imagine I could have missed even a second of what I have had the privilege of witnessing is unbearable. I feel immense gratitude not only to have been here but also for the insight cancer gave me so that I have actually appreciated how precious this honour has been and continues to be!
I have watched my other sister and her boyfriend develop their relationship to become engaged and then married. I never thought I’d make their wedding day but I did and it was one of my happiest moments in the past four years – witnessing the love and happiness between them. Tomorrow, if you can believe it, is their one year wedding anniversary and I’m still here watching their relationship and love grow.
I have watched my own marriage change and grow and felt the deep connection of love between myself and Ewan flourish as we became not just better partners but also best friends. I can’t imagine anyone I would rather have by my side as I go through this – not just through the bad times but also through the good times too! What an incredible man I have been blessed with and I am so grateful that I am able to see and recognise that!
There have been hard times too of course, I have lost friends, some to cancer and some to the changes that have taken place within my heart and soul. When cancer touches us, in particular late stage cancer, it can’t help but change us at our core and some relationships have not survived the change. I used to feel sad about this but I no longer do. Instead I simply send them love and light whenever I think about them and know that we are too different now. Losing friends to cancer, however, is always hard. I’ve lost too many now. It’s the hardest part of my cancer story but I wouldn’t change it. It has been my deep honour to know and connect with and love those that I have lost. Even in death it is those that I have lost that continue to be my greatest teachers and my greatest motivators to get myself off my arse and live another day, if not for me, then for them because they are no longer able to.
I have, of course, gained new friends too. Some so incredible that I can’t believe they haven’t been in my life for all of my days. There is a difference in the connections I chose to make now. I don’t want superficial, drama based relationships. If you are in my life and I’m going to spend time with you then I want a deep soul connection, I want conversations that move me, I want to learn and grow with you BUT I also want to laugh until my belly hurts and tears stream uncontrollably down my face. It also ALWAYS helps if you swear as much as I do or, at the very least, have a sick and twisted and dark sense of humour. I no longer hold back my personality or play small in relationships and the result has been building some of the most beautiful – no THE most beautiful – connections of my whole life.
I have also learnt to love and accept myself and to be happy with who I am. I continue to learn on a daily basis. Sometimes I fuck up. Sometimes I get angry with someone when I shouldn’t, sometimes I say things I regret but, on the whole, I am learning to accept myself. This is all through the story of my cancer. Through the ‘journey’ (for want of a better word) that it has taken me on.
In my four years with cancer I have also had so many medical interventions to keep me alive and I have supported these with so much deep inner work, yoga, diet changes, supplements, therapy, energy healing, breath work, meditation and more. Our bodies, I believe, need a whole system approach to healing.
In terms of ‘medical interventions’ I have had chemo (carbo/taxol) alongside Avastin for 6 doses Feb-July 2016 alongside a major operation to remove…are you ready for the list you undoubtably have read a million times in my posts before…my womb, cervix, fallopian tubes, ovaries, spleen, appendix, omentum, part of my bowel (I have a colostomy bag), part of my diaphragm, part of my pancreas, part of my liver and multiple abdominal lymph nodes…and breathe! This was all despite being told that I was ‘inoperable’ at the start. A reminder that everything can change…even the options available to you.
I had a period of 18 months where my cancer was in remission July 2016 – December 2017 where I was just on Avastin every three weeks for maintenance. This just feels insane to think about now. I remember how so many people thought I was ‘cured’ and I was just silently terrified about when and where it would come back! Remission, for me, felt scarier in many ways than actually having cancer! Looking back I wish I’d enjoyed that time more. I wish I’d celebrated. If I could go back to ‘past Fi’ I would tell her to throw a massive party and live a little. But back then I was still taking everything too seriously!
And then in December 2017 it did come back, in my right lung. My lung collapsed due to 2.5 litres of cancerous fluid. Despite my fear for 18 months, nothing had prepared me for that news! Going against the grain I turned down conventional treatment – namely chemo. This worked for a few months and by April 2018 by lungs were clear BUT by then I had multiple tumours in my abdomen and so I used GoFundMe to raise money for private maintenance treatment. Thank you again to everyone who helped during this time, since and now. You literally helped to save my life.
Then in September 2018, after weeks of vomiting, I had to stop this treatment and faced the decision of more surgery and chemo or “risking an immunotherapy trial” that no one else in the UK was on. I took the risk and it paid off. Within three months all my abdominal tumours had resolved. HOWEVER, four months later in January 2019 we discovered a tumour in my right lung. Despite this we made the decision to keep me on the trial and I am so glad we did.
Now, a whole year later (can you believe I’ve been living with lung tumours for a whole year?? I bloody can’t!) I am in a different situation again. We had to stop the trial on New Year’s Eve because I now have four tumours in my right lung and a few around my heart. I still have nothing showing in my abdomen but I do have a lot of abdominal pains and frequent vomiting and, in the last month, I’ve lost a whole stone in weight. I only weigh about 50kg now which is pretty tiny even when you are 5’5″! (Regular updates are on Facebook incase you’ve missed any and this is all a bit of a shock for you – sorry).
So now on the eve of my fifth year, this monumental year that means more to me than all of the others (because I am bloody DETERMINED to become a radical remission if I do nothing else!) I am facing new and challenging decisions. My oncologist wants me back on chemotherapy. I am not keen but I am also aware that it has been a bloody miracle that I have been off chemo for 3.5 years!! I mean seriously…let’s take a moment to appreciate how epic that is when most ovarian cancer patients are on it every 6-12 months!
I want it all just to go away. I want a magic wand and a break from this shit but, to date, unfortunately, no magic wand has appeared and instead I am left with the deep frustration and annoyance that when you have stage four cancer it is never ‘over’, there is no rest or respite, instead you are constantly doing all that you can to keep the disease at bay just enough to keep you alive and with minimal (ideally no) side affects. This is the hardest part of the past four years. Not the surgery or the chemo or the trial or the scans or the highs and lows of results but just the constant role of being a ‘cancer patient’, not just even in the hospital but in every decision that I make…the stress I have in my life, how I spend my time, my diet, my energy levels and so on and so on.
As I said in my book ‘How Long Have I Got?’…
“This is the reality of living with late stage cancer. There is no ‘recovery’. There is no ‘end of treatment’. There is only getting through one day after another and hoping that the side affects aren’t too bad while navigating the loss of those you’ve met since your diagnosis who haven’t made it.”
But would I change any of it? Would I give any of it up and revert back to how life was before cancer, to how I was before cancer? No. Never. Not even in the face of new challenges and not even how I am feeling now, after bad scan results and after four emergency admissions in three weeks. I still wouldn’t change any of it because it has changed me to my core in a way that nothing else would.
I appreciate life and the gift it truly is now. Nothing else would have made this change for me. I know that. As hard as it is, I know that I needed this lesson, this path, to enable me to show up in the world and in my life as I do. This is my soul’s purpose, I know that. Even though it is hard – increasingly so of late.
So, although I’ve never done it before, tonight I will be celebrating the four year anniversary of my cancer diagnosis (well not my diagnosis but rather the fact that I am still alive). I literally messaged friends with 48 hours notice and asked them if they were free to join me and do you know what, because my pals are bloody amazing, they either said ‘fuck yeah’ or, where they were unable to due to kiddies, made plans for a separate celebration…this is the kinda people I want in my life!
So tonight, with 10 pals I will be raising a glass (of water because I haven’t drunk alcohol since I was diagnosed!) to life, to love, to laughter and to those I have lost. Above all though, I will be welcoming in the first day of my fifth year with love and hope in my heart for what is to come because I know, I truly know, that I am not done for yet. And although I may have to take the chemo I don’t want, I am breathing into the combined process of conventional and ‘alternative’ methods of healing to support me through this next step. I believe anything is possible. I’ve seen it. I’ve felt it. I know it to be true.
But, for now, I will start with getting through today. And then tomorrow I will deal with tomorrow. And I will do the same thing for the next 366 days (and beyond). And I will become that radical remission I long to be because I have never failed to achieve anything I’ve set my mind to. Ever!
I invite you to walk with me my lovelies. It’s going to be an adventure.
With love and gratitude for your unwavering love and support always, Fi xx
Ps. If you would like to support my healing endeavours you can donate here.
Pps. I have had to cease working at this time as I focus on my healing and so I’ve lost my income. If you would like to support my ‘passive income’ you can purchase my books on Amazon.
I am working, when I am able to, on a third book for you all my lovelies which I am very excited about and I hope to pitch to Hay House…as you all know…my dream is to become a Hay House author…and to be interviewed by Oprah…and Ellen….and to go to a Royal Garden Party….and do a TED talk….but, for now, let’s focus on goal number one…surviving and thriving for at least the next 365 days.
I love you xx