Five years on.

On 10th March 2025, it’ll be five years since I got diagnosed with Breast Cancer.  But how am I now?

Painting by Suzanne Bull MBE

Alt Text: A self-portrait in cartoon-style, painted in acrylics.  A pale-skinned woman is wearing brown sunglasses, a blue & yellow face mask & a blue jumper.  She has long, curly brown, copper & white hair.  She holds up a white & grey pill box.  There is a slogan painted in white capitals across the lower third of the painting.  It says “Yes I am popping pills.”  The background colour is yellow.

Before I continue with the rest of the blog, I just wanted to acknowledge that I’m posting on the COVID-19 National Day of Remembrance in the UK.  The pandemic exposed the inequalities & the injustices of this world, with the most vulnerable & poorest communities losing their families & friends.  In the UK, two thirds of deaths from COVID-19 were disabled people, which makes me very angry, & for as long as I live, I’ll be making sure that no one forgets this, or forgets our family & friends who passed.  I got diagnosed with #BreastCancer just before the UK went into #Lockdown.  I was placed in the CEV (Clinically Extremely Vulnerable) group.  My Breast Cancer surgeon, being of Asian heritage & in his 60’s, wasn’t given any PPE for his department at the beginning of the pandemic.  All this makes it even more remarkable that I’m still here to talk about #BreastCancerAndDisabledPeople

On the 10th March 2020 me, my partner Stephane, a Breast Cancer nurse & a Breast Cancer surgeon, sat in an airless room with no windows, a neon striplight, a couple of semi-comfy chairs & a box of tissues.  The surgeon said, “I’m sorry, you have Breast Cancer” & I was plunged into one of the most mind-bending experiences that I’ve ever had.

Fast-forward five years & on the 10th March 2025, I’ll be sitting at my little wooden desk in the lounge, working out the last days of my notice at the charity that I founded 25 years ago – Attitude is Everything.  In many ways, it’ll be just another day, but in so many ways, it won’t.  With each year that passes, I’m grateful to my surgeon & oncologist at Charing Cross Hospital in West London for keeping me NED (No Evidence of Disease), & my Breast Cancer nurse for keeping me sane.  

But the fifth year is hard for me because a lot of the people who were diagnosed at the same time as me will be finishing their five-year course of treatment.  I’m not finishing.  I still have another five years to go if it still continues (fingers crossed) on the same trajectory.  I’m on a longer treatment plan than most people I know & although I’m grateful that it keeps me alive, it takes a toll on my body & my mind.

I mentioned that I’m stepping away from my dream job which has become a vocation & a lifestyle over the years.  After all the business with my kidney stone towards the end of last year, & my partner getting so ill with flu, we (Stephane works with me) decided to bring our tenure at Attitude is Everything to an end.  It’s both a sad & happy time.  I’m sad because I’ve loved my job over the years.  I felt that I hadn’t quite achieved everything that I wanted to do, even though I’ve achieved so much.  But I’ve learnt that there is always lots to do & the work will always be there for someone else to pick up & take forward.  I’m happy about leaving because for the first time, I’m prioritising my health & wellbeing.  It really is a ‘first’ for me & I’m proud of myself.  I’ll still be working – I’m going to freelance instead – but it’ll be a chance for me to take work at a slower pace.  I’ve got lots of ideas of projects & people / organisations who I want to work with.  It’s like starting afresh.  In some respects, it feels a lot like when I finished the most active part of my cancer.  I was desperate to get back into living.

I’m not ready to talk about working & cancer; that’s a subject that I haven’t been able to write about with any eloquence, but it’s probably a subject that I should write about at some point in the future. 

I haven’t given myself much space in this blog to reflect over the past five years except to say that I’ve coped much better than I ever thought I would.  I went to a talk by the war correspondent Benjamin Hall who was badly injured in a missile attack whilst reporting in Ukraine at my local bowling club a couple of weeks ago.  He talked a lot about the resilience of the human mind & body that just seems to come out of nowhere, but that spurs you on to survive & move forward with your life.  I related to so many of the emotions & feelings that he spoke of.  (I’m not, of course, relating my experience to one of being terribly injured in conflict, Benjamin is an exceptionally brave man, I’m just trying to highlight the coping mechanisms that we both adopted).

I feel grateful that I’ve been able to articulate my experience.  I hope that other disabled people don’t feel alone in their diagnosis as a result of me opening my heart.  As I sit here today, writing at my desk, I’m at a good stage of my life.  I still have my flat which has been newly decorated. I’m keeping my body healthy by going to yoga, & my mind healthy by taking part in Writing For Wellbeing sessions.  I’ve continued to make art – one piece ended up on Channel 4’s Grayson’s Art Club (!) & I still make work with all the people that I first met during the Expressive Art online sessions with Maggies’ Centres West London.  I’m still going to gigs (festivals not so much as it’s too tiring for me at this current time) & I often have the pleasure of spending time with my dad, & my other brother & sister as we watch our younger brother performing in the band @EvolutionOfFisherman.  I co-authored the chapter on disability and Breast Cancer for ‘The Complete Guide to Breast Cancer’ by Dr Liz O-Riordan & Professor Trisha Greenhalgh, & I also wrote a brief piece on survival for a book put together by my friend & Breast Cancer survivor Phil Aldersson called ‘Someone’s Survival Guide’ full of stories by those living with, & beyond Breast Cancer to help their peers.  I’m modelled for Breast Cancer Now’s The Show in 2023 & made so many friends (now that was fun).  I’m lucky enough to have connected with other influencers & bloggers about Breast Cancer, the (dreaded) #Menopause – including Nancy Stordhal, India Fisher, John Dabell & Jon Chappell.

My friends have remained close, even if I don’t see them as often as I want to due to fatigue.  And me & Stephane are still together – we seem even closer now.

I might have a walking frame, I might have cut down on my long-distance driving, I might go to bed at 8.30 most nights, I might be having a nightmare of a menopause & I might be popping pills to get through the day & night, but my annual mammogram in January 2025 was clear of cancer & so was the X-ray on my left knee (yes, another #Scanxiety moment!)

Happy International Women’s Day & month to everyone.  Into 2025 I go with a calmer mind!