Your milestones matter

Suzie Smith from London was diagnosed with bowel cancer in September 2021, when she was just 32. She shares with us, on the eve of her potentially last chemotherapy round, how she's planning to celebrate.

It feels right and very special to be writing to you exactly 15 months after my first post for Bowel Cancer UK, when I still thought my story was a script from Grey’s Anatomy. Things as you will read, got very real but tonight (well early morning, thanks steroids) is hopefully the night before my last ever chemo treatment. Can't quite write that without crying yet but tomorrow, we are going to celebrate in style!

But that is cancer, well for me anyways, it's impossible to know how you are ever going to feel. A friend of mine who was my age who we very recently lost to her cancer summed this up so well – sometimes we have days it's impossible to look or even reply to a text and then we can have some days we can almost forget we are sick.

My initial treatment plan was only meant to be six months, but Project Suzie well and truly blew out, we missed every single deadline (and for this little control freak that was hard) and hit some major delays and challenges. But I am SO HAPPY to report that after my initial successful IVF egg retrieval, a port insertion, countless MRI/CT scans, a total of six months of chemotherapy, 25 days of daily pelvic radiation and chemotherapy together, two surgeries, one-planned, one not within in six weeks of each other. In addition to COVID, a stoma that has a mind of her own, a-lot less hair (but it did hold on for dear life and for that I am grateful), a lot heavier thanks to my steroid besties, and some new pretty large scars.

I will be bringing a whole new meaning to BYOB (bring your own bell) and bringing my own handbell to ring to my Chemo Village at Guy's Hospital in London Bridge and marking my milestone my way, because it matters to me.

I have decided to ring the bell outside on a beautiful balcony overlooking my home, East London in a shimmery pink suit, a fabulous orange hat, my f**k cancer diamante necklace and a bright orange lip. With the hope that my family and friends can hear me and my bell vibrating around the world, especially in Australia, Cardiff, Ireland and of course London. My mum has coined the phrase ring the bell loud and proud, so that is what we are going to do! But, I also want to make sure I'm being sensitive to the other patients in the village whilst respecting and remembering the people in our community who never stood a chance against their cancer and never got a chance to ring a bell of their own.

Believe me, when I say I don't take this moment lightly or for granted but it is really important for me to take my moment and celebrate in a way that is unapologetically me. Like I promised you all from the very beginning, I was going to tackle my cancer by showing up as myself (which I have). I continued to dress in suits that made walking into appointments and treatments a little easier. I dressed as CEO of Project Suzie, fighting for the health that I wanted, whilst advocating for myself at every stage of my treatment plan even when I didn't have much fight left in me. I asked really scary questions, demanded second (or nine) opinions when my results broke my heart, and sourced new complementary therapies from other people in our community. For me that was acupuncture and massage, free online cancer yoga, swimming and meditation practices. And when I could afford them, facials, maintenance haircuts, nail appointments, beautiful restaurants, the occasional wine and experiences that helped me feel like I had a bit of control over my own life. And probably most importantly for me was my weekly therapy sessions that gave me a safe space to talk openly that all helped support the incredible drugs (and the doctors, nurses and secretaries behind my recovery) that has saved my life. Woah, that was a big but very truthful sentence.

What I have learnt time and time again, is that every single thing about cancer is personal and is so different for us all. Yes we may have bowel cancer but that doesn't mean our experience or outcome will be the same. Our diagnoses, our ages, our pre-existing conditions, our stages, our treatment plans, our side-effects, our teams, our friends, our family, if we have kids or if can have kids, if we have found love or are still looking, how we show up and our response and outcomes to our  treatments are all different. It's only natural that how we want to mark the end of our personal milestones will be different and deeply-personal too.

I know and understand why (okay, a lot) of people passionately HATE the bell ringing tradition, especially here in the UK but for me I have made the choice that I want to mark my moment with noise. I was inspired by my best friend in Australia who was diagnosed three weeks after me with breast cancer who chose to ring a bell to mark the end of her operation and radiation treatment. The hope I felt after seeing her video, with her looking so healthy, happy and relieved, reminded me that if she was able to make it through her treatment that maybe I could too? She has since confessed to me that she watches her bell video once a week to remind her how much strength she had at that moment and that is a pretty special memory to have. I too want to have the opportunity to hold the weight of the bell and remember everything I have gone through and the people I have met through my journey. And who knows maybe I might give someone else a little hope or a bit of extra strength. I want the opportunity to voice my frustrations, my anger, my joy, my relief, my gratitude and give thanks to my team and for myself for waking up every day and trying to find light even if things felt impossibly dark at times.

And guess who is going for a big plate of pasta to celebrate with stunning views of London Bridge that isn't from chemo village or a hospital ward with two wonderful friends who both have their own cancer stories. ME! That's who!

I may have had stage 3 bowel cancer but I never ever stopped eating pasta and I never will!

So what is next for me, I have some BIG ideas and dreams of how I want to help our community celebrate your own milestones (more on that soon). Dreams that wouldn't have even been a thought if I didn't get cancer, or I might have been too scared to even dream this big! But that's the thing about cancer there are silver linings if you look hard enough, and this damn disease really does help you to remember to not sweat the small stuff because what we have done and will do is big and that gives you a new-found-fearlessness that I know I didn't have before my diagnosis.

I am entering 2023 seeing light at the end of this tunnel whilst also allowing myself to think and plan for the future for the first time in almost three years. Yes, I am still waiting for scans, official results, port removal, a smaller op to get my stoma reversed and will have to see what my new AC (After Cancer) body looks like. But what I'm left with after my treatments, which is scary and will be another minefield to navigate I'm sure, is also a light and energy in me that was dimmed by my cancer and my treatments, which just feels so good to be getting back. It's my time now to thrive, not just to survive, which I did for so long whilst I lived and normalised my very long list of symptoms.

I want next year to be one of pure joy; I want to say YES for every time I had to say NO, for the things I had to miss (granted there weren't many, I made sure of it – I am not a lady who likes to miss a function) but there were many times I had to change, ask for help or adapt plans to cater for my energy levels. Bring on going home to Sydney to meet my niece for the first time and see my family and laugh with my friends, advocacy work, writing and talking more about my experience, working hard, Glastonbury, Eurovision, trips to Africa, Finland, and warm places with beaches. But also getting my fitness back and running a half marathon (I'm writing that so you hold me accountable), cold water swimming, finding the love I deserve, being open to new opportunities, no doubt buying more fabulous outfits and literally everything in between!

So I leave you to think about a way you'd like to mark your milestone that feels like you! That might be ringing a bell or not but whatever it is you deserve to mark your moment.

It's my hope that no one leaves an operation or treatment, be that at home or in a village feeling lonely or that their experience was anticlimactic. Much like the rest of our cancer experience, advocate for your own milestone, don't be shy or embarrassed to do something that matters to you, because you truly deserve it.

Till your moment whatever and whenever that might be, keep fighting to find the light even if things feel dark and find a way for you to walk into your next mission a little stronger but ALWAYS like you.

• Read more about Suzie's story
• Read Suzie's blog on dating with bowel cancer