Between Stability and the Ache of Wanting It Gone

Here’s the thing....my story isn’t written in black & white medical notes. Doctors talk in probabilities, averages, clinical guidelines, and past trends....but my body, my spirit, my immune system....they don’t fit into a statistic.

What I want....for the melanoma to be gone....is absolutely valid. It’s real life, it’s human, and it’s part of what fuels my healing. And it’s not naïve. People do experience deep remissions that last for years, even decades. Some go on to live without recurrence. That possibility belongs to me, even if a doctor can’t promise it.

I am treated at The Royal Marsden in Chelsea, by a fabulous team, Professor Larkin heads up my team and there are surgeons, Myles Smith, who operated on me and saved my life last November when I had a life threatening bleed (a melanoma tumour had started to grow inside my right ovary, which caused it to rupture and create a life threatening bleed) and doctors and nurses. My Nurse, Nikki Hunter, is just one of the most amazing people, she's warm and tactile, kind and funny, and so knowledgable, she is the friendly face I look forward to seeing each month.

🔎 The Scan Journey So Far this year

March: My PET scan showed a mixed response....some areas improving, others still active.

June: The report described “differential metabolic treatment response.” Some lesions shrank, inflammation reduced, but a new area appeared in my left thigh and one area in my pelvis looked concerning. It was a reminder that healing isn’t linear. The next set of scans where brought forward to 8 weeks later, rather than the usual 3 months, to keep a closer eye on things, so that in itself made the August scans more daunting.

August: A couple of areas are now stable or improved. The pelvic sidewall abnormality has completely resolved. The left ovary is clear. HUGE relief! The highlighted area of concern in the abdominal wall is calmer. My right thigh lesion shrank in size. But there are still two stubborn areas....a liver lesion and my left thigh....glowing with activity. My shoulder, 3 areas there, one right at the base of my neck, on the right side just as it meets my collarbone, this is the supraclavicular. I can feel that tumour, much as I try to ignore it most of the time, it is my reality to acknowledge and accept that it is there. The infraclavicular area, just beneath my collarbone, and my chest wall. 2 out of these 3 tumours have shrunk, but the activity within the tumour has increased. 1 of the tumours has stayed the same.

My liver, back in January 2024 when I had my first PET scan, 5 out of the 8 sections of my liver contained cancer. Now it is only in 2 sections, but one of the tumours has grown.

This is what the radiologist called a “favourable treatment response.” No new spread and no new disease. Stability in many places. Even resolution in some.

And yet, the words from my professor echo loudly and made me feel so sad: you’ll always have melanoma, but we can hope, and aim for remission. I want him to tell me it will be gone and my life will be normal again, whatever that is.

💔 Living With the Ache

Right now, I’m standing in the ache of:

“This is forever?”

“Why do I have to keep going through this?”

“Why can’t I just be free of this?”

And that ache is real. It deserves to be spoken, cried, written, screamed when needs to be. Because I’m not a machine. I’m a woman who just wants her life back...her body back.....and a future to look forward to.

Yes, the August scan showed stability. Yes, some areas healed. Yes, there’s progress. But there are still stubborn areas, and there’s still the sentence that echoes in my ears: you’ll always have melanoma.

I want more than management. I want freedom. I want to know its gone. And maybe the system can’t promise me that, but I am still allowed to want it, to do everyting within my power for it, to visualise it.

🌱 How I Keep Showing Up

Right now, Prof Larkin has authorised another three cycles of immunotherapy, 4 weeks apart....and then more scans. So I keep going. He reminded me to be on the look out for side effects. I had terrible side effects when I first started immuno, he reminded me any of them, and more, could show up at any time, so just be aware. It is always such a huge reality check when I visit the hospital. And I do tend to crawl under a rock for a few days to process everything. And I keep showing up with all the other tools I’ve chosen to surround myself with:

HBOT (hyperbaric oxygen therapy): flooding my body with oxygen, making it harder for cancer to thrive. Cancer HATES oxygen.

Infrared sauna: using heat to stress cancer cells while supporting my detox and circulation.

Various functional supplements and tinctures each one supporting immunity, reducing inflammation, and healing pathways.

Keto and glucose/ketone tracking...shaping my body’s metabolism into one less hospitable to cancer. Cancer will not thrive in an environment it hates, so that is my daily focus.

Visualisation and meditation: seeing myself cancer free, but also visualising my T-cells (we all produce them in our bone marrow, they help to heal our cells in our bodies that have gone rouge!) cuddling into those lesions, bringing softness and healing them.

These are the rituals that give me back some control. That remind me healing isn’t only in the hands of doctors. I can do my part too. It's key.

I have met a handful of amazing people, also with cancer, so far, and they are who I tend to speak to before I give my head a wobble and carry on with life. We don't compare notes, but we listen to each other, on a call, over whatsapp, video message, voicenote, and we remind each other of all the little wins that all add up to the bigger wins.

This week also marks a new chapter at home....all three of my children are back at school. Annabelle into Year 8, Ted into his final year of primary school, Year 6, and Benj has just started Year 2, The house feels different in the mornings now, quieter, with that mix of routine and getting them out of the door on time. Watching them move forward in their own journeys, while I continue mine, brings me both grounding and perspective. Their laughter, their stories from the day, and even their schoolbag chaos, PE/swimming/ food tech/dance, and trying to remember which is on which day without having to bring the calendar up each time remind me that life keeps flowing, and there is so much still to be part of. And they, are my main reason.

✨ The Middle of the Story

So tonight, I’ll raise my (toxin free!) coffee to stability, to healing progress, and to the quiet resilience it takes to keep showing up for myself.

Because this is the middle of the story. The part where I hold steady, keep doing the things that make my body inhospitable to cancer, and trust that piece by piece, my immune system is finding its rhythm.

I don’t want “always.” I want “gone.” And until the day I can claim that, I will live in the space between what the doctors say and what I choose to believe. Because even in the middle, healing is happening......and.....it'll all be ok

Claire x