The Rainbow Unicorn Rides Again!!!

I’m not quite sure how to tell you this

I got the results of my PET scan yesterday and it has taken me a while to stop pinching myself. To check I am fully awake and not dreaming.

I have had a Complete Metabolic Response. Never have three little words sounded so sweet. Well maybe with the exception of ‘I love you’ when you really really want to hear it. But these three were pretty sweet.

Do you know what that means? DO YOU KNOW WHAT THAT MEANS DEAR READER???!!!! Sorry to shout. It means…

…I am a magical unicorn after all. Yep. I hate to say I told you so. I am that unlikely percentage. I am the 1%. The 10%. Whatever. The percentage varies according to age weight ethnicity type etc and a time component. Survival over time. It sounds a little smug but I am really just kissing the ground, grateful with the humility of someone who knows they got incredibly lucky. This word is not quite enough. I have been blessed. We don’t have a word in our language for how I feel today. I don’t have one.

Calm down little unicorn. There’s always a chance you’re just a regular horse gifted with a shiny, temporary horn. And the bones are still to heal and what if it comes back and the drugs stop working and what about that heart thing you quadricuspic freak, that’ll probably get you if you cancer doesn’t and maybe I’ll get knocked over by a car and what if I explode and and Trump’s going to get us all killed if AI doesn’t get us first and and and…shhhhhhh paranoid brown non shiny unicorn….you are ruining the glitterparty. This isn’t some trashy pony show you fool. It’s a miracle.

For today. Today. I am a golden freaking unicorn. And they do exist. Yes they do. Yes I do. That’s Me.

What does this actually mean, I hear you ask. Complete Metabolic Response means that, for now at least, there is NO EVIDENCE OF ACTIVE CANCER. It has gone to sleep. In the three places where the last PET scan saw bone metastasis – on my spine T12, on my hip, on my shoulder blade, the scan only shows a dense mass regenerating, no glow up. No metabolic activity. No active sites and evidence of sclerotic healing. The bone is regrowing. The other three smaller tumours in the bones found since don’t even get a mention. I’m honestly not sure what this means yet. Either they have disappeared or are too small to be detected by the scan. I expect there will be more CT scans to confirm these details but I had several of them recently so it is confusing. The main tumour in my lung which was 2.4cm gets no mention at all which I think means it was not detectable on the PET scan. The one on my subcarinal lymph nodes at the entry to my lung has ‘normalised’. Thursday’s shock discovery of a new one on my hip in a scan (less than a month ago) also gets no mention. So I tell you all this with great caution as I have only spoken to my specialist nurse, the wonderful Bernie, who woke me from my afternoon slumber to tell me the good news over the phone and read it all very slowly twice as I was half asleep. She sent me the report so I could see it with my own eyes. But the cancer has really gone. For now.

All the little tunas have swum away (no doubt terrified by my fearsome unicorn). My wildfire is OUT. My volcano is dormant. But I do still technically have stage four metastatic cancer. And it could come back. So a cautious HOORAY for this life and this time and this blessed reprieve. They will, no doubt, continue to scan the shit out of me. I will stay on the wonder drugs forever I assume or until such time as I get a recurrence at which point we try another one. So either the drugs are working or my healer is a total bargain. Or I’m a magical fucking unicorn. Let me hear you say it. Or all three.

Before I got the results yesterday I went to see Seka my healer again. I’m with her every morning this week. My body picked up where we left off. Last time it took a week to get to the hypnagogic jerks (remember those – best band name ever as one reader pointed out). This time we started there. When she is near and I close my eyes I see deep forest green. As the session went on it turned to pink to blue to white light. Where my third eye is I saw a green lotus flower. It’s folded green hands upright in prayer opened to pure white light. The wind whistled through the studio yesterday. A strangely powerful sonic cleanse. From a lying down position on her couch my body sat up in spite of me three times. Like I was rising off the table. When I left I felt so light I kept touching my head as it felt like I had forgotten something like a heavy hat. Where was the heaviness I carried before I entered? This morning I was able to tell her my news. She can add me to her list of the miracles and healed for her next book. The lady before me had the same and is also clear. Today all the emotions I have no doubt been suppressing began to surface during our session. Red vermillion orange like anger and passion and joy burning all at once and ready to burst. Today that powerful range of unexpressed emotions hurt and I had to say it was too much. It cracked through my fingers and toes like intense arthritis as it left my body.

It may surprise you that I remain a sceptic. I mean, but a healthy scepticism that does not get in the way of allowing me to try everything to save my own life, but a little scientist all the same. This is not a controlled experiment and can’t be attributed to any one thing. The doctors will of course attribute to the wonder of modern medicine and it does happen with these newish drugs…but complete metabolic response to treatment in two and a half cycles (just ten weeks) is also not very common. It is…it was beyond the wildest dreams of this unicorn. I get a bit longer to grow and look after my unicorn babies.

And so, whilst still dazed and confused with wonder, I have to provide some medical caveats based on evidence. The unicorn has gone from the healer’s couch to 3am reader of academic papers and back again in 24 hours. Patients with CMR (those with complete metabolic response) or NEDs (no not non exec directors but those with No Evidence of Disease) can relapse and you can still pop your clogs (I had to explain this phrase to my daughter today. It’s not easy but it made us laugh as a surreal image). The paper I read tracked patients from 2003 to 2023 on a different drug to me as my family of drugs have only been available for less than a decade. What I gleaned was that recurrence of cancer after a complete metabolic response was linked to all the things you might expect. Those with better outcomes and no recurrence were younger and healthier. The study demonstrated that a low BMI helps. Strength training, staying active and good nutrition helps especially in bone regrowth. Age and my cancer type is also on my side, even my genetic Asian inheritance may help. One thing that struck me reading this paper as the screen burn kicked in at 3.30am was that they can’t measure positivity. I have always felt this was the one thing I could control. Staying cheerful and positively focused. I am an expert at this! They also cannot measure objectively the systemic effects of painting and singing. Or, dear dear readers, the effects of being uplifted by hundreds of friends, acquanitances and strangers wishing you well and cheering you on from the sidelines. Thank you. It makes a difference.

Thank you thank you thank you. Every comment, every private message out of the blue, every heart, every view of this blog has lifted me up. I have been like a hungry hippo hoovering your positive wishes. I hope that is not just a sign of my vanity, for although that is definitely part of it, I have felt genuinely supported by close friends, old colleagues, and people I have never met. This blog has reached nearly 15000 views and 8000 viewers. I hope dear strangers (or rather friends I haven’t met yet) that it has helped a bit if you are also going through something that challenges your existence. Your faith in life. And so far, well in the past few weeks, we raised £16000 for Macmillan and St Catherine’s Hospice. It’s incredible.

I saw the new year in with my family six months ago under the magic of the northern lights in Finland. It was just six days before they found evidence of the first tumour in my lung. On January first I had a few little goals. I’m not big on new year’s resolutions but I determined to finish my PhD and to sing my first full jazz gig. The latter a young girl’s wish. That small ambition comes true next Thursday. Graduation is end of July. But I had no idea what a ride this year would be. And we are only half way through! Would I rather have had an ordinary year and not gone through this? I’m honestly not sure. Traumatic events help us to discover our true capacity. With the very real prospect of death we find life. It’s taught me not to crumble at the first sign of trouble. Just keep showing up for yourself. Find small pockets of joy. January was a month of sad serious faces saying ‘I’m sorry’, when they told me it was almost certainly lung cancer, and all the evidence suggested I had a very poor prognosis. A year to 18 months to live. My first thought was stubborn defiance. I WANT TO LIVE AND I’M NOT FUCKING DONE YET. I still have stuff to do! I want to see my children become the amazing adults I know they will be and live out their dreams. I want to grow old with my husband. I want to be there for my friends and colleagues and contribute to society more before I go. And fight fascist pigs! And for once in my life I said no. No way. I have more to give. And I put myself and the kids first. Perhaps I give myself too much agency here. Yes. The drugs are undoubtedly amazing. The doctors and the healers are gifted and purposeful individuals but I will take at least some of the credit here. Last time I had cancer (just the one small tumour but with a very nasty infection, cellulitis and suspected blood sepsis to be fair) I moved slowly, I lay in my bed and felt sorry for myself for a few months and I felt terrible. I was still grieving for my mother. I went back to a stressful job too soon and I felt worse. It led me to change my life and ditch what I felt was an uncaring situation which only took from me. After that I put my health and my mental health first and if I meet that sort of environment or those sorts of people these days I simply walk away. It was an important life lesson. Work is not life. Life is your work. Living well is your work.

This time a furious warrior like defiance and a deep calm kicked in simultaneously. These past few weeks I have had a full and expansive feeling in my body and in my head, and it feels like there is….room. A cave so deep and calm and wide I could wander off and disappear into it for a century. I’m not sure I can say this was a wilful act. More of a survival instinct. I’ve discovered the pure amplification of life, of joy, from turning my attention deep inside myself and yet producing an effect somehow outside myself, if that makes any sense. And I do believe in art as a means of connection with others, of reconnection with the self, that it can save us. A joyful externalisation of the internal landscape. I can hear religious friends, who I know have been praying furiously for me, sighing with exasperation. But God takes many different forms. I find my universal connection through self expression. One could say it is a form of worship. Hopefully not simply self worship. But worship of all there is. So you can all stop trying to convert me hahahaha. Maybe we just have different words for it and I don’t like your Bible or your dogma ok?

So for now, let’s just say I am not ‘cured’ but healing fast. We cannot be cured of this terminal condition we all exist within known as ‘life’. But I have time and I have a better idea what living life means. There will, no doubt, be more scans, more drugs, more healers I hope. More visions of the white lotus! More life.

Anything is possible. Literally anything.

Never give up on that idea. Promise me that.

I’m going to take a short break from writing this blog as I just heard on the radio that young people who spend four hours plus of screen time on their phones will spend 25 years of their life stuck to a small screen. And that’s not life. I am going to step out and look at the world instead and look at all the wonder. I adore technology but life is not in your phone. Live instead and consider every moment on a screen as a moment stolen from you by a billionaire.

(…and with that the magical unicorn gallopped off in a cloud of vermillion sparks, silhouetted against the clementine sunset. In her wake, eight giant tunas could be seen jumping from the ocean as if to greet her and then spontaneously exploded in a flurry of glitter. A deep voice of indeterminate gender that was probably something like god could be heard saying ‘goddam I didn’t know Unicorns could make fish explode! I’m pretty sure that wasn’t in the original plan! But hey I like it!’ And with that the unicorn went pooooooffff and dispersed to the four winds in a cloud of rainbow coloured powder. The sun plopped into the sea with a green flash and a satisfying hiss. On the wind, if you listened very closely, you could just make out a unicorn laughing and singing a happy tune as her golden hooves splish sploshed through the shallows… the sound slowly ebbing away as she headed happily home.