Resonance

Hello. I’m sorry I haven’t written for a while. How are you? I’ve missed you! To be honest, I’ve been avoiding you. Is that a little too honest? Haha if only we could say these things in everyday life. I have been avoiding myself the most perhaps. I have become a master or mistress of distraction, finding many, many things to draw my attention away from the main event. Waiting. Or perhaps I should call it trying to reinvent the main event. My scan results were two weeks delayed, appointments cancelled all over the place. This time I found I had to dig deeper than ever to wait patiently. I tried every dirty trick in the book to get them sooner (I have a lot of strategies) but to no avail. I’m not above it when the system seems to be doing everything it can to keep me from my own data. When the report is in you get pinged on one of the apps (the ironically named Patient Knows Best which might be renamed Patient Knows Shit all) with a note to say the report will be in when the moon turns to blue cheese. Now, on the whole I cannot fault the care in the NHS but its systems are struggling. Last time I waited patiently for biopsy results believing there must be a justifiable delay or some complicated analysis to complete but it was not the case. My formal complaint was met after some months with a very telling report which revealed a long catalogue of simple process errors while I spent a month believing I’d be dead in a year. So. Go figure. I have developed strategies for coping and extraction.

In the meantime I have rehearsed for this month’s jazz gig, used the energy I do have to go to see live music and disappeared into a sea of soggy nostalgia catching up with old dear friends whose lives I should have kept up with. It’s been good for the soul. If you’re reading, I’m sorry it took me so long!

And I finally ran my first Creative Cancer Retreat. For eight ladies who are on their second time around. All courageous beyond comprehension and coping with a lot. I am reminded that cancer is a cruel disease and people are amazingly resilient. I haven’t advertised this retreat but instead collected women I have met through various channels. We made art, we did sound healing, vocal toning with my new shruti box (it’s another story in itself) and somatic healing work, pranic breathing and twin hearts meditation and a magnificent gong bath the likes of which I have never seen before. To Claire who came from Johnson’s Island, to Jo who shared her heady mix of physio, pilates and holistic energy work; to Angela and Tammy who brought more gongs than you can shake a stick at, frogs, rattles, chimes you name it we sounded it. To my dad who cooked and shared his bonsai passion and of course his home. Thank you. We laughed, some of us even drank wine and, most of all, we talked in a way you simply cannot talk around family or people who have not had a life threatening disease. It was pretty life affirming even in the darkest moments of sharing. The last ravishing flash of Autumn on the family bonsai nursery provided the backdrop. By the end I was ready to drop but it was worth it. The next one… is in Ibiza…

Funny, in this long stream of consciousness I keep trying to write about results – and the feeling of results days – but my brain reroutes.

The call was due at 12 last Tuesday allowing for an hour either side. I was concerned about being on the bus with my son when the call came after he’d sat some entrance exams for sixth form and I’d sat in a cafe chewing my nails. I prefer to shield the kids from the mechanics and from seeing me coping with the heaviness of uncertainty if possible. Some roads you walk alone. At least the last bit.

I was trying to feel optimistic and positive whilst preparing for being turned upside down again. You know when you are on some dreadful fairground ride and you know the upside down bit is coming. I brace for a new round of drama with the benefit of experience in much the same way. Getting ready to dig in and find my grit again. Not knowing whether I am preparing to get back to normal life (whatever that is) or go six rounds with the human tumble dryer again.

Spending the weekend with other women with stage 4 had reminded me rather brutally that things do turn in an instant. Deep breath. The nurse I like, Carey, rang an hour and ten minutes late by which time I was drowning quietly in a puddle of muddle and anxiety. I was expecting the consultant and she says ‘oh shall I get the consultant to ring you back?’ ‘NO!’

And the results were…

CLEAR

Sustained complete metabolic response. No sign of cancer in my lungs where there were two tumours, bone healing in the two areas of my left hip, two in my spine no longer visible, clavicle, shoulder blade. All. Gone. Just to be really clear. I am still stage four. In theory it will never be considered medically biologically actually gone. The doctors will not use the word remission. But I have shifted this time and will start to refer to it in the past tense. Why sit around expecting the worst? There is enough to cope with. Life requires a wilful suspension of disbelief generally. So why not this?

And on hearing the words the unbearable lightness and the weight of this miracle hits me in the face like a sandbag once more. I reel a little (whilst pacing a Japanese restaurant). Say thank you. Laugh nervously. Realise I am probably broadcasting to the restaurant. Hug my son mid sushi. Make the nurse read the report again like a poem. And sit back down quietly to my miso soup. Feeling lighter.

In the meantime, cycle two of the new drug is going quite well. They’ve reduced the dose a bit. By week three I go rather pale and interesting as my blood cell count drops to the floor and I am obliged to forego all the celebrity parties etc (FULL of germs celebrities). I nap A LOT but the joint pain is slightly better and I don’t feel quite so nasty all the time. Less like a dehydrated lemon and more like a stale custard cream. In the mornings I sometimes actually have some get up and go and remember how I used to attack the day. The energy doesn’t last too long but this feeling, this resonance of people, sounds and things continues. I feel a gentle buzzing in my spine and my hips where the tumours were. Sometimes a dull awkward ache, sometimes a tingle. I feel like there’s space in my energetic field. A huge back room which can accommodate all manner of miracles and adventures yet to come…and I wonder. We know so little about our own capacity to heal and yet we carry so much potential within ourselves which we never tap into. Maybe we can just imagine ourselves there and it is enough to turn the tide. Maybe it’s just fucking fantastic drugs and the wonder of modern medicine. Maybe.