I’m back on the ward at Queen Charlotte’s Hospital in White City in West London where it all began. Today all the spirits of the past are here – several versions of me sliding past – my 33, 33 and 34 year old self walking around the corridors full of doubt, fear, joy. About 19 years ago, I was here having fibroids, extensive endometriosis, the kitchen sink and probably a shopping trolley or two removed before I could even embark on the gruelling medical journey that would eventually lead to three beautiful children. I’d met the love of my life and finally been ready to start a family. I didn’t know it at the time of course, but when I first walked through the doors of this hospital I still had over two years and three operations ahead of me before IVF could even begin. I have a sense of that version of me carrying a pervasive sadness around in those few years, not knowing if we’d be able to have a family. I began to pay attention to some of the older couples in my husband’s sports clubs who didn’t have children, who travelled all the time, and I tried to imagine I could live with that. But it wasn’t my dream.
I’d had a lot of pain and inflammation in my teens but not much was known about endometriosis then and it took another 25 years, a lot of dismissive male GPs and a rather late urge to breed to finally do something about it. These were the walls that whispered to me that I’d never have children, the pictures that mocked my hope when there was no funding available, the furniture that held my body in tentative, terrified joy when a heartbeat showed up on the scan.
Today I found myself back on the very same ward where I had two laparoscopies and a hysteroscopy. I shuddered slightly as I walked in at 6.45am, passing the prenatal clinic waiting room where I used to sit knotted with anxiety about all the unknowns we faced. The corridor where a less than sensitive consultant had shouted cheerily after me in front of the whole waiting room that I could ‘do with losing a bit of weight’. Nice. I wanted to walk in that waiting room and tell the ghost of my younger self not to mind him. I was just fine as I was and it would all work out.
By 2010 we’d had all the luck, after just one successful round of IVF, there was a beautiful 10 pound baby boy, and a bunch of embryos chilling in the freezer until 2012. They would later become our twins. It taught me to trust the journey. Sometimes things just work out.
This time I’m here for elective surgery to have my ovaries and fallopian tubes removed to reduce the risk of my oestrogen sensitive cancer coming back (or rather, becoming active again. As a stage 4 cancer patient no doctor will ever say to me that I am in remission or that the cancer is gone so I have to gift myself this narrative.)
Each month I have to go in for a giant ‘horse injection’ as I call it. An implant called Goserelin or Zoladex that suppresses my oestrogen. Even though I had assumed I was menopausal it turns out I was still pumping the stuff out. This sits on it. If the nurse is too gentle and doesn’t grab a handful of belly it pokes you all month. I’ve had to request a certain delicate nurse not treat me for this reason. So I was horrified when I discovered I’d be on this drug indefinitely as I thought it would be just a year or so until things were shut down.
I’d been reading academic papers about ‘oestrogen escape’ and asked my consultant if I’d understood correctly that this could happen on my oestrogen suppressant drugs. One paper I’d read said up to a third could leak back into your system. My understanding of medical papers is limited and half the time I don’t know what I’m reading or if it’s peer reviewed or credible so don’t take my word for it. I’m not that sort of prof. and my treatment has been very effective. But I wasn’t really sure why my oncology team hadn’t raised it sooner. I had enough going on last year perhaps. As soon as I found out that whipping my ovaries out was an option and would mean I could stop the monthly horse injections in the belly I asked for it to happen as soon as possible. I pushed for it. My consultant agreed it made sense and was much safer. Gotta love ‘Patient Choice’. But sometimes you have to figure out the question for yourself.
It’s a weird feeling to be looking forward to surgery, through the other end of my fertility lifecycle binoculars. To have advocated for elective surgery is empowering. Radical decision making suits me. Saying goodbye to my reproductive organs is not so hard – people keep asking if I feel grief – not at all – but I say goodbye respectfully. It’s been a difficult relationship. They’ve caused a lot of drama and, ultimately, did their job…but only with quite a bit of help. We are taught to love our bodies but sometimes I’ve felt at war with the parts. Not…integrated. So I am grateful and ready to bid them a fond farewell. It’s cool on the ward today – small mercy after 35 degree heat – and the nurses tell me I am first up in surgery.
***
The anaesthetist comes to visit, Felicity, an older woman. As she is about to put me under in the pre op room I tell her I like to count backwards with the anaesthetic and will she tell me what number I got to? I’ve always done this. I think it’s a sort of silent promise to myself that there will be an afterwards and I will wake up. Another illusion of control.
She looks quizzically at me and asks if she has been my anaesthetist before and I say no I don’t think so but as I go under after the injection she says ‘this is just a little gin and tonic, imagine you’re on a beach’ and I remember her words from 18 years ago. I’m pretty sure they don’t all say that. I drift off to sleep with my G&T shot muttering about Koh Samui in the nineties. A beautiful piece of circularity meeting her here again.
When I wake up two hours later blinking and out of focus, with a raging sore throat from the intubation l, I can see a whiteboard and everyone around me is East Asian as is often the case in the NHS. I get the idea that I am in a Korean classroom and ask why. The nurse reminds me where I am and says I have pretty eyes. This is usually my line. I am normally embarrassingly expansive and complimentary of those around me when I wake up from anaesthetic. There’s none of that today. Perhaps the last year has knocked the daft romantic out of me. Back on the ward I see weird shimmering hallucinations in the corners of my vision. Random thoughts about dogs on the ward and other creatures rise and fall like bubbles as I drift in and out of sleep and I know its nonsense but it seems real.
I’ve learnt that being exceptionally nice to student nurses on the ward gets you more cups of tea. I doze and the heat builds oppressively as the day goes on. Women who were waiting for surgery after me gradually return to the ward in pain. I have been overhearing snippets of their various conditions and the operations they are here for through the curtains and I feel for them all. It’s tough being a woman. Don’t let anyone tell you it’s not. We endure. We live through a lot.
I order dinner. I obviously look like I’m doing too well as they seem to doubt I’ll still be there by dinner time. I have food anxiety as there are never gluten free snack options on the ward. I’ve snuck an avocado, a banana and dried apricots on the ward but they won’t let me eat solids yet. I once wrote down an Iris Murdoch quote as a teenager. ‘A talent for oblivion is a talent for survival’. I liked it for some reason. I’m updating it to ‘a talent for institutional food is a talent for survival’ because there is comfort in a steaming shepherd’s pie straight from the microwave. By 6pm I am dreaming of it.
They say I can stay the night if I want or go home. It’s tempting for a moment to rest in the arms of the NHS but once I have grilled a few medical staff about whether it’s safe to go, and heard the cries of pain from my wardmates I decide I’ll rest better at home. The husband comes to fetch me after work. While we are waiting for our uber outside I see a young family taking photos as they leave with their new baby and I wonder what life holds in store for them. I look at the new mother glowing. She has coordinated her going home outfit with the baby’s – a dusky flowing pink – and she looks radiant. I hope she will not find herself back here or at any hospital under my circumstances. I silently send my blessings up to heaven and wish her and her new family all the best as their life together begins. No drama.
***
I’ve been home two days now and the pain is pretty rough but I feel stoic and kind of happy because I chose this path and I know the pain will pass. That’s a little hard to hold on to as my abdomen bloats like a sore balloon.
I have said yes to a jazz gig on the 20th June in Tufnell Park. A mad moment a few weeks back knowing that my operation would probably get moved forward but it’s hard to row back on it. I was asked by an amazing woman, a singer and jazz drummer. Her irrepressible energy is hard to say no to and it was nice to be asked. Usually I have to make things happen for myself s, when the gig fairy comes knocking, we say yes don’t we? Even if it will require a bath chair or stool to sing from. Bed rest rehearsals start on Monday morning! Last time I prepared for a gig I was recovering from the shock of diagnosis and a lung biopsy, and singing and resonating all over the place helped a great deal. We will sing through this sisters.
I am, I fear, becoming a bit of a Weird Sister. My eldest son has reminded me of this phrase from Macbeth as he powers his way through four weeks of GCSE exams. Macbeth uses it to refer to the three witches of course who represent unruly disorder or the supernatural world. Even the meter of their verse breaks the rules. I like this term Weird Sisters. The rational world turned upside down for me last year and, whilst I remain committed to medical science, there are other things in this universe we do not fully understand and my natural curiosity leads me down new and unknown paths. Mainly sound and energy healing. There is a lot of dangerous nonsense out there in cancer land and you shouldn’t pay too much attention to all of it, but I see that major cancer centres and philanthropic funders are putting a lot of research effort into investigating the tangible therapeutic value of these sorts of adjunct therapies and how they interact with cancer cells. Engaging the bodies own defences and the parasympathetic nervous system with the ‘real’ medicine may be a factor in beating disease, in recovery and building up your immune system. And just as I am in the gym building strength each week, I attend to my energetic field. It’s all I can do so I do it.
The weekend before my op I was back down in the Sussex countryside on a farm doing my year-long gong training with the College of Sound Healing and our wonderful teacher Angela Mason (the fairy gongmother on instagram if you want to look her up). For two days I donged myself into a daze and received a lot of sounds. I don’t know why this particular healing modality calls to me so much but it feels like it stirs something ancient, ancestral and deep so I’m just following that urge. Trying to make sense of a year of magical thinking and keep it going. To rationalise a personal outcome that does not seen entirely rational. When I hear gongs and sound bowls my brain winds down instantly and I can access a mental and physical state of rest that takes me longer for my monkey mind to achieve with meditation. Just before I learnt the news that all my tumours had gone to sleep last July I felt this deep calm. Like I had acres of space and I knew something had changed. But how can we know? My body knew. Around the gongs I feel the same sense of space and healing. It’s hard to say more than that.
When I see photos of myself playing with the instruments I look so calm, like someone else has been summoned. Like I’m accessing something that I can offer to others. Like my face has been…ironed with some weird filter. I call it Gongface haha. And this path feels like an inviting path to who knows where. I like not knowing where it leads. It has no particular goal. That in itself makes it a good discipline after a lifetime of spurious career goals. This isn’t quite one of them but it suits my urge to ‘do’. Once I’m up and about I’ll start on the required 36 case studies. 72 hours of one to ones! It’s a big commitment but if you’re not ready after that you’ll never be.
In a moment of madness I bought myself a second gong. They are crazy expensive but when you see the work that goes into the handmade ones it seems cheap at twice the price. A Meinl chakra gong, sacral synodic moon, to honour the disruption in my own body and heal myself. I rushed and bought a Chau gong from Nepal before I started and it has a lovely deep resonance but it doesn’t sing like a whale like the nickel silver ones do. Together they will sound beautiful. I also have a small iron gong from Andromeda gongs on its way. Rather charmingly the man who makes them has emailed to say he’s rather busy and will start making mine in July. Fine. I like a slow purchase and imagine him in the forge making my slow iron gong in the fire.
At night when I can’t sleep (because I sleep half the day) I often find myself disappearing down new rabbit holes learning about wei qi and Chinese cosmology. I’ve been exploring a new research direction at work around ADHD and sensory overload, and how this impacts neurodivergent experiences of immersive performance. Pretty niche huh? The Chinese cosmological approach to the energetic body and its permeable boundaries is surprisingly similar to the experimental psychology papers I’ve been reading about the ADHD brain and how it lets more in. Under sensory pressure (more bright light, more noise non ADHD brains switch up the alpha waves to problem solve but the ADHD brain sucks it all up and stays in theta waves. I imagine it positively like a child looking at the world with wonder soaking up experience. I am that way inclined. My fun time off involves a lot of books and academic papers. I realise it would be more restful and more normal to just watch Netflix.
As an expert in neither experimental psychology nor Chinese cosmology I have come to the conclusion that a person diagnosed with ‘severe’ ADHD like me simply has more porous energetic borders. Severe is such a…severe word. I’d say I have ultra ADHD. Not so much a superpower but super absorbency. Like a giant kitchen towel! My brain lets in everything and I love it but sometimes it’s a lot all at once. I see it like the waves rushing up the shore. You can’t stop it or make sense of it so just flow with the tide. Sometimes you have to put up flood defences is all. These days I always have a couple of mental sandbags with me. You can watch the waves rush in from further away. You don’t have to stand there and drown.
And now I have found one thing that helps me suck it all up AND self regulate in the gong. Wild isn’t it! So bring it on. Bang a gong. Get it on. As the song goes.
Weird Sisters rule. Weird sisters forever.
Breathe 
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