Reclaiming Your Life from Medical Trauma

Book by James C. Jackson, PsyD 📚

To be clear and to avoid disappointment, Reclaiming Your Life from Medical Trauma is not a movie, so if you’re here for a snarky film review, pot shots at innocent try-hard actors and sharp tugs on the lowest hanging fruit of “the industry”, scroll down to read another post (e.g. the one about Ridley Scott’s NAPOLEON… a favourite, if I may be so immodest as to have one). And a film adaptation of Reclaiming Your Life from Medical Trauma is an unlikely prospect… it’d make for a very dull film indeed. It is a newly published book about… errrmm… reclaiming your life from medical trauma, doing exactly what it says on the tin, delivered on Friday (impeccable timing for me as I have been on a downward trajectory mental-health-wise), read last night almost entirely in one sitting and already having an impact on how I understand myself, my experiences and how I can, hopefully, get back on track after a few very, very wobbly years.

I imagine this book is only really useful in a self-helpy way if you believe yourself to have experienced medical trauma. In 2017 and 2018 I had large ovarian cysts and felt an intermittent sharp pain behind each of my hip bones, visiting UCLH’s gynaecology department no fewer than five times in 18 months to be told there was nothing wrong and no further investigations were warranted (even in the knowledge my mother had died of ovarian cancer at age 48). At one point a Man in White Coat said the pain I believed came from the cysts was a phantom pain, an hysterical pain: “Cysts,” he said, “do not have nerve endings and this is all in your mind,” evidencing his theorem by prodding mine with the transvaginal transducer he had inserted via a wide-mouthed speculum… nice (and if that image grosses you out, perhaps this is not the post for you? Again, try NAPOLEON! Although NAPOLEON does have quite a few vagina references, too, so far as I remember…). And I believed him. Who wouldn’t? He was a Man in White Coat, ffs!

In the autumn of 2018 in Los Angeles, not long after the vaginal-probe-prodding incident, I learned of a friend’s chronic kidney disease and his search for a living donor. The US Federal Government funds organ transplants and the hero volunteer (😇) would incur no medical costs and additional funds had already been raised for out of pocket expenses to cover 5 weeks in LA, a week pre-surgery and four weeks for recovery. Now, I’d really, really like to say my pure, angelic, wholesome, giving and altruistic heart leapt at the opportunity to relinquish an organ given I was, per the aforementioned and entirely credible Man in White Coat, perfectly healthy… but I confess it was probably the five weeks in LA that clinched the deal for me. Sure, I wanted to help my friend, but would I have jumped at the chance if the transplant had been arranged in a suburb of Detroit? Methinks probs not.

I was at UCLA Medical Centre the very next morning supplying nurses with an unbelievable volume of blood and receiving a massive container in which to collect three days of urine (which is a fuckin’ hell of a lot, people! I could hardly carry it back to them…), then further tests over a couple of months back in London before the surgery was approved. We were an extraordinarily good match, organ-wise, and I arrived back in LA in early 2019 in a cape and a halo, glowing with good health and leaning pretty heavily into the heroics. I’ll avoid going into too much of the detail of the diagnostic process, but suffice it to say the transition from hero to zero was abrupt and unforgiving: after a CT scan, the transplant surgeon didn’t think my cysts looked quite so innocent as the paperwork had suggested, sending me to a gynaecologist and for a raft of other tests; about 12 hours before the transplant, while I and the recipient were already fasting, the surgery and all associated appointments simply disappeared from our UCLA Medical Centre apps and I was given the name of a downtown oncologist to visit urgently (and I have not heard hide nor hair from the transplant team since, btw, dropped like a hot potato… or a red hot cancerous tumour, possibly).

Within a few days I sat alone opposite an oncologist who informed me I had a BRCA1 mutation which gave me a very high chance of breast and ovarian cancer and that they had tested for an ovarian cancer antigen (CA125) which should have been <35 and was 604. Uh-oh. “These are very large cysts,” he said, “Have you not been in any pain?” And I told him about the Man in White Coat and how cysts do not have any nerve endings and therefore I would not have felt any pain. “If you were to sit on a golf ball, would you feel it?” He asked. “Or step on a piece of Lego? The golf ball has no nerve endings, nor the Lego, but you would feel the pain. A bullet has no nerve endings, ffs.” Good point, eh?

Back in London by the end of the month, a further scan showed the cancer had spread generously around the abdominal cavity and peritoneum, creeping up into my lung tissue, and I required urgent surgery including a full hysterectomy, bi-lateral salpingo oophorectomy (favourite word alert!), omentectomy and lower anterior resection surgery (I’ll let you figure that one out, but it’s pretty fucking awful and has required follow-up maintenance surgery to help me manage the pain). This principal surgery was followed up immediately by carboplatin chemotherapy, then a two year course of an oral PARPi taken every twelve hours (totally brutal and worse than IV chemo, imo), then a double mastectomy and breast reconstruction. All in all I have had six organs entirely removed and three partially removed and resected, plus my bones are shot from the treatments and surgical menopause and I have osteoporosis.

And that, my friends, was the easy bit! The hard bit of a serious illness is the aftermath. Having watched my mum go through the same experience, I assumed I’d be dead and gone within five or so years… and I’ve just hit seven, so…. Good news, supposedly, but the aftermath is not only the hardest bit, it is enduring and it impacts every single aspect of one’s life. The main issue I have had since diagnosis is future planning (pension? Who needs a pension if your life expectancy is 18 months?! Let’s have a holiday in Lake Como instead! Carpe diem!) and, increasingly, depression and an overwhelming sense of grief (for my body, for the future I thought I would have, for my marriage). I accepted likely death with what I thought to be admirable stoicism, stiffening my lip, forcing a smile and determining to just get on with it and live my best life for however many years I was lucky enough to be given… five at most, right? I adjusted to near-death pretty darn well, all things considered, but reversing that position, i.e. adjusting to being around for longer than I’d anticipated and perhaps for decades to come, I have found to be nigh impossible. Recovery has not been linear and I go in and out of feeling incredibly blessed for being alive and wondering why I have bothered surviving at all. It ain’t easy, but I manage to successfully navigate the highs and deep, deep nadirs… most of the time.

A year ago I was diagnosed with complex PTSD and spent some time under the care of a young psychiatrist who was very lovely, but not entirely helpful or solution-oriented, and so I am so grateful to read this practical, pragmatic book which feels as if it has been written just for me. Although, perhaps it is written for you, too? We are all living much longer due to medical interventions (and we should be grateful, I suppose…), but we are often left with trauma which is not about the illness per se, nor the surgery or treatment or the way we felt in the hospital bed (e.g. post-first-surgery, I had fentanyl delivered via epidural, directly into my spinal column, but the needle somehow came out and I projectile vomited dark green mucus across the room from the pain while my bed was sopping wet and the mattress’s street value increased to tens of thousands of pounds… while the anaesthesiologist insisted everything was “Fine!”…. Honestly, those Men in White Coats, eh?! Will they never listen to us?), but is about the way in which our view of ourselves changes overnight: we have to reconsider our mortality, our sexuality (I have no female organs left other than my vagina… most of it… which hugely impacts my senses of femininity and sexuality), and the entirety of our identity.

I would be remiss if I did not acknowledge how much serious illness impacts those who love you, too, not least as I have two daughters and a genetic condition they may well inherit (and while I feel devastated by the end of my marriage and fundamentally broken by my ex-husband, I have learned a bit from Jackson’s Chapter 8, Finding Care for Families Impacted by Medical Trauma, and concede he will have gone through his own hellish process watching events unfold, entirely out of his control and powerless to intervene… I could probably be a bit more generous towards him… maybe… 🙄). And with that in mind, I’d say this is really a book for everyone, isn’t it? None of us will be so lucky as to not lose someone to a serious illness during our lifetime or watch them suffer and struggle through dehumanising treatments, and so perhaps as our population ages and we are 30% more likely to survive an advanced cancer diagnosis than we were a generation ago, we should all read Reclaiming Your Life (or someone else’s…) from Medical Trauma.

If you’d like to hear a longer and much more whimsical account of my diagnosis in LA and the weird way it felt parallel with the experiences of sexual harassment when I lived there in the 1990s (the predominant feeling when a woman is sexually harassed is one of shame… same with illness, sadly), and if you want to help with my financial future planning, please order around 3,000 copies of my novel, Prospects.

TRIGGER WARNING: a picture is worth a thousand words, they say, and while the photo below (after the book photo… so don’t complain if you scroll all the way down and you then suffer another type of life-ruining trauma) starts by hollering the words “Shark attack!!!”, it is actually a photo of my abdomen post-first surgery (of four… so far). Look at your own risk!