Stocking my toolbox

Over the past few weeks, the numbers of swimmers at the local lido has dwindled each day in line with the falling water temperature. There is an unspoken sense of camaraderie amongst those of us left. But there is not often much involved chit chat. Most are solo swimmers and despite our shared experience, tend to keep to themselves. Almost as if immersion in the cold water has left only enough energy for a nod, a smile and a muttered hello.

And so I was surprised last week to be approached by a fellow regular.

“I love your hair cut” she said. “I wish I was brave enough to do something as radical as that.” I have to admit, I was momentarily rendered speechless.

Not because we had not spoken before, or because I was in any way affronted by her approach. But rather because in that moment my whole perception of self (and my perception of how others see me) was thrown into confusion. Confused that someone could no longer tell simply by looking at me that I am in cancer treatment.

I’ll admit that my instant reflex reaction was to blurt out the truth, and tell the woman that actually I had lost my hair to chemotherapy. But given the circumstances (we were both stood blue lipped and shivering in our own growing puddles of water) and in recognition of how awkward that might make her feel, I held myself back. Instead, I simply smiled and told her that I had found it liberating having no hair.

For me there has been something helpful about losing my locks. It has been a form of public shorthand – pre-announcing my medical condition and allowing an instant openness of dialogue. It has removed potential moments of awkwardness in daily encounters, freeing me from the need to decide over and again whether and when to reveal my health situation. My choice to go bald has served as a public indicator that I am ok to talk openly about my diagnosis and condition. I have welcomed the easing of social interaction that this has brought.

And so, the approach by my fellow swimmer felt in some ways like a significant shift - heralding a new stage in my relationship with cancer and in my relationship with the outside world. The notion that strangers might no longer see me as a cancer patient but as a woman sporting 2021’s hottest and most radical post-pandemic statement hairstyle (albeit it by accident) came as something of a surprise – and, if I am honest, left me feeling a little conflicted.

This subtle turning point was reinforced in a recent meeting with my oncologist. I have ongoing and active treatment scheduled until the end of March 2022 (a three weekly targeted treatment for the particular type of aggressive breast cancer I have). Were it not for this, this would usually be the moment (following surgery, chemo and radiotherapy – the mainstream medical tools), where my oncologist would, in short, sign me off and wave me on my merry way, sending me headlong back out into the slipstream with not much more than an utterance of ‘lest we meet again’ and a couple of crossed fingers.

This is apparently the moment that many cancer patients come undone emotionally. I can see why.

From the point of diagnosis you are caught up on the well-oiled treatment hamster wheel. I felt that my prognosis left me little choice but to embrace conventional treatment – whatever my misgivings (and I certainly had them). I knew that I simply had to keep putting one foot infront of the other, to get through each new treatment and each day to the best of my ability. For many months I felt too overwhelmed to do much else.

But now that particular ride is slowing down, and space is opening up to really reflect on the events of the past 9 months and the longer term implications of my diagnosis. And I am struck that when my treatment ride finishes I will, effectively, be out there on my own.

Conventional medicine has a limited toolbox for tackling cancer, the basic tenets of which have not changed much in 50 years – cut it out, blast it with cytotoxic chemicals and irradiate it. Undoubtedly these treatments have saved many lives. I am grateful for them. But they are also blunt tools of limited efficacy (the additional percentage increase in my 5 year survival rate as a result of having chemotherapy is just 8%...).

They are also not the whole story.

The medical approach on finishing my treatment will be to just to wait to see what happens next. NICE guidelines are that I should not receive any monitoring scans (in spite of the fact that my cancer is fast growing and that there is a significant chance of it returning in the coming months or the next few years). Instead, I am effectively advised to carry on with my life, hope for the best, and ‘wait for any symptoms of secondaries’ (which will mean I have stage 4 cancer). There is much I could say about this – indeed it’s a whole blog of its own – but this is not the place. Suffice to say that this passive, narrow approach does not sit comfortably with me. Instinct and extensive reading shows me that there is potentially way more that I can do to actively maximise my life chances.

Despite significant improvements in treatment in the last few decades, the UK has some of the worst cancer survival rates in Europe. We consistently lag way behind many countries around the world with comparable wealth and income levels.

Undoubtedly, the reasons for this are complex and multiple. But in addition to all the more obvious potential reasons (having witnessed a creaking system that too often feels as if it is only just coping I would hazard that chronic underinvestment is clearly in the mix) – I can’t help but think that somewhere along the line we are getting our approach to treating cancer (and so many other health conditions) wrong.

Very rarely in my treatment journey this year has anyone in enquired about me as a whole person - my life circumstances, relationships, lifestyle or overall health. Instead they have treated me as my ‘condition’. Almost as if cancer is something separate from me. But it is not. As if my role is limited to being a passive recipient of treatment - a victim of cancer - and not a powerful agent in my own health.

And yet there is so much research to support a more integrative whole body, whole being approach. A belief that holistic cancer care and the prevention of recurrence is about far more than just a reliance on conventional treatment. An approach where by looking at our own daily actions and life choices we can work with and support our bodies to recover from treatment and create a cancer unfriendly internal environment, minimising the likelihood of recurrence and optimising survival chances.

There is a whole complicated and overwhelming world of opinion on how to do this. It could be a more than full-time job researching the multiple options for how best to pick up the reins of responsibility for my own health – some more controversial than others – and, for me, this has to be balanced against leaving space to live each day. But at its heart there are a number of generally agreed core pillars of integrated care, deemed integral to protecting health. These include stress reduction, diet, supplementation and exercise.

It is well known that chronic high stress levels negatively impact our bodies. The growing field of psychoneuroimmunology recognises the importance of the connections between our mind (psycho), nervous system (neuro) and immune system (immunology), and the potential role these connections play in serious health conditions such as cancer and heart disease. Evidence demonstrates that changes in our thoughts, emotions and beliefs can bring about changes in our health and well-being. By reducing stress levels we can help to reduce inflammation and strengthen our body’s immune system – our first crucial natural line of defence against cancer.

There are many views on diet and cancer (some of them conflicting). But at its most basic, a largely plant based, healthy, nutrient rich diet bolsters our body’s ability to heal from treatment and boosts our natural defences, creating a hostile environment for lurking cancer cells by reducing inflammation, feeding our gut microbiome and optimising our immune systems. Supplementation (again, much debated) can provide additional support.

Finally, there is strong evidence that higher levels of physical activity lead to lower levels of cancer. Exercise plays a key role in helping stabilise blood insulin levels, maintaining a healthy weight, decreasing inflammation, boosting the immune system and reducing stress levels – all important factors in reducing our cancer risk and ensuring that we are better able to tolerate any future treatments.

And so, as I come towards the end of my conventional treatments, I am also discovering important ways to support myself in the weeks, months and years ahead - developing my own toolbox of care. Not satisfied with simply crossing my fingers and hoping for the best, I am creating a new framework for my life with the aim of minimising the risks of recurrence and maximising my life chances. I’m not ready for any other outcome.

Against this backdrop, I was deeply saddened a few weeks ago to learn of the death of Sophie Sabbage, whose book “The Cancer Whisperer” has been a constant companion to me these past months. Sophie spent much of the past 7 years, since her diagnosis of stage 4 lung cancer, helping others to deal with the grief, anger and denial of their cancer diagnoses, encouraging them to take charge of their treatment and health and embrace the ‘unlikely gifts of cancer’. My last encounter with her was in early September, when she led what was to be her final monthly group coaching session from her hospital bed. Sharing her wisdom until the very end, she leaves a large hole in the cancer community. But she also leaves a very big legacy and as I start to navigate this next stage of my cancer journey, refinding my agency and restocking my toolbox, Sophie's words resonate deeply…

”I have cancer, it does not have me”.

Thank you Sophie Sabbage.