Lifeshocks

Last week saw me laid up in bed with Covid.

It was an unexpectedly emotionally triggering experience, bringing back so many memories of this time last year. Memories that part of me wanted to turn my face away from, and yet another part of me felt compelled to revisit.

Ill in bed feeling too poorly to watch TV, listen to music, or read a book - the very thought of those activities making me feel physically sick. Back behind the closed door of what used to be my study but last year became my ‘chemo cell’. Looking at the ceiling, being delivered little plates of beautifully presented starchy bland food – as requested, because that’s what I thought I might be able to eat. And yet finding myself unable to. Impossible to find warmth, wrapping my shivering body in my snuggly ‘chemo cardigan’. It all felt so intensely, viscerally reminiscent.

I had to go into hospital for IV antibodies (I’m still classed as clinically vulnerable). Hearing the rhythmic click and whir of the drip’s pump – in part as comforting as a heartbeat and in part evoking the dimly lit chemo suite, triggered intense feelings of nausea by association. My covid experience brought back so many buried feelings from this time last year, when I was deep, deep within the belly of the chemo beast. My phone reminded me that ‘on this day one year ago’, as my hair started to fall out in clumps, Rob leant me over the edge of the bath and tenderly shaved my head. I can still feel the cold rim of the bath pressing against my naked chest, my teardrops mixing with my hair as it dropped unceremoniously into the bathtub below.

I was drawn into remembering some of the significant and traumatic moments of the last year which I had tucked away inside. I reread my blogs, all 36,000 words of them - a strange and yet cathartic experience - a little like reading someone else’s story, and yet very much mine. It made me cry. It made me feel sick. It made me feel sad. It made me feel proud. It made me feel hopeful. It made me realise how tumultuous and at times traumatic this last year has been.

When I think back now, it's easy to remember the day of my diagnosis as the day everything changed. And that is absolutely right. But what I also realise is that this was just the first of many smaller life shocks. Many other instances when the world tilted a little further on its axis. And that is what living with cancer feels like. It is not just one moment and everything changes. Yes, it is that, but it is much more besides. It is a series of small unfolding events, each one calling on you to reassess your worldview, for better or for worse, each one demanding that you recalibrate and re-find your north.

Among others, I was reminded of the day when I finally had my first meeting with an oncologist. I had been waiting for this appointment for two months. It was my first chance to understand what my particular cancer markers meant, to unpack my prognosis and explore my options (none of that happens when you are given your diagnosis).

We sat waiting to see him for almost two hours.

“He’s running late”.

”How long will we get with him when we do get to see him?” I asked. I needed to prioritise my lengthy list of questions accordingly.

“Oh, you won’t be rushed on your first appointment. Forty or 50 minutes – he’ll make sure you have however long you need”. I felt reassured. I didn’t mind waiting in the knowledge that we would get what we needed from the appointment when it eventually happened.

Eventually, a nurse told us that we would now be seeing the registrar first, given the delay in seeing the consultant.

Now I don’t know if it was because he didn’t usually do the initial chat with a new patient (maybe true), or that he was particularly inexperienced (almost certainly true), or that his objectives from this appointment were different from mine (definitely true – his job clearly was to get us to sign the consent forms for treatment), but his opening line - “So, what do you know about the side effects of chemotherapy?” – surprised us.

Rob and I sat there silently, non-plussed, each of us trying to catch up, to change mental tack, to work out how this conversation was starting in such a different place than we had expected. No “how are you?” No “so we wanted to walk you through your diagnosis and then look at your options”. No.

I didn’t understand. How was I expected to jump straight into discussing the details of potential treatments before understanding quite what I was facing and the possible scenarios that might play out for me?

His starting point was to ask me what I knew about the side effects of chemo, an implicit assumption that I would be having it. But for me he was starting in entirely the wrong place. I needed to understand more about my cancer before we talked about possible treatments. I wanted to know more about the big picture before I agreed to chemo. And ideally (I know I was expecting a little too much here) I wanted to have some sense of being held.

After a few faltering, false starts Rob tried a new tack, meeting the registrar where he clearly felt most comfortable – on the subject of chemotherapy.

“So I’d really love to understand what the additional benefit is to Bethan from having chemotherapy..:”.

“Well, having chemotherapy should increase her 5-year survival rate by around 6%”.

Six percent? Six per cent? Had I heard him correctly? Well, excuse me, I thought, but that seems of relatively questionable benefit when you take into account the stress and potential collateral damage of chemotherapy.

And so to the obvious next question. What would my predicted 5-year survival rate be without treatment? At this point the registrar suggested we consult a website at home that the NHS uses to predict breast cancer survival rates – imaginatively called PREDICT. He told us all of the variables that we needed to put in to come up with my ‘personal’ predicted survival rates. He suggested we take a look when we get home. This seemed a curious approach.

There was then a curt knock at the door and the flustered consultant barrelled in. He barely introduced himself and told us to follow him. “I’m running very behind. Some people have been waiting two hours to see me. I can give you ten minutes”.

Ten minutes? But we’d been waiting two hours as well. I scrabbled to think how I could drastically reshape my question list in light of this new information.

We were ushered at speed into a small, stuffy consulting room. Although we could only see his eyes above his blue surgical mask, the consultant was clearly stressed and seemed slightly impatient to get us started, processed and back out of the door as quickly as he could. “So, my registrar has made everything clear I hope. Any questions?”

Again, quite where to start? Our now eight-minute deadline was sucking all of the air from the room.

“Yes. I am still just trying to get a sense of what you are saying to yourself when you look at me. Are you thinking ‘this one is straightforward, almost guaranteed full recovery? Are you thinking, no-hoper? Or are you thinking somewhere in between? I am guessing it’s probably the latter, but it would be really helpful for me in assessing my treatment options to get a sense of roughly where on that continuum you’d place me.”

He took a deep breath in and slowly exhaled. I felt in that moment that he landed in the room with us, as if his full attention was now focussed on our consultation – no longer distracted by thoughts of the growing line of women waiting outside.

“OK. Are you numbers people or words people?” he asked.

“I’m words, he’s numbers – but we can both work with either so take your pick”

“Do you have children?”.

This did not feel like a good news sort of question to be asking me.

“Yes…three.”

“How old?”

Again. This instinctively did not feel like a good news sort of question to be asking me.

“16, 14 and 12. Your colleague recommended that we look at the Predict website…”

Above his mask, I swear his forehead blanched. A sharp intake of breath. “I would not recommend you to do that, or if you do, do it together.”

Ok, so this was definitely not good news.

“You will find your results...alarming.”

OK, so we were going to go there now.

With only my eyes to go on, I could see he was desperately trying to assess me. Trying to work out quite how to proceed from the place we found ourselves. Second guessing what I needed him to be. Was I the sort of patient who needed him to gloss over the tricky bits, building my hope? Or was I the sort of patient who needed to know every detail of what was happening to me in order to be able to move forwards? What did I need from him?

Sensing him flounder slightly I decided to put him out of his misery. My now seven minutes was ticking away. I asked him to be straight with me. I told him I’d prefer it that way.

He told me that given the size of my tumour, my cancer’s particular markers, and the high level of lymph node involvement, if I were to have no further treatment (over and above the surgery I had already had) my chances of surviving for 5 years were just 15%.

Boom. ‘Alarming’ suddenly felt like a very circumspect description. ‘Terrifying’ felt more appropriate. But I guess that’s a word your oncologist does their best to avoid – even if someone’s asked you to tell it to them straight.

Suddenly, the mere 6% of additional cover bought by having chemotherapy felt like a potential lifeline. Add to that a similar level of improvement from receiving radiotherapy, and a little more again from the ground-breaking targeted treatment I was eligible for (courtesy of the HER 2+ status of my cancer – a more aggressive cancer that until the arrival of this new drug a few years ago was near impossible to treat). My 5-year survival rate started to nudge upwards, increment by increment. But the final personalised, predicted survival rate still looked far starker than I had been hoping.

The oncologist explained that yes, my odds were challenging. But he also explained that there are not just two potential immediate outcomes for me – live or die. There is also a very real third. A possible reality where I develop secondaries and have to live with chronic, incurable disease for months or years, dropping in and out of treatment in an attempt to slow the progression of the cancer.

Life in the grey. The slow unfurling of the reality of a life lived with cancer.

Remembering this conversation made me reconsider a post that I put out on Facebook a couple of weeks ago, declaring the results of my post treatment scans with the words ALL CLEAR.

On reflection, this post did those living with cancer a disservice.

Let me explain.

Following my post I received a gloriously warm outpouring of good wishes, for which I am deeply grateful. It is always helpful to know that friends and loved ones are behind you, backing your every step.

But a subsequent interaction, where someone kindly suggested that my scan results meant I was 'all done' with cancer and could now 'get back to my old life' pulled me up short. No, it is not 'all done'. And I cannot get 'back to my old life'.

And herein lies the disservice of my post.

My recent scans were always likely to be clear. The cancer was cut out of me when they removed my breast. The purpose of the treatment I have been receiving for 14 months has been to try to prevent cancer from re-establishing itself in the future. I would have been very unlucky if new cancer had grown during active treatment - it is more likely to start growing now that I have stopped treatment. I had requested the scans as a reassurance more than anything.

Don't get me wrong. It is not that I am not relieved to have had clear scans. I am deeply relieved. And it is not that I am not finding joy and getting on with life - I am actively choosing to live every day.

But anyone living with cancer will tell you, a clear scan does not mean that it is all done. It is never all done, until it is done. And yet in my Facebook post I played into the oft held misconception (it was my own before having cancer) that there are two states – having cancer, and not having cancer. Two complete and neat circles with no intersection between them.

All or nothing.

The reality though is that these two circles massively overlap. And for anyone who has had a cancer diagnosis, what they enter after treatment has ended is the area of overlap. A murky zone of uncertainty and nuance, of shadowy corners and unfolding stories.

Cancer is not well understood by most of us. I certainly did not understand it before having it (inspite of having a mother who died of it), and still have much to learn. But the public perception of what having cancer means is often a very simplified one. And so when you are living with cancer, there is a sense of having to fit your ‘status updates’ in with a reductionist narrative of ‘battling cancer’ - where you are either winning or losing. A narrative that wants us to provide clear and final results. But this can be really tricky for someone living with cancer, whose reality may be far less clear cut, to navigate. How to share how you really are doing, in a way that is honest and relatable to those around you, and yet also moves our collective understanding of living with cancer forward?

My heart has repeatedly bled this week for Deborah James. Diagnosed with stage 4 bowel cancer in 2016, aged just 35, Deborah has been living and dying in public for 6 years. Through the groundbreaking podcast "You, me and the big C" and her Bowel Babe instagram posts, she has spoken out bravely and tirelessly, demystifying how it looks to live life inspite of and yet alongside cancer. She has been instrumental in moving public perceptions of the disease forward, helping to shape our understanding of a life lived in the cancer grey zone, and yet still lived in glorious technicolour.

One in two of us will get cancer - and yet for most of us it remains a mystery. Only by speaking openly and honestly and stretching public understanding of what it means to be diagnosed with and to live with cancer, can we help to destigmatise this most prevalent of diseases.

For leading the way and showing us how to have these conversations, we all owe Deborah James a massive debt of gratitude.