A note to my readers
This piece of writing was originally published on the 1st October, 2023. Since then, I have spent much time mulling over the risks that can arise from ambiguous communication, particularly in health care. Real clarity necessitates us all to talk about and to define words that may otherwise be subjectively defined, such as hope. Life feels precarious enough; let’s not let vague language add to this. In light of this, I felt pulled to revisit this piece. It remains similar to my original piece of writing, with some revisions and additions, particularly near the end. I have also created new paintings and a new voiceover to accompany this revision.
Hope (/həʊp/)
a feeling of expectation and desire for a particular thing to happen.
a feeling of trust
For many months, if not short years, I resisted the word hope. Unsettled, I bristled with irritation when others would use it. When your child is dying, what do you do with a word like this? No longer did it feel like a word to hold, to burnish, a candle to light our way. Instead, it was barbed, cutting, a reminder that there was no future to strive towards.
You might wonder where this hostility came from. After all, hope is such a short, simple word. Consonant, vowel, consonant, vowel. A pattern, an order. What’s not to like?
Yet here I was, with an unyielding dislike for this seemingly uncomplicated word.
Embracing hope
It wasn’t always like this, before I became unduly familiar with cancer. In the spring and summer of 2020, during the Covid lockdown, I certainly wasn’t brushing hope aside. In fact, it had been a word to embrace, to guide us, when Neve was starting to become unwell.
Initially, the hope was that a return to school was all that she needed. Surely structure, social interaction, and her beloved teacher would cure her of whatever was ailing her, physically and emotionally? When that wasn’t the answer, it became hope for cooler weather and for the heatwave to pass. It seemed obvious at the time; Neve falling asleep on the floor, at school and at home, was merely the sign of a hot and tired child.
Then, as it became clear that this was not the sought after remedy, headaches were added to the mix. Our hopes were modified; now, it was for something simple, benign, short-lived. Maybe anaemia or a minor deficiency, easily remedied. The headaches continued, increasing in severity, waking Neve in the night. Gradually, an understanding that it, whatever it was, might be more significant; however, one could still hope it was manageable. By the second week in July, with daily headaches, the pain peaking in the evenings and enough other clues that something was awry, A&E became the next logical destination. Hope shifted again; we were now hoping for something viral, perhaps Glandular Fever or Long Covid, maybe Lyme disease, hopefully an answer.
We were all, doctors included, blindsided by the presence of a large lesion in Neve’s brain.
What now, for hope?
Granted, this wasn’t something we had been hoping for, but perhaps we could still hope that the lesion wasn’t a tumour. It wasn’t long before this morphed into hope that it was a benign tumour. It is important to note that at this point, I was still naive about the realities of brain tumours. I was yet to understand that there isn’t anything benign about a tumour in your brain. Malignant or benign, aggressive or not, brain tumours change lives.
Emergency brain surgery came next. Your child having major neurosurgery is certainly not what most parents hope for. Unless perhaps you are told that your child’s tumour is inoperable from the beginning? In Neve’s case, surgery was the next course of action; our hopes became for a complete removal of the tumour. Despite successful surgery, it was becoming increasingly clear that Neve’s tumour was diffuse. This meant that, unseen by all, it had likely already infiltrated further into her brain. It was time to transition to hoping that radiotherapy and chemotherapy would keep these malignant cells at bay.
There were still glimmers of hope, in those early days and weeks, even as the bad news piled up. Surely, there was still hope for Neve to be ok, to grow up?
It was a bike, a red one, that interrupted my rapidly changing hopes, that caused them to fall off a cliff.
Neve was hoping, fervently, to ride a bigger bicycle. Being the third child, we already had the next size up, so this was possible. However, it would mean a new bike for her biggest sister, in order for all the bikes to shift down through my daughters. In the middle of 2020, demand for bikes was exceptionally high, all across the country. Buying a new bike would be easier said than done. I was unconvinced that now would be the right time to put in all the effort that would be needed. The logical plan seemed to be to wait until the following year, when Neve’s treatment would be done. She would be healthier and perhaps the supply of bikes would have returned.
This led to conversations with Neve’s medical team. This hope was important. Important for Neve, I explained clearly. I needed to know, were we still hoping for a cure, could the bike plan wait until next year? Neve’s nurse listened and then she encouraged me forward. There was no need to wait to speak to the doctor; this nurse was wise and we all trusted her, doctors and families. There was still hope, she said, but if this was important to Neve and to us, then we should probably get on with it.
It was at this point that I began to realise that something had been missing, that there was an ever increasing gap. I was hoping and they were hoping but we were hoping for different things. A simple word with a diversity of subjective interpretations. My hopes might have been hopes but they were false hopes and not based on reality. It was the bike that brought this lucidity.
It was around this same time that I began to ponder a simple maths equation. I am struck now by how many months it took me to do this. We had been told five years, as a best-case scenario. A minority of children with Neve’s tumour are alive five years after diagnosis. Neve was 7 years old. The maths weren’t complicated. 7 + 5 = 12. Age 12. If she and we were very lucky. What kind of hope was that? Again, this was not what I had understood a cure to mean. This was not a long, fruitful life, a child growing up to be a doctor and a parent, as she so wished. In fact, this was not even my child living to be a teenager, never mind an adult. This maths equation compounded the lucidity brought about by the bike. My awareness of how much I had misunderstood was growing.
Abandoning hope
This was the beginning of a process of untangling, of winnowing out those aspects of hope that didn’t resonate. In the cancer world that we had been catapulted into, hope seemed to mean cure. That had been my understanding. We had been hoping for a life-saving cure, surely? The formula seemed simple: cancer + hope = cure. It had seemed so uncomplicated.
This process of unpicking, of deciphering, of researching, in the context of the bike and the prognosis, led me to a deep-routed clarity. I finally understood. It had taken me several months, but here I was.
We were not aiming for a cure.
That was impossible. The vast majority of people do not live long, healthy lives after any brain tumour diagnosis. If they survive, the long term effects of treatment are profound. And a tumour as aggressive as Neve’s? Cure felt irrelevant.
If hope meant cure, then did that make hope irrelevant too?
That moment, just after you wake in the morning, when you suddenly remember. The life-changing insight into Neve’s reality seared through me, again and again.
In the autumn of 2020, nudged forwards by this nurse, I simultaneously began the search for a bike for my eldest whilst also casting hope aside.
I had questioned and pushed back against much of the language within the cancer world that didn’t resonate. Yet somehow I had not thought to question my merging of the word hope with cure. Now though, I was conscious that the word hope, used in the context of Neve, could only mean false hope. I didn’t want false hopes. I had no desire to imagine her having a long, healthy life if this was unrealistic and improbable. False hopes were hazardous; they could distract me from helping Neve make the most of the time that she did have. We needed a stable foundation of realistic hopes, in order to prioritise Neve’s quality of life. Life felt precarious enough; false hopes would only leave us more exposed.
Understanding that Neve essentially had a terminal diagnosis, in all but words, was a gift. I could reconcile hope and understand that the mirage of hoping for a cure was just that, a mirage. Knowing our reality gave me the clarity that I needed. A new bike was found, the older bikes were shuffled down the line of sisters and at long last, the scheme was fulfilled. Neve rode off on a new-to-her, big, glorious red bicycle.
This was a precious window of opportunity; Neve only rode that big red bike a few times, before she became too unwell. Neve’s nurse understood that false hope might have led us to miss this narrow window. Neve could so easily not have had the chance to ride a bigger bike. The nurse’s lack of ambiguity allowed us to focus on what really mattered to Neve. This health professional laid the groundwork for what became known as a Red Bike Moment1. These moments so often lie in the hands of health professionals. We can only make choices with the information that we have - children and families need to be given the option of knowing their reality. With this in place, we open the door to red bike moments; meaningful choices and activities that are what really matter.
Despite this personal moment of clarity, I was not yet seeing this clarity reflected in the world around me. Elsewhere, I saw others continuing to hold up hope as a beacon, as an indispensable lighthouse. I felt confused, annoyed at the idea that hope was a necessity for recovery.
Hope was synonymous with cure, with time, with survival, with treatment, with living. Aggressive brain tumours are generally not curable. Viewing these two principles together led to only one stark conclusion. There was no point in hoping. Why put any of our limited time and energy into hoping for a cure, if this was irrelevant? As it was, I could not stop my brain from seeing all the already missed opportunities. Precious energy and time had slipped away, unnoticed, while we were distracted by false hopes.
Not long after this, an MRI changed everything and nothing. The biggest change was that the conversation, the words, became very clear. It was out in the open, no longer solely a suspicion on my part. Neve’s cancer was continuing to spread and it was now inoperable and incurable. The doctor’s words were carefully chosen, spoken with care and compassion. “There is no more hope for a cure.” All the ambiguity dissipated. Another gift. Clarity. The bravery and honesty that this doctor and his team showed us was an offering like no other.
Reclaiming hope
You might assume that my antipathy towards hope would continue to this day. Surely, watching Neve’s deterioration, her pain, her sorrow, her suffering and ultimately, her death, surely that must make hope feel at best irrelevant, immaterial. You might even, understandably, imagine resentment and rage towards this seemingly simple word, so full of contradictions.
But that is not the case. As Neve became more and more unwell, I began to wonder about reclaiming the word hope. The definition of hope, according to the Oxford English Dictionary, is “a feeling of expectation and desire for a particular thing to happen.”
Gradually, I began to allow the nuances of hope to trickle in. Hope, in the cancer world, might mean cure, yes. But in the palliative care world, it was so much more shaded, refined, varied. Hope was ambitious, yes, but it was also realistic. Hope for the best, plan for the worst, they might say. Why spend precious time hoping for a cure, if that isn’t realistic? Surely this would distract us from hoping for and finding more red bike moments; things that really mattered to Neve?
If hope was more nuanced than I had realised, why couldn’t there be hope even as death approached? Without thinking about it, I realised that we had many hopes. We hoped:
for pain-free days,
to reduce suffering,
for smiles and laughter,
for connections,
for videos of Olivers and Olis juggling,
for Neve to be awake when her teacher arrived,
for an ample supply of freddos,
for good coverage of shifts on the rota,
for more smoked salmon,
for visits to our hospice,
for new laughing fruit & veg,
to stay out of the hospital.
We did a lot of hoping, in fact. What we were not hoping for, however, was more cancer treatment. We were not hoping for a cure, because we understood that there wasn’t one.
If all of this was the case, perhaps hope could still be a word for us? We had had to learn to let go, somewhat, of expectations, of plans, of desires. Neve confounded and confused us all, day in and day out. At times, hope was muddled and contradictory. It had to be flexible, to be nimble, to adjust. But it was there. If I focused on the real definition of hope, this was a word that could carry us forward.
And yet, there was more, more to love about hope. When I looked again I could see that the Oxford dictionary also defined hope as “a feeling of trust.” How could I not have known this? My smile widened, as a feeling of warm tranquillity enveloped me.
Hope was not just a looking forward word, an expectation, hopefully on a foundation of reality. No, hope was also a wider social feeling, a connection between people. This rang true. So often, our hope revolved around people. Connection had been a balm to our souls when there was suffering and sadness. Even when not obvious, underlying each and every hope were the people who were part of it. The hope we needed came from the village of people we trusted.
Looking back at the pivotal conversations that took place, both with Neve’s nurse about the bike and with her doctor about the terminality of her cancer, I am struck by the gifts that they gave us. Despite the anguish, these courageous health professionals did not shy away from having these tender conversations with us. They understood that false hopes could have led us down a path of more suffering, in our ignorance of reality. Without their clarity, we would have missed opportunities to focus on what really mattered to Neve.
For those who stand in that pivotal space, who hold the key to knowledge and clarity, I urge you to pause for a moment. Remember that others might have the opportunity for their own red bike moments, if they understand their reality. Ask them what they want to know. Listen and share and listen again. If you use the word hope, clarify what you mean. Don’t let there be stories of you hoping and them hoping and ultimately a profound mismatch in the understanding of what hoping meant.
My body continues to tense, briefly, when I hear the word hope, used in the context of cancer. There remains a residual unease, as I recall the ever increasing chasm between our hopes and their hopes, before I understood. I ask myself, does it matter now, all these what ifs? However, the reality is that emotions attach to words and my body holds the imprint of these sensations, induced by words. How many children won’t get their own red bike moment, because their family has not been given the necessary clarity?
Even when time is short, when there is suffering and pain, sorrow and anguish, we can still be hopeful. Let us ground our hopes in reality, while we make them as ambitious as our dreams desire. In order to allow hope to be true to itself, we need to disentangle it from belonging solely to a cure. Hope can be a nap or a cup of coffee, a smile or a pain free afternoon. It can be fresh air or a hug, a freddo or a visit from a friend.
Arguably, it was reclaiming hope that allowed me to recognise and acknowledge the one hope that was constantly at the forefront of my mind. The significance of this was both heart-rending and a comforting relief, at a time when Neve was frequently sick enough to die. This was my hope for Neve to be ok. Even, and especially, as she died.
The term Red Bike Moments was coined by Kathryn Mannix, as a way to share a very simple and clear example of the importance of clear communication, particularly when time is short.
Definitely worth a re-read Emily. This approach to hope sure feels good to me. More people need to understand how they can continue to hope through the process of dying. Hugs from Sheila.
I came back to this post today prompted by mutual friends, at a time when hope feels very problematic. It’s so good - thank you.