Philippa Kaye's journey from doctor to patient after cancer diagnosis
By MIRROR | 2 months ago
A resident doctor, Philippa Kaye, was just 39 when she heard the dreaded words ‘it’s cancer’, instantly crossing the divide from expert to patient.
She soon realised her years of medical training could never have prepared her for the realities of living with cancer – or undergoing treatment during the pandemic.
Here she tells her story in her own words...
Lockdown, in all its various inceptions over the past 12 months, has been incredibly isolating for everyone. But for some, like me, cancer is adding to the list of burdens that come with a global pandemic.
At 39, in May 2019, I was diagnosed with colorectal cancer and had major surgery followed by chemotherapy.
Then, in January 2020, further lesions were found in my abdomen. So when the pandemic hit, I was awaiting decisions about the most appropriate course of action.
As a doctor, as well as a patient, I know that if every decision in medicine is a balance of risks versus benefits, the pandemic added weight to the risks side which needed to be balanced out.
Medicine changed, appointments went from being face-to-face to online or on the phone – and in doing so, how you deal with an appointment also had to change.
Bringing cancer home
We generally advise people to go to hospital appointments with someone else, for support and because it is difficult to remember everything when emotions are heightened. But before the pandemic, I had always preferred to go alone. I would take a notebook, write down my questions beforehand and take notes during the consultation.
I wanted to go alone because I wanted to have the chance to process whatever had gone on, before coming home to explain it to my husband, three young children, parents, and friends.
I needed a minute to think and to feel – be that to go for a walk in tears, sit on a bench in the sun and breathe, or simply sit in my car and scream.
The pandemic meant that now many of my appointments were on the phone at home. Suddenly the world of cancer, its meetings, and treatment invaded the safety of my home.
It isn’t that cancer wasn’t already at home – of course, it was – but there was a physical separation which had been helpful. Whereas I used to brace myself before I went to an appointment and then return home, now the appointments were in that place of safety.
There was no time to take a minute, no space to meltdown as the demands of being a mother were present immediately – and the concerned face of my husband was waiting in the next room.
One of the hardest parts of having cancer is dealing with uncertainty. Waiting for scan results and blood tests, not knowing where the cancer is or what it is doing.
From the moment of diagnosis, there was a multitude of questions and a period of waiting for answers.
A diagnosis of bowel cancer meant a CT scan to check for spread and even surgery meant waiting to see if it had spread to the lymph nodes.
For every answer, there was another question about what next, what the plan would be, and what would happen if that didn’t work.
For each of these questions, there is uncertainty and waiting, and throughout treatment, you learn more and more to live in the present – not to plan too far ahead when you don’t know what the future will hold, be that with regard to chemotherapy side-effects, or even if there will be a future at all.
And so your world shrinks both in terms of timing and how far into the future you plan, but also in terms of where you go and what you can do as side-effects kick in.
The pandemic has meant everyone’s world has shrunk, and in lockdown, this shrinks to the four walls of your house. You can’t plan to go out and do anything because who knows what will be allowed and when.
Perhaps the pandemic has given us all an insight into what it is like to live with cancer in certain ways, as we all learn to live in the now.
Going it alone
I had two surgeries in 2020, the first in May just after the first peak and the second in September, just as numbers were beginning to rise again.
Although the possibility of having a larger surgery was touted in May, I was extremely anxious about an ICU to stay alone, returning home in lockdown, and three children needing home-schooling.
Instead, we did a holding surgery to buy us time – a surgery that involved only one night’s stay in hospital and a couple of weeks of recovery at home.
It was my first experience of what being alone truly means. I had moaned to friends in lockdown I was always surrounded by my family –I couldn’t even go to the toilet alone and all I wanted was five minutes’ peace.
But I think I meant five minutes’ peace to read a book and have a drink, not to wait for surgery alone without anyone to chat anxiously to – to have no one waiting when I woke up.
Over the summer it was found the lesions in my abdomen were still growing and there was no time to wait for anymore. I needed a huge operation which would take all day and require a stay in intensive care and about two weeks in the hospital.
I would have chemotherapy directly into my abdomen and be fed by a tube into the veins of my neck for a week.
And through it all, I’d be alone. Technically, in the ICU you are never physically alone. Throughout my very long 10-day ICU stay there was a nurse with me the entire time. I have never been so lonely in my life. As humans, we rely on touch, perhaps more than we know. We use it to communicate, to show love, to show we are there.
For those two weeks, it seemed like all touch was painful, from being rolled or assisted to stand, from having drains removed or being examined, it all hurt as opposed to being comforting.
My husband was allowed in, in full PPE, for an hour on two occasions. His holding my hand meant more than I could ever explain.
Technology is helpful when you are in the hospital alone, but it isn’t the same as a visitor. It feels like you have to have something to say when you phone someone, and sometimes even the effort of speaking was too much.
But ordinarily, my family would have sat with me, often in silence, perhaps holding my hand or stroking my hair.
These seem like simple little things, but the loss of them made a difficult situation seem, at times, impossible.
Pandemic or not, you walk through cancer alone. You can have all the support available, amazing family and friends, but for every scan, every procedure, every test – it’s just you.
Having family by your bedside means that, although they can perhaps never truly understand, they see. They bear witness to the enormity of it.
Without them there I still wonder if my nearest and dearest will ever truly know my experience. Will I ever be able to really explain?
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