As someone living with terminal cancer, my life changed a long time before this pandemic hit.
I was first diagnosed with rectal cancer at the beginning of 2017. Although it was a shock, somehow I managed to pick myself up and face the future.
I think it helped that to begin with my diagnosis wasn’t terminal. Initially I was getting good results from the chemotherapy, but then over the months, the true aggression of my cancer revealed itself.
It was in May 2018 that I found out my cancer couldn’t be cured. When pressed, the doctors said I probably had around two-and-a-half years to live. A point I’m coming up to now.
At first, it was hard not to completely put life on hold. I’d think, ‘I’ll wait till the next scan before I do this’, or ‘I’ll wait till my next consultant appointment before I do that’.
But it didn’t take long for me to realise that wasn’t living at all; it was becoming a number of days punctuated by hospital visits. So I developed a different mindset, taking any opportunity as it came.
I didn’t draw up a bucket list, as such. Leaving loved ones behind to set off on a world cruise wasn’t my first instinct. Instead, I planned simple things, like leisurely lunches with friends, and weekends away with my two adult children, or my sisters.
My big ambition was to make more memories and enjoy whatever pleasures we could. It’s funny how we cling to normal when life stops being so.
So when the lockdown details were first announced, I was horrified. What would happen to all of my plans now?
Well, of course, like everyone else, I had to shelve them.
Unlike everyone else, however, I may never get to dust them off.
The prospect of seeing out my last summer trapped in the same four walls of my home by myself wasn’t an appealing one. And yet, I had to appreciate the very real danger coronavirus posed to me.
The government advice for those in my position says:
‘Shielding is for your personal protection. It’s your choice to decide whether to follow the measures we advise.
‘For example, if you have a terminal illness, or have been given a prognosis of less than six months to live, or have some other special circumstances, you may decide not to undertake shielding.’
Ultimately, I decided to respect the guidance and not go out. My children (who are, otherwise, self-isolating) still visit. Like many people, I’m making full use of technology to keep up with family and friends: I have a daily video call with my sisters and keep in touch with friends by email, WhatsApp or other platforms. But it’s no substitute for the physical contact of a hug.
I’m taking life a few days at a time and trying not to focus on how long I have left. My aim is to continue, on a scaled down basis, doing what I always have.
The recent good weather means I’ve been able to potter in my little garden, and I love art and craft projects: I have a painting in acrylics on the go at the moment.
And instead of skulking into the living room to watch mindless daytime TV, I’m developing a plan to be more selective, and ‘treat’ myself to a box set of something I can enjoy.
My children are wonderfully supportive: brave, empathetic and practical. My two sisters have been there for me always
It’s not ideal, but it’s the best we can do presently.
My children are wonderfully supportive: brave, empathetic and practical. My two sisters have been there for me always.
It helps to have the support of my Marie Curie nurse, Vicki, who has been visiting since the start of the year. In February 2020, she even arranged for me to visit a nearby hospice in Solihull so I could see what one was like.
It was such a warm, welcoming place – not at all what you might envision – that I decided, when the time came, I wanted to die there.
During lockdown, Vicki’s been there to take my calls and help me whenever my symptoms flared up. She’s my direct link to the care I need. I’ve been keeping busy by making a series of Instagram videos for the charity too, which seem to be well received.
But the reality of complete isolation hit home when I had to be admitted to the hospice on the second weekend of lockdown.
I’d started suffering abdominal pain and nausea earlier in the week, and by Saturday it was so unbearable I had to call my daughter Laura to come over. Experience taught us both this could be a sign of a bowel blockage.
Although I clearly needed treatment to control the pain, I didn’t want to expose myself to coronavirus on an NHS ward. So Laura called Marie Curie, who offered a bed in their hospice.
I’ll admit, I was worried. I’d always said I wanted to die there, but then coronavirus happened and things changed. Because of lockdown, the hospice couldn’t allow visitors anymore. That meant potentially dying alone without my children around me. The thought was terrifying, but the hospice were determined to help.
We discussed my options, and the next day I was admitted on the agreement that if treatment failed, they’d bring me home to die. Even so, hugging my children goodbye at the doors was the most difficult parting of my life. Imagine knowing this could be the last time you’d ever see your family.
But once I was settled on the ward, the nurses stepped in where my family couldn’t. Despite the lockdown, my bedside wasn’t empty. There was always a hand to hold, and someone to talk to.
Within days, my pain had been bought back under control, and I was well enough to stand on my own two feet again. They haven’t cured me. I was never going to be cured. But they lifted the load, just when I needed them most.
Because of their care, I’ve been back home for a week. While I don’t feel poorly in myself, one or two of the symptoms have raised their ugly heads again. I have no idea what the next few days will bring.
Who knows if I’ll outlive lockdown? What matters most is that I can be with my children.
That I can hear their voices and feel their hugs. When the time comes, that’s all that matters.