It is a while since I have written a blog. My disease has been stable for just over a year now and I have focused on living life as normally as possible, contributing where I can through work, and making sure to do some fun things in the meantime. Highlights include being at Lords for the cricket world cup final and watching the Last Night of the Proms at the Albert Hall. My daughter’s wedding in the summer was a lovely family occasion, especially because it was unclear when she started planning whether I would still be around for the day itself.
Stability is a strange concept with my cancer. I recently spoke at the annual conference of the National Cancer Research Institute, giving a patient’s perspective in a session on incurable cancer as a chronic disease. It is a central aim of recent advances in cancer research to help people like me, who cannot be cured, to live for longer with a reasonable quality of life. Treatments targeted at genetic mutations in my cancer have done this remarkably well for the past two years, and I cannot tell you how grateful I am that this has been possible.
Yet what struck me is that this does not feel like a chronic disease. I tend to think of chronic diseases as relatively stable conditions managed for many years with established and well understood treatments. Of course, many long-term illnesses are highly complicated and it is at least a possibility that I will look back in several years’ time and realise that my disease has become a chronic one. I certainly hope so, but the reality is that I am well beyond the median time for my current treatment to carry on working and it is uncertain how long this will continue.
At my last scan I realised that my way of dealing with this uncertainty is to expect the worst each time. I assume that my tumours will have grown again, and prepare myself for that outcome. Anything else is, after all, an improvement. The problem is that, surprisingly, I find I am nonplussed when the disease is stable and don’t quite know how to react. However much I try to prepare differently this happens every time and as a result my horizons rarely go beyond three months, the gap between scans.
It’s hard to express the mix of emotions that this entails, the gratitude for the treatment, anxiety about the scan, and feeling oddly at a loss when in fact things are going well. I was in a bookshop last month and my eye was caught by a book of poems. I am not an avid reader of poetry and haven’t written any since being at school. However, there was something about the style of writing that made me wonder if I could express a little of how it feels in a poem. With apologies to those of you who are experts in poetry, here is what I came up with. As with all poems it is best read slowly, and aloud to yourself if you can do so without looking too foolish.
Scanxiety
I know the right questions, I am prepared
For treatment’s next phase to come.
Along with its close friend pemetrexed
I know plat’num’s likely outcome.
I know that I might get avastin as well
Perhaps pembrolizumab too.
Of sickness and tiredness I’ve heard people tell,
Will be hard to see some days through.
I’ve thought what the impact will be on my life
Of cancer’s predictable spread,
Less travel, less working, more time with my wife
More time in the garden and shed.
I’ve accepted the worst, I’ve thought how I’ll tell
My mother, my siblings, my offspring,
That my time will be less, again I’m not well
That life once more will be changing.
So I’m ready to know the result of the scan
As I walk down that passage of doom
To be leeched by the friendly blood test man
Then I sit in the tense waiting room.
And I’m called in to see my oncologist
The expert in cancers like these,
Expecting bad news…. Then utter surprise
Told again I have stable disease.
I sense the relief, tears come to my eyes
As I try to find the right questions
For this circumstance that seems a surprise
Given all my earlier assumptions.
So grateful am I for the treatment’s effects
That I’m still in the land of the living,
One tablet a day with few side effects
My life is full of thanksgiving.
But confusion is there in equal measure
And in truth I’m exhausted and numb
We all know the story, incurable cancer
After valiant short fight we succumb.
Yet here am I still seemingly well
Though always prepared for demise
How else should I be when terminally ill?
Being well is a constant surprise.
So how to approach the coming three months
Till time brings along the next scan?
Honesty tells me I don’t have a clue
I guess I’ll just: keep calm, carry on.
- And Life Goes On - 18th November 2019
- Paul Cosford – I still hope for a cure for my cancer - 3rd March 2019
- Paul Cosford: Meeting my palliative care team - 24th July 2018
