The things they don’t tell you about cancer

The things they don’t tell you about cancer

Photo by Malik Earnest on Unsplash

The efficacy of my Dad’s immunotherapy treatment has plateaued. Its ability to hold back the cancerous tide is less effective. With so few alternate options available at this grand age of 83, the doctor suggested reintroducing Lenalidomide.

For context, dear reader, Lenalidomide is a brand of chemotherapy. A small, innocuous pill that put my Dad in hospital for 17 days after just one cycle, less than four months ago. And the doc is suggesting an encore.

The tricky thing about being a witness to someone else’s cancer is perspective. Your benchmark is based on the decisions of a healthy, vital person. Theirs is the output of someone diminished by the relentless march of cancer, a lack of executive function and vastly reduced short-term memory. You just aren’t on the same page. Or even the same book.

For my Dad, survival at all costs seems to be the holy grail. Quality of life equates to the ability to breathe and move independently.

By contrast, his inability to go anywhere by himself, drive, read, socialise, garden – all the core activities that defined his very being just a few years ago – strike me as a life of diminished value. Hardly worth enduring the toxic effects of chemo, to prolong, surely?

I understand how unqualified I am to speak on his behalf, to decide the value of his remaining abilities. But I also don’t know what he thinks or feels, whether he enjoys any of the scant activities available to him. And he certainly wouldn’t offer that insight either. A man of his generation avoids reference to feelings, fear, the gaping, bottomless call of the hereafter. Instead they slap on a game face, choose whatever medical intervention is offered and cracks on.

And we, the witness, must support any plan of action decided upon. Even if our loved one admits they cannot remember how ill they were just four months ago as a result of the treatment regimen they’re about to restart; the memories of that lived experience are no longer within their grasp and the impact thus unfathomable.

I find myself, once again, marvelling at the gaps in information provided to us at the beginning of this journey, and the naivety with which I stepped into the role as co-carer.

All the obvious boxes have been ticked; weight loss, fatigue, diminished appetite.

But I made no headspace for the lesser known intricacies of cancer.

The absence of short-medium-term memory.

The loss of executive function (putting plates and cups into a biscuit tin and clean washing into a rubbish bin because the memory of the steps of a routine have been lost).

Circadian rhythm disturbances so severe that night and day blend into one.

The paranoia and aggression caused by steroids.

The list is endless and rarely spoken of. So too are the windows of opportunity to discuss such matters with the oncologist privately.

Appointments are gold dust and prioritise the patient, quite rightly. But what about the important, unpalatable, observations of the witness? The incidences of incontinence, belligerence, confabulation none of which the cancer sufferer is aware of but which aptly speak to their current baseline.

This journey is one of smoke and mirrors, converging perspectives and secrets one must keep.

On we march.