Words unspoken in cancer care

Words unspoken in cancer care

Photo by Ernie A. Stephens on Unsplash

Yesterday we saw my Dad’s new oncologist. Our previous doctor was – as I’ve probably mentioned – a ray of relentless positivity. This doctor less so, admitting off the bat she didn’t think the immunotherapy “would work.”

“Work” doesn’t mean cure. My Dad’s multiple myeloma has no recovery or cured milestone, only those which keep progression at bay. His immunotherapy treatment has reduced the level of cancer (measured in paraproteins) in his body around December time, but is now on a sharp trajectory upwards.

This admission by our new doctor was the closest she came to dismissing “treatment” (read: progress) as a viable concept, although she wants him to keep having it until our next appointment in a month’s time. This also includes continuing to give him a side serving of steroids which never fails to agitate him into a state of heightened restlessness, sullenness, conspiracy theorising and just plain pandemonium for up to 48 hours afterwards. But hey, only another month of that malarkey.

Crucially, palliative care wasn’t mentioned despite asking to understand what that might look like for my Dad in an email the week before.

Instead she chivvied him along by declaring “at 83 we want to make sure you’re comfortable, energised and present” or words to that effect which carried an implicit rather than explicit weight.

Sitting in his wheelchair, dressed in a tweed winter coat in the middle of May, my Dad looked like the antithesis of revival of any kind. And it was my most desperate wish that he didn’t pin any hope on this revised regimen, having been bitterly surprised and distressed by the relentless march of his cancer, despite having immunotherapy treatment.

“He’ll need regular blood transfusions” she announced enthusiastically. This isn’t our first rodeo by any means, he had a lot of transfusions to combat his anaemia during the early months of treatment but for the 4–8 hour commitment, there was rarely much payoff. Though it must be said he’s in infinitely poorer health now than he was then.

“And epo injections” she added. These apparently stimulate red cell growth in the bone marrow although can take as long as three months to work, only then, with negligible benefit, by her own admission. “You’ve given injections before” she states, more assumption than question. “Oh and you’ll need a blood pressure machine because the epo injections can cause high blood pressure. And you’ll need to start monitoring his blood sugar, do you have a machine for that?”

I’m struck by the sheer force of her expectations. Perhaps I should be grateful for movement after such stagnancy of care but I find it hard not to retort “f**k you lady”. My bandwidth is at breaking point; I’ve taken yet another morning off only to hear about all the new things I need to do as part of my Dad’s care.

But with no explanation as to the benefit, if any. Everything she has set out in terms of palliative/not palliative care feels like a case of medical whack-a-mole, a box ticking exercise that creates zero accountability to the hospital.

If, instead, she were to say something along the lines of:

This is your Dad’s status based on his latest blood tests. It’s unlikely we’ll continue giving him immunotherapy but we’ll discuss that at his next appointment.

For now my focus is on targeting his anaemia with blood transfusions, arranging for weekly epo injections which may stimulate his red cell production and help with the fatigue and monitoring his diabetes regularly.

These are the ways we can do that (1) at home (2) via a district nurse or (3) at the hospital when Dad comes in for treatment.

An explanation of what is being treated and why and options for how that treatment can be administered (rather than the assumption it’s fine to delegate to the family).

Rather than talk about my Dad’s age and assume his needs, she might have asked him, or us, what we are hopeful for or would like to see happen. Some expectation management rather than this political speak seeped in ambiguity.

Tomorrow he will begin his new regimen. I’ll be charged with the task of administering injections and fathoming what a reasonable blood pressure for someone with his condition actually looks like, in the hope I don’t send him hurtling off a cliff edge.

When he asks me why I can tell him, it’s to help with fatigue management but I can’t mention the caveat of 8–12 weeks before he might see an improvement. He has no concept of time. He may not even have that much time but he’ll trust that I’m putting him through the ringer for a good reason.

I just wish I knew that to be true.