Shitty days in The C Word

Have you ever sat and watched your loved one die a slow and terrible death? That’s what it feels like some days, with my mum.

When the consultant told her her MDS had relapsed and her transplant had failed, he said she likely had months to live. The following week she saw the other consultant who’s the leading guy in MDS treatment and management and he said she could have chemo, with a view to potential remission and a top up of donor cells. That was back in August, and we still haven’t even got as far as starting chemo. Part of me wonders if the first consultant foresaw something the other one didn’t want to admit - haematologists are notoriously bad at knowing when to stop and think they can fix anyone if they just keep trying (I work in haematology so I’m well placed to say this!)

She had a 3 week stay in hospital in august with an infection, but was never really fully well since then. Spent the whole of September and October feeling just so so, going to be assessed for chemo and being told to see if she had improved by the following week, which she never really did. She’s now into her 4th week on this latest hospital admission with sinusitis. She’s had two courses of antibiotics and antifungal medication. She was due to come home yesterday but since they stopped the antibiotics she’s not as well and the sinus pain is back.

The latest is she’s back on antibiotics and awaiting another ENT review with a view to potential minor sinus surgery. They keep saying they’ll have her home for Christmas, she keeps saying she’ll check herself out if she’s not ready for discharge. She spent last Christmas in hospital and had to watch the grandkids open their presents on FaceTime, she’s not prepared to do it again this year. With her future being so precarious, of course the thought in the back of all our minds is that this could be the last Christmas, we desperately want to spend it together.

As far as chemo goes, she’s had a bone marrow biopsy, so we’re awaiting those results. In all likelihood they’ll come through mid December so it could be a very miserable time if her disease has progressed and they don’t think chemo is a viable option anymore.

On the one hand I know several of my patients have been in the same position, had chemo and have lived several years, or are still living after several years, which is more than we can even dream. But a lot of me thinks why would we be that lucky when the very fact we’re in this position means we’ve been so incredibly unlucky to begin with. Literally the odds of her developing this condition with all its variants is one in a million. If it had to be anyone, it would be her, she’s that kind of person, but it still stings.

We’re all just doing our best trying to get along and learn to live with this new life, where we have to mindful of every sniffle the kids have, every time she feels unwell we’ve got the hospital on speed dial. The weeks without seeing each other, the FaceTime calls. The fact that our toddler children think hospital is normal, that blood tests are normal, that the beeps of the hospital machines are fascinating.

I can’t bear to think about losing her but at the same time if it’s an imminent inevitably she’s already suffering and it’s heartbreaking to watch. I don’t know how my patient’s families do it for months and years - except I do, because we are. There’s no other choice. One day at a time. One shitty day at a time until there’s a less shitty day. Finding normalcy where there is none.

Being a cancer nurse is so much easier than being a cancer daughter, that’s for sure.