Bolt out of the blue in The C Word

I didn’t think I’d have to write this entry.

I can’t remember if I wrote the first time my mum had cancer. She was diagnosed with Acute Promyelocitic Leukaemia (APML) in March 2011. She was living 3000 miles away in Dubai, and I was months away from qualifying as a nurse.

She had her chemo over there, which was really difficult to watch from afar, feeling absolutely helpless, missing her desperately on the long days where she was too poorly to be in touch by phone.

But, it worked, and she went into remission. In fact, the stupid thing is, she still is in remission.

But, she’s now been diagnosed with secondary MDS, caused by the chemo she was given for her first cancer. Oh the irony, right? It’s a common side effect, a lot of people have chemo then get a secondary cancer down the line caused entirely by damage to bone marrow or organs from their life saving chemo.

It’s a calculated risk, she’s had 9 years in remission. Without chemo, she’d have been lucky to live 9 days from diagnosis - she really was THAT poorly.

So now, the MDS - a blood cancer that develops into an acute leukaemia. She’s been unwell on and off for about 9 months, bloods have all been fine, until about 4 weeks ago, they weren’t. Of course my mother being as she is, can’t do things by halves, and has gone and got herself a particularly high risk strain, meaning she’ll likely need a bone marrow transplant if she’s to achieve any kind of lasting remission. It’s fairly resistant to bog standard chemotherapy and ultimately she’s 57 and usually fit and well. We’re waiting to hear from the specialist, and he is a super specialist in the condition, which I’m eternally grateful for.

The one time nursing pays off. I’m a haematology nurse, she sees one of my consultants routinely for monitoring for her APML, which is still in remission. I’m not saying other patients don’t receive the same standard of care, but there’s definitely been no messing around, she wasn’t given the choice between the two usual hospitals, both good, but one more so than the other, albeit slightly further afield, she was told which one she’s going to, because the consultant there is top notch, the Don of treating MDS, the transplant whizz.

I realise I sound flippant but I’m anything but. I’m routinely gripped by fear, I know too much, I’ve seen too much, and I’m absolutely fucking terrified. I’m not ready to let her go, and I’m certainly not ready for V to be without her Nan. But every time I think about that I feel like my head might fall off and at the moment I’m the person she can talk to about her fears and worries. My Dad is struggling, he doesn’t cope well with anything medical, he was an absolute shit show last time she was ill and wasn’t the person he should have been for her to rely on.

I’m much more level headed, she can talk to me about her fears, we can talk about dying and have a real dark sense of humour. She’s had a few tests since diagnosis last week and she’s told me the things that have made her anxious about each one - so far they’ve come back ok, which is good. She said each one feels like a hurdle to jump to get closer to chemo and transplant and she doesn’t want to encounter any obstacles that might jeopardise any of that.

It’s a nightmare, a bad dream, except I’m not sleeping and it’s actually happening.