High fives and birthday blues
All the feels including the tricky ones (& the healing power of patisserie)
January is a bad month for a birthday. Especially a birthday immediately after your three-weekly treatment treble-whammy (two different chemo drugs with an immunotherapy chaser).
On the first cycle round, my ‘low’ day fell on Christmas Day and this month - because the infusion had to be postponed due to my low immunity - it fell on my birthday. What fun!
Actually, it wasn’t fun. I’m not the type to post sobbing videos because I don’t think that cheers anyone up. Yet I did say I’d be upfront with you.
This weekend was my hardest since the days immediately after diagnosis.
Honestly? Maybe even lower.
The good news is I don’t think it was entirely down to me me. I’m blaming steroids.
My birthday dawned. Gorgeous messages were popping up all over social, and lovely things arriving at my door. And I couldn’t stop crying. Proper ugly crying, but with none of the endorphin-released relief that a good cry often brings.
I also went downhill physically. After a lethargic Friday, I made myself do the Park Run on Saturday (to prove I could, rather than because I really felt like it).
But by Sunday, I could barely get out of bed. We’d arranged to go for afternoon tea as a low-key treat, but I realised it wasn’t going to happen. My mouth was numb, as though someone had stuffed it with cotton wool. Even climbing the stairs made me breathless.
Ah, so this was what rock bottom meant, in mental terms. I was literally inconsolable.
My thoughts told me this would be my life, forever. A shattered version of the plans I’d made for a chilled third age.
My rational brain didn’t even try to counter the thoughts with all the things I know to be true - that chemo effects ebb and flow, that good days would follow. That I was doing fine. That of course it'd feel overwhelming now and then.
And all the time people were sending encouraging messages and saying how strong I am1 and I felt like a fraud. So I wept a bit more.
Eventually (we’re talking hours) my tear ducts went Dry January.
And I had to do something.
In a brief moment of reckless abandon, I did something outrageous I'd never considered before. I ordered pastries to be delivered from my favourite patisserie in Brighton 2(I was thanking former Kate for moving to a place where this is possible).
Even though my tastebuds were badly blunted, the cakes were too beautiful to ignore. They did mostly taste of sugar, though, so I only managed a spoonful or two.
And then we watched rubbish reality TV until I felt sleepy and I was… not OK, exactly, but distracted so the sadness was less acute. I was still scaring the poor dog, but the cat’s glorious indifference was a small comfort as she clamoured for warmth in my lap.
Partners and friends have it hard in this situation: how do you reassure someone whose pain can’t be explained away with logic?
By holding on and being there - in person, or online. It means everything.
Very gradually, the terrifying low was replaced by commonplace anxieties about whether my test results would be good enough for chemo.
And when I woke up after a blustery, disrupted night’s sleep, the sky was blue and I was less blue. That sadness had completely lifted. How? I didn’t want to think about it too deeply, so I just took the win.
High-five
As we travelled to the hospital, I was wondering whether those lows reflected something going wonky with my physical health.
But, no, the blood tests showed my immune system is happier, though my liver is not - even though I’ve only had two sips of red wine and one sip of prosecco all month, neither on my birthday.
So chemo went ahead! Yay! And it was SESSION FIVE (of 16 - almost a third done) which merits a high-five for sure.
The prime suspect: dexamethasone
So why was I so sad?
Talking to my chemo nurse about it, she said, ‘those mood swings could be the steroids.’
Lightbulb moment. It totally made sense. They’re given to help with nausea and reactions but are only prescribed after the treble-whammy - and during the first cycle, I managed to take half the dose because I got mixed up.
So this time I had three days and nights of steroid invincibility (culminating in the Park Run) followed by a crash and burn like nothing I’ve experienced.
The RELIEF of knowing was the best birthday gift
That intensity of low mood didn’t feel like me. I do get down days, don’t we all? And I think I would have been grumpy anyway, thanks to my bittersweet birthday malaise/January storms/the fact I should be in bloody Tenerife on the cava right now.
But the visceral, chemical nature of it was shocking, yet now explicable.
Will it help me when/if it happens again? I hope that I’ll be able to point at the calendar, do the steroid sums and say, ok, yep, that’s a sucker punch. Don’t believe it’s a knock out blow.
The Return of Sweetness
I sharing this because I know I'm fortunate that I can. I’m fortunate that I can afford to be honest. Others might feel unable to share to these emotions because they fear consequences at work, or don't want to burden others. But your feelings are real.
On Sunday, my future felt shattered. Today, life feels more like a mosaic, with dull tiles and shinier ones waiting to catch the light. One happened just after chemo.
After we got home, we finished off the pastries. Oh my days: the pistachio éclair tasted of a sweltering, stormy summer holiday in Liguria. The lemon meringue took me back to my mum’s misty kitchen on Sunday afternoons. The apple pie had the flavour of French autumn, with enough tartness I could imagine I’d just swigged ice cold cider in a dappled orchard.
Sometimes, recovery is sweet, speedy and delicious.
It’s not that I don’t appreciate the messages. I do. So please keep sending them!
Julien Plumart. Words cannot convey how good this place is. Also available on Deliveroo for emergency dopamine hits.
Something I found very difficult when plunged into the alien world of illness is that you yourself have to be a quick learner. New language, feelings of euphoria (“the staff are all angels…I’m so lucky”) and resentment (loss of autonomy, agency, control), dealing with the physical stuff which is infinitely compounded by uncertainty and emotional stress.
I was a career NHS professional, being a patient was infinitely harder.
Kate, it’s so important to share the downsides.
Thank you.
When people say you're strong that doesn't only apply to being tough enough to get through this (which you are). It's also being strong enough to be honest about when it all feels a bit shit, with yourself as well as other people. Not everyone can, but you're doing it brilliantly.