The last laugh
I battled a killer disease and still saw the funny side
Finishing my school lunch, I went to run around the playground. Suddenly, a bruiser of a girl shoved into my stomach. ‘I feel sick,’ I groaned, before projectile vomiting.
Afterwards, I cleaned myself up and went to class.
Being sick was the norm for me, you see.
I was 9 and had been born with cystic fibrosis.
The disease, known as CF, causes sticky mucus to build up in the lungs and digestive system.
It also causes wheezing, coughing, chest infections and difficulty breathing.
Back home, I told my mum, Ann, then 29, what had happened.
‘It’s your bad tummy,’ she said. ‘You must sit and let your food digest.’
I took handfuls of tablets daily, and while my friends ate fancy lunches, I had bread and butter.
Now and then, I’d pick up an infection that would floor me.
The rest of the time, I was full of life and made it through childhood without too many scrapes.
I didn’t want my illness to make me different to anyone else.
Life continued.
I hit my 20s and got a job as a waitress, and then later I worked at a radio
station as a promotions assistant.
I tried to live life to the full, spending my evenings out partying with mates.
But by the time I was pushing 30, there was no denying the fact that my health was nosediving.
I battled breathlessness, fatigue and infections.
In denial, I didn’t bother using my nebulisers or having physio to help clear the mucus from my lungs, as the docs instructed. ‘You’re burning the candle at both ends,’ Mum said, with a concerned look.
‘Look after yourself,’ my dad, Tony, agreed.
But while my parents always worried, I just tried to stay positive, make jokes.
Only, as the years passed, it was harder.
By 2018, aged 45, I’d lived much longer than I’d once thought I would.
If you could call it living… My lung function had fallen to 26% and I was on oxygen most of the time.
By then I was Public Affairs Officer for Scotland at the Cystic Fibrosis Trust but I had to give it up and move in with my parents, who became my carers.
My positive outlook was fading with my health.
Thanks to having CF I didn’t have a partner, I’d never had kids.
Now I’d lost my job and my independence too.
Then I was told I had too many complications to be eligible for a lung transplant.
Sitting at home with Mum and Dad, I held my head in my hands.
‘I might not make my 50th birthday,’ I said.
Docs thought I only had three or four years left.
Soon after, I sat in my bedroom and started writing to my two aunties, Myra and Margaret.
Please look after my parents when I’m gone, I wrote, planning to send the letters before I died.
I didn’t see my friends and gave up on finding love.
I spent my days sleeping, doing puzzles and listening to music.
I also took on my sister’s dog, a Patterdale Terrier called Snoop.
By 2019, I was sure my time was almost up.
Then my consultant had some news.
‘I’ve got a new medicine you can try,’ he said.
Symkevi, a drug provided unlicensed in the UK, was being offered to me on compassionate grounds
Docs thought I only had three or four years left
due to no other treatment options being available.
The drug boosted my health stats and stopped my lungs deteriorating further.
I still needed oxygen, was in pain, had trouble sleeping and couldn’t breathe or talk properly.
But the drug had given me a kick up the bum.
I didn’t want to sit around and wait to die.
So I decided to try an online course.
I considered art and music as things to study… Then I saw it. Stand-up comedy. I definitely had a sense of humour and had laughed myself through the toughest of times.
But was I actually funny? I signed up for the eightweek course and I loved every second.
Afterwards, I did my first show in a bar in Glasgow and the audience of 100 roared with laughter as I joked about having CF. I came away buzzing. ‘I can’t wait to get up and do it all again,’ I told Mum.
But just as my course had ended, COVID happened.
I was stuck indoors shielding, only going out to take Snoop for walks.
Then, in September 2020, I was offered another medicine called Kaftrio.
It treated the underlying causes of CF, not just the symptoms.
It had just been licensed and made available on the NHS.
I’d be one of the first to try it.
It was said to be life-changing, significantly improving lung function, helping people with CF breathe more easily and enhancing their overall quality of life.
Within days of popping the first pill, the cough I’d had all my life was gone.
Soon my energy was back and I could breathe again.
‘It’s a miracle,’ I said to my parents.
As I took long walks with Snoop, I relished every breath of fresh air.
I could walk up steep hills without wheezing.
Over lockdown, I took my comedy online via Zoom.
But once restrictions were over, I applied for more gigs and got busy writing my stand-up routines.
In 2021, after taking Kaftrio for a year, I moved into my own flat and even met Alan, then 49, on a dating site.
On our second date, we strolled through the park.
‘I should tell you something about me,’ I said, perched on a swing.
I opened up about having CF, and how a miracle drug had saved my life.
‘Cool,’ Alan replied, asking a few questions but showing no signs of doing a runner.
I knew he was a keeper, and now we’ve been together over two years.
Thanks to Kaftrio, I’ve gone from planning my death to planning my future.
I love being a comic, performing twice a week, and have even performed at the Edinburgh Fringe.
I’m not worried about dying on stage, not when I have been so close to the real thing!
You don’t need to tell me that CF is a serious disease.
But if you can’t see the funny side of life, then what’s the point?
They say laughter is the best medicine, and that’s certainly true for me.
OK, maybe second best!
My energy was back and I could breathe again
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Find out about Yvonne’s stand-up gigs by following her on Instagram @janet_ tenaj_comedy.