Certain words can leave even the most stoic and poker-faced of us broken and twitchy.
Discharge.
When my wife Aurelie broached the subject with me earlier this year, she tried to use the word sparingly. Our discussions were brief, and ended with no plan of action, just a sense of impending dread. Weeks passed, and her discharge became blood. Blood became clots. Clots became haemorrhages. There was fatigue. Mood swings. Nausea. My wife became a pale imitation of herself.
And then, that feeling of not wanting to feel uncomfortable while discussing this in a doctor’s office turned into a very uncomfortable collapse in front of our family.
The only place we were going at that stage was to hospital.
Within a few days our cat-loving, cello-playing gynecologist delivered news to us of the worst kind. Stage 3b cervical cancer. There was a 7cm growth attached to my wife’s cervix, pressing on her kidney.
There was little or no emotion in the first moments after this announcement. What was flashing through both our minds wasn’t the physical toll of treatment but, horribly, the cost of it. I was filled with a swirling mix of despair, anger, guilt, remorse, denial and depression.
“What about the NHS?” you ask. Why couldn’t we just access free universal health care, that integral building block of our society, and one of the things that makes me proud to be British?
My mum has beaten cancer three times, and while this has been difficult for her and my dad, the fact that treatment was available and paid for made it somewhat easier. They could concentrate, fully, on her recovery.
But my wife and I weren’t in the UK; we were in her home country, South Africa. This is a country where there is no equivalent to the NHS. It’s private medical care or pretty much none at all. And we had no savings and no medical insurance.
My wife and I met in 2002 while working on a theatre tour in Spain. In 2003 we moved to London, got married in 2008, and in 2011 moved to South Africa. In London we both aspired to work in TV, film or theatre, me as a writer and her as an actress, and in South Africa we had a chance of actually doing this. There was a smaller industry and more opportunities.
Neither of us had ever been ill, and so while medical insurance was on our to-do list, it was never ticked off. We’re young – in our mid-30s – and felt healthy and immortal; as freelancers in industries where it can be difficult to scrape by, we struggled to budget for medical insurance. A hefty monthly payment for something we never thought we’d use seemed a silly expense.
It obviously doesn’t now.
The value of hindsight? Well, at the moment it stands at £10,372.96 – give or take a few pennies, depending on the exchange rate. That’s the cost of six weeks of radiation, chemotherapy and all associated checks, prods, pokes, drugs and consultations. After the very last and probably most intrusive session of radiation (brachytherapy) the 7cm intruder we called Fred had shrunk to about 1cm. But my wife’s treatment is certainly not over.
In mid-September there will be a scan to see if the treatment has worked, a consultation will accompany that scan, and there will be ongoing treatment, not just for the weeks ahead, but years. Hormone pills must now be taken every day for the next 20 years or so. There are check-ups every three, six, and then 12 months. And all of that is chargeable. And although I can’t bear to think about this, let alone write it, there is the possibility that the cancer hasn’t gone. There is the possibility that Fred will have returned, stronger, and ready to cause more damage.
On the plus side – I’m not joking – some treatments were offered at a discount if we paid in cash.
We considered whether it would be possible to come back to the UK for treatment, but looking at the costs this didn’t seem to make sense. Of course, treatment on the NHS – waiting list willing – would have been brilliant, but when we considered flights, accommodation and living expenses, the zeros started to add up. Plus, we have a life here in South Africa, a life we want to continue.
We have fundraised for the money we’ve had to spend so far. There have been comedy nights, dance and yoga sessions, and quizzes; the tattoo shop where my wife earns some extra cash staged a tattoo-athon where regulars, first-timers and ink-fiends came to be drawn on, with each fee going into a pot. I’ve had the chance to find out that everyone thinks my wife is as amazing as I do, and we’ve been privileged to see how kind people can be. Friends have been quick to act in setting up funding sites and organising events, family have been quick to reach into their pockets, and even people we don’t know have donated to us, moved by our situation. This support has enabled us to raise about 60% of our bill so far, but besides strictly financial considerations, the way people have rallied, messaged us, checked in, lightened the mood and offered their help has been a tremendous boost. If our faith in humanity had ever needed restoring then this would have been achieved by now, to the power of 10.
But then faith in humanity is a fickle thing. For all the generosity and empathy that has been expressed towards two people struggling to afford life-saving medical treatment, there are still those who cannot see the value of the NHS, a service for which I now have a renewed respect, love and sense of its importance.
I do understand how people can be so oblivious. When I lived in the UK, I’m ashamed to say the NHS wasn’t something I took for granted – worse than that, I didn’t even think about it. I didn’t have to. Having grown up with it, I took it as a given. But looking at what my wife and I have been through, it’s obvious that being oblivious is no longer an option.
We sit in South Africa, waiting now, trying to get on with our lives as the days crawl by to the September scan. We sit with fingers crossed, saying our prayers, sending out positive vibes … only the results will let us know where our lives will go next.
I would not wish our experience on anyone but I do wish that everyone could have our sense of hindsight, of how lucky we are to have the NHS in the UK. It’s something we must all fight to protect.