Why coping with life after cancer is harder than the treatment

She endured surgery and gruelling chemo. But, five years on, Stephanie explains why coping with life after cancer is harder than the treatment

  • Stephanie Butland was given the cancer all-clear, after two years of treatment 
  • She claims the journey doesn’t end after the doctor says the cancer is gone
  • She felt a sense of purpose following her doctors plans to cure the disease
  • Stephanie recalls celebrating her 40th birthday after the worst of her treatment
  • Research suggests around 20 per cent  of survivors have feelings of depression
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Standing in my garden on a glorious afternoon, surrounded by those who love me most, I had a depressing epiphany: life was never going to be ‘back to normal’ again.

We were having a party to celebrate my 40th birthday, almost a year after the worst of my treatment for breast cancer had finished.

Apart from check-ups and having to pop pills, that wretched disease was meant to be firmly in my past.

Yet here I was, amid bunting, booze and spent party poppers — and all I could think was how, incredible as this may sound, adjusting to life after cancer was in some ways harder than the hell of going through it.

The thing is, when you’re a cancer patient, everyone expects you to feel dire. If you’re weepy, people say ‘no wonder you feel down’ and urge you to cry it out. Allowances are made if you get a bit snappy.

Stephanie Butland (pictured) experienced two years of intensive treatment for breast cancer followed by gentler drugs and check-ups. She shared her journey since receiving the all-clear

No one raises a judgmental eyebrow at you for suggesting yet another takeaway instead of cooking. If you want to spend the whole weekend on the sofa watching television box sets, who’s going to argue?

And while the treatment was horrendous, my part in it was clear and simple: I went where I was told to go; I did as my doctors ordered.

Following their plan gave me a sense of purpose — I knew I was doing the best I could to give myself a chance.

But then suddenly I was out the other side and there was no one showing me the way any more. I felt lost: unable to slip back into my old, pre-cancer life but also not quite ready to move on.

Once you get the all-clear, there is a seismic shift in the way people view you. You go from patient to survivor and somehow, despite still feeling battered and emotionally exhausted, you’re supposed to greet every day as though it’s a huge celebration.

If you’re down in the dumps, people urge you to think how much worse things could be.

As my friends and family gathered at the party for my 40th, I knew what everyone really wanted to celebrate was the simple fact I was still alive.

Their intentions, of course, couldn’t have been kinder. They had all watched me suffer and lived with the awful uncertainty of whether I’d survive. Seeing me float cheerfully around the garden, accepting gifts and sipping champagne, must have felt like a line being drawn under a terrible time for us all.

Stephanie (pictured) revealed she has had a fear that the cancer might return since been given the all-clear. She suffered from recurring nightmares after she was diagnosed

Yet for me, cancer continued to feel part of my present. I couldn’t imagine a time when I wouldn’t feel shaken by the most terrifying period in my life.

But who wants to hear about that, once the medical crisis has passed? You are ‘well’ again. So you plaster a smile on your face and keep your feelings in.

Yes, I was cancer-free. But my hair was still growing back, and the scars on my breast served as constant reminders of all I’d been through. Worst of all, I’d lost my sense of invincibility.

A recurring nightmare that had started soon after my diagnosis continued to haunt my sleep. Three years on, I still regularly dreamt I was plunging from great heights into deadly, icy waters.

Even on that perfect afternoon, the fear my cancer might return remained as real as my horror when I was first told I had it.

What is life like for cancer survivors?

About 40 per cent of cancer survivors report having moderate to high anxiety. About 20 per cent have feelings of depression

Of course, declaring ‘actually, I feel God-awful’ is never going to feel like the right thing to say, even if those words are playing on a loop inside your head.

I know I’m far from alone in feeling this way, although it’s not something many people are likely to admit. You don’t want to sound ungrateful to those who are so happy still to have you around.

At the heart of this problem, I believe, is the narrative that turns cancer into some kind of glorious battle. As sufferers, we are told we’re strong and fearless. Those of us who pull through are branded survivors — warriors who took on the most heinous enemy and won.

But I know there was nothing remotely brave about promising my family I wouldn’t die, only to wake in the night and start planning my funeral, convinced that this was the beginning of the end.

Signing the consent forms that allowed my surgeon to remove diseased tissue from my body didn’t feel warrior-like at all. That, and everything else I did during months of hospital visits and treatments, was just an act of survival. Which is why, when people called me brave and said they couldn’t have endured my treatments, I had to stop myself snapping: ‘Of course you could —because the alternative would have been to lie down and die.’

Stephanie (pictured) was diagnosed with breast cancer at age 37 despite having no history of the disease in her family. She claims the journey doesn’t end after the disease is gone

I can’t be the only person who has been told ‘well done, you won’ and thought: ‘What if I’d died. Would you have called me a loser?’

My cancer was aggressive but caught early enough for me to avoid losing my breast. I had noticed a lump on my right side when I got out of the shower one morning, as it poked out where I’d wrapped my towel.

There is no family history of breast cancer, which added to my shock. Because I was so young — 37 — it was decided that with surgery to remove the tumour, plus chemo and then radiotherapy, there was a good chance it wouldn’t come back.

The next two years were hellish. There was post-operative pain, along with side-effects from steroids and chemotherapy that went way beyond the misery of ending up fat and bald. I had constant nausea and crippling cramps in my legs that made me scream with pain at night.

The drugs caused problems with my heart and lungs, so I felt out of breath. Radiotherapy left me with crushing tiredness.

I had to deal with all this and somehow still be emotionally available to my children, a son and daughter aged just ten and 12 at the time.

My husband was a rock, yet try as he might to hide the fear, it was never far from his face. Meanwhile, overwhelming support from a small army of people made it possible for my tumour to be removed and every stray cancer cell killed off.

From our family GP to my surgeon and so many hospital staff, every effort was made to make me well again. Family and friends offered endless support, from picking the children up to dropping off cooked meals and running me to appointments.

I spent two years desperately wanting to be well again, with a team of fierce advocates on my side. But after the all-clear, things became more complex. I no longer had anyone telling me what to do next. Instead, a whole new crop of fears emerged.

Once, someone asked me what lifestyle changes I’d be making to help prevent my cancer returning. She would never have said something like that when I was being treated.

She didn’t mean to send me into a guilt-ridden turmoil, wondering for the umpteenth time ‘was the cancer my fault?’. But when you’ve asked yourself that question a thousand times, such comments don’t help.

It is now five years since I received the all-clear, after two years of intensive treatment followed by three of gentler drugs and check-ups.

Things are definitely easier, but even now, I worry that if someone sees me eating a cream cake or pouring a second glass of wine, they’ll wonder if I brought the disease on myself and think I’m only making it likelier to return.

I’m not saying for a moment that women like me will never learn to live with our scars, both physical and emotional. Or that people should tiptoe around us.

But this is a journey that doesn’t end when the doctor says ‘your cancer has gone’. It turns out there’s still a long way to go.

Stephanie Butland is the author of The Curious Heart of Ailsa Rae, published by Zaffre, out now.

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