Young survivors explain what it’s like getting back to ‘normal’ after cancer
By Ursula Sansom-Daly | ABC Health & Wellbeing (Australia) | Aug 19, 2017 | See Original Article Here
[COMMENT: Well written and important perspective for all children and young adults undergoing treatment or recovery from any type of cancer. – Alan]
Serena Weatherall was 23 and fresh out of acting school when she discovered she had cancer: stage IV Hodgkin lymphoma.
Her life suddenly veered off course as she endured months of medical appointments and gruelling chemotherapy, radiation and surgery.
Luckily, the treatments worked and Serena joined a growing group of young cancer ‘survivors’.
“When I finished treatment … [people would] say, ‘Oh my God, that’s amazing! Gosh you must be so happy! You must be over the Moon! You must have a new lease on life!'” she says.
But Serena didn’t feel over the moon at all — she was still in shock from the whole experience.
“I felt like a deer in the headlights,” she says.
Friends and family often expect survivors to feel unambiguously positive about it all ‘being over’. But this can leave survivors feeling at odds with their own, more complicated, feelings.
“[There was a] huge gap between [the] way people would expect me to feel, and the way I actually felt,” Serena says.
People dream and plan so much in the lead-up to their last treatment that when the day finally arrives it tends to — like New Year’s Eve — fall way short of expectations.
In fact, it was only after Serena became a survivor that she really started to unravel emotionally.
To understand why, we need to go back to the beginning of her story.
The shock of diagnosis
A person’s first response to a cancer diagnosis tends to be numbness and shock.
“You can’t feel the full effect of what’s happening to you in that moment, because if you did you might die,” Serena says.
She quickly shifted gears into a busy ‘coping’ mode.
“My focus became really narrow. I just had to get through one day at a time. I didn’t know what was around the corner,” she says.
“On the surface, I probably seemed like I was coping extraordinarily well — but … what’s really going on underneath is … trauma.”
Denial often gets a bad rap, but in the short-term, it can be an extraordinarily helpful form of self-protection for someone in Serena’s situation.
But fast-forward to the end of treatment, and walking out that hospital door can lift the lid on a painful mess of unresolved thoughts and feelings.
Emotions can bubble up to fill the space once occupied by endless doctor’s appointments and blood tests.
For Serena, this meant a wave of grief and breakdowns.
The physical toll
Surgery, chemotherapy, and radiotherapy take your whole body hostage, and their side-effects linger for months after treatment ends.
As a survivor, Serena was not only reeling emotionally from what she’d been through, but also struggling with the physical aftermath of her treatment.
“They give you about as much [chemotherapy] drugs as you can handle without dying,” she says.
Apart from having chronic fatigue, she says one of the most disempowering side-effects was “chemo brain”.
Often young cancer survivors won’t have met anyone else their age who’s had the same experience.
It can be terrifying for everyone — including their friends and family — to think that someone so young can become so ill. No-one has the words to make sense of what’s happening.
“I found it incredibly isolating. I didn’t have anyone that I felt really understood,” Serena says.
Not knowing how to reach out, young people often hide their true feelings and play the role of the ‘model’ cancer patient — trying to think positive, stay strong, and above all, fight their cancer.
For Serena, putting on a front included playing a comforting role for those closest to her.
Like when she told her distraught mother “everything happens for a reason” just moments after hearing her diagnosis.
Once she became a survivor, continuing with that coping mechanism meant it took her a long time to open up and get support for the inner emotional turmoil she was feeling.
The ‘positives’ can come slowly
Being back in the safety of home often isn’t enough to stop cancer from dominating the psychology of a young survivor.
Even today, the smallest things can trigger Serena to go back to feeling how she did when she had cancer.
People often tell survivors that they are “strong”, “brave” and “inspirational”. But these words can jar with someone who feels they had no choice but to deal with it.
Still, facing the fall-out of their cancer for years afterwards does forge a new kind of strength for many.
“I have incredible resilience now, as a person,” Serena says.
“I’ve got a totally different perspective than I ever did before.”
What most survivors come to realise is that the positives come because of the trauma they’ve been through, rather than instead of it.
Their new outlook on life is hard-won: through surgical scars and bald scalps; through missed school camps and work shifts; through a friend’s silence on the other end of an SMS; through watching other kids on the ward die.
It’s useful to know that the ‘positives’ can take a while to come, but not everyone will feel like a better person for having survived cancer.
“I’ve grown so much, and I feel so blessed,” Serena says. “But the vulnerability [is] still part of me. Sometimes I really feel like that little girl who’s got no eyebrows.”
Joining a club you never wanted to join
Everyone is affected by cancer differently, and some people don’t relate to the term ‘survivor’.
But whatever their differences, many survivors find the antidote to their uncomfortable reactions is connecting with others in the same boat.
A year after she got the all-clear, Serena joined an online psychological support group called Recapture Life.
Together with other young survivors, she had video conversations with a psychologist to explore new ways of coping with life after cancer.
The end of treatment is just a stage in a long journey and it may bring up uncomfortable things they need permission to think about, feel, and explore.
For Serena, her online group gave her a safe space to process her cancer experience — and move towards recovery.
“When you’re given the opportunity to be a little more vulnerable, and a little bit more open, that’s when you can start to really transform through your experience,” she says.
Dr Ursula Sansom-Daly is a clinical psychologist and researcher at the University of New South Wales. She is also one of RN’s Top 5 Under 40 scientists.