A cancer survivor's ongoing struggle

"When I was told I was in remission, everyone around me was thrilled. But I just felt numb."

Alison, a 54-year-old mother-of-two, had just undergone months of treatment, including surgery and 30 gruelling rounds of radiotherapy.

Being diagnosed with a rare and aggressive cancer of the salivary glands in April 2011 had been devastating. Now, almost a year on, she'd completed the treatment, doctors were pleased with the outcome - surely she was over the worst of it?

But, though it's easy to imagine Alison's reaction to the news was sheer relief, this wasn't quite the case.

"I just couldn't accept it," she explains.

"I was very angry at having been let down by my body in the first place. I didn't smoke, exercised regularly and did everything right, yet I'd still got cancer.

"Even though the doctors were telling me I'd now healed, I still felt angry and confused."

Alison says she was "reluctant" to believe she was actually going to be OK, and struggled to shake the fear she'd felt after her diagnosis.

"Cancer's a bit like Hotel California," she says.

"You can check out, but you can never leave. I still feel the fear and anxiety about every lump, bump and unusual sensation. It never really leaves you."

Alison's surgery left her with facial palsy too, meaning one side of her face droops, a constant reminder of the cancer.

Of course, she's happy and grateful to be alive.

But gratitude doesn't eliminate the fact that coming to terms with the experience, the anger and confusion and the changes to her appearance have been a massive struggle.

The media loves survivor stories - but often they paint a picture of people coming through a traumatic experience with a new lease of life, sudden urges to conquer the world and live every day as though it's their last, worry and negativity a long-gone thing of the past.

While finding the positives to life's challenges is indeed something to celebrate, little attention is paid to the difficulty of life after serious illness. And overlooking the emotional impact of this phase can make it an extremely isolating time.

"There is definitely a lack of awareness of the ongoing emotional impact of cancer. When medical treatment is finished and the obvious symptoms subside, many people assume that things will simply return to normal," says Joy Reymond, head of vocational rehabilitation services at Unum, an income protection specialist.

"But it takes time to make the adjustments to the psychological changes, as well as to adapt to the longer term and sometimes more subtle consequences; fatigue, memory loss, lack of confidence and fear of recurrence."

Unum is working with the charity-run Maggie's Cancer Caring Centres (www.maggiescentres.org) on a campaign supporting people affected by cancer back into work.

Reymond points out that many of the longer-term consequences of serious illness, such as exhaustion, depression and anxiety, can be "invisible" to others, so it's easy for people's needs regarding these difficulties to be missed.

"Often cancer patients look well, and are therefore expected to fulfil the same role as before, but don't feel well.

"At work this can lead to misunderstandings and difficulties in making the necessary adjustments, such as taking on a less demanding job or fewer hours.

"Employees can be very reluctant to ask for even the most reasonable of workplace adjustments, for fear it'll put them at risk of losing their job, while others feel the support quickly drops away once they're back at work," Reymond explains.

"Cancer is a life-changing illness that can cause deeper psychological issues. Yet there is a lack of knowledge among both people with cancer and employers as to what physical and emotional changes to expect during and after treatment."

Emma, 40, was stunned by how hard the emotional catch-up hit her following her treatment for ovarian cancer.

Although the surgery and chemotherapy had been gruelling to endure, it was after treatment had ended that she "hit rock bottom".

"I didn't expect it to happen," she explains.

"You think you're going to be elated, and everybody around you thinks you're going to be elated, but you're not."

Now, almost two years on from her diagnosis, Emma realises that much of the psychological struggle she experienced was rooted in the identity shift that often follows a life-changing trauma.

It's this, she says, she found most "painful and the biggest struggle".

"The way in which you frame yourself has suddenly had to shift. It's an enormous thing and although what's just happened physically, and all the treatment, has been very much within a timeframe and has happened, in relative terms, quite quickly, the catching up with it, mentally and emotionally, is a much longer journey," she explains.

Emma now acknowledges that she was going through a grieving process in a way.

"It's the grieving of an identity that one might have held on to, and for a future that's no longer to be," she explains.

"And it takes a long time for that space that has been left kind of vacant to be filled with new possibilities. It has to stay vacant for a bit in order to be processed and worked through, and you sort of have to sit in that dark room of loss for a while before new things can be welcomed into that space."

Support from Maggie's made a world of difference. The centres offer a range of services, including yoga and nutrition advice, as well as counselling, which Emma found extremely helpful - partly because the counsellors are trained to recognise this element of the cancer journey and being given permission to "own and talk about" how she was feeling helped unlock the emotional complexities.

She admits she sometimes found it hard opening up to friends.

"I felt as if I couldn't keep saying, 'I'm still feeling rubbish', 'Yes, I'm still in the same place'," she says, acknowledging she felt unable to admit she hadn't just "got over it".

This pressure crops up for lots of people coping with the emotional fall-out of illness, and it's something that not only exists within society, but within our own heads.

When Sophie, 37, was diagnosed with ovarian cancer in 2009, she managed to remain "strong, determined and positive" throughout her treatment.

A month afterwards, she went back to work, convinced she was doing the right thing. But another three months on, things came crashing down.

"I began suffering terrible aftershock," she says.

"Not having had time to digest the enormity of having been so ill, I descended into a negative spiral of deep trauma and felt constantly anxious and weepy.

"I had been warned that the emotional recovery would be a 'bit up and down', but I didn't expect to feel as traumatised as I did, which shocked me and my family.

"I kept thinking, 'Why don't I feel happy? I'm not ill any more'."

It was Sophie's mother who eventually urged her to seek counselling, which proved a turning point.

"I had to give up my job and take time out, in order to recovery and actually feel like the old Sophie again. This took me a year and was one of the most challenging things I've had to do."

Sophie's keen to raise awareness of the ongoing challenges of cancer, and now supports the Eve Appeal, a cancer research fund (www.eveappeal.org.uk), in the hope that sharing her story will help others.

Since having cancer, Sophie's married and had a baby; life's good and she's happy - but working through the "aftershock" was vital in order to reach this point.

Sue Read, a professor of learning disability nursing at Keele University, is not surprised by stories like these.

"Having a life-limiting condition or serious illness is like being on a rollercoaster ride," she explains.

"Even when the rollercoaster stops - when you're told you're OK - you're still living with the possibility of a recurrence, so it's very much and ongoing experience.

"And serious events never happen in a vacuum - they always happen within a social context. So it's not just the illness you're dealing with, but the impact on and reactions of your friends, family and colleagues, and these things play a big part in the overall experience too."

Read thinks author Ted Bowman's analogy sums it up well, when he describes the impact of life being "shattered" - "Something major happens that threatens your future and security, and your life is seemingly in pieces. You then try to piece it all back together again and the new life will never exactly match the old life before it was shattered."

Often, Read says, there's an inevitable period of consideration about what changes to make within the "new life".

A big part of the problem, she believes, is the fact that many of us are bad at talking about difficult things. Lots of us find it hard to tell people if we're struggling, and equally other people often don't know how to ask somebody who's been through something difficult how they're doing, opting to say nothing instead.

"Sometimes just saying something simple such as, 'I'm really sorry you've been so unwell, it's really great you're back but if there's ever anything at all I can do or help with, just let me know. I am here for you'," Read advises.

"That gives them the invitation to talk about it if they want to and also acknowledges that it might be a very difficult thing they're going through, which can make a huge difference."

Writing things down can be therapeutic too, she says - which is something Alison's found with her blog (sweetestthing-ali.blogspot.co.uk).

The blog began as a way of keeping family and friends informed about her treatment but became increasingly important to Alison as her journey's gone on, as a means of making sense of the experience and ups and downs along the way.

Alison now also volunteers with the charity Facial Palsy UK (www.facialpalsy.org.uk), which she's also found helpful, as well as returning to her beloved exercise regimes.

"I've been a runner for years - I'm not fast, I'm a plodder, but I love it," she says. "Writing and returning to exercise has been a lifeline."