Life after cancer

The designated waiting room was more of a corridor really, an allocated space which felt like a last-minute solution to one of a thousand problems in a hospital which clearly hadn’t been built to manage the sheer volume of people coming through its doors.

I sat with my grandad—Papa Frank to us—as he nervously waited for the routine checkup that he dutifully attended every six months, an NHS requirement since he’d been given the all clear following two years of treatment for non-Hodgkin lymphoma.

Always the clown, he cracked jokes with the nurses who passed by and gave a familiar wave to the doctors who all knew him by name. They all remembered him clearly because of his sarcastic comments and quick one-liners, a quality which he’s still famous for even though it regularly gets him in hot water with his long-suffering wife. Even though his attitude seemed light-hearted to others, I could tell that the pain of dealing with cancer at the age of 80 had taken its toll, and this was simply his way of coping with a stressful situation. I held my breath as he was taken into the examination room and didn’t fully relax until we both left the hospital with another thumbs up from the specialist.

According to Cancer Research UK, the country saw 13,700 new cases of non-Hodgkin lymphoma in 2015 alone, not to mention the 30 other types of cancer cited on their website. Breast cancer is the most common form in the UK with over 54,000 new cases a year, meaning that one in eight women will be diagnosed with the condition in their lifetime. Men are most at risk of prostate cancer and there are over 47,000 new diagnoses every year, a number which has been steadily increasing since the 1990s. Charities such as Cancer Research are dedicated to raising money and in the past year they have spent £38m on drug trials. Depending on the type of cancer, survival rates can range between one and 98 per cent, but overall death rates are predicted to fall by 15 per cent by the year 2035 thanks to continued research and scientific studies.

A cancer diagnosis is no longer a certified death sentence—the NHS is preparing for new T-cell therapy which is said to put some incurable cancer patients into remission—but can instead be considered a minor health “blip” which can be treated. Patients are given options, an action plan, a strategy drawn up by experienced practitioners who successfully cure the conditions everyday. Many people are diagnosed, offered a short course of treatment, given the all clear and told to get on with life. But it’s not that easy. Life after cancer is a whole new world.

 

Annie Belasco is the 34-year-old author of Love and Remission). She was diagnosed in 2009 when she found a lump in her breast. It turned out to be grade three, fast-growing type of breast cancer which had spread to all but one of her lymph nodes. She was given extensive medical attention which included a single mastectomy, chemotherapy, radiotherapy, reconstructive surgery, IVF preservation and Herceptin treatment. Although Annie describes the process as “gruelling” she had no time to reflect on the enormity of the events and says she generally felt quite optimistic throughout.

“I had my mind occupied by appointments, medical decisions to make and always had something to look forward to,” she told me. “I saw my treatment as positive and agreed to everything that was suggested to me in terms of curing my cancer, and prevention of it returning. 
I cooperated with everything and enjoyed time in the hospital, at the doctor’s and with my physiotherapist —I felt looked after.”

Annie Belasco at the Tickled Pink Ball in 2017

Once Annie was given the all clear and declared physically well, her mental health started to crumble. The sense of relief Annie felt as a result of the much-anticipated good news was short lived, and the feeling of happiness which she expected never really came.

“I kept thinking that I should be thanking my lucky stars, not thinking dark thoughts,” Annie remarked. “I had no more appointments or operations or procedures and this made me feel insecure and unsure of my destiny ahead.” Annie went onto experience a slew of mental health issues including crippling anxiety, depression, panic attacks and a fear of answering the phone. During a routine checkup her surgeon found another lump (which later turned out to be benign) and this triggered a full nervous breakdown. Only then, two years after the initial diagnosis, was her mental health properly addressed.

 

It turns out that this story isn’t unusual. Barbara Wilson, founder and director of Working With Cancer—a social enterprise helping people affected by cancer return to work—sees this direct link between cancer and mental illness on a regular basis. She cites low mood, depression, fear and low self-esteem as the most common issues seen in cancer patients and says that it isn’t always detected early on. “Sometimes this begins at the point of diagnosis,” Barbara says, “sometimes after treatment and sometimes months or years later.”

This mental condition is often a response to the challenge of learning to cope with the physical side effects as a result of treatment such as hair loss, incontinence and erectile dysfunction. Patients with cancer (particularly urological cancers) are statistically more likely to die by suicide. Sometimes anxiety around the recurrence of cancer can be triggered by aches and pains as well as hospital checkups. This was certainly true for 42-year-old mother and nursing student Deborah Murphy, who says her post-cancer experience was “absolutely shocking”. Upon being given the all clear after breast cancer, she felt angry at the nurse who delivered the news saying, “I wanted to scream down the phone at her.”

Deborah Murphey poses with her son

A recent survey conducted by mental health charity Mind reported that 82 per cent of practice nurses feel ill-equipped to deal with aspects of mental health for which they’re responsible, and 42 per cent of practice nurses have had no mental health training at all. Barbara from Working with Cancer told me that the “psychological and emotional impact of cancer is often not mentioned let alone discussed during treatment, and people may believe they are going mad when actually what they’re experiencing is normal.”

It’s no surprise then, that people like Deborah and Annie found little or no mental health support on offer during their cancer treatment. In many cases patients are forced to rely on their family emotionally in lieu of professional care and Annie states that her mental health was barely spoken about during her appointments. “I was offered time to think but not time to talk. My mind was not considered or even explored. No options, services or choices were offered to me.”

 

There is effective care available, even if those affected have to work extra hard to seek it out. Barbara from Working with Cancer says that coaching, therapeutic counselling, CBT (Cognitive Behavioural Therapy) and peer support groups can be effective. Emily Hodge—a health psychology specialist who has supported hundreds of cancer survivors through her coaching programmes—says open and honest dialogue around the patient’s feelings should be a top priority, and that a sugar-coated “be positive” attitude is rarely helpful. “Everyone is different but as long as the person is able to do what they want, and not have another person’s version of recovery put onto them then this is important.”

It’s not until the recovery phase that there is enough time and space to reflect. “When you’re technically better and it’s over,” says Emily, “only then do you have time to sit back and think about what’s just happened and plan ahead.” Just because cancer can be managed and often cured, this doesn’t negate the long-lasting mental implications. There’s no getting around the fact that life after cancer is significantly different to the life before, and even if recovery had been medically achieved the story doesn’t end there. For those affected —like my very own Papa Fran —the physical pain may have been dealt with but the mental anguish lingers long after the final hospital visit.

 

Useful information: Counselling is available via the NHS although waiting times vary.

You can also phone the Macmillan Support Line for free on 0808 808 00 00 (Monday - Friday, 9am - 8pm). The service is staffed by trained experts, offers people with cancer and their loved ones practical, clinical, financial and emotional support.