FOR three days, after she received her breast cancer diagnosis, all Shima Hassan Marcy did was sleep and eat. She was depressed and all she could think about was that she was going to die. After all, she had cancer.
But never one to give up, Shima picked herself up and decided she wasn't going to go down without a fight.
"I was a chain smoker but the day I received my diagnosis I gave up smoking. I said to myself that if God wanted to take me, he will. But until then, I will fight. I didn't want to die. I wanted to live to be with my children and see my grandchildren go to university and all that," recalls Shima.
And so, with early stage breast cancer (at 52), she started running, quite literally, for her life.
"I did whatever I could to fight. I changed my lifestyle and my food and I got on the treadmill and started running. I'd never run before but I started running every morning.
"I'd go for my radiotherapy and come back and get on the treadmill and run. And I felt better immediately.
"So, I kept at it. Then, I completed my first 10km race, my first 21km, full marathon and I did an ultra marathon too. I also hiked to the Everest Base Camp and now, I'm cycling. "Who knows what I will do next," says the feisty 62-year-old mother of four and grandmother of six who has been cancer-free for close to a decade now.
Losing control
Being diagnosed with cancer was as much a mental and emotional battle as it was a physical one, shares Shima.
"I was lucky that I didn't feel much physical pain or discomfort throughout my treatments. I got chills, yes, and sometimes I had trouble sleeping at night but mostly, I was okay. But the disease did take a toll on me emotionally and mentally.
"I felt lost. I felt disappointed. I wasn't angry but I was frustrated.Whether it was because of the drugs or the anxiety about having cancer, but I I'd be groggy from the lack of sleep and that's when the depression would set in.
"I felt empty and lonely even though my children were around. It's hard to explain why I was feeling that way," shares Shima who lost her husband, Howard Marcy just two years prior to her diagnosis.
Being around people other than her immediate family was also something Shima found hard as she didn't feel anyone could relate to what she was going through or how she was feeling.
"I didn't want visitors. I told my friends not to visit me because I didn't feel like talking. I didn't want people's pity. Though they were well-meaning, when people told me they were 'sorry' about my diagnosis, it made me annoyed. So I stayed away and surrounded myself with my children.
"But even they couldn't do anything to help me. I had to do it on my own. That's why I ran. Running lifted me out of my depression. Whenever I felt down, I'd run and that would make me feel that tomorrow would be better," she shares.
Feelings of anxiety and extreme sadness or depression are common among cancer patients, says clinical psychologist Michelle Yap, affecting more than half of patients diagnosed with cancer.
Although every patient copes differently and some patients may not want or require support, it isn't uncommon for patients to seek professional help in coping with their mental health issues, she says.
"It is totally normal for someone's mental health to be impacted by their diagnosis. Being diagnosed with cancer is a huge life event and brings with it a lot of anxiety. It is impossible to tell someone with cancer not to be sad or anxious or worried.
"Adapting to the changes and uncertainty that the illness brings can also add to the anxiety and fear they feel.
"And, if a patient doesn't have a strong support system or proper coping strategies, they may find it hard to deal with all these complex feelings," says Yap, who works with cancer patients at the National Cancer Society Malaysia (NCSM).
How much these feelings impact a patient varies a little based on their situation, explains Yap.
"How do you know if you need help? Well, usually, these low moods and feelings come and go... they subside after a period of time and patients find ways of coping. But if the depression persists and affects a patient's daily routines and their ability to function day to day, then it's time to get help," says Yap.
Seek help
Almost two thirds of cancer patients experience some form of mental health issues and a significant percentage (20-30%) of these can lead to severe depression, says NCSM's medical director Dr M. Muralitharan.
"What people don't realise is that cancer is also a mentally crippling disease. A cancer diagnosis is a catastrophic event in a person's life that affects a person not just physically but also mentally and emotionally.
"Apart from the symptoms of the disease and the side effects of treatment, cancer has trickle-down effects... it can impact a person's finances, relationships and other aspects of their life and these can't be treated with a prescription," says Dr Murali.
If unchecked or untreated, he says, psychosocial issues can interfere with a patient's treatment: close to a third of cancer patients in Malaysia drop out of treatment for a variety of reasons that include fear, financial difficulties and the inability to cope.
And in extreme cases, untreated mental health issues have led to suicide.
A recent study (Risk of Suicide After Cancer Diagnosis in England, January 2019) of more than four million adults in Britain showed that cancer patients had a 20% increased risk of suicide compared to the general population.
In Kuala Lumpur, just last week, there was a news report of a man who took his own life after being diagnosed with Stage Three colon cancer.
"A patient of mine also recently took her own life after she was diagnosed with cancer and hers wasn't a late-stage diagnosis. But shejust couldn't cope. We really cannot afford to sweep the mental toll cancer has on patients under the carpet or think that it will go away," says Dr Murali.
Unfortunately, the mental health needs of people with cancer often get little attention during and after treatment. The focus is almost always on the physical health, symptoms and side effects.
"There is a huge gap in treating the psychosocial needs of patients with cancer. Public hospitals often don't have enough clinical psychologists to serve the many patients that pass through their doors and so patients often need to wait months to see a psychologists. In the private sector, it's expensive to see a psychologist. So where do patients go?" says Dr Murali, adding that NCSM offers free psycho-social help for cancer patients and caregivers to complement the treatments offered by the public healthcare system.
Although the mental health of cancer patients is a big concern, Dr Murali points out that often the issues patients face may not require treatment from a psychiatrist or even a psychologist.
"There is a whole group of people who need the help of a psychologist. But there is also a whole group of people who may just need to speak to a trained counsellor. Sometimes you are experiencing psycho social emotional barriers that are making your life complicated every day.
"We had one family where the mother was diagnosed with cancer and our biggest intervention for them was sitting the whole family down and drawing up a schedule where every member of the household commits to the different chores so that the patient could have the peace of mind to resume treatment. She was obsessive compulsive and kept putting off treatment because she said she could not leave her home... she had too much housework to get done. It was as simple as that," shares Dr Murali.Reaching out
As a survivor, Shima is now an active member of NCSM's Pink Unity Support Group, a focus group for women cancer survivors aimed at helping newly-diagnosed cancer patients get through their cancer journey.
"When I was going through my cancer journey, I found that I couldn't share what I was going through with anyone other than a fellow survivor because they could understand exactly what I was feeling. It helped me a lot and now I want to help others too.
"I find myself advising other women and girls, even when I am on my cycling trips, to go get checked and so on because I know how fragile life is and how important it is to get diagnosed early," says Shima.
The power of peer support, says Dr Murali, cannot be underplayed.
"Fear of getting treatment and the side effects from chemotherapy a big reason people drop out of treatment. There are other factors of course but this is one major stumbling block and what has been found to be very effective in getting patients over their fear is peer support: people who have been through the disease journeying through it with you.
"This was started in by Dr Harold Freeman an oncologist in Harlem, New York in the United States and he managed to prove in a clinical trial that survival improved by 60% for breast cancer patients through peer support. That's incredible.
"And so we have implemented this peer support programme in Melaka with the General Hospital that's run entirely by volunteers for the past five years or so. We offer all sorts of support: if a patient can't make treatment because there is no one to take care of their children, we offer them babysitting services. All our services are interlinked and they also have access to our counsellors, psychologist and dietician. We also have a play therapist particularly for our childhood cancer patients," he says.
Peer support isn't only for newly diagnosed patients but also survivors who are in remission and have to deal with annual check ups and screenings.
"For a cancer patient, the anxiety is ongoing. Every doctors appointment is something to worry about. Is the treatment working? Has the cancer spread? And even after they are cleared of cancer, there is the fear of relapse. So the anxiety is always present," shares Yap.
For Shima, even a decade down the road, the support of her fellow survivors helps her through the tough days. "I still get emotional when I think about the time I had cancer and when I look at photos of myself when I was in treatment. And talking to these women about it helps. Hopefully, my story can help another person feel like they are not alone," she says.
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