Aside from the disease itself, the fear of talking about cancer, asking questions or simply acknowledging one has it, can be deadly.
But what is worse, patients say, is when they cannot express their feelings and theories to a doctor without getting dismissed and ignored.
“Just listen to me, listen to the patient,” Salwa Al Rahma, a survivor of two bouts of cancer, likes to tell doctors who are treating and working with patients like her.
Mrs Al Rahma was 17 when she found a lump near her neck. The Emirati was in her first year at university and, while she worried what doctors might confirm about the lump, she pushed ahead and went to several hospitals for a diagnosis.
Now 45 and a mother of five, she says: “They misdiagnosed me. They said it was tuberculosis.
“I would tell them, I don’t think so. I read up on it and I didn’t feel those symptoms but they would brush me off, telling me they know better.”
It was only when she went to Britain that experts diagnosed Hodgkin lymphoma – a cancer originating from the white blood cells.
“I always tell people, trust your body. Listen to it. It tells you when something is wrong,” says Mrs Al Rahma, who has become a role model for survivors in the UAE and is one of the most vocal activists spreading awareness about cancer.
She is a member of the Positive Cancer (C+) Foundation, set up last year in Abu Dhabi to spread awareness about cancer, improve the working and social lives of patients, and provide the information and tools needed to best treat and beat the disease.
Many years later Mrs Al Rahma struggled again with breast cancer. Her survival is proof, she says, that “with enough faith and diligence”, anyone can beat cancer.
“I did it, so can you,” she says with a determined smile.
However, “despite all the awareness campaigns and so many initiatives, it is still taboo to talk about cancer, and Emirati families especially hide it when someone in their family has cancer”.
“The patient needs to be around others like him or her, to feel that hope and to gain knowledge from survivors and others struggling like them,” she says.
The theme of “being there for each other” is what the Friends of Cancer Patients Society, a charitable, volunteer-based foundation operating under the umbrella of the Supreme Council for Family Affairs in Sharjah, is building on by launching regular group therapy sessions, without actually labelling them as such.
“Sometimes the label frightens people away, especially since they are not used to social support groups,” says Dr Sawsan Al Madhi, who joined the cancer society more than 10 years ago and leads the group meetings as well as regular campaigns by the society.
The first group gathering this year was dedicated to chronic myeloid leukaemia, and held at the JW Marriott Marquis Hotel in Dubai, where patients met each other and survivors.
“We decided on this particular cancer as it is chronic, and we want to help the patients live a normal functional life where they push on with their dreams and live to the fullest,” Dr Al Madhi says.
Unlike other forms of the disease, such as breast cancer, which can be detected with a mammogram, only a blood test can show if someone has leukaemia.
Symptoms range from fatigue, vision problems, abdominal pain from an enlarged spleen, and weight loss.
At last weekend’s session, patients asked Dr Al Madhi a variety of questions, from whether the disease could be passed on to a baby, to the effects on vision, and more sensitive and delicate questions they might have otherwise been too shy to ask their own doctors.
“Leukaemia doesn’t just affect children. That is what most people are surprised about when they find out adults, especially those who have reached the prime of their lives, in their forties and fifties, are all set up comfortably and suddenly have to deal with this disease,” she says.
During the meeting, survivors and patients still having treatment came forward to offer their experiences and advice. By the end of the session, everyone was exchanging numbers.
“We will be doing this on a regular basis, where we connect the people together, get them to meet doctors and talk openly about their concerns, learn from each other and simply share their fears and their doubts,” says Dr Al Madhi, who explains that the group gatherings are open to everyone, including family and friends.
“We don’t want anyone with cancer to feel they are alone,” she says.
The Friends of Cancer Patients Society is now working on setting up a UAE cancer registry, with the aim of finding better ways to diagnose and treat different forms of cancer, along with other projects to combat the stigma associated with people suffering from the disease.
“Just be there for them, be their friend. Don’t keep asking if they are OK and making them uncomfortable. Don’t treat them differently,” advises Dr Al Madhi.
The proof is Mrs Al Rahma, who likes to demonstrate that cancer doesn’t have a “particularly look or face” by shocking people with the news that she raised five healthy children.
She recalls how some women with ovarian or breast cancer stopped being intimate with their husbands, with both partners unsure how to live with the disease.
“I will sit with you and advise you as much as I can. But whatever I say, you just have to remember that your life doesn’t have to end because you have, or had, cancer,” she says.
Her sister, Sawsan, a journalist and a mother of one, did exactly that when she also was diagnosed with Hodgkin lymphoma in 2002 – a time when her child was about three years old.
“Your perspective on life changes after you get cancer, where the small petty things don’t matter and you look above them,” says the editor and presenter for Abu Dhabi TV, which is part of Abu Dhabi Media, publishers of The National.
While receiving treatment in a German hospital, she bought a bicycle from a TV shopping channel and abandoned her hospital bed to cycle around a nearby forest.
“My family and doctors were frantic looking for me, but I just couldn’t resist going out and being close to nature,” said Sawsan, who was having chemotherapy at the time.
Like her sister, she struggled to get the correct diagnosis and treatment from hospitals here, something they would like address, with many cancer patients have to travel for treatment.
Courageous and breaking barriers everyday, the sisters are unstoppable in their pursuit of helping sufferers to live well with the disease. Their tips include advice about a better diet to lifestyle changes.
“Unless we tell someone we had cancer, they could never tell,” says Sawsan. “First of all, we need to remove the word victim. We are not victims. It is like having the flu and then getting over it with faith, medicine and vigilance.”
Her sister agrees. “Sometimes my husband gives me a hard time and asks why am I so vocal, and why do I go to all these cancer wards and go to people’s homes and sit with cancer patients,” Mrs Al Rahma says.
“I tell him, because that is my mission in life. To help others with this disease.”
rghazal@thenational.ae
