Spare us the 'tilt of sympathy', say UAE-based breast cancer survivors

Dubai: “It’s always difficult to break the bad news about cancer because nobody wants to hear it. Not that I don’t know how to do it, but because there are many aspects that come into play.”

The candid statement by Dr Houriya Kazim, the UAE’s first female surgeon who has worked with thousands of breast cancer patients for 30 years, should make anyone sit up.

According to Dr Houriya, who runs the Well Woman Clinic in Dubai, “Cancer remains the most dreaded word today. People immediately start to think they are dying - though with breast cancer, studies tell us five times more people are diagnosed with breast cancer than die from it. And death is not necessarily in the short term.”

Given the sensitivity, the pioneering Emirati doctor said, “My job is to give the patient truthful information in a way they can understand it. The delivery of the news is important. It must be done the right way and must leave them with hope in a realistic way.”

Whether it is a doctor, a friend or a co-worker, what people say and do when they encounter a cancer patient is a subject of much discussion.

Everyone means well but…

Cancer survivors let on that while most people mean well, some comments and actions can act as triggers of anxiety or depression in an already traumatised patient.

“The last thing I want to hear is that I am ‘lucky’ or ‘fortunate’ that my cancer was diagnosed early on. The terms ‘lucky’ and ‘cancer’ don’t exist in the same sentence,” said Kimberley Schofield, an American expat in Abu Dhabi, who was diagnosed with breast cancer in November last year.

She said the diagnosis of cancer, of any kind, is the most frightening and devastating experience in a person’s life because they know they have cells in the body that can kill. “I was alone when I learnt of my diagnosis over the phone. And although I was expecting that call, it was not easy to process the information. I will never forget the way I felt at that moment.”

But Schofield said she is very thankful she is in the hands of an excellent team of doctors and has a supportive family and circle of friends as well.

She also has a strong message to every woman: “For the love of God, go and get yourself checked. The bad news doesn’t get better with time.”

No ‘tilt of sympathy’ please

Shivani Radia, a Dubai-based British national diagnosed with breast cancer in September last year, also shared her experience.

She recalled how she would struggle with comments - like “you are so brave” or “everything will be fine” – and even awkward behaviour like a brazen stare or a “tilt of sympathy” – the typical sideward tilt of the head when someone just discovers you have cancer and feels overly sorry for you.

Radia, who, along with Dr Houriya, was part of a recent panel discussion titled ‘From Fear to Hope’ held in Dubai, said the community can actually play a very positive role in helping a cancer patient fight the odds.

As a fiercely independent mum of three, Radia said she can never get herself to ask anyone for help. So she is very appreciative of all those people who just take it upon themselves and pitch in, especially on her difficult days. “It can be anything from sending me a meal; picking up the kids from school; getting their costumes sorted for a show; or just making sure they get the attention they need.”

Not everyone has it in them to rise to the occasion though. Dr Aida Suhaimi, Clinical Psychologist at Camali Clinic, Medcare Hospital’s mental health partner, puts it in perspective.

She said a lot of people don’t know what to say or do when they meet a cancer patient, so they end up saying or doing the wrong things.

“Don’t feel under any compulsion to say something. Rather, try and listen – that’s the best thing you can do, to begin with,” she advised.

Cancer patients talk of how they have had to contend with questions like, "What stage is your cancer in?", "Is it curable?", "What are the chances of it recurring?" and so on. More often than not, they do not have the answers. 

Dr Aida said a cancer patient grapples with a high level of uncertainty. “This is true right from the initial pases of examination and investigations, through the wait for the test results, the diagnosis and the course of treatment. It is a very long-drawn process and at every phase, the patient feels overwhelmed with a mix of emotions.”

The emotions could include varying degrees of sadness, fear, anger, frustration, guilt, anxiety and loneliness. “So it’s important that these feelings are not invalidated. Dismissing the patient’s feelings by telling them ‘don’t be scared’ or ‘don’t be angry’ is not advisable. They need time, they should be allowed to express their feelings.”

Unpleasant feelings triggered

Ingrid Valles Po, an Indian expat, who was diagnosed with breast cancer in 2003, agrees. Cancer-free now, she recalled her own battle with the disease during which certain kinds of comments would trigger unpleasant feelings.

She said, “I didn’t want to hear something like ‘bald suits me’ or ‘the colour of your wig is nice’ when I was undergoing chemotherapy. It would just make me feel less confident. As it is, at that time, I did not know anyone else who had cancer and I was full of doubts. But I would read up a lot on cancer and later, also joined the support group Brest Friends. That helped.”

Started by Dr Houriya in 2005, Brest Friends offers patients and survivors a platform to come together, exchange notes and support each other. “Patients are full of questions and concerns and they look for an informed response. As a doctor, I make it a point to listen to them,” said Dr Houriya.

Informed response is the key

Informed response is the key because nothing can be more annoying than a barrage of misinformation for a cancer patient. Radia recalled how she would be flooded with casual nutritional advice which would leave her more exhausted than energised.

“As a patient, what I find really useful is someone being there for me in the silence and through the hard times. Someone who is practical, will turn up at my doorstep and say they will walk with me, my kids and my family,” said Radia.

Dr Aida also points to how people mistakenly think they need to quickly come up with a solution when they meet a cancer patient. “The patient genuinely needs practical help. There are two aspects here – emotion-focused coping and solution-focused coping, so one needs to work around these strategies to provide necessary help.”

Life-altering experience

Dr Barjis Sulthana, Psychiatrist at NMC Specialty Hospital in Al Nahda, sums it up: “Diagnosis of cancer is a life-altering experience for the person as well as for their loved ones. The psychological impact is emotional, behavioural and cognitive. It depends on various factors, including the type of cancer, stage, available treatment options, modality of treatment as well as the person’s personality.

She said, “Various psychiatric disorders including sleeping issues, emotional issues, depression, anxiety and panic cause a detrimental effect on the person’s quality of life as well as treatment and prognosis.”

As such Dr Sulthana stresses on the need for a personalised approach to manage these symptoms. And every thoughtful word or action, however small, by others matters towards this end.