We are the survivors! This is the message of hope and strength that they are shouting from the rooftops, so that each and everyone who is living with cancer or who has beaten what many believe, under a dreadful misconception, is a killer disease, can join them. Welcome to the recently-formed ‘CAN-SUR-VIVE’ Trust, obviously punning [...]

The Sunday Times Sri Lanka

They faced it all and they want others fighting cancer to do so too

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Sandy: Be positive

We are the survivors!

This is the message of hope and strength that they are shouting from the rooftops, so that each and everyone who is living with cancer or who has beaten what many believe, under a dreadful misconception, is a killer disease, can join them.

Welcome to the recently-formed ‘CAN-SUR-VIVE’ Trust, obviously punning on the word ‘cancer’.

There is laughter and joking and not an inkling of the usual feeling of being victims or a death sentence hanging over their heads when we meet smart and attractive Roshani Silva, 42, and Sandy Jayasuriya, 55.

The mother of one daughter, Roshani who lives in Welisara found a getiththa (small lump) in her right breast by chance eight years ago. Visits to doctors followed, an ultrasound scan and also a needle-biopsy to extract some cells from the tiny growth for testing.

It may be eight years ago, but the day she collected the ‘positive’ report is a stark memory still and her face breaks up as emotion grips her very being and tears gather in her eyes.

Immediately, both moral and physical support comes from Sandy, seated by Roshani’s side, as she strokes her shoulder.

“My husband was at work and got late to come. So I went to collect the report by myself. I couldn’t understand it and rushed to my family doctor,” recalls Roshani who up to that time had not been too worried.

As she stared at the family doctor, “his face changed”. She was gripped by shock. “Harima amaru vuna daraganna,” she keeps repeating, explaining that it was very difficult to bear.

It was a ‘secret’ that Roshani and her husband did not tell their daughter who was just 11 years old at that time. Literally, life came to a halt. They, however, did not delay but began the right treatment immediately, “tak, tak gala”, amidst numerous “prashna” (issues), mainly financial which necessitated the selling of a valuable property in Kandana and pulling out all their savings. “Geth bageta hadala thibbe (our house was also half-built),” she says recalling the tough times but also the immense support that she got from her husband, relatives and friends.

The “loku satana” is over now and even though she has undergone breast removal surgery, breast reconstruction has helped her to feel a whole woman, without loss of her femininity and this she recommends to all those undergoing breast-cancer surgery.

Roshani: Big battle is over

It is a similar tale that Sandy, a mother of a 32-year-old son, who lives in Pepiliyana tells us. Designer of wardrobes for movies such as ‘Machang’, ‘Akasa Kusum’ and many more and beautician well-known in the glamorous world of cinema and hobnobbing with the stars, she was diagnosed with breast cancer in 2013.

“I have undergone 10 operations, for various reasons including cancer, six sessions of chemotherapy and 30 sessions of radiation and am minus most of my organs,” bubbly Sandy smiles. But when the diagnosis came, the question uppermost in her mind was: “Why me?”

She lets us in on a phobia, even her husband had not been aware of, before cancer struck her.  “Whenever I passed the Cancer Hospital at Maharagama, I would look the other way. I was even scared to look at the board.”

Trying to keep cancer away from her mind, it seemed ironical that it was this very same disease which caught her in its grip.

She too has found the right people to treat her and her husband, family and friends have been around her. Some moments though have been difficult, she says, going back to the time when she had lovely black hair flowing down to her waist. With the cancer treatment, she would shed lumps of her tresses and she took the decision to shave her head. “My husband couldn’t look at me at the beginning, he was so sad,” says Sandy.

Her hair has grown back and she also urges women who undergo surgical removal of their breasts to have breast reconstruction done too, to give them confidence in their femininity and not feel that they have lost something.

“Be positive,” urges Sandy to all those out there, battling cancer, while her passionate plea to other people is that those with cancer do not need sympathy but empathy. “What we need is for people to understand and share our feelings rather than feel compassion, sorrow or pity for us.”

She pays tribute to Consultant Oncological Surgeon Dr. Naomal Perera and Consultant Oncologist Dr. Sarath Abeykoon for going beyond their jobs of treating patients and “being there” for the patients all the time.

Roshani and Sandy are just two of the ‘foot soldiers’ among many breast-cancer survivors, who are part of CAN-SUR-VIVE Trust established in April this year, mooted by Dr. Perera.

Some of the Trustees (from the right): Jerome Chanmugam, Dr. Naomal Perera, Dr. Wasantha Rathnayake and Bede Johnpillai. Pix by Athula Devapriya

“I feel that the answer to the Why? I had on my mind when I got breast cancer has come now. I’m ‘chosen’ from above to spread the message that people who are affected by cancer can beat it and lead a normal life,” says Sandy.

Although the idea of forming a support group for cancer survivors took root in the mind of Dr. Perera soon after he came back from his specialist training in the United Kingdom in 2003, it took awhile to gather like-minded people around him.

Earlier while conducting a research, Dr. Perera had attempted to trace about 450 patients who had been treated for breast cancer between 1998 and 2001 at the National Cancer Institute, Maharagama. Getting their addresses from the hospital register, he had sent off letters, only to find that nearly half got returned, with the stamp ‘No such person at this address’. When he raised a fuss that the hospital register was wrong, his Director had told him that most people who were affected by cancer gave bogus addresses as there was huge stigma attached to this disease. This was the experience which set him on the path of establishing the Trust to stand by the survivors and also dispel the stigma.

“Do you know what the No. 1 killer in Sri Lanka is,” he asks, replying without hesitation that it is heart disease and not cancer. It is lung cancer which is within the first 10 killers and not breast cancer.

“It is the fear of cancer which is deadly,” says Dr. Perera, urging women to check their breasts for lumps and growths, however tiny they may be, seek treatment immediately and be a survivor.

All about CAN-SUR-VIVE

Anyone who wishes to join and any person or corporate who wishes to support the CAN-SUR-VIVE Trust may call its hotline: 0713 161616 or email: cansurvivetrust@gmail.com

Currently on the Trust’s register are more than 200 who have survived breast and gynaecological cancer including one man who has survived male breast cancer. People have joined the Trust from far and nigh – Colombo, Gampaha, Kalutara, Galle, Kurunegala, Badulla, Mahiyanganaya and Kekirawa.

The half-day motivational quarterly sessions held by the Trust have been very interactive, with anyone being able to ask any questions, while experts address various physical, medical, psychological, spiritual and financial issues of survivors, providing professional solutions. Dietary advice, cookery demonstrations, regular exercise programmes, Yoga exercises and pointers on meditation and looking after their physical appearances are also part of these meetings, two sessions of which have been sponsored by Lanka Hospital and two more by Jetwing Hotels.

The eight-member Trust comprises Chairman Bede Johnpillai, a former planter; Secretary & Consultant Oncological Surgeon Dr. Naomal Perera of Lanka Hospitals in Colombo 5; Treasurer Priyalal Edirisinghe, a Chartered Accountant; Jerome Chanmugam, a Chartered Accountant; Consultant Oncologist Dr. Wasantha Rathnayake attached to the National Cancer Institute, Maharagama; Dimuthu Abeyesekera, the Chief Executive Officer of a securities company; Mahanama Dodampegama, Managing Director of a pharmaceutical company; and Dr. Nishani Fernando, a Medical Officer attached to Lanka Hospitals.

There is much promise in the future, with the Trust intending to form support groups for cancer survivors within each province and later at district level, while initiating a ‘Cancer Fund’, a long-felt need, to look after the financial needs of the poor survivors for their annual checkups, possible financial aid for their children’s education etc.

By 2018, it expects to organize the first-ever Cancer Survivors’ Walk in Sri Lanka to prove that it is not a deadly disease.

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