Twenty-four-year-old Susanna Jamal is a young woman full of life who is never lost for an encouraging word for others, even though the experiences of her own life would have caused the fittest of stalwarts to falter.
At the age of sixteen she lost her left leg above the knee to bone cancer, and while she has had some turbulent years she tells the Sunday Stabroek that many “guardian angels” coupled with her positivity have seen the experience make her stronger, and she uses that experience to help others.
Susanna is one of the many young people in the 15 to 40 age group, who have been diagnosed with cancer in Guyana, and while she has survived many others have succumbed to the disease. According to radiation oncologist Dr Narendra Bhalla of the Guyana Cancer Institute this is so because many of them are seeking treatment far too late.
That was the case for 29-year-old Mary (not her real name) who was diagnosed with cervical cancer when it was too late, and even though she had emergency surgery to remove her uterus, she died shortly after.
According to statistics seen by this newspaper, from 2000 to 2011 some 938 persons between the ages of 15 and 40 were diagnosed with cancer, of which 686 were female and 252 male.
Dr Bhalla said that most of the cancers he sees are cancer of the cervix and breast. In 2011 alone 117 persons were diagnosed with cancer and 41 of those cases involved cervical cancer and 29 breast cancer.
Dr Bhalla, who has been working in Guyana for the past six years, said he has seen an increase in all kinds of cancers among young people, and he put this down to lifestyles.
He said, “more and more young people are coming, even with breast cancer – I have an 18-year-old girl, 26-year-old girl with breast cancer – and cervical cancer coming like around 35 and 29, and they used to come about 40 plus and fifties, but now they are coming younger.”
He said young children and teenagers are diagnosed with leukaemia and lymphoma and other cancers which are more genetic in origin. Some other cancers such as head and neck, colon and lung are seen among the young, both male and female.
“The dietary habits plus less exercise, we are not doing our physical activities regularly like we are supposed to do, plus alcohol, smoking along with the vegetable food that we eat, the chemicals with that and all the preservatives in those things [can cause cancer],” the Indian born oncologist said.
Dr Bhalla said that if persons went for screening early and for check-ups, then cancers such as those of the cervix and breast could be detected early and could be cured. However, sadly persons visited with advanced stages of cancer when it was oftentimes difficult to treat.
But he said it is encouraging to see some persons walking in for check-ups even though they have no complaints, and he said more persons should take this path. He recommended that young people change their diets, eat healthy, try not to eat too many fatty foods and not to smoke or drink, since this could help them avoid cancer.
“Fresh food, fresh vegetables, fresh meat are always good,” Dr Bhalla said.
The vivacious Susanna recalled that as a tiny athletic 11-year-old she always suffered pain in her left leg, but she and her parents put it down to strenuous days because she was so active. But one day she noticed that her left leg had started to swell above her knee, and at first they felt it was a sprain and it was rubbed and treated at home for a while.
“But it wasn’t getting better, it was getting worse, and then I went to the doctor and they did some tests and then that is when they first suspected it. Well I took it really, really hard, because you know hearing about cancer at that time it was like that was the end,” she recalled.
Her mother was also devastated, and Susanna was forced to leave school for about a year. She went to neighbouring Trinidad where she did a biopsy which confirmed she had cancer, but because she was so young the doctors were hesitant to do an amputation and instead took out the tumour.
Life went back to normal and the St Joseph‘s High School student continued her schooling and was still very active. But tragedy struck five years later when she was 16 and was preparing to write CXC.
“One night I was just passing my hands on my leg and I noticed the lump… and I break down right there and started to cry,” she said, adding that she remembers the moment as if it was yesterday.
The family did not want to take her back to the doctor as they did not want to hear that the cancer was back, even though it was suspected, and as a result the process was delayed and other treatments were tried. But the leg got worse and eventually she visited a private hospital where an MRI was done and it showed that the cancer was progressing rapidly.
“It reached to a stage where I couldn’t walk any more; it was spreading rapidly and it reached to a point where I was screaming in pain and I was begging them to do the amputation,” she said.
In those painful moments Susanna said she had decided that it had to be done and she was even positive about it. It must have been her realistic and positive outlook on life that saw the doctor in Trinidad “taking me under his wing and treating me like a daughter instead of a patient, and I lived with him while I was in Trinidad.“
The amputation was scheduled for the day after Valentine’s Day eight years ago, but when she arrived in Trinidad the pain was so great, her blood count so low, and her stomach was shutting down, that the doctor said they could not wait so she was rushed to the hospital on the day when most people were celebrating love to have her leg amputated at the age of 16.
While she had prepared herself to have the leg amputated, when it was about to happen she changed her mind and started to cry.
“I remember the doctor coming and whispering in my ear and telling me you have to do this and he said… in a few years you will tell me you are happy you made this decision, and I remember them going around me and all of them holding hands and praying, and next thing I knew I woke up and that was it and my leg was gone,” Susanna said.
She still felt an imaginary leg when she woke up, she was in a lot of pain and she was screaming at the top of her voice, but it was more from the reality that she no longer had her left leg.
Following the amputation Susanna was treated in the doctor’s home and it was there she said she developed a ferocious appetite for reading and learnt so much. One of the things she learnt was that she must have a positive outlook on life on the road to recovery. She at one point stopped her mom from coming to see her as she always broke down and cried and she did not want that.
“I had too much of the negative vibes before I lost my leg, to an extent of a nurse telling me I wasn’t going to survive… and you know you didn’t want that around you,” she said, recalling that four days after the surgery her doctor told her she had to get up, and even though she was depressed she knew it was the right thing to do.
In tears she got up and exercised, and within a week she was back in Guyana and Varshnie Singh, who was always like a godmother to her, took charge and told her to get out, and she started to volunteer for Kids First Fund full time. She went out with her friends without the prosthetic, and Susanna said she found solace in reading and getting dressed up, and she returned to her studies.
Susanna had slipped back into a normal routine until one day a year later on the morning after a sleepover with her friends, she was brushing her teeth when she started to vomit blood.
“It was like pure blood… and my friends they were holding me and I was throwing up all the time, the blood was coming up so much,” she said and she was rushed to the hospital where a test revealed that the cancer had spread to both lungs.
“That shattered me, I gave up completely; I felt lost, but then I said I got through what I thought would have been the worst in my life,” she related, but when told she had to do chemotherapy her faith slipped again as she remembered she had heard so many horror stories about the treatment.
Another doctor took her under his wing in Trinidad, and he treated her for free – she paid for the medication – but unfortunately her body rejected the treatment because of the aggressiveness of the cancer, and this also devastated the doctor.
Her mom “got lost” at that point, but Susanna said she was still positive, and as she was about to leave for Guyana her doctor got a call from Europe about a new treatment and he asked her if she was willing to try it; she readily agreed. He taught her how to administer the treatment as it could not be administered at the cancer centre, and this time she went to the home of a cancer survivor whom she had met and with her help she took her treatment at home.
While she did not write CXC, Susanna said she took 14 entrance examinations at the American University of Peace studies, and because of her success she was granted a full scholarship at the university. She was back and forth between Trinidad and Guyana as she continued the treatment and her lungs were eventually cleared. The treatment lasted for three years and she studied simultaneously and even started to lecture at the workshops the university offers. She has a degree in clinical psychology and a diploma in communications.
She recalled that she travelled so many times to Trinidad that it came to a point where some immigration officers at the Trinidad airport would greet her and enquire about her well-being.
She still has side effects from the treatment, and would vomit sometimes when she is exposed to certain smells, and for years after the treatment her skin felt numb and she could not do certain things for herself. Even today she cannot put a stud earring in her ear because her finger tips are numb. Insomnia and breathing problems still trouble her, but she mediates and knows she has to take care of herself holistically and not just focus on her physical well-being.
Susanna feels her purpose is to empower people, especially young women, many of whom she said sadly have the wrong definition of beauty. Many times people would ask her how she could be so happy, but she would ask them why she should not be happy, and she says she would not change what happened to her.
Today, her mother still breaks down when she goes to the hospital for a checkup, and as a result Susanna does this by herself, and come July it will be five years since she has been in remission. She has a prosthetic leg but hopes to soon acquire a “high tech one” which would make it easier for her to move around; it works with sensors but it costs $10M. But the ever positive Susanna said they would work on fund-raisers and eventually she knows she would receive one.
“It is nice to have positive people around you, and I am thankful for that as I have friends who used to drag me out of my bed and take me out,” she said, but she admitted that it is “not all that easy as it sounds, as I had slipped into depression and I had felt lost.”
But she was pushed to be better and she absorbed the positive vibes and learnt that once there is life anything is possible. Susanna said she lives a normal life and she is also in a committed relationship and does everything for herself.
“If somebody is to ask me how my life is, I will them I honestly think I have the perfect life. I can’t complain as I have no complaints about anything. I am at a position in my life where I want to be and I consider myself very, very lucky.”
Mary had just returned from a Christmas holiday in the Caribbean and it was in early January that she complained to her mother that she was experiencing pain every time she defecated or urinated. Three visits to private hospitals diagnosed fibroids but the last hospital also recommended some tests.
“When we went for the test results the technicians told us to get a good gynaecologist,” her mother recalled, and shortly after that they received the shocking news that the 29-year-old Mary had cervical cancer.
Immediate surgery was recommended and Mary had her uterus removed; according to her mom the doctor gave her a “clean bill of health.” However, she said that the doctor had told her the cancer was also resting on her daughter’s spine, but she was optimistic that all would have been alright, especially after she saw her daughter’s health improve.
But about two weeks later Mary took a turn for the worse and cried out for pain day and night, with lumps appearing on all parts of her body, especially her throat. She could not defecate and this compounded the problem. Her mother said they tried everything, including herbal treatment but by then it was too late.
“In the nights she would lie right here [pointing to a bed on the veranda] and I would sleep on a chair and my daughter would groan with pain, the pain was just too much,” the grieving mother said.
As tears streamed down her face the woman recalled that her daughter was hospitalized for two weeks but the hospital could not administer chemotherapy because she was too weak and needed blood. She also had problems breathing and the mother knew that her daughter was not going to survive.
“One day she looked at me and she said, ‘Mommy I want to go home,’ and I requested a discharge and the doctors told me there was nothing more they could do, and that they would just give me a higher dose of morphine to give her at home. But right then she had difficulty breathing and the doctors and nurses start pressing on her stomach and I said, ‘Look, you all hurting me child, leave her,’” the woman recounted to the Sunday Stabroek.
That very minute Mary died on March 9, just two months shy of her thirtieth birthday. Her mother recalled a daughter who was always full of life and who led a healthy lifestyle, as she was always careful about the food she ate. Only God, she said, helps her to get through the days as her daughter meant so much to her and Mother’s Day is one of the saddest days she has had.
She recalled that her daughter had irregular periods at an early age and the doctors had put her on hormonal treatment, and now looking back she wonders if it might have had something to do with her developing cancer.
“My daughter was a very private person; that is why I would not want her name to be published…” the woman said.
Cervical cancer is a cancer that starts in the cervix, the lower part of the uterus (womb) that opens at the top of the vagina. Worldwide, cervical cancer is the third most common type of cancer in women.
According to the US National Library of Medicine website symptoms of cervical cancer are:
● Abnormal vaginal bleeding between periods, after intercourse, or after menopause
● Continuous vaginal discharge, which may be pale, watery, pink, brown, bloody, or foul-smelling
● Periods become heavier and last longer than usual
It was stated that cervical cancer may spread to the bladder, intestines, lungs, and liver. Patients with cervical cancer do not usually have problems until the cancer is advanced and has spread. Symptoms of advanced cervical cancer may include:
● Back pain
● Bone pain or fractures
● Leaking of urine or faeces from the vagina
● Leg pain
● Loss of appetite
● Pelvic pain
● Single swollen leg
● Weight loss