LATOYA West Blackwood is only one of several people who have lost loved ones to cancer.

While stories of people surviving the deadly disease are often told, she is concerned about the system in place for those who are diagnosed and have no chance of survival.

“Who represents them? That side of the coin needs to be explored. It has to be dealt with. We often hear the success stories and the ‘sexy’ side of it, but what about those who do not live? How are we addressing that aspect and their families,” said the 31-year-old publisher and chairperson of the National Book Industry Association.

In an interview with the Jamaica Observer, West-Blackwood shared that following the detection of a lump in her mother’s breast in 2011, a diagnosis came three years later that would forever change her life.

Subsequently, her mother, the late Leonie Smythe-Melhado, who was the fourth woman deputy commandant in the then Island Special Constabulary Force, was diagnosed with terminal inflammatory breast cancer in March 2014 at Penn Medicine in Philadelphia, USA. West-Blackwood said the diagnosis was a mix of emotions for the family, as the woman who once led an active and healthy lifestyle was now terminally ill.

“In Jamaica, when people hear cancer it doesn’t elicit a positive response. Even with survival stories you don’t feel happy. It’s not the flu. When she got the diagnosis, she went to a default position to say she wanted to fight it privately,” she said.

By time her mother returned to Jamaica, West-Blackwood said, she had suffered a fracture as her bones had weakened because of metastasis — the spread of a cancer or other disease from one organ or part to another not directly connected with it.

“The cancer spread to her femur and she had a broken bone. At this point she was weak and in need of specialised care. If you know of bone cancer it is an extremely painful thing,” West-Blackwood said.

Faced with the reality that she would eventually lose her mother was made more difficult as she recalls coming across people who had no understanding of how to deal with the situation.

“You would come across doctors and nurses who had a genuine attitude of care and on another end of the scale some who lacked empathy. One doctor came out and said to me, ‘Your mother is wasting away, there’s nothing you can do.’ What struck me was the lack of empathy by people who are supposed to be in a position to care for patient and extend care to the caregiver,” she lamented.

“The lack of a formal infrastructure within the healthcare system to accommodate persons with terminal illnesses was discouraging. There is only one hospice in Kingston and it’s at a private hospital. When the pain for her became unbearable I was willing do anything to get her some relief. That’s when I was put in contact with Dr Jason Toppin, who did home visits and brought her a lot of relief through palliative care,” she said.

Dr Toppin is a consultant in anaesthesia and intensive care at the University Hospital of the West Indies.

But, her mother’s condition kept deteriorating at home and she had to be readmitted to hospital. It’s at this point that one of West-Blackwood’s greatest regrets was realised.

“The night she passed away she said to me I may not make it through the night and I begged to stay the night before she passed, but I had to leave and got a call in the morning that she was dead. I never had the opportunity to be there with her,” she said.

Subsequently, she has joined forces with the Palliative Care Association of Jamaica, headed by Dr Dingle Spence — senior medical officer of The Hope Institute (St Andrew) — the public sector oncology hospital, and Dr Toppin to bring public awareness to the specialised medical care for people with terminal illnesses and their families.

“People should not have to suffer in private. This is the other side of the coin. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family,” she explained.

She stressed the need for more hospices to be available locally.

“A hospice provides specialised care for people who are dying and in a hospice setting the family is able to play a more integral role in their loved ones care as they are able to be physically present. When you have your loved ones with a terminal illness, you want to know the memory they have while still alive is that where they feel comforted, cared for and loved, even if they are not fully aware of what was happening around them,” she said.

West-Blackwood added that while a lot of people suffer in silence she wants to see an end put to that. She’s set to release a publication looking at the patient/practitioner perspective on the issue at the 2016 Palliative Care Association’s annual conference.

Meanwhile, Dr Spence said that the Hope Institute is an oncology hospital that offers care to everybody with cancer, from diagnosis throughout the cancer journey. However, what most people are not aware of is that the hospital offers specialist palliative care for free.

“There is not a very big awareness of Hope. Most people understand if they have a cancer diagnosis they may be treated at major public hospitals but many aren’t aware of a specialist cancer hospital. Sometimes they get referred and say ‘how come we never knew or weren’t referred earlier.’ The public’s perception is you only come here if you are going to die and people are anxious about it, and usually think if they are sent here, they are close to death, but it’s the opposite. People come here at any stage of their illness, with advanced disease and get home. With advanced cancer, our statistics show that 70 per cent of those people go back home. So it’s far from fact that it’s a one-way street.”

One beneficiary who asked to be identified as ‘Blue’ said that when she came to Hope Institute she had immediate relief, as she was diagnosed with a rare cancer, which caused a lump in her chest.

“No one could see the source of the growth and after interacting with Dr Spence I was relieved. They are able to get on top of the pain immediately,” she said.

With regards to hospice care Dr Spence said that it is not a nursing home nor a long stay facility and though they offer hospice type care there are not enough beds for people to stay for months, so within two or three weeks they are sorted out and sent home. Moreover, she explained that palliative care is not just for patients with cancer, but for anyone with a progressive life-threatening illness.

“We have a lot of people for whom palliative care is appropriate. We look at the person, who they are and not just the illness. We recognise the whole person has family and loved ones also suffering and we try to increase the quality of life for the ill person and include everyone,” Dr Spence said. “We build a relationship with the patient and family, and talk about things that are difficult.”

However, she added that while the oncology hospital is recognised on a global scale and listed in the directory of palliative care, they are nowhere near covering the need of the Jamaican population.

“Once you’re out of the South East region it is difficult and even if you’re close to the region, availability of medication can be problematic. Though we have a national cancer plan, palliative care cannot be developed the way it needs to be unless we invest in training,” Dr Spence said.