Periwinkle Club says more can be done for cancer

– Ramsammy finds criticism unfair

The Periwinkle Club

The Periwinkle Club was formed in 2006 to assist cancer survivors, offering a forum for advocacy and sensitizing the public to the risks of cancer. Additionally, it raises awareness as to the methods of detection and approaches for prevention.

The club works closely with the Cancer Registry and Beacon Foundation among other organizations. The club’s name was derived from the Periwinkle plant, which thrives in various weather conditions, and hence its motto ‘We flourish under any circumstance’. The Periwinkle Club, located at 148 Albert Street, Alberttown, George-town, can be contacted through the Cancer Registry at telephone number 223-8320.

Public health expenses are substantial in any country and Minister of Health Dr Leslie Ramsammy has repeatedly admitted the sector’s inability to adequately cover every health problem. But as funding continues to come in for various projects, particularly HIV/AIDS some care providers are asking what has happened to cancer.

Cancer is the sector’s ‘step-child’ according to some of the providers, who say that awareness sessions are rarely held and that the issue only gains prominence in October every year. They point out that cancer is crippling and claiming the lives of a growing section of the society without the means to treat it, and they also argue that little is being done to help patients.

The women of the Periwinkle Club have been around for years, some members are cancer survivors, and they can relate to the struggles of cancer patients across the country – a fight they say many patients are losing due to a lack of access to care and treatment. Cancer patients around the country are fighting to live according to members of the club, but frequently many are dying and others are slipping onto the list of the terminally ill.

“It would be unfair to criticize the efforts being made, but it would also be hard to ignore the reality which is that cancer has taken a back seat. It is not priority and so many people we know are losing the battle,” Cheryl Cave of the Periwinkle Club told Stabroek News recently. She feels a personal responsibility as a care provider to fight for improved cancer care saying that her conscience forces her to speak out after “seeing what I have seen”.

Saying she has seen the faces of cancer and has been exposed to the real story behind it, Cave said, the past few months has been difficult for her and Club members Bridgette Callender, Robin Holder and Carmen Callender because they have watched cancer patients grieve over the current state of affairs.  They have also watched others die. Life through the eyes of cancer patients, Cave said, is the sort of testimony health officials need to hear so that a more aggressive campaign can be fought to secure funding for cancer.

Health Minister Dr Leslie Ramsammy agrees that enough is not being done with cancer, but he is of the opinion the sector is “doing enough with the resources we have”. The minister said cancer has always been a serious public health problem which demands a tremendous response and he is cognizant of the fact much more needs to be done for patients. However, he said, any criticism of the current efforts would be unfair.

“Is there more awareness? Yes! Are we helping patients to access treatment? Yes! Is there a shortage of drugs and are the drugs expensive? Yes! It is no secret the challenges we face in terms of cancer and or the fact that we should be doing a whole lot more, but we are making every effort given the limited resources,” Ramsammy said.

Doing more
than before
Ramsammy insisted the health sector is doing more for cancer than before, saying a decision was taken to subsidize some services including radiotherapy despite the high costs. He said the reality is that patients are receiving assistance and while the numbers might be few, the help is still being offered. He admitted that some of the drugs for cancer treatment are beyond the spending power of the sector, adding that drugs for chemotherapy have particularly posed a problem. Still, he said efforts are being made to assist patients.

There are services available for cancer treatment are in Guyana, he noted, and argued that people have access to them. He admitted that those with access might also be without the means. The minister said the strides that have been made locally with cancer treatment are consistent with those in the region, noting that Guyana offers some of the services at a more competitive cost than other countries. Further, he said that the sector is mobilizing people to intensify cancer awareness sessions and pointed out that from his own lips “cancer is always mentioned”.

Statistics place cancer at number three on the list of major causes of deaths in the country averaging around 8 per cent of the total number annually. Breast cancer, which Ramsammy recently spoke of at a press conference, is the cancer which affects most Guyanese. The minister had also recently mentioned that treatment for breast cancer has become more radical resulting in more women having surgeries to remove their breasts. Currently some 500 women are registered as being diagnosed with breast cancer and a few men are also on the books.

In the midst of it all
The women of the Periwinkle Club told Stabroek News during a recent interview that they are in the midst of all the suffering that surrounds cancer. They see success stories as well but noted that there are few. Bridgett Callender, a survivor said frankly many people are unable to beat it. She recalled a woman at East Coast Demerara who was suffered from agonizing pain in her body but could get no diagnosis as to what her condition was despite several doctor visits. The woman was later diagnosed with cancer and is today fighting to live though terminally ill. The group also mentioned a man at West Coast Demerara who lost his sense of smell then his sight and later his will to live after being diagnosed. Recently, he has started to fight saying he is not ready to go.

In July this year, the members of the club went to distribute personal hampers to several cancer patients who were identified by the Beacon Foundation, among them some terminally ill patients. They mentioned that many of the patients they saw had lived a fair portion of their lives while others recently retired. What was more troubling, the women said, is the increasing number of young girls who are losing their breasts in surgeries. They said that a walk through the medical wards at the public hospital would reveal young women who had no choice but to take the radical form of treatment and do surgery.

No counselling
The women said cancer patients who are battling to live are often depressed, but no counselling is available to them. The Periwinkle Club offers some sit-down sessions with patients and it also provides counselling but the women there recognize how great the need is and the club’s inability to fill it. They said that the majority of patients sometimes just need “someone to encourage them” when they have no relatives to turn to. Callender argued that counselling should be offered in the sector as is the case with other conditions. She noted that it is such omissions in the system which results in people drawing certain conclusions.

Callender, telling her own story, recalled that she was fortunate to have been successfully treated in Trinidad and Tobago. However, she said the treatment exhausted her savings “which I had to use, but there are so many people out there who don’t have the money”. She said the story behind access to treatment is a heartbreaking one since according to her, some of the drugs are free in the sector and others are not. She noted that despite the subsidized cost of some services “it is still not accessible to the ordinary patient”. Callender said also it is commendable that government can put up some of the money, but she questioned where some people who are surviving on little can come up with the other half.
Callender said too that the Periwinkle Club continues to do its work because it is aware of the impact of cancer. She noted that Beacon Foundation and ScotiaBank have been stellar in their contributions to the cancer fight, adding that they both continue to support projects in aid of cancer patients. ScotiaBank has for some time been funding the Club’s outreach programme to cancer patients across the country, and personal items and groceries are distributed.

Giving up
Cave said that some doctors here easily give up on cancer patients and would tell them to “go home and die”. Holder then added that the reason why the club started its work was to meet patients and offer them hope. She said there are many patients who are clinging to that hope and who start to believe that a diagnosis is not the end. But there are still others who are afraid of whether “they will see another day”, Holder added.

“…I have seen people in the depths of despair, people are who sick and have no way out and they are at home thinking life could end at anytime. To see people at that low is hard but that is why we go out to see them, to offer them hope and watch them start to fight,” Holder said. She has been with the club for several months now and refers to the experience there as unlike any other.

Through its work, the women said, the club is doing its small part to support cancer patients, but they called for a greater focus to be placed on cancer. They said cancer is not a death sentence and that patients should not have to feel that way, adding that the time has come for greater awareness and more real commitments being made to cancer in Guyana.

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