Finding hope in each other’s cancer journey

Coast Hospice is the only palliative care facility in the coastal region and among the various services it offers to cancer survivors is a day care programme to help the affected cope with their prevailing circumstances.

The programme, offered every Thursday for three hours, sees various specialists including nutritionists, counsellors and financial advisors guide the survivors on various aspects of life and health to enable them remain strong in the face of stigma, financial crisis and other overbearing odds.

This being breast cancer awareness month, we set off for a tour of the hospice on a mission to find cancer survivors willing to share with us their journey in order to save lives. It is late morning when we get to the hospice to a warm welcome by the hospice’s Clinical Coordinator Erick Amisi. He reveals from the onset that the day care programme has become a life-line for the survivors.

“They meet to share their experiences and motivate one another on how to live life to the fullest despite the disease,” he says as he leads us to where the sessions are held.

It is already a full house and at exactly 11:30am, the meeting begins. Amisi’s sentiments would later be echoed as the survivors confess, during a tea break session, that acceptance and sharing of experiences of living with the disease has helped drown the pain and anxiety that once characterised their daily lives.

“Once you meet and share experiences, you go home knowing you are not alone. At a personal level, it is important to open up and not live in denial. It is only then that you start off and meet family members, health workers and friends half way. The struggle then dissipates and a new dawn beckons,” says Michael Mutua, 53, a prostate cancer survivor.

Mutua who describes cancer as, “one hell of a disease” stresses the importance of support from family, health workers and spiritual leaders to help patients cope. Cancer, he says is a resource drainer. And the pain is almost unbearable.

Mutua first shuffled into the hospice in 2013 to seek relief for pain and is today more at ease “flapping” his enlarged breasts which he says started growing following specialised treatment for prostate cancer.

“My breasts started growing immediately I embarked on Androgen Deprivation Therapy (ADT). The doctor explained to me that while the treatment helps in suppression of androgen hormones, it in most cases has female hormone estrogen soaring and hence the enlargement of breasts,” he says.

ADT is a therapy used in the management of patients with locally advanced, recurrent, and metastatic prostate cancer. The treatment is premised on the fact that prostate cancer cells usually require androgen hormones, such as testosterone, to grow. The goal, therefore, is to reduce levels of male hormones, called androgens, in the body, or to stop them from affecting prostate cancer cells.

Mutua, who has since undergone radiotherapy and a prostatectomy (surgical removal of the prostate gland), says it was very hard to cope with his changing body and pain when he was diagnosed with the disease three years ago. He advises men aged 40 years and above to go for Prostate Specific Antigen screening test for prostate cancer.

Charlotte Gamimba remembers the day she was diagnosed with cervical cancer as if it were yesterday.

On that day in 2012, Gamimba, 51, decided to visit a well-equipped hospital capable of conducting comprehensive tests after a spate of deteriorating health concerns which she says were partly occasioned by visiting ill-equipped dispensaries in her area.

“It was a trying time for my family as I thought I was going to die and leave my children and husband alone. Results indicated that I was suffering from stage two B cervical cancer and I required quick medical intervention to stop the disease from spreading,” recalls Gamimba of the horror that followed her diagnosis.

Gamimba attributes her well-being to a three month chemotherapy session at Oceanic Hospital in Tanzania where she was later referred to India for chemotherapy.

“I was forced to part with more than Sh300,000 to cover for the medical and other expenses in India. My worsening situation could not accommodate a one year wait to undergo a radiotherapy session at Kenyatta National Hospital (KNH),” she says.

Gamimba, who also describes the disease as a resource drainer, says hers is a daily struggle to get money for drugs while sustaining her family. She says the hard economic times have also forced her to move her children from a boarding school to a local day school.

Sixty-seven-year-old Jane Irungu, who is a former high school teacher and a breast cancer survivor, had both her breasts removed six years ago. She hails the day-care meeting which has since initiated a fund through which survivors are able to assist one another.

“In January this year, an idea was borne during one of the meetings. We started a self-help fund which has every member contributing Sh50 every month,” she says.

Each of the 110 members contributes to this kitty and Irungu says this amount goes towards funding members’ stay in Nairobi when they go for radiotherapy.

“It would be far-fetched to think of saving the Sh50 monthly contribution and start a business. The aim is to help those among us traveling to Nairobi and may need fare and some money to pay for a place to stay. We also assist members who cannot afford basic items,” she says.

Irungu says the members came up with this idea following difficult experiences some of them had in seeking treatment.

“There were so many experiences of some of us, who have no relatives living in Nairobi, being forced to sleep on the cold corridors of KNH as they waited treatment,” she says.

Irungu says they also want to sensitise the public on the need for early screening and testing.

“We do not want others to go through what we went through because we have lost a lot of our friends and family members as a result of late diagnosis,” she says.

While hailing the survivors efforts, Amisi confirms that these individuals require various supplies depending on the type of cancer afflicting them and calls for Government intervention on the same.

“We need the State to ensure breast prosthetics for patients who have undergone mastectomy, colostomy bags and belt for those with colon cancer be subsidised and readily available,” he says.

The clinical coordinator says cancer patients use strong drugs that require them to eat a balanced diet, fluids and have enough rest yet most of them have to work to get money to buy the drugs, and make visits to the hospital, which makes the recovery long and difficult.

He says 144 of the about 180 patients currently undergoing palliative care at the hospice cannot afford the cancer fighting drugs.

Looking across the region, Amisi says there is an increase in cervical and breast cancer cases especially among women above 40 and notes an emergence in esophagus cancer, especially among youths, noting that oral sex is one of the fueling factors.

With the help of two other nurses, Amisi attends to patients not only at the hospice but if need be, at their homes, administering medication and counseling to the patients and families across the six counties of the coastal region.

“We receive at least 30 referrals every month from both public and private hospitals and the community. We end up catering to patients from as far as Lamu, Mombasa, Kwale, Taita-Taveta, Tana River and Kilifi counties,” he says.

There is a huge financial burden that comes with being the only palliative centre across such a huge region and Amisi says the hospice has been struggling to serve its patients after two main donors, also cancer survivors but based abroad, succumbed to the disease two years ago.

“Because many patients seek help when the cancer has already spread to vital organs, their treatment becomes very expensive and the fact that drugs are costly and there is no radiotherapy machine in this region only serves to aggravate matters. This makes us lose about 10 patients per month,” he says.

The hospice is now organising a 10 kilometre walk on Friday October 30 in a bid to not only raise awareness but also raise Sh5 million to go toward treatment of cancer survivors.