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The emotional and financial battle for families with cancer patients

 Florence Akoth, 28, (right) with her sister Linet Obare at their home in South C, Nairobi. Florence was diagnosed with breast cancer in December 2014. Their father is also a cancer patient. [Photo: Fidelis Kabunyi/Standard]

Being unprepared heightens nerves. This is the situation for many families when a cancer diagnosis is placed on the table.

The message is given in hard scientific facts or in a one-liner: You have cancer!

When Linet Obare was informed that her father had cancer five years ago, nothing prepared her for the round of visits to doctor’s consultation rooms. No one disclosed to her details of the cancer and treatment regime for her father.

But Ms Obare, a lecturer at Technical University of Kenya in Nairobi, could not sit back. She took to the Internet to understand cancer. A visit to the Kenyatta National Hospital (KNH) left her disappointed; they had to wait the long queue ahead for treatment date several months later.

“Cancer sounds like a death sentence because doctors and others do not take their team to explain the disease and how families can cope with it,” Obare told the Standard on Saturday.

She shared the emotional and financial strain of families with patients describing it as physically painful and emotionally draining.

Her father was diagnosed with non-Hodgkin lymphoma in 2010 but the pronouncement that he could only receive treatment after three months at KNH sent this family searching for other treatment options.

Radiotherapy, chemotherapy, hormonal treatment and surgery are some of the terms thrown to the patients and loved ones in a journey where they are expected to make decisions to seek treatment.

“As the patients undergo physical pain, as families, ours is both in our pockets and psychological because we have to sell the little we have to seek treatment elsewhere,” Obare said.

Though her father is now in remission but on follow-up therapy, in December last year, Obare had another encounter when her younger sister Florence Akoth was diagnosed with breast cancer that set them on another medical sojourn.

The second cancer diagnosis in this family is not only going to drain them financially but the psychological demands are already taking a toll on them.

Anxious children

“The doctors were already taking us from one test to another with nobody caring to explain what each of this was meant to establish,” said Obare.

“The patient needs to be counseled and taken through the available treatment options so that together with her family they can make informed decisions,” she added.

She said when a family member is diagnosed with cancer, roles change and whereas some become more involved in treatment and care of the patient, some dissociate themselves.

Obare further shared that her children are confused and scared what a cancer diagnosis means for them.

“My children become quite concerned when my younger sister is at my place in pain and the look in their eyes is that of concern and we assure them that she is on medication and she will get better,” she pointed out.

Nursing psychologist Gladys Nduku says the diagnosis of cancer or any terminal illness is traumatic for everyone thus social support is critical. “Knowledge and understanding of the crisis is important as every ones realities change within seconds.”

According to her, psychosocial care helps the patient and the family cope before the diagnosis, through diagnosis, towards treatment process to cure, and into continuing treatment thus it should be integrated and given equal priority with diagnosis and treatment.

“It helps the patient to maximise the benefits of treatment and to live as well as possible,” she says.

Prof Ronald Wamalwa Wasike of the Breast Clinic at the Aga Khan University Hospital concurs, adding that medical terms can be confusing and difficult to understand thus the information that an individual has cancer should be given systematically in a level of language that the patient and family would best understand.

Wasike recognised the critical role played by peer support.

“If you have been diagnosed with breast cancer, you may find it helpful to talk,” he says, adding that it would also be an opportune time to seek a second opinion.

For adults, a cancer diagnosis exudes shock, fear, irritability and anger, which have to be dealt with to avoid affecting communication during the treatment.

It is even harder on older family members tasked to make key decisions on the nature of treatment.

Concentrating at work also becomes a task because I have to make frequent calls back home to check whether she woke up well, has eaten and on her emotional status because cancer patients are always deep in thought.

“I talk to my children and explain that aunty has breast cancer. I find it more liberating to discuss it with them because it makes them comfortable and even in helping around like serving her food and encouraging her to eat,” Obare adds.

For persons diagnosed with cancer and have young children who need to be taken care of, Wasike advises that their schedules need to be adhered to because a change in routine may lead to anxiety and stress in the little ones.

“Let your children know in advance if there will be a change in their routine schedule and keep them informed about what is happening related to treatment,” he explains in his book on breast cancer.

He advises that parents can explain to the children the nature of the treatment and what it is meant to achieve.

“Ask them how they picture chemotherapy traveling through your veins, destroying any bad cells that might be lingering somewhere, or have them draw a special picture to cheer you up and open your get-well cards when the mail arrives. Explain why you don’t feel well and the importance of playing quietly on certain treatment days. Let young children know that they can’t catch breast cancer and neither are they in any way the cause of it.

Obare says friends and colleagues have helped in financial and emotional support but the latter counts the most when she uses her free time or lunch break to check on her sister who is admitted in hospital.

Whereas words of encouragement for the patient would be a good conversation to hold, psychologists advise that sometimes being an active listener is better than being a talker.

“Listening is an important part of communication, and helps others talk about how they’re feeling. The fear of an unknown future is a common worry in patients and loved ones especially when a cancer diagnosis is given. Sharing this with a trusted person or partner enables the individual to candidly express their feelings”.

“You have a chance to talk about how you feeling and coping with this journey you are experiencing,” Prof Wasike says. Keeping a journal of your thoughts even writing just two sentences a day can be very therapeutic.

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