Tuesday, October 21, 2014

Meet the woman who wears pink and red ribbons

When Ruth Kathini learned that she was HIV-positive eight years ago, she was convinced that nothing worse could happen to her. And then she was diagnosed with breast cancer in 2012. PHOTO | JENIFFER MUIRURI

When Ruth Kathini learned that she was HIV-positive eight years ago, she was convinced that nothing worse could happen to her. And then she was diagnosed with breast cancer in 2012. PHOTO | JENIFFER MUIRURI 
By Millicent Mwololo
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When Ruth Kathini learned that she was HIV-positive eight years ago, she was convinced that nothing worse could happen to her. And then she was diagnosed with breast cancer in 2012.
“I had noticed a swelling in my right breast while taking a shower, and even though the first thought that flashed in my mind was breast cancer, I decided to ignore it out of fear, hoping that the swelling would go away,” she says.
It did not. A few days later, she shared her fears with her friends, who advised her to see a doctor right away.
She decided to go to Nairobi West Hospital, since it was near her home, and to her immense relief, a mammogram and breast scan revealed nothing unusual. However, the doctor was not satisfied and advised her to have a biopsy.
This entailed removing a sample from the swollen mass for examination. The biopsy, done at St Mary’s Hospital in Lang’ata, turned out to be negative too.
AGGRESSIVE CANCER
However, this doctor too was dissatisfied with the results and recommended surgical removal of the growth for further analysis.
Tests conducted at the Aga Khan University Hospital’s Heart and Cancer Centre were positive for what the doctors called invasive ductal carcinoma.
This aggressive type of cancer, and which is the most common, spreads from the mammary glands and goes on to affect the lymph nodes and possibly other body organs.
“I tried to listen, but my mind had gone blank. There is no history of cancer in my family and all the people I knew who had cancer had died. I broke down, wondering at the unfairness of life — I already had HIV, why get cancer as well?”
Though the doctors pointed out that the disease was in its first stage, making chances of full recovery high, Ruth was inconsolable. 
She went back home feeling beaten, especially after learning that a mastectomy, (surgical removal of the entire breast) was the only way to stop the cancer from spreading.
Just as she had done eight years ago when she was diagnosed with HIV, she confided in her husband, who has been her “rock” throughout their 10-year marriage.
Ruth and her husband are a discordant couple. When she was diagnosed with HIV, besides wondering how to break the news to her husband, she also wondered how she could have acquired the virus.
“I had been faithful to my husband and I trusted that he had been faithful too. I’d had two caesarean sections, so it could be that was when I got the virus,” she explains.
When she broke the news to her husband, his initial reaction was to go quiet for a while, but when he spoke next, it was to reassure her that he would support and stand by her. The following day, they did the test together, but his was negative.
“For the past eight years, he has supported me and ensures that I take my medication as I should,” Ruth says.
Her husband was as supportive as he had always been when she broke the news about the cancer and what needed to be done to stop it.
Ruth had a mastectomy of her right breast in June 2013.
“The surgery went well and I have since gone through chemotherapy. The side effects are nothing to laugh about, but the treatment was necessary, so I took it my stride,” she says.
Due to vomiting, a common side effect of chemotherapy, she had to miss taking her antiretroviral treatment (ART) medication on each first day of treatment. This, she says, affected her CD4 count, (number of white blood cells) which dropped from 1,040 to 460.
Looking at her, though, you would never guess that her health is compromised — she is cheerful, positive, and quick to laugh.
ACTIVIST FOR A CAUSE
“It is important to have a positive attitude when you’re going through a rough time. Self-pity can kill you,” she points out.
Since the cancer diagnosis, Ruth has put on a couple of kilos, which she intends to lose. To achieve her goal, she exercises at least three times a week. Maintaining healthy weight and eating a balanced diet, she says, are important for those with HIV as well as those who have had cancer.
Ruth, a caterer, is a board member at the Network of People Living with HIV and Aids in Kenya (Nephak).
She has also taken the anti-cancer and anti-HIV war to her church, St Catherine of Alexandria Catholic Church in South C, where she is the group leader of the HIV and cancer support group, Action in Mukuru Positive Living (Amupoli), a group she co-founded with two friends.
“I chose the name Amupoli because my target was the vulnerable people of Mukuru slums, who might not have the kind of support, care, and encouragement I got when I was diagnosed with HIV and cancer.”
Ruth also uses her networks within Nephak to partner with health organisations to organise free breast cancer and HIV screening at the church at least twice a year.
“Mid this year, we spotted about 10 suspicious cases of breast cancer, which we referred for further testing in various hospitals. Six of them were diagnosed with breast cancer and are undergoing treatment,” she says.
She intends to have more such initiatives in future once she gets more organisations to partner with. Should this be possible, she also plans to include free screening for diabetes and tuberculosis, which she considers to be serious health concerns. 
Whenever she gets the chance, Ruth preaches about the importance of early testing for both cancer and HIV.
“If cancer is detected and treated early, it can save many lives. The same applies for HIV. Knowing your status early enough means timely access to life-prolonging treatment,” she explains.
COPING MECHANISMS
When Ruth Kathini learned that she was HIV-positive eight years ago, she was convinced that nothing worse could happen to her. And then she was diagnosed with breast cancer in 2012. PHOTO | JENIFFER MUIRURI
When Ruth Kathini learned that she was HIV-positive eight years ago, she was convinced that nothing worse could happen to her. And then she was diagnosed with breast cancer in 2012. PHOTO | JENIFFER MUIRURI
So, how does Ruth cope, besides wearing a positive attitude?
“A supportive family, being in a network of supportive friends, and my belief in God. I am a prayerful person,” says Ruth, a staunch Catholic.
She advises those fighting breast cancer and people living with HIV to accept their condition and follow their doctor’s advice.
“It is the only way you will get the strength and motivation to fight and live life to the full,” she says.
In September this year, Ruth took a step of faith and went for cervical cancer screening.
The results were negative. Due to their compromised immunity, people living with HIV are at a higher risk for certain cancers compared to HIV-free individuals. The “HIV-defining” ones include cervical cancer and Kaposi’s sarcoma, a type of skin cancer.
At KNH, a radiotherapy session costs Sh500, though the patient also has to pay for other tests, such as blood tests. In private hospitals, the treatment costs between 8,000 and ****effectively cut out a majority of Kenyans in need of this treatment.
“I have been on the waiting list since November last year. I had been scheduled to start treatment in August this year, but when I went, I was told I will have to wait longer,” she explains.
Radiotherapy is necessary because ductal invasive carcinoma is a very sensitive type of cancer.
“Even though I am cancer-free, some of the cells might just be buying time for an attack,” Ruth says. 
Kenya is faced by inadequate and outdated equipment to mitigate cancer. There are only two functioning radiotherapy machines for breast cancer treatment at KNH. Besides, these old Cobalt 60 machines are being phased out globally due to their limited capability to treat complex cases. Some leading private hospitals in the country have newer technology, called Linear Ac
Ruth was scheduled for radiotherapy, in November last year, but is yet to have it due to the long waiting list at Kenyatta National Hospital (KNH). She says she cannot afford to have it done in a private hospital.
At KNH, a radiotherapy session costs Sh500, although the patient also has to pay for other tests, such as blood tests. In private hospitals, a radiotherapy session costs between Sh8,000 and Sh11,000.
 “I have been on the waiting list since November last year. I had been scheduled to start treatment in August this year, but when I went, I was told I will have to wait longer,” she explains.
Radiotherapy is necessary because ductal invasive carcinoma is a sensitive type of cancer, and it might just be a matter of time before the cancer strikes Ruth again.
The long waiting list at KNH could be due to the fact that there are only two functioning radiotherapy machines for breast cancer treatment. Besides, these old Cobalt 60 machines are being phased out globally due to their limited capability to treat complex cases. Some leading private hospitals in the country have newer technology, called Linear Acceleration, which is more accurate, but costly due to high maintenance demands.
COSTLY TREATMENT
Like many cancer patients who cannot afford the hefty cost of radiotherapy in private hospitals, Ruth has no idea how much longer she will have to wait before she can get this necessary treatment.
She thinks that many lives could be saved if such vital diagnostic equipment were available, and if such tests were offered free of charge or subsidised at public hospitals.
Another setback is the fact that there are only 10 oncologists in Kenya and only five of them have specialised in radiography oncology. This increases the amount of time that a cancer patient has to wait for treatment. This poses a challenge to the war against cancer, and in particular, the most common, which is breast cancer, its research, and documentation.
Chemotherapy treatment costs between Sh5,000 and Sh10,000 at KNH. This does not include the cost of the drugs administered with the chemotherapy as well as several blood tests.
It is worth noting that before initiating treatment, a breast cancer patient has to go through screening, which costs a minimum of Sh10,000. The cost is much higher in private hospitals.
The patient is also required to pay more than Sh4,000 to buy first-line cancer drugs at KNH, excluding other costs, such as antibiotics and nutritional supplements.
The patient may spend as much as Sh4,000 on supplements that help them regain their appetite when on chemotherapy.
In total, a patient with breast cancer requires a minimum of Sh25,000 to start treatment at the referral hospital, an amount that is out of the reach of most cancer patients.
Ruth, who had six sessions of chemotherapy spread over five months, spent Sh42000 — each session cost Sh7000. She feels that it would be a big win for cancer patients if access to medication could be widened, as is the case for ART.
“This would restore hope that having cancer is not a death sentence. The pain and suffering that cancer patients go through is immeasurable. Why make it more difficult by denying them affordable care?” she asks. 

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