They say their biggest fear is a recurrence hence it’s important that support structures are established where health professionals can share tips with them for healthy living and emotional support.
Although happy to be still alive, cancer survivors say they feel neglected by the health system and wish there were support structures where they could share experiences with each other, and have health professionals also sharing tips for a longer life with them.
Contrary to the plight of the survivors, the Ministry of Health however paints a different picture, stating that local facilities and relevant NGOs offer assistance to those in need. They further state that they have not received complaints of neglect from survivors. NGOs for their part say they are financially constrained and cannot reach out to survivors in other parts of the country.
Emely Namane, is one cancer survivor who feels very much neglected. A resident of Tsabong, Namane was diagnosed with cancer in March 2010 on the day she says her life completely changed forever. She had never, in her 61 years (age at the time) thought she would one day be a statistic of the dreadful disease. A few weeks before her diagnosis, she noticed a lump in her right breast. Concerned with this lump, she went to Tsabong Hospital where she was operated and the lump’s specimen taken for study.
“Few weeks later I went back to the hospital, hoping for the results. There I found a doctor who said I had to go to Princess Marina Hospital for further medical examination,” she said, oblivious to the tragedy awaiting her.
According to the now 67-year-old mother of three, it was at Princess Marina where she was told she had breast cancer and would return to Tsabong without a breast as it would be amputated. She went through chemotherapy, a process she says was successful. Asked if she received any pre-counseling post chemo, she said did not; “No one did. In fact, I counseled myself. I excused myself to go to the toilet where I asked myself who should suffer this disease if not me. I then whispered a short prayer asking God for comfort and that he saw me through the procedure. I went back and I went through the surgery.” Namane said she did not tell anyone, including her children, about the diagnosis or even the surgery, a decision she said she took to protect them. “My children would call me while still recovering in hospital but every time I assured them that I was OK and was waiting for results from the doctor. I did not want them to panic,” she explained.
Namane said despite the success of the procedure she was bothered by the gap between survivors and the health system. She feels very much neglected by the health system as a cancer survivor as there is no support structure in Tsabong. “I do not know if it is just in Tsabong or it’s the same in every part of the country,” she said.
Namane said a cancer survivor needs support, emotional and psychological, because “the biggest fear is a recurrence. The disease is a death sentence, one knows they can die or have a recurrence, hence the importance of always trying to live a healthy lifestyle and having a positive mind.” She said survivors also need a special diet and that with a support group, survivors and patients and can meet health professionals or even amongst themselves and share ideas on how to live healthy lifestyles. “But none of these are given to us, not even transport for check-ups in Gaborone as that’s where we go” she said, saying as an outpatient, she always has to bear the financial implications of the over 1000 kilometers she travels from Tsabong to Gaborone and back.
“People see my residence and think I can afford everything- the ‘beauty’ they see outside is not what is inside. Inside this house is a penniless, hungry, helpless and unemployed widow,” she said. “What you see in this yard are achievements of my late husband. The money he left for me is also finished, so people should not make the mistake of concluding that the property they see on the outside reflects that which is inside,” she said.
“I sometimes sit here and watch BTV where I see someone in events of either the Ministry of Health, or ministry stakeholders dealing with cancer, who will be said to be a survivor and I ask myself; is cancer in Gaborone different from cancer in villages like Tsabong,” she said, noting that it would seem there is a disparity in the support structures given to people in the city and those in far areas. “What other explanation can be given to such a scenario?” She asked, suggesting that even though disadvantaged by the distance to the city, services should still be brought to them regardless of the distance. “We are both survivors and need the same services,” she pointed out.
Seeing that she is left to face the survival battle in her little corner, she now counsels other villagers who have been diagnosed with the same disease. She says a handful of people she knew succumbed to the disease Tsabong. “Another woman in Tsabong was recently diagnosed with cancer and she lost all hope such that she did not even want to undergo the surgery. With my testimony, I gave her hope and she eventually went through the procedure. She is now better.”
When contacted, another patient who did not want to be named shared sentiments similar to Namane’s: “To be honest with you, I have accepted that I have cancer to a point that every time I sleep, I see a graveyard,” she briefly said, indicating that she did not want to be drawn in the discussion. “Maybe one day I will talk more and that will be if I will still be alive,” she said.
Ministry of Health and Cancer Association responds
Reached for comment MoHW said no complaint about lack of support was lodged with them, not even at community level. “Patients with lifelong conditions are discharged to the care of the local facilities and other established structures such as home based care which continue to offer assistance to those in need” they said, explaining that the structures also act as advocates for the patients to negotiate complicated referral systems when need arises.
On the establishment of support structures, the ministry said having been classified as a life-threatening illness, a holistic approach is used to manage the disease in a continuum care model. According to the ministry, the model encompasses palliative care which includes counseling of the affected and the carer among other things. “Families are also prepared for death, dying and bereavement, and at all times dignity is restored for both patient and family” they highlighted. According to the ministry, they work in collaboration with other NGOs to offer support at community level like the Childhood Cancer Parents Association of Botswana whose membership is voluntary.
“While the ministry is doing its best to cater for the health needs of the nation, it also acknowledges that there is need for effective community participation to offer each other culturally appropriate psychosocial support and care,” the ministry stated, adding that efforts were underway to train community leaders to effectively identify people with needs and offer appropriate care.
Meanwhile, giving a situational analysis of cancer in Botswana, the ministry stated that 6 851 new cases of cancer were reported from the period of 2008-2012 with 1 562 people having succumbed to the disease. Furthermore, the ministry states that more of the cases recorded were women, having constituted 58 per cent (3 874) of the malignancies for the stated period. However, the ministry noted that though more women were the most affected, it was more men who succumb to the disease – 27% men died compared to 19.8% of women. The highly-affected age group is said to be generally from 35-49 years for both men and women and that different cancers affect different age groups differently with prostate cancer affecting men over the age of 50 in the country.
Efforts to solicit comment from the Tsabong Dictrict Health Management team were futile as a questionnaire sent to them was not responded to at the time of going to print. This is despite them promising to provide answers.
Cancer Association Botswana Executive Director Sharon Munyoro explained that they did not have support structures outside Gaborone but worked with various affiliated support groups around the country. She said they work hand in hand with volunteer counseling professionals who offer counseling to interested individuals, be it the patient, family members, friends or colleagues in Gaborone and surrounding areas.
On the negligence of survivors, especially those in remote areas, she said they were financially constrained hence could not give the necessary support. Munyoro said due to lack of funds, they cannot build a bigger interim home for cancer patients who come to Gaborone for treatment. “Other than financial constraints, we have a limited number of educational materials and we do not have a motor vehicle for travel during our outreach campaigns. We also have very little manpower and therefore encourage each individual to be a cancer advocate as we are all affected by cancer,” she said.