Shamim Nanteza, 21, on appearance is like any other normal person, thanks to palliative care. She walks and interacts well, save for the dislocated left jaw which has left her unable to speak comfortably.
The displaced jaw is what remains of the hurting tumour that was operated 10 years ago when Nanteza was diagnosed with cancer of the parotid gland.
At the age of 10, Nanteza got a swelling on one of her cheeks that later turned into a burning tumour. For two months, she treated the swelling with different painkillers her mother bought from clinics but in vain.
In the process, the tumour grew bigger that by the time she was taken to Mulago hospital, the cancer had advanced, spreading to the surrounding areas of the gland.
“I was too young to know what it meant to suffer from cancer. My mother could also not believe what I was going through and the distress ahead of me,” she says.
Parotid gland cancer, a type of head and neck cancer, Dr Ludoviko Zirimenya, the clinical registrar at Hospice Africa- Uganda a palliative care center, says is by changes in cancer cells. The rare cancer is characterised by the swelling on the neck and sometimes head.
He, however, says, unlike other common types, the cancer responds to drugs very well even in advanced stages, the cells are able to be confined in a particular area of locality without spreading to other areas such as the brain.
“The patients are, therefore, able to live for years with the terminal illness,” Dr Zirimenya adds.
Since 2006 Nanteza was referred to Hospice Africa Uganda from the Uganda Cancer Institute where she was receiving treatment after realising that her cancer had advanced, meaning it could not be cured.
“I was started on oral morphine [a severe pain relief drug] although I have since been switched to pills which I take only once a day,” Nanteza says holding the affected cheek.
The drug which has relieved her from the pain together with the counselling as part of palliative treatment have since restored a smile on Nanteza’s face and given her new meaning to life.
“Dropping out of school before finishing primary was the most painful experience because I would spend most of the time in hospital,” she laments, adding that she now feels strong enough to even work.
Nanteza is optimistic that the fact that she has been able to be free from pain, her life can return to normal.
Nanteza’s pride in palliative care amid the life threatening cancer is what every patient with a terminal illness would want to have. But not many can access it.
As such, efforts have been mounted to create awareness and relieve patients with incurable ailments from the lasting pain, a day was saved to advocate for the palliative care.
World Hospice and Palliative Care Day takes place on every second Saturday of October every year. It is a unified day of action to celebrate and support hospice and palliative care around the world.
This year’s theme is, “Living and Dying in Pain: It doesn’t have to Happen”.
The type of specialty, Dr Zirimenya says, is done together with other medical specialists such as oncologists aimed at improving the quality of life of the person with a terminal illness.
Palliative care is however, not limited to cancer as widely perceived but all terminal illnesses including AIDS and diabetes.
“Our role is to improve pain both physically through drugs and emotionally through counselling.” He explains that lawyers are hired to help the patients solve for instance, family problems and to prevent them from stress.
However, the trauma that comes with cancer, Dr Zirimenya says, does not stop with the patents but also their families which are equally disturbed because of the fear it inflicts on them that they can lose their loved one at any time.
“People start asking but why me,” he says, adding, “Ours is more of total care.” This he says is the reason they carry on palliative care even after the death of the patient so that the family is able to cope.
Palliative care in Uganda was introduced in 1993 by Prof Anne Merriman, the founder of Hospice Africa Uganda (HAU), a non-governmental organisation which offers palliative care.
HAU has cared for more than 28,000 patients and has a total of 2,000 patients on the programme across its three centres in Kampala, Mbarara and Hoima districts.
Although there are no clear figures on the number of patients in the country able to access palliative care services, there are still 22 districts that lack of palliative care services according to the palliative care association of Uganda.
Dr Emmanuel Luyirika, the executive director of African palliative care Association (APCA), a pan African organisation that advocates for palliative care services says Uganda has made major strides in increasing accessibility to palliative care but a lot still needs to be done.
“Health service commission and the Ministry of Health need to recognise the palliative care trained personnel as specialists just like doctors and also be paid as such,”Dr Luyirika noted.
He mentions that the national policy which is currently in offing if implemented will ensure that palliative care is entrenched into the Ugandan healthcare system.