“I wish I knew about palliative care as my sister was dying”Alignd
Zodwa Sithole, Head of Advocacy for CANSA, lost her sister, Elizabeth, to cancer 10 years ago. Because no one had offered Elizabeth palliative care early on, she experienced a lot of pain and uncertainty. This is Zodwa’s story…
Before Zodwa Sithole became the Head of Advocacy for the Cancer Association of South Africa (CANSA), she was a nurse, with training in many specialist nursing fields. But one thing really frustrated her in nursing – she couldn’t help patients when they were in real pain.
That frustration became agony for Zodwa, when her older sister, Elizabeth, was diagnosed with metastatic breast cancer. “It was over ten years ago now, but I so clearly remember that day when my mum called me saying, ‘Zodwa, your sister is not doing well. You need to come home’.”
When Zodwa arrived at her sister’s – in Durban – she could see Elizabeth was very sick and in a lot of pain. “Doctors had given her morphine but she was taking it incorrectly,” says Zodwa. “She was taking a small dose, then waiting for the pain to come back before taking the next dose. She was worried she might get addicted to morphine and she feared the side effects, like constipation. As a result, the medication wasn’t as effective as it could be, and she was in terrible pain. It was heart-breaking to witness.”
There was so little support
Zodwa took Elizabeth to the hospital the next day, along with their mum, and Elizabeth’s grown-up son. The doctor in the oncology department said, “There’s nothing more we can do. The cancer has spread throughout your body.”
This news came with just a glance at a chart. The doctor didn’t ask Elizabeth anything else, says Zodwa. “He didn’t ask how she was taking her medication, if there were any side effects… he sent her home to struggle through.”
“I want to make sure that cancer patients don’t have to go through what Elizabeth went through for so long. I want to encourage patients and families to ask for a palliative care referral”– Zodwa Sithole
They were at a loss. Zodwa says it was her nephew who first suggested going to a hospice. And that was when Zodwa’s own palliative care journey started.
The palliative care nurse came to see Elizabeth at home and recommended that she be admitted to the inpatient unit – Elizabeth was pre-terminal.
It’s holistic care, and not just for the patient
“When we arrived at the hospice, the first thing they did was make Elizabeth really comfortable. They put her in bed and corrected her morphine dosage. And once they attended to Elizabeth, they provided counselling to us as a family as we were struggling to accept her condition. Because that’s the thing about palliative care – it’s holistic care for the patient and their family. It was truly amazing – I won’t forget it.”
Elizabeth died the following day surrounded by family, but that night she was, for the first time in a long time, pain-free, and at peace.
“I remember her on that final night – so peaceful. And I said to myself: I really want to go out and help people who are struggling like my sister, and our family.”
A door opened for Zodwa at a hospice in Johannesburg, and she began her training as a palliative care nurse.
Palliative care is part of cancer treatment
“Now I know that pain shouldn’t be part of cancer. Yes, you have cancer, but your pain can be managed. Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social, or spiritual. The quality of life of caregivers improves as well. Having palliative care doesn’t necessarily mean that you’re likely to die soon – some people have palliative care for years.”
Zodwa now works for CANSA. “I’m very happy that I’m helping my cancer patients. I always say that palliative care is part of cancer treatment. In my advocacy role now, I want to make sure that cancer patients don’t have to go through what Elizabeth went through for so long. I want to encourage patients and families to ask for a palliative care referral.”
It’s been over 10 years since Elizabeth died, says Zodwa. “I still can’t believe she’s gone. She was the pillar of the family – if one of us had a problem, we’d always go to Elizabeth. And she always had the answer. I miss her.”
CANSA has collaborated with Alignd to increase access to palliative care. Click here to find out more.