It’s been painful to watch my mother battle brain cancer

I sat on a bench near the emergency wing at the Aga Khan Hospital waiting anxiously and looking out for my father’s car. He had called asking me to meet him at the hospital and I got there before him.

Eventually, I spotted his car reversing into the accident section reserved for ambulances. I got up and ran towards it. My mother lay at the back seat, unconscious.

Then suddenly she had a seizure. It took hours for the doctors to finally stabilise her and she was admitted to the high dependency unit (HDU).
We had not seen any major symptom that would have signalled any life-threatening disease.

She had had excruciating headaches, personality changes, nausea — which we thought could be anything.

The first seizure before rushing her to hospital was the sign that something was not right. 

My mother was just fine when I left for work that fateful day. She could walk, eat, laugh, but the MRI (magnetic resonance imaging) done on her was a shocker.

My mother, 70, was diagnosed with glioblastoma multiforme, also known as glioblastoma and grade IV astrocytoma —the most aggressive cancer of the brain.

By the time of diagnosis, her brain cancer was at an advanced stage. The picture of my mother with tubes and oxygen tanks around her at the HDU is still vivid in my mind.

My family had never been directly affected by such a serious disease, it was scary dealing with the unknown at this level. In fact, I had never heard of brain cancer. All I knew was breast and cervical cancers.

The brain surgery was later performed in April. The hospital required a down payment of Sh400,000, but we could not raise it almost immediately, forcing us to call for a fundraiser to cater for more than the Sh1 million needed for treatment and hospital bills.

We thought that would be it to get our mother back on her perky feet, but that was not the case. She had to undergo one session of radiotherapy which cost Sh9,000. For chemotherapy, she was put under oral drugs that cost the family another Sh2,000 per day for six weeks.
The treatment was too aggressive on her considering the age and given that she also hypertension.

After the first surgery where a part of the tumour was removed, she could not survive another operation and the doctors advised that we manage her at home with prescribed medication.

Every week, it costs us Sh8,000 on mum’s medication. Honestly I do not know how households without an income manage a cancer patient.

We were already drained financially before we knew that if went to a public hospital we would have paid less on referral to a private hospital.

My mother’s National Health Insurance Fund came through to offset some of the hospital bills. I was actually surprised that the fund was so swift.

During her stay in hospital, she had a series of four seizures. By the time she was being discharged from hospital she was immobile. It did not hit us that we needed a wheelchair and we had no idea how we were going to manage her at home, especially moving around.

The changes at home were drastic; her personality became unpredictable with sporadic mood swings. We had to make a few fixture changes to ease access.

We got a carpenter to make a ramp for the wheelchair movements and also installed hospital-like rail bars in two bathrooms for easier movement. And we hired a physiotherapist and a nurse aide. We pay the nursing aide Sh1,000 per day due to her qualification and experience.

This experience has changed me and inspired me to make a difference. I started a company, WellCare Health Services, after losing my job, to offer the little help I can to families with palliative patients.

For instance, I did not know that one can actually buy medication in bulk from a pharmacy and get a discount instead of waiting for a dose to end in order to replace.

Compiled by Stellar Murumba, [email protected]