Two cancer patients talk about how inefficient healthcare systems failed them, and how costly it has been for them.
George Macharia, 53
“I wouldn’t wish the misery and frustration I have gone through on anyone else.
In early 2016, I began to experience frequent nose blockage and sneezing. I visited Mater Hospital, where a general physician treated me for allergy and put me on medication.
I was in and out of Mater Hospital the entire year. These hospital visits took almost all my time, making going to work almost impossible.
Eventually, I had to look for a less-demanding job, one that did not come with medical insurance.
In 2017, I stopped going to Mater and opted for St Francis Community Hospital in Kasarani.
On my first visit, I booked an ENT clinic, where the doctor diagnosed me with flu and put me on some medication. All this while, I was inexplicably losing weight.
But it is the episodes of frequent nose bleeding that frightened me. They were fierce, severe bleeding that continued until 2018.
With no respite in sight, I again visited St Francis Community Hospital, where a general practitioner put me on medication to stop the bleeding.
But the bleeding continued. With the advice of a friend, I booked and attended an ENT clinic at PCEA Kikuyu Hospital on Monday, May 13, 2019.
By then I was experiencing a lot of pain in my nose and had headaches and pain in my shoulder blades.
But the doctor, an ENT specialist, did not give me the attention that I needed. His focus that day was on a story in the papers about the nurses’ strike.
Impatient and frustrated, I reminded him that I had booked the clinic because I needed his attention since I had been on treatment for allergy for a long time yet I was still unwell.
He however insisted that mine was an allergy and even prescribed some antibiotics and anti-allergy medicines.
I went home dejected and my condition continued to deteriorate. The nose bleeding became more severe and I continued to lose weight.
That same month, in May, I went to MP Shah Hospital after consulting with a friend. The pain in my nose had by then travelled to my right ear. I would spend all my time researching about this never-ending pain because it was worrying me to no end. My research told me that I could be having a swelling or a tumour, which distressed me even more.
It is the ENT specialist at MP Shah Hospital that eventually diagnosed swelling inside my nostrils. It was a 45mm mass, he told me, and asked me whether I had previously seen an ENT specialist, because the diagnosis procedure was very simple — all he needed was an otoscope. It is unbelievable that the specialists I saw at St Francis Community Hospital and PCEA Kikuyu Hospital missed the mass growth.
A biopsy scan on June 26, 2019 at MP Shah Hospital confirmed that I had nasopharyngeal carcinoma, a type of head and throat cancer that forms in the upper part of the throat which lies behind the nose. I was immediately put on radiotherapy treatment. I have had 10 sessions now, and the inflammation has shrunk and the pain has decreased. Unfortunately, the cancer has spread to my liver. I will be put on palliative care treatment when I complete the six cycles of chemotherapy I am undergoing.
I feel let down by the system because had I been diagnosed the first time I went to hospital, I might not be giving this story now, I would instead be happily going about my life and looking forward to the future. There is a big problem if the doctor you pay to decipher what is ailing you instead misdiagnoses you and treats you for a non-existent disease.
Many Kenyans, I believe, have similar unfortunate stories to tell. I weighed 68kg before falling ill, now I weigh 48kg. I have lived in the US, and have experienced what professionalism entails in the health sector. I might die due to the mistakes of people who failed to do their job. I wouldn’t want anyone to go through what I have, that is why I am sharing my story today.
I know about cancer, and in fact started attending wellness clinics since I turned 50 three years ago. In 2014, for instance, I visited Mater Hospital, where I paid Sh14,000 for a variety of tests, including those that check for cancer. I had just turned 50 and I wanted to ensure that I was healthy.
I am lucky that I can at least afford cancer treatment, what happens to patients who suffer a series of misdiagnoses only for the cancer to be caught at an advanced stage yet they cannot afford treatment?
I am in a lot of pain. From my nose, ear, the constant headaches, pains in my shoulder blades and stiff neck. My right ear is going deaf. The nosebleeds continue and the weight loss is more pronounced. All this because of a misdiagnosis that should never have happened. Had that ENT specialist at PCEA Kikuyu Hospital got his diagnosis right, had he listened to me and paid attention, I might not be in the position I am in right now.
At MP Shah Hospital, I was attended to by Dr Shailendra Inamdar, an ENT surgeon. He was able to do so much in one day. He caught the tumour and did the endoscopy. You see, unlike the others, he had the equipment and the technology. He was also very professional in the manner in which he handled my case. In fact, he spent one and a half hours testing my ears, nose and throat, while the others only spent a maximum of 15 minutes.
It hit me hard when the doctor told me that the tumour was a mass that no trained doctor could miss. Besides there being cases of doctors who are not passionate about their work, it goes without saying that some of our hospitals are equipped with old equipment that is not up to date with modern technology. Hospitals need a lot of regulation too, otherwise stories like mine will keep getting told.
It also raises many questions about how hospitals are being licensed. Can the government tell us how they even classify these hospitals? The public needs to know what to expect when they visit a hospital.”
David Kinyanzui, 40
David Kinyanzui, 40, a father of four, has stomach cancer. Six months ago, Mr Kinyanzui had his last treatment, the sixth cycle of chemotherapy that he says almost killed him.
“In May 2018, I began feeling unwell. I had frequent stomach aches and would vomit often. I suspected ulcers and visited a private clinic near Mama Lucy Hospital in Kayole. After some tests, the doctor informed me that I had H.pylori, a type of bacteria that can enter your body and live in your digestive tract, eventually causing ulcers in the lining of your stomach. I was put on medication for one month, but there was no a change.
Due to the frequent vomiting, I lost a lot of weight. In fact, within two months, I had lost 32kg and now weighed 57 kilos, down from 89 kilos. My clothes no longer fit me.
When my health problems persisted, I went to Kenyatta National Hospital (KNH), where doctors referred me to the German Medical Center in Upperhill for a CT scan and an MRI.
The results indicated that I had a tumour in my stomach, not H.pylori. I was then sent for an endoscopy at St Mary’s Hospital in Lang’ata where a biopsy was done — the results showed that the tumour was cancerous.
Dejected, I returned to KNH, where I was booked for an oncological clinic, only to go for three weeks unattended to due to the big number of patients on the waiting list. Sympathetic, a family friend advised my wife and me to seek treatment at Meditest Hospital in Parklands, Nairobi, where I started chemotherapy treatment immediately.
I was put on six cycles of chemotherapy, each costing Sh75,000. The National Hospital Insurance Fund (NHIF) paid only Sh25,000.
After the chemotherapy treatment, we were referred to Tenwek Mission Hospital in Bomet for further treatment. We were welcomed by a very friendly team of doctors, who performed another endoscopy. Unfortunately, the doctors advised that the next treatment option available for me is to remove my entire stomach.
I was in shock. The doctors went on to explain that the procedure would be risky. I not only risked contracting pneumonia, I would have to feed through a pipe for quite some time. Not only this, but also that my survival was not guaranteed.
My eldest daughter is 15 years old while my youngest two, twin girls, are two years. A treatment option that will give me some more years to nurture my children will be a plus to my life.
I was a messenger at the High Commission of India in Nairobi at the time I fell sick but was forced to stop working due to ill health. As it is, I am uncertain about the future. I worry day and night. Constant stress has become part of life. I am appealing to well-wishers to refer other treatment procedures that are less risky.
I appeal to anyone who can offer a more hopeful way out for me to help me.
I have written to the office of the President, the office of the Deputy President, as well as the office of Nairobi Governor Mike Mbuvi Sonko, seeking audience with them, but I am yet to get a response from them. I need help, but this help has not been forthcoming. I don’t know what to do now.