Some stories are hard to write, because you don’t even know where to start. Like when somebody has cancer and tells you their story and you are trying to wrap your head around the fact that this person has gone through so much but they are still smiling.
My friend Amos Rono told us that his brother Johna had cancer a couple of weeks ago, cancer of the spine. As we retweeted his appeal for funds to travel to India we wondered how we could help to spread the campaign. Just as money started flowing in for him to travel, there was an unexpected blow; the cancer had spread to his lungs. This meant that Johna could not travel yet. He needed to have chemo first in Kenya.
Last week we caught up with Johna to find out his story.
We were welcomed to the house by his wife Judy. Johna is watching TV when we get in. He greets us with his left hand; his right side is paralyzed because of the issue of the nerves on his back. He is in pain as the nerves on his back are being pressed and this affects his right side. As we talk he shows us his right hand, the veins are black. Permanent damage from the last time he did Chemotherapy. Chemotherapy really burns and it causes damage to the body even as it gets to the cancer. The best way to describe it is as liquid fire in the body. Johna has to have pillows behind his back, to cushion his back and ease the pain that he is feeling on the right side of his body. I am amazed that Johna is a cheerful guy, and he has a smile on his face, despite the pain he is feeling.
In 2004/5 Johna was diagnosed for the first time with a tumour in the cervical spine, it was a lump at the back of his head and it was surgically removed. Although he was diagnosed with a different cancer at first and he had started chemo. In 2009 the cancer came back and he was taken through both radiotherapy and chemo. The turmour appeared again last year and he was taken through radiotherapy again until the cancer spread to his lungs and now he is on chemo therapy because you cant do radiotherapy again in 5 years even if it is the best option for treatment. His cancer is called Pnet Sarcoma, which is a cancer of the cervical spine. The cancer had cleared completely the last time when he went for radiation and he was clean. He went for clinic every 3 months. In 2014 when he got cancer again he went through radiatherapy but now that it is back he cannot go through radiotherapy again. You cannot be done radiation for 5 years after the last time. Radiation is poisonous as much as it is a cure, it can cause your cells to mutate so you can’t have too much of it.
Johna has never been a heavily built guy but the cancer has taken its toil on his normally slim body. He has lost some weight. The pain sometimes makes it hard to eat and the chemo makes him lose his appetite. Sometimes he has to force himself to eat even though he is nauseous.
Johna says one of the things he has learnt and would like to encourage others to do is get a second and a third opinion. It may seem expensive at first but it could make a difference in how fast the cancer is detected and treatment options taken. He was misdiagnosed the first time and it has made him cautious about trusting doctors.
This time when he was diagnosed again with cancer after a biopsy it took some time to get the test results. This is the time the cancer took to spread to his lungs. Johna had been complaining about the heaviness and pain in his chest. His doctors ordered him to go for an MRI. Immediately the x-ray technicians say his results they asked him to see the doctor immediately. His chest on the x-rays was black and this meant the worst had happened, the cancer had spread. This put a stop to his travel plans to India as he needed to start chemo immediately to stop the cancer from spreading some more. His doctor was in the process of making arrangements for his travel.
Radiation is specific and is done on one spot, but chemotherapy drugs are injected in the veins and so it affects the whole body. The chemotherapy burns and he feels it all over his body. It usually kills both health and unhealthy cells. This means that he has to get immunity booster shots which are 15,000 a shot and he has to take 5 shots for every chemotherapy session which ends up costing Ksh. 75, 000. Chemotherapy session costs Ksh. 60,000 but with boosters it comes to around Ksh. 135,000 for every 3 weeks session.
Many people thing that we can avoid getting cancer if we eat well, exercise well and do everything right. But many cancers are caused by your body just deciding to turn against you. He was 25 when he got the first tumor, a pretty young guy in the prime of his life. His daughter Nikita Cherono was one, the apple of his eye and he was looking forward to enjoying the milestones of her walking, talking and just doing what toddlers do. It was a hard time for his young family and also stressful at his job in sales at the Red Court Hotel (now BOMA). His family has never had cancer and the cancer he has is very rare. They can’t trace it to anybody in the family. Cancer is cruel and it doesn’t care who it targets. If you take a walk to the Kenyatta National Hospital cancer ward you will realize how bad it can be.
Johna was to go to India to get fresh tests for about 6 days. But he can’t go to India because of his back and because of the cancer that spread to his lungs. Traveling is a problem. There was nothing he could have done because he had to wait for the tests for awhile. During this time the cancer was spreading. A PET scan would have changed things as it diagnoses the whole body, as it scans the whole body. It is not available in Kenya. India also has the option of laser surgery which would cut out the cancer. There would be no scarring and no side effects.
Johna used to use morphine to deal with the pain but he has had to stop to avoid getting addicted. The pain is intense. He was going to a clinic nearby every day for shots just so that he could make it through the night and get some sleep. The morphine gave him a high. Once the doctors realized that the cancer was also in his chest and started treating that with chemo the pain subsided. Before he was unable to sleep because one side of his body was in so much pain but the first chemo therapy session has helped abit. The lungs were being pressed on one side and the back. He was changed from the injection to the tablet, which are stronger and it takes the pain away for some time. He had used morphine for the last 7 months to manage the pain but now with the chemo the pain in his back is easing abit so he is weaning himself off the pain medication which, although necessary, can become an addiction.
He has 2 children, his son Kingsley is 3. He comes home from school when we are there and the room is filled with the laughter of an innocent boy who is happy to be back home, ready to spend time with his parents. Nikita is now 10 and the first time he was sick the girl was 1. She has seen him in his highs and lows. It has been difficult sometimes to play with the children. He spends a lot of time in the sitting room, and he tries to play with them when he can. Sometimes he is able to go outside, walk around, and play with them. It is hard to imagine how it is for Johna to not play or spend time with the kids especially when he has gone through a chemotherapy session and he is feeling weak.
Johna works at The BOMA. His employer has been very supportive. He has worked there for the last couple of years. He is now on half salary, and has not been at work for half the year. His workmates come to visit or call him. They had just changed insurance providers when he got sick this time. They were only able to cover part of his medical costs and this money was exhausted when he did the pain management which cost a quarter of a million.
The chemo drugs are not easily available and are very expensive. The drugs for the chemo keep changing so they are not able to plan for the drugs so that they can buy them in India or South Africa. The family is trying to see if they can buy the drugs in bulk which would make his treatment cheaper.
Cancer is an expensive sickness to cure. It can eat up a family’s finances and leave the family broke. We do not have the machines in Kenya that can diagnose what is going on in the body. You can only get this done in South Africa or India as the nearest places. Two of our former ministers for health have had cancer but have had it treated in the US. Cancer is now one of the leading causes of death in Kenya and worldwide. Kenya seems to be going to a gunfight with a nail file. We need equipment to diagnose cancer, and to have this at an affordable price. The machines that can currently do that in Kenya cannot be accessed by just anybody. The cost of the tests is prohibitive and the drugs are also out of the reach of those who do not have a healthy chunk of change in their bank accounts.
The family of Rono gets hope from the story of Jadudi, the fact that he is now able to walk around and that his treatment has been successful. Jadudi has made a remarkable recovery and they are hoping the trip postponed for now will make the same difference for Johna.
When we went to see him he had done one session of Chemo and by now he has done another. He has had to give up meat completely and although his favorite meal is mukimo he can’t have it all the time. What he is able to eat has changed the way the family eats, many times they have to make for him food separately which of course affects the family food budget.
His wife Judy is cheerful despite the challenges. We marvel at this lady who has been there all three times at her husband’s side even as he has gone through these challenges, the first time being when their child was only one. His wife had a shop in the city centre but she had to close it because she is his primary caregiver. It was also influenced by the fact that she was to travel with him to India, a trip that is now on hold indefinitely until Johna is stable enough to travel which will be in a few months.
It has been a long journey for the Rono family and for Johna. The first time he was sick they thought he had pneumonia and he was treated for that. He had a big lump on the back of his head. He was treated for pneumonia for 3 weeks before getting other tests. The second time he could already tell as he could feel the tingling in his right hand that made him know there was something wrong and even this time in 2014 he sort of had a feeling that it was back.
The family had raised approximately Ksh. 650,000 from family, friends, workmates, and social media by September. This money will not last long as he had to do chemo at around 120,000 (chemo plus booster shots) per session every 3 weeks for 6- 8 months which will end up costing around 700,000 to Ksh. 960,000 for the next 4- 6months.
He has had pain management (it is done on the spine to make the pain stop – having the nerves blocked – like what you are done for during a root canal) which was supposed to stop the pain for a long period at a cost of Ksh. 250, 000 in June. He was hospitalized for a week. It didn’t help as after 4 days he started feeling pain again and it was even worse then before.
Johna needs our support. Anybody can get cancer and it can financially drain you. Please find it in your heart to contribute to his treatment by sending money to MPESA Number 621451. Let us support him and his young family. Remember that this is cancer awareness month. Go get tested and if you know that people in your family have had cancer, your cancer disposition could be higher due to genetics. Get tested before its too late.
Potentash Founder. A creative writer. The Managing Editor at Potentash. Passionate about telling African stories and stories about the inclusion of minorities. Find me at email@example.com.
“We're all stories, in the end.” ― Steven Moffat