Living on nothing but hope: My battle with stage three breast cancer

When the sun ducked down behind Indian Ocean in Diani, a resort town in Kwale County, we knew it was time to leave for Nairobi. The night air was cool, and the world outside was still active. Every drift of the ocean waves a few kilometres from where we were reminded us of the uncertainty of the journey ahead. We were travelling by train accompanying Lydia Sasanu –a breast cancer patient whose first hospital appointment of the year was due. 

Our destination was Kenyatta University Teaching, Referral and Research Hospital (KUTRRH), about 500 kilometres away on the outskirts of Kenya's capital.

We got to Lydia’s house a few minutes to 8pm. Earlier in the day, my colleagues and I chaperoned her at a local hospital,  where she had her left breast dressed and cleaned as is her daily norm. In the dressing room, she wore bravery like the bark of an old tree. It was our first time seeing a cancer wound being tendered. The two nurses in the room worked with skilled coordination, and with the composure of a lion whose prey has given in to the chase. It is only after the dressing that we first saw a pain episode that almost weighed her down, but she had painkillers that helped in calming the brewing storm. 

The uncertainty of the journey started manifesting when we couldn’t leave at 8pm as agreed. We found Lydia lying in a state of prostration – forehead on her pillow, right hand on the left breast, her behinds up, whimpering, as she made requests of prayer. My colleague prayed. An hour and 15 minutes later, the pain subsided and we had to find our way to the Mombasa terminus of the Standard Gauge Railway. At the time, all vehicles that take passengers to the terminus had left so we had to find an alternative for us to catch the 10pm train.

“I cannot miss the appointment, I hope we won’t miss the train,” Lydia muffled as she put her things together ready for departure. 

As Lydia stepped out of her house, her three-year-old son held her skirt tightly and used his other hand to block his mother from leaving. He had a downcast gaze, almost begging us not to leave with his mother. Lydia held his hand and walked with him to the car we were using. He got in and sat on the co-driver’s seat, where Lydia was poised to sit. The little boy was at peace in the car, he did not want to leave. Eventually, his  caregiver had to forcefully take him away so that we could proceed. He did not want to go, but he had to.

We got to the terminus five minutes to departure. Printing our tickets took another two minutes and so we had three minutes to run to our specific coaches. I deliberately ran behind Lydia. She was surprisingly fast and when the hostess who was standing outside coach five gesticulated that we could get in, it was such a relief. Our seats were in coach 10, so even while inside, we still had a long way to go.

“I feel like vomiting,” Lydia told us as we moved towards coach six.

There were empty spaces on that specific coach, so we requested a random passenger to allow her to sit next to her until the nauseous feeling ebbed away. She sat there for 30 minutes and then teetered towards coach 10. She took the window seat and I sat next to her on the aisle seat.

“I am hungry. I need something to eat. I am afraid I don’t have many options here so I will just take tea and a snack,” she told me.

A stewardess was passing along the aisle selling food to passengers who made requests. I motioned her and asked Lydia to make her order. She took sugarless tea, a muffin and water.

“I am not supposed to take this muffin, but what do I do, I have not eaten since morning except for porridge. That’s what I usually do,” she said.

We chatted as she drank the tea until she stopped and placed the paper tea cup on the train table. 

“Hellen, can you pray?” She posed.

I remembered the first pain episode and hoped that there was no imminent pain attack. I responded in the affirmative, and went ahead to pray for her. She lay on the train table groaning. She asked us to request the hostess to switch off the air conditioner, which was affecting her. The hostess complied. Other passengers started staring, their faces imploring questions, but we didn’t give the answers. 

“She is unwell, she will be fine,” one of my colleagues told a curious neighbour. 

Lydia needed more space to lie like she did when we were at her house earlier that night. 

“I take this position because I feel like my breast that is in pain detaches from my body –even when it doesn’t, I get some sense of relief in this position, but the pain is not just in the breast,” she said.

We managed to get another seat and she slept in her comfortable position. She then applied a pain balm around the wound. 

“I feel like my hand is burning,” she told Adrams Mulama, our camera person. Adrams asked her what she does when she feels that kind of burning sensation. 

“I pray, I have no option but to pray,” she responded.

It was Adrams turn to pray. The whole night, when Lydia was grating in pain, he soothed him with prayer until she finally slept just 30 minutes to our arrival in Nairobi.

Freezing

Nairobi, unlike Diani, was freezing. Lydia’s condition detests the cold. She added one layer of a shuka that one of my colleagues gave her for more warmth. We were to catch a matatu to Ruiru and then a Tuktuk to the hospital, but we missed a spot in the only matatu by a whisker. We made it to the hospital by 5am. Lydia took a ticket –she was the fourth in the queue and she sat there waiting for her doctor, who showed up at 9am.

Journeys like those are usually lonely for Lydia.

Growing up, Lydia was a smart student. She went to Alliance Girls’ High School and later studied BSc Mathematics and Computer Science at Jomo Kenyatta University of Agriculture and Technology (JKUAT). 

For seven years, and some days, she was an excellent employee. Her grandparents raised her when she lost both her parents, and to this day, they still take care of her.

Lydia got her first son in 2021. In December that year, she took her son to Taita, where her grandparents live so they could see him, and also for baptism.

“When I was breastfeeding my son, I noticed that he could suckle the right breast and play with the one on the left. One time when I was showering, I noticed that something was actually growing,” she narrated.

“I didn’t tell anyone; I didn’t want to scare my grandparents. It hit me, could this be what they talk about, the lump? But, I just didn’t want to make anyone panic. I know that my family has buried a number of people with chronic illnesses, but no one mentioned that in public.”

When she travelled back to Diani after the holidays, she noticed a pattern when her son breastfed, and that was a cue for her to visit the hospital. She first went to a local dispensary where she used to take her son for post-natal clinics. That is when she first mentioned to a nurse and a paeditrician, who dismissed her.

“Are you a first time mum? Don’t think about such things,” the nurse told her. 

The statements came as a relief and not really as a dismissal; so she went on with her life as usual. Two months later when she went for a check-up in a different hospital, a nurse recommended that she takes an ultrasound. She planned for it and came back later.

“By April, the lump, which felt like a ball, had grown really big. My son continued playing with it,” she noted.

She went back to hospital and had a breast ultrasound. 

“I was there with the baby alone; the sonographers took turns to carry my baby and after that the doctor proposed that I do a Fine Needle Aspiration test. I didn’t have a medical cover and at the time the test could only be sought in a private facility.

“I finally got the service at a missionary hospital. They inserted a needle in the lump and pulled a liquid from it to test it. Once they did that, I had so much comfort, I felt like I was back to normal. I even forgot about the fluid that was taken out for testing,” she recalled.

A Fine Needle Aspiration test is a medical procedure that uses a special needle to extract a sample of cells, tissue, or fluid from a lump or mass- in Lydia's  case- from a breast.

The results came and the conclusion had a recommendation showing that she had to undergo a lumpectomy. This is a surgical procedure where a surgeon removes a breast tumour and some of the surrounding tissue. This time, she had paid up for the defunct National Health Insurance Fund (NHIF).

“The doctor told me that I did not have cancer at the time but the more I stayed without the lumpectomy, it could turn cancerous. I was confused, and that was the first time I told my family about my medical issues.

“I used to stay alone with my child. I remember feeling fatigued all the time, but I am a person who prefers working on my own so I barely asked for help,” she added.

She went to a hospital and the consultant proposed that she starts all over again, with an ultrasound. This was in April 2023. The tests dragged on and she spent almost two months before getting to the breast clinic. The consultant proposed that she needed a needle gun biopsy.

“That was another procedure that was not covered by NHIF. I waited for two weeks in June for my biopsy results. At this point, I felt itchy and the lump had really grown. I continued breastfeeding my son but I couldn’t carry him on the back.”

The results from the biopsy read that she had fibroadenoma, a non-cancerous breast tumour.

“My doctor told me that it was not much of an issue and that many ladies have it and people can live with it.”

Lydia asked the doctor to just get it out if it was a non-issue. 

“The first time I applied for NHIF to help in paying for the surgery, with the help of the doctor. It was denied. I pleaded with the doctor to give me another date and still it was denied because they felt like we did not explain the procedure even when the doctor did.”

She paid out-of-pocket after two months of waiting. 

“I stayed in the surgery room for only six minutes. In those six minutes, one of the doctors noticed something and they concluded that I didn’t need surgery then,” she remembered.

“At that point, I was sure that it was going to end up as a cancer diagnosis. The doctor followed me to his office and apologised and told me that they had missed something, and he asked me to have an ultrasound-guided biopsy.”

Lydia had gone to hospital with just a few coins. She was required to buy another needle gun for the biopsy. 

“That cost me Sh10,000. At that point, I was just thinking of my son. I had to solicit for those funds and that was the first time I opened a WhatsApp group to ask my friends for help. I previously thought that I was independent and I could do it,” Lydia told Healthy Nation.

The next day, the ultrasound was done and she was discharged. They waited for the biopsy results for another fortnight.

“Is there something that can be done about this? Can we have more biopsy centres in this country? More pathologists maybe? Can the students be involved? Two weeks is a long time” she asked.

Her intuition was right. Her results came back and she was diagnosed with cancer. 

“For me, those results were the end of the struggle of leaving my son to go to hospital. I felt like finally, I had a diagnosis to work with,” she said.

Her family told her they needed to move things fast and she should start getting treatment.

“My only worry was finances but my brother-in-law chipped in. We went to a private facility and had another biopsy that classified the type of breast cancer that I have, which is triple negative breast cancer.”

Triple negative cancer is the most aggressive type of breast cancer. This was in November 2023, almost a year of trying to get a diagnosis.

“All those months that I waited to get my diagnosis rendered me stage three. That hurt to the bones. That was the worst statement in this cancerous journey,” she paused, crying.

“Every time I think about that; it makes me emotional because people tell me that I am well educated, how could I have waited for the cancer to reach such an advanced stage. The truth is, I went early. I went immediately, but the back and forth in the hospitals and the lack of finances made the disease get to an advanced stage. NHIF only comes in when you have the diagnosis,” she explained.

Lydia started her chemotherapy; and the lump had become so painful. She had 12 sessions of three cycles every week.

“It is a day thing, you go in the morning, book a spot and wait for your turn. The nurse comes in and prepares you. You are then injected with drugs into your veins. Some of my veins no longer function because of the drugs.”

After every week, she could go for review to check if the drugs were working. She paid out of pocket. Her journey from Diani to Mombasa was eventful, especially when crossing the ferry and all this time, she used public transport. 

“I realised there are actual human beings who can help people.”

The doctor proposed a surgery and when the time was nigh, there was a doctor’s strike and all public hospitals were dysfunctional. She went to a private facility and paid out-of-pocket for the surgery. She had asked for help on Facebook, where she had now started documenting her cancer journey. Friends and strangers came through for her.

Chemotherapy

The surgery went well after two months, but the doctor told her to continue with chemotherapy so as to kill cancer cells that might have escaped the surgeon's blade. She was to have four sessions. 

 “I went to an oncologist who recommended a pet scan, one which is covered by insurance only once a year. It costs at least Sh55,000 if one pays out-of-pocket.”

This time, it is her grandmother who sent her the money (she sent Sh80,000). Three months later, after three sessions of chemotherapy ,the cancer had recurred. The oncologist told her there was no need to have another session of chemotherapy.

“The doctor told me that the chemotherapy drugs were not working. This part of my story reminded me that doctors treat, but God heals. I had spent a lot. When I left that office, I lost trust, and that is how I went to KUTRRH,” she says.

Lydia’s trips to Nairobi have always been as tough as we experienced. When she finally saw the doctor that morning, she was given another appointment on Monday. Lydia opted to stay over the weekend at her aunt’s place in Syokimau. Because of the pain, a driver has to drive slowly to avoid the bumps especially in murram roads. She slept like a baby that weekend, except on Sunday night when she had another pain attack. It was the first time her aunt experienced it and just like us, she did not know what to do except to pray. Thankfully the pain subsided. 

On Monday morning, we met her at the hospital’s Comprehensive Breast Care Centre. We all got there at 8.30am. 

We sat on the benches with her and waited for her turn to see the surgeon. She went in and came back fulfilled. The doctor referred her back to a hospital in the Coast region to avoid the long trips in Nairobi. She will now start a new treatment regimen, with elevated hope that she will pull through and take care of her son.

She asks the government to fast-track the Emergency and Chronic Illness Fund under the Social Health Authority, which Health Permanent Secretary Harry Kimtai told Healthy Nation that it was put on hold because of the quashed finance bill.

“Cancer patients are suffering. Chemotherapy sessions are paid for under SHA-  about Sh300,000, from the previous Sh600,000 with NHIF,” said Lydia.

Lydia has no dietician, so she has no one to guide her on the Dos and Don'ts.

“My plea to the government is that we have patients from different parts of Kenya. I believe it is possible to have cancer centres in different parts of our country. If there are hospitals that have centres but no licences, please give them the permits,” she said. 

As days go by, Lydia's savings, which she received from friends and strangers who offered to help, are depleting. She still needs financial support even as she remains hopeful that the government will consider people like her.

hshikanda@ke.nationmedia.com