Cancer survivor: I fight on for those left behind

Ivasha Cyrilla is a 29-yuear-old graduate of food science and nutrition. She is also a cancer advocate and one of the young people behind the vocal Kisumu Cancer Support Group. She tells her story:

“I was 25 years old when I was diagnosed with cancer, in what started as a simple sore throat four years earlier: throat pain, difficulty in swallowing, hoarseness and a cough.

I was 21 then, a student at the Jomo Kenyatta University of Agriculture and Technology (Jkuat), studying Food Science and Nutrition.

The institution’s hospital gave me medication for a sore throat, which I expected to clear within days. It didn’t. Feeling worse, I returned to the hospital.

The doctor examined me again. This time round, he detected two barely visible swellings on my neck, one on the right side and another at the base.

Concerned, the doctor sent me to do an ultrasound to find out exactly what the swellings were.

It was then recommended that more detailed tests be done at Nairobi West Hospital, where a sample was taken from the swellings through Fine Needle Aspiration — a procedure in which a thin needle is used to draw cells or fluid from a lump or mass under the skin.

THYROID SURGERY
I took the results to a specialist at Lang’ata Hospital, where, to my relief, I was told that it was just simple goitre, a swelling of the neck caused by enlargement of the thyroid gland.

The doctor however warned that if he did not do an excisional biopsy, we might be ignoring cancer.

A biopsy is a surgical procedure in which an entire lump or problem area is removed for diagnosis.

In January 2012, I had surgery for the first time, performed at Lang’ata Hospital. A quarter of my thyroid gland, which had swollen nodules, was removed.

I felt much better, as the pain lessened, but only for a short time. The swelling on the right side of my neck persisted, and after some time, the pain returned.

In May 2012, I had surgery for the second time. This time, the entire right lobe of the thyroid gland was removed.

The hope was that removing the thyroid tissue would make the swelling go down and ease the pain.

The thyroid gland is a butterfly-shaped organ at the base of the neck. It secretes hormones that control how the body uses energy.

Every cell in the body depends on thyroid hormones to regulate their metabolism.

CANCER SCREENING
Hormones produced by the thyroid gland control various body functions, including breathing, heart rate, weight and body temperature. Now, I had only half the gland.

After the second surgery, the swellings were still diagnosed as goitre. I was put on medication and was required to go for regular check-ups.

The doctors were hesitant to touch the swelling on the right side of my neck because it was lying on a jugular vein, making it too risky to attempt removal.

Any mistake would have led to a grievous outcome. Yet the swelling did not respond to medication.

Instead, it grew into a cyst that had to be frequently drained, although analysis of the fluid did not show a particular disease.

I was not at peace. A possibility of cancer had been mentioned, yet the tests failed to show its presence.

This made me worry that it was growing, unnoticed. The word ‘cancer’ weighed on me for another reason: my mother had died of breast cancer when I was 11 years old.

I had been told that some cancers run in families, so my sister and I frequently went for breast cancer screening to ensure we got treated as early as possible if we ever got it.

CONGENITAL DEFECT

Googling my symptoms worsened my fears. I became depressed and was admitted to hospital for a week.

When I got better, I decided to give herbal medicine a try, since conventional medicine wasn’t working.

I found a herbal doctor, who gave me medicine that erased the pain, but the swelling persisted, but life had to go on.

I graduated in 2014 and got a job as an administration assistant at an engineering firm based at the Jomo Kenyatta International Airport.

I would hide my swollen neck behind long braids, polo necks and scarves.

Towards the end of 2015, the pain returned, sending me back to Nairobi West Hospital to have my throat and the swelling checked.

After an ultrasound and CT scan, the doctor said it looked like a branchial cyst, a congenital defect. The doctor was not completely sure though, and suggested a surgically removal.

In January 2016, the cyst was removed and the tissue sent to the laboratory for analysis.

THYROID CANCER

A few days later, I picked the results from the laboratory and took them to my doctor.

He studied the papers and gently said: “The results were not what I expected. It says here that you have thyroid cancer, but I think they need to redo the test just to be sure.”

The second test confirmed the first results. Four years after going to hospital with what I thought was a sore throat, I was finally diagnosed with thyroid cancer.

Maybe because of the shock, I didn’t react to the news then. That night, however, I cried myself hoarse.

For two months, I was subjected to a battery of scans and tests as I prepared for a major operation to remove the cancerous tissue.

Eventually, I had to stop going to work to concentrate on my health. I was later referred to a surgeon at Nairobi Hospital, who recommended cutting out the entire thyroid gland and the affected lymph nodes because if they remained, the cancer would continue to spread.

Shortly after diagnosis, I began looking for cancer patients and survivors for support.

Although my family was very supportive, catering for all my medical expenses, I needed to find my tribe.

FAMILY'S ROLE
I remembered that in 2015, a cancer patient’s story went viral on social media, and Kenyans contributed over Sh6.4 million in two days for his treatment in India.

His name was Emmanuel Otieno, popularly known as Jadudi. I reached out to him via Instagram to ask how he was doing and also to talk about my fears.

He responded, and we hit it off immediately. We would check on each other often. Finally, I’d someone to talk to.

Don’t get me wrong; my family supported me, but there is a kind of support you get from your peers, those on the same boat, that you might not get from family.

Jadudi suggested that when I got better, we should come together, look for other patients and form a support group.

In April 2016, I had a total thyroidectomy. Thyroid hormones are so important that in the absence of the thyroid gland and medicine to replace the hormones, the body would feel lazy, weight would pile up, the heartbeat would slow down and finally a person would go into cardiac arrest.

Removal of my entire thyroid gland meant I would be on medication for the rest of my life.

SUPPORT GROUP
I then underwent radioactive iodine therapy. I was put on a special diet for three days, after which I took a radioactive pill that destroyed any remaining thyroid tissue that was attached to my voicebox.

I was later isolated. And for two weeks, I could not be in contact with anyone because I was radioactive.

I couldn’t even be in the same room with the person bringing me food. Upon my discharge, I travelled to Kisumu to meet Jadudi.

Together, we had a chat with cancer patients from Jaramogi Oginga Odinga Teaching and Referral Hospital, which gave birth to the 10-member Kisumu Cancer Support Group.

There were no men or young people, probably due to the stigma around cancer. Some even hide it from their boyfriends and girlfriends because they fear to be abandoned.

A main purpose of the group, which caters for those in Kisumu and its environs, is to encourage one another to keep going.

Long-term survivors are proof that cancer is not a death sentence, even for those that have relapsed. We have in the group a team who counsel patients regularly.

We also began house visits. Jadudi and I were among the youngest in the group and had more energy than most to do the visits.

Jadudi would host me whenever I was in Kisumu. He was still relatively strong, and his family had got him a car to ease his movement.

BODY SCAN

This is the car we used to drive ailing members of the support group to hospital.

Since we did not have money to pay bills for members, we offered what we could: emotional support and physical presence.

Later, a friend of Jadudi, Omondi Ochuka, a well-known cancer advocate, joined our group. So did Sharon Wambui and Dorcas Ndong.

The five of us, between 24 and 27 years, were the youngest group members and steered the direction and mission of the group. The rest of the group — predominantly older — were breast cancer survivors.

I did a full body scan in November 2016, only to be given the devastating news that I still had cancer.

I was heartbroken, but at least I had support from the group, and I could therefore, handle the news better.

In April 2017, I was admitted to hospital for another round of radioactive iodine therapy. The scan I did a month later showed a clear body, but I needed another taken after a year before I could be declared cancer-free.

SURVIVOR'S GUILT

I resumed support group activities. By 2017 — the year we lost Dorcas Ndong — the support group had registered more members and the awareness programmes and screenings became more frequent, and the members went deep into communities to talk about cancer.

Dorcas succumbed to stomach cancer at the age of 24. Her death affected me deeply because we spent a lot of time together.

She passed away just after I was discharged from the radioactive iodine therapy treatment.

Since I was radioactive, I had to grieve alone. It was the first time after my mother that I lost someone very close to me.

I later spent a lot of time with Jadudi and Ochuka in Kisumu, talking about our conditions.

Jadudi was always the most positive, refusing to engage in dark humour. As for me, I preached water and drank wine.

During our outreaches, I would encourage fellow cancer survivors to have hope, but I didn’t believe what I was saying.

Afterwards, I developed survivor’s guilt. I had lost Dorcas, and my other friends were in and out of good health.

I felt guilty for being the healthiest one, for having a cancer that did not spread as rapidly as the others, and no longer knew how to relate with my friends.

CANCER-FREE
Chemotherapy and radiotherapy are pretty harsh compared to radioactive iodine therapy. It felt like I had an easy time.

Ochuka was badly affected by the treatments, and even when I wanted to talk to him, I didn’t know what to say.

The only way that I could be there for him and Jadudi was to be physically present.

The last time I had a proper conversation with Jadudi was in February 2018 before he travelled to India for treatment.

Thereafter, he spent a lot of time in hospital, slipping in and out of coma. His deterioration affected Ochuka a lot since they had been long-time friends.

I realised that depression sets in because when you lose friends, you feel as if you’ve lost yourself. The side-effects of the medication also affect you.

In May 2018, I was finally declared cancer-free. It was good news, yes, but I had seen many people with recurrences, so I could not bring myself to celebrate.

In fact, I never told anyone apart from my remaining four friends about the news.

LEADERSHIP PROGRAMME

Almost a year later, on the March 4, 2019, Jadudi passed away at Jaramogi Oginga Odinga Teaching and Referral Hospital, the same hospital where in his better days, he had sought cancer patients in need of support and comfort.

The news hit me hard. There was the fear that the group would fall apart since he was pivotal to it, but it remained steady. We still hold meetings and coordinate activities.

Knowing that Jadudi had left a big gap, I enrolled for the Global Emerging Leaders programme run by A Fresh Chapter in September 2019.

The programme picks cancer survivors and trains them on advocacy. Through the programme, we expand our ideas on fundraising and running awareness campaigns.

We now have 28 registered members, with many others drifting in and out. We’ve managed to get mastectomy bras from my networking during training.

Other organisations have come in to train Kisumu’s breast cancer survivors, who underwent mastectomy to knit woollen prosthetic breasts.

The knitting has a big impact because members feel they’re involved in bringing back their former selves.

PROVIDING HOPE
Various organisations have supported the group. Last October, we had an awareness walk with all partner organisations, an event that gave birth to the Kisumu Cancer Alliance.

This is the body that is in charge of bringing all cancer organisations and groups in the region together for events and fundraising.

I became an advocate because I wouldn’t want anyone to feel as lost as I did after my diagnosis.

I want people to know that even through the denial phase, there are people willing to walk with them.

I want people to work on their mental health because cancer is not just a physical fight.

When I do the advocacy, I’m doing it for my mother’s memory and my friends who left. If I can help just one person to fight through or even buy time, I’ll be happy.