Sat. Apr 20th, 2019

Five cancer survivors share their experiences

As the globe marks World Cancer Day, five survivors share their tales of fighting the dreaded disease and defying the odds to remain alive. Hopefully as more cases are reported countrywide, their voices will encourage patients that there is light at the end of the tunnel.

VIOLET SHUNZA, 31

I’m a survivor but will forever carry a colostomy bag

In 2012, I would experience painful stomachaches and would self-medicate with painkillers. Later in 2014, I realised I had a tumour in my tummy.

Several hospitals diagnosed me with what they called “stubborn ulcers” and put me on medication. But in 2017, the pain was unbearable, and between January and February, I dropped from 60-30kg. I went for tests at Kenyatta National Hospital and a CT scan showed pelvis abscess.

I was scheduled for surgery on October 3, 2017. During surgery, the surgeons realised I had been misdiagnosed; they called in the general surgical team to remove the colonic mass they had detected. The operation took 10 hours.

My life of not going to the loo the normal way had just begun. They made a hole on my abdomen wall and fixed the colon there. I looked at myself and said maybe they didn’t complete the operation. A nurse came in and she broke the news to me that I had colon cancer. I was so mad, scared and embarrassed, I wanted to just walk out and leave the office.

I was admitted for three months and when the results were out, it showed that I had stage two cancer. I saw an oncologist and my treatment involved 12 cycles of chemotherapy. I didn’t lose my hair but it thinned, my skin darkened, I had black veins like an alien and experienced lots of nausea.

I finished the treatment on October 5, 2018, after 10 months. I was scared of stigma and became a loner until I joined a self-help group of people like me at Aga Khan Hospital, where we meet every second Saturday of the month.

I am now 62kg, and although I have to walk around with a colostomy bag, I am free from colon cancer and I am a survivor.

MARY GATHONI, 28

Side-effects of cancer treatment haunt me up to date

In 2012 just after high school, I noticed a swelling on the side of my stomach (inguinal). This seemed normal to me since I had it since 2009 when I was in Form 2. The only abnormal thing was that it had grown from a pea to as big as a mango.

I had a part-time job and my boss forced me to get checked as the lump was protruding on my outfits. I asked myself why get checked yet it wasn’t painful? Anyway, I went for a check-up because I didn’t want to lose my job.

I must admit my boss saved my life. I got to Nyeri General Hospital and the moment they did a test called FNA, that was the beginning of unbearable pain, insomnia, mouth sores, loss of appetite and having to care for a wound that took an eternity to heal.

I was handled like a specimen with so many doctors in lab coats coming to do tests on me. Finally, I was diagnosed with Non-Hodgkin lymphoma cancer.

My journey for treatment started in January 2012, and it took three months to get an NHIF card, which barely helped.

I had to do 12 cycles of chemo and each cost Sh35,000. I also went through 25 sessions of radiotherapy. My family could barely afford it. Being the second born in a family of nine with a single mother who was struggling to feed us, it wasn’t easy.

By the end of 2012, I was diagnosed to be free of cancer. The trauma I face now is I didn’t have someone to counsel me on the side effects of treatment, some that may be permanent.

Seven years after being free of cancer and my eyesight has never returned to normal. I suffer insomnia and my teeth still have cracks, I rarely eat well and have never weighed more than 49kg.

The pride of every woman is to have a child but my menstrual periods were permanently affected by the cancer treatment. My cycle is more than abnormal. I can’t even remember the last time I had periods. When they come, it’s for a day and they’re gone.

The last doctor I saw told me that I may be infertile, I don’t want to believe it but I know my body and I can feel the difference. Lastly, I am 28 years and I forget things that I feel I shouldn’t forget at times. It’s my desire that cancer victors like me work towards the creation of awareness of side-effects to those diagnosed, and also advocate cancer screening.

MILLICENT KAGONGA, 29

Hard to find employment as a cancer survivor

I am now 29 years but I had my first child, who was recently admitted to Form One when I was 14. At the age of 16 years, I was a mother of three. This is when my journey with cervical cancer began.

In 2010, my husband chased me away because I frequently had vaginal discharge. He hated it especially during sexual intercourse. I had no money for medical care and instead moved back upcountry, where my mother was. Within six years, the discharge had changed colour and looked more like pus. It also had a pungent smell that made people stay away from me.

Before I knew it, my private parts started producing blood clots. I could feel a tumour coming out from my private part and this is when I was forced to go to the hospital to get checked.

In 2016, I was screened and diagnosed with stage four cervical cancer. Treatment was my biggest challenge. I needed Sh13,000 for a biopsy but I couldn’t raise even a shilling. Fortunately, I met a doctor who helped me process my NHIF card and I managed to come back to KNH, where I had a minor biopsy surgery of Sh40,000 done. NHIF covered the full cost but a month later, the nightmare began. I would wake up to a bed full of blood. I got to a point that holding a long call was hard. Before I got to the loo, it would be out.

In November 2015, I started chemo and radiotherapy and within three months, I was done with my treatment. I am almost fully recovered but what I need to live with is early menopause and the fact that sometimes I still can’t hold my stool for long. My cry to the government is that through our health may at times not allow us to do heavy jobs, we have talents and some of us are educated but some employers turn us away because we have cancer or are cancer survivors living with side-effects.

MOSES OTIENO, 22

Negligence cost me my leg

While in school aged 17, the principal was addressing the school when I fell down unconscious. I came to at Kiambu General Hospital.

This was when I was diagnosed with a cancerous tumour in my leg. It had itched a couple of times while in form two, but most of the time, my parents would rub my knee with rob and hot water. The itching turned into a painful sore until I ended up in Kiambu Hospital, where the medical team said my case was beyond them.

I was transferred to KNH where, unfortunately, I couldn’t be treated without being admitted. I was admitted at KNH on April 2014. At this time, cancer had already spread up to my upper thigh and I could barely do anything.

Interestingly after two weeks, all they did was a biopsy and I was discharged and told to return after one and a half months. I couldn’t go to school because I was too unwell to even sit in class.

On July 5, I lost my leg and after that, I was pumped with painkillers until I was discharged in January 2015. What I have never understood is why I was never counselled on the journey and secondly, whether not having funds made me not get treated on time. Perhaps I would still have my leg before cancer spread into my bones.

After some time I went for chemo but due to lack of funds, I could only afford two sessions. God helped me because even after stopping chemo, my check-up months later showed that cancer had cleared in my body. I managed to go back to school and finish my education, and now I can do sign language and I play amputee football. I believe I have a future.

SALLY AGALLO, 49

What gives me the most hope every day is God’s grace

I have lost two sons, survived a toxic relationship, and survived three types of cancers and 13 operations. I have also lived with HIV for 20 years now.

It all began in the 1990s, after I got married. My husband and I lived in Mombasa and for a while, everything was going well until I delivered a baby prematurely at seven months, who after a few weeks succumbed, and my second child only lived for two months.

When I thought I could not deal with anything more, I received another blow in 1999 when I discovered I was HIV positive. The news was broken to me very casually by the nurse.  I was told, “Ukona ukimwi.” It is in the 1990s and ARVS were not readily available. The medication also was so expensive. A week’s dosage would amount to Sh60,000.

HIV victims were highly stigmatised at the time. I got severely depressed and I attempted suicide by diving from the ferry into the ocean. My marriage was toxic at the time, so I moved out.

In 2007, there was a routine check-up at my workplace. I did a Pap smear test, and the doctors and I set an appointment date for my results. But I was called sooner than that and told to go as soon as possible. I was informed that I was at stage two of cervical cancer. I was in shock because I had no previous sign or symptom.

Just like with HIV, when the doctor was breaking the news to me, he did so very casually. He even said to me, “You already have HIV, so this is just another condition.” I wondered, how could anyone be so callous when telling a patient about a terminal disease?

The oncologist advised me to undergo a full hysterectomy because my immunity was very low, with a CD4 count of 10 (a normal CD4 count is about 1,000 cells). Hysterectomy entails removing the uterus and cervix.

This came as a blow to me because I had already lost my babies and this surgery meant that I could not conceive again. I took a long while to think about it, but the surgery was finally scheduled for and done in March 2007.

While I was at the hospital, a relative came to visit and she told me that my husband was looking for a woman to have children with. I confronted him and he admitted it. “You cannot give me babies and I am still young. I don’t know where you got all these illnesses from; first HIV, now this,” he said.

I went to live with my sister, who had lost her husband. In 2010, three years after my diagnosis and 13 surgeries later, a check-up showed that cancer had spread to my colon. I was diagnosed with colon and rectal cancer.

After one year, cancer spread to the rectum. Another surgery was inevitable. Part of my anus and colon were removed. Doctors created a stoma and fixed a colostomy bag on my belly for me to pass waste.

On January 12, I won the ‘Women add value recognition’ award. This is an award given by the ‘IChange Nations’ for inspiring people and making a difference through one’s story.

Via The Star