Judith is a breast cancer survivor. The day she was told she had breast cancer, she pleaded with God to give her five more years so her four children would grow up.
One day after a mastectomy to remove her breast, one of her sons walked into her bedroom as she was dressing. He was horrified to see his mother with only one breast. He called his brother and they made fun.
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“It hurt me but I realized these are children. I made peace with it and life went on,” she reminisces two years after she was diagnosed with breast cancer.
Judith Sheenah Kyamutetera and her husband Muhereza Kyamuterera (MK) are good friends of mine. I have known them for more than a decade. When MK told me Judith had breast cancer, my heart sunk. I had attended their wedding a few years ago and I could not believe the news.
I walked with them the journey. When they sought treatment in Kenya and India, I did what any friend would do to make their journey easier. What I admire the most about Judith and MK, is their determination and resolve to fight the disease as a couple. As the world marked World Cancer Day on February 4th, I would like to honour this couple that has demonstrated that love indeed does conquer all!
You are a mother of four children, now a cancer survivor. Tell us your story…
My journey with breast cancer began in May 2016. One fateful weekend, I had travelled to Mbarara for a fundraiser car wash that my husband was spear-heading. Upon our return, I noticed a lump in my breast. It was darker than my natural skin but was not painful. It looked like I had been hit by a metal so the skin was darker than the rest of the body.
I was breastfeeding my one-year-old child and I suspected it was breast milk. I was confident it would subside whilst the baby suckled on the breast. This, however, was not the case. The lump remained persistent. My husband and I agreed that we needed to see a doctor but he was very busy at the time. Days passed but my mind was not at peace. I decided to go have it checked although I was really not worried.
I went to a gynaecologist who said it was an infection and prescribed medicine for me and the baby I was breastfeeding. Despite the fact that there is no cancer in my family history, I had an inkling to ask if it could be breast cancer. The doctor dismissed me and assured me it was simply an infection. He gave me medication and sent me home. I relaxed.
During that time, your aunt died and it was rumoured that she had died of cancer. How did that make you feel?
Well, my concerns returned, yet again. When I returned to the gynaecologist for review, he was not around. One of the patients in line advised me to go to Nsambya Hospital for a better opinion. The next day, I did and the lump was tested. The doctors proposed that I should wait and receive my results there and then. While I waited, it finally hit me that the results could turn out positive and I was all alone. I called my husband and threw a tantrum as I felt he was not making my health a priority – it was probably the fear talking. Within a few minutes, he came to the hospital and we were told that the results were a tad bit confusing. I had to check in the next day for a thorough test to reach a definite conclusion. They did a biopsy to check the tissue more meticulously. I was told to return after a week.
How was the news broken to you?
The day we were supposed to pick the results, my husband came home questionably early. The kids were on holiday so when he got into the house, I heard him ask for me and they all came to the room in which I was. He said the results were ready so I went to the room to prepare. Shortly after, he followed me into our bedroom and broke the news. The results were out and they were positive. He broke down.
How did you deal?
I felt my whole life had been shattered, it is my husband that broke the news to me and he was all broken. One of my sons then came in and being young, when I looked at him, I immediately got the courage to be strong at least for my children. By God’s grace, I pulled myself up. Many thoughts bombarded me. I told myself if I was going to die, to at least give me five years so all my children would have grown a bit.
I had no idea what was next. I was not ready for this. I asked so many questions. How did this happen? No one in my family had been sick before. How could this be? Is it real? Why me? I knew we had to act fast though. There was no time to lament. The very next day we began processing all the necessary documents to leave the country.
Our passports had expired that month so we had to find a way to renew them as fast as possible. We contacted a few friends who contributed some cash as we were not in any way ready – emotionally or financially. We barely had any savings but our friends were extremely generous and supportive. We left for Nairobi the next day.
What did the doctors in Nairobi say?
In Nairobi, I went through three days of tests and I was found with breast cancer stage 3. The doctors assessed my condition and recommended a mastectomy to remove the infected breast, chemotherapy, and radiotherapy to restore my complete well-being.
What about your family? How did they react?
It was misery all over. My children did not quite understand what exactly it was and what it meant. For my husband’s family and where I am born, they were really scared but quick to pledge their support.
The news was tough to hear and emotionally, I was ready to die. What saddened me most was that I was going to leave my 1-year-old baby behind without a mother. I thought about it and appreciated that if the worst came to the worst, I would be sick for four years and die when my children have grown up a little
What about your husband? How did he deal with the fact that his wife was possibly staring at death?
My husband played a very big role, he was always by my side. To begin with, he quickly made all the major decisions about where to go for treatment. He did a lot of research. Since I did not have health insurance he did the biggest percentage of resource mobilization.
He tried to make my life very comfortable. He accompanied me for all hospital visits. During my surgery, he was by my side. It was just the two of us until my sister came to help. When I went for radiotherapy in India, he accompanied me and stayed until I was fully settled in then he returned home to care for our children.
He ensured our children’s lives stayed normal and running. The day my husband broke the bad news to me he said this to me “we are in this together” and indeed we were in it together. Although he was worried for me, he tried to hide it from me but my friends kept telling me how much he broke down.
What happened after the mastectomy?
I did the operation in Nairobi and I was told to return for the medication after three weeks, as the wound needed to heal. This time was emotionally challenging for me. I would look into the mirror and wonder why this had to happen. I was perfectly healthy a week before, but now there I was sick and missing my breast. My biggest worry then, was my husband’s reaction to me having only one breast. Little did I know, the doctors had shown him the incision even before I left the theatre. I determined in my heart that I would do plastic surgery but later I realized I can do without it. The person I was worried about already knew what had happened so if he wanted to go, he would have already left.
I remember one day one of my sons walked into my room while I was dressing up and he made an alarm upon the realization that I had only one breast. He called his brother and they made fun. It hurt me but I realized these are children. I made peace with it and life went on. Three weeks later, we went back to Nairobi to begin the chemotherapy treatment. I received my first dose and we returned to Uganda.
How did you deal with Chemotherapy?
Despite reading a lot about the side effects of chemotherapy, nothing prepared me for what I went through. I suffered a running stomach, low appetite, discomfort, vomiting, among other things. I took each day at a time and it got better. I started to eat organic and as healthy as I could. I had so much love and support from my family and friends, which kept me going. I got rid of all negative energy in that if anyone called me while crying or lamenting, I would tell them to first compose themselves and then call me back. My friends knew that if they were coming to see me, it would have to be laughter and normal conversation. I realized this was not the end of the world. I had a second chance at life. The doctors had advised me to stay home and away from people but that is not who I am. I love people. After about four doses of the therapy, I started attending parties and living life as usual.
What are some of the things you and your husband did to encourage each other as you fought the disease?
We ensured that we remained together and kept away those funny fights married people usually have. We tried to live a normal life like before.
Cancer treatment requires a lot of money. How were you able to fund the treatment?
After a few doses in Nairobi, I found out that chemotherapy is the same no matter where you get it. I decided to do the rest of my doses in Uganda. I was very sceptical about the Cancer Institute but fortunately, I found a very good private doctor. When he did some tests, he revealed that I needed a certain rare drug to prevent cancer from recurring.
I had a kind special cancer which needed a longer and treatment that was different from the normal one. I was on Herceptin and needed 17 doses. Each dose cost approximately $1,400 dollars and I needed a dose every three weeks.
Herceptin is approved for the treatment of early-stage breast cancer that is Human Epidermal growth factor Receptor 2-positive (HER2+) and has spread into the lymph nodes, or is HER2-positive and has not spread into the lymph nodes.
The treatment cost us an arm and leg. The initial funds that we used were from a closed group of friends who stepped in without us asking them. We had very little savings that we used. I also processed my NSSF savings. Midway, my husband accessed some money from his workplace and more friends contributed.
A good girlfriend of mine mobilized all our female friends in a WhatsApp group and collected money that catered for three doses. As I was going for Radiotherapy we did a fundraising in our home and invited friends to give.
Did you have to make any adjustments?
The illness put a huge financial strain on us as a family since we were only depending on my husband as the sole provider. I was not working, four children to feed and life had to go on as normal for them. We later decided to switch the children’s’ school since the school they were in did not have a van and I was no longer in a position to pick and drop them as I used to.
Then you lost your hair…
All was going well until I started to experience hair loss. I used to wear a cap and every time I would remove it, hair would come off with it. When I would rest my head anywhere, hair would remain in that place. I went to the salon to trim it and advised the lady not to comb it out as I was not ready to start explaining my story.
With time, I just started plucking it off with my hands until it was all off. Losing hair was the most traumatizing because you lose all the hair completely, eyelashes, eyebrows, everything goes! All my life I have hated hair pieces but I had no choice because the head just looked so bad. Many of my girlfriends helped me get nice pieces and I started to make peace. It put me down for a while but I realized later that it could have been worse. I remember one day I was at a party and while I was greeting a friend, the piece fell off. The people around struggled to put it back and when they did it was put sideways. It was hilarious
How did you find yourself in India?
In November 2016, I was advised to do a PET scan to ascertain whether or not the treatment was working and to what extent. I decided to do it in India along with the radiotherapy since both services are not available in Uganda. When we arrived there, we had no clue where to find anything, where to go or how to get there.
A friend recommended a medical tourism company called Magnus that literally helped us with everything. Ordering uber, changing money, finding hotels, book the hospital, basically they made our stay that much easier.
We did the PET scan which revealed that I was cancer-free.
I had done 17 doses of the chemotherapy and still had eight more to go. I did some in India and returned to Uganda in January 2017 to complete my treatment. After all the doses were finished, I went back to India for another PET scan which revealed that I was completely cancer free.
What was your first reaction when you were told you were free of cancer?
Immediately, I did not react. It sounded like a dream and besides I still had the Herceptin doses to finish. Yes, I was happy but at the same time kind of confused.
And your family?
They were really excited about the news. Most of them are prayerful so I got many messages saying God had answered their prayers. Some suggested a thanksgiving ceremony which we are still planning to hold.
After fighting cancer and winning, what next?
I am currently taking some drugs that I must be diligent about for the next 5 years however, I am cancer free. Praise the Lord.
Yes. Throughout my journey, I noticed, with cancer, no one can fight alone. We need one another with full support. I have pledged to talk to people going through this struggle. I visit people in their homes whenever possible to give them a word of encouragement. I also share my experience if it can give hope to one or two people.
I’m trying my best to sensitise people about the advantages of testing. When tested and you discover the disease at an early stage, there are higher chances that it can be treated. It becomes complicated once the disease has matured. Cancer is part of us, if you are not infected you are affected so we cannot run away from it. We need to face it head on and fight hard.
After my treatment in India, I started a medical tourism company in Uganda called Magnus.
Medical tourism in Uganda is relatively a new concept. Our major role is to assist people seeking treatment in India get good services with less hassle.
Going back to your journey with the disease, what kept you motivated and gave you hope to soldier on?
First of all God’s grace kept me calm. The most I was down was for two days after the dose. On the third day, I would be a bit normal. I tried as much as possible to live a normal life. Even when the doctors advised me to keep away from people to avoid infections, I went against their advice because I enjoy being around people.
I had a great support system, everyone around me did something to make me happy, there was positive energy. My friends and family shielded me a lot. For those that called me while crying, I told them to hang up and call me after they had finished crying.
I also came to terms that death is a must once you are born.
Around that time I lost a friend after a very short illness (may Momos soul continue to rest in peace) she visited me in the beginning of the week when she was OK. Midweek, she fell ill and died.
I appreciated that not all people who die, die of cancer.
I got to interact with survivors who shared their stories and I was like “if they made it I will also make it.”
The support I got from my family was marvellous. There is a sister of mine that made me her work. She came to my home every morning and left every evening. We would talk and she prepared me good meals, I was never lonely.
Did you ever think what would happen to your children if you did not make it?
Whenever the thought of my children being orphaned at an early age came, I tried my best to brush it off. But still, I believe it is God who protects.
When you meet cancer survivors, what do you talk about?
I never get to feel I have heard enough. I am always interested in knowing what the survivors went through. Basically getting to hear their full journey. We motivate each other and advise each other especially on what we think worked for us.
Your mother recently passed on, what role did she play during your illness?
Oh, my lovely mum! May her soul continue to rest in peace. My mother left her home to come and be with me. She made sure I ate my meals, if I delayed in my bedroom she would be on the door to find out if I was OK. On the day I was too weak to get out of my bedroom especially because of the side effect of the medicine, she did the work of the waitress. She basically nursed me.
What would you tell a person reading this story and is battling cancer?
Even after the diagnosis, there is still hope. Cancer is not a death sentence. There are many survivors out there and you can be like them. Have a positive attitude. It is not a shame to suffer from cancer so do not struggle hiding the illness or hiding.
Surround yourself with people who have the right attitude towards life. Eat well, exercise and avoid stress. Cancer is not a disease that you can afford to wait for treatment. Make that decision very fast and start treatment. Avoid a pity party. And above all pray to God.
Finally, I would like to encourage you and tell you that your situation is not permanent. If I can make it, so can you. Right now, I am much stronger and I believe I can handle any situation life gives me. God has given me another shot at life and I am more equipped for any challenge.
And for those without cancer?
Get tested NOW!!! Early detection enables proper treatment. It is the best way to treat cancer. Please do not fear to go for screening because if you wait, you will find it’s too late while now you can get early treatment and move on with life. Choose life.”
I would like to tell ladies out there to make it a point to go for breast cancer screening as this was not a pretty experience.
This story first appeared on: http://www.uncommon.co.ke