What you need to know:
For Mwende Mutiso everything started with a lump when she was 23. Many doctors later, she was diagnosed with breast cancer. At 29, she is today a metastatic breast cancer survivor who lives life to the fullest
“The years before 2016, I was making huge strides in various aspects of my life. Even before I could join the university, I was making money in promo sales, had trained to work as a graphic designer, and got an internship to work at two different organisations. My goal was to support my mother in meeting my tuition fees and expenses.
I had been accepted at Daystar University to pursue a course in psychology and counseling and I was really looking forward to it. Then, just before December 2015, I noticed I had a lump on my breast. I had it checked and I was told that it was nothing serious. It would go away after some time, they assured. It didn’t.
Six months later, I was diagnosed with stage zero breast cancer. It is also called pre-cancer since it's the earliest stage that cancer can be detected. The particular one I had is called Ductal carcinoma in situ (DCIS). I was 23.
To get here, I visited about five different hospitals with doctors ruling out cancer partly because of my age and the fact that I didn’t have a family history of any type of cancer.
At first, we had been advised to do a cone biopsy or lumpectomy (surgery to remove the tumour). Due to financial constraints, we settled with the latter.
When I received the news, I was in auto-pilot mode. I can’t describe how I felt but with the age factor and no family history, it was like I expected to hear that it was a misdiagnosis. We sought another oncologist's opinion and we got the same results.
I was in my first year of studies as this was unfolding. I could not get an immediate radiotherapy slot in a public hospital so we did crowdfunding and I went to a private facility. All that was on my mind was that I wanted this done with so I could go back to my former life. As a hobby, I painted and weaved baskets. I enjoy hiking too, something that I have picked along this journey.
There were two options—lumpectomy, then radiotherapy, and being on medication for five years or mastectomy and medication for five years. I chose to have my breast removed. When you have a disease like cancer, it really brings to the fore the high cost of healthcare in our country.
Two months later, I was declared cancer free. It seemed like the shortest cancer journey ever. However, it took away my ability to tell my story. I was afraid of negative comments from those around me and I was already questioning my beauty as a woman. I hadn’t resumed school, our funds were exhausted and I couldn’t work. Frustrated at how my life had changed, I slipped into depression.
It took many sessions of therapy, antidepressants, and support from my loved ones for me to get over the depression. I embarked on a self-love journey.
In 2018, I resumed my classes but unfortunately towards the end of 2019, I got a recurrence and this time it had spread to one of my lungs. I was at stage four of cancer. All I knew about this stage going by what I had seen in many movies was that patients would die in less than one year. The doctor confirmed my fears. I had one year to live because triple-positive cancer is aggressive.
What do you do when you have just 365 days to live? Wallow in sorrow? Sit and wait for your day? I started a bucket list. Let’s call it a dream list. I wanted to dance in the rain, watch the sunset, and do other grand things like climbing mountains and travelling.
When I started the list, I joined an organisation called, KILELE health association that uses hiking as a tool for advocacy. The organisation empowers people living with chronic conditions, especially cancer survivors, to be agents of change and advocates for prevention.
I climbed Mount Kenya in 2021 and Mount Kilimanjaro early this year. I also started a project with my sisters called Chasing hope. This project is specifically meant to encourage young people to do early screenings, manoeuvre through the various challenges, and show people that there is life beyond cancer. We also one another’s psychosocial support because we in one way or another have lost friends. Cancer affects many aspects of our lives. For instance, on matters of spirituality, I felt like God had forgotten me. Thinking of all the challenges I had gone through —losing my dad who was a bishop and being homeless with my family in 2010, I wondered why God was allowing these things to happen to me and my family. But, gradually there was a silver lining. I won't call it a gift but it has given me a different perspective on life—I live a full life now. I allow myself to be happy and feel emotions.
When it comes to cancer, there are things that people don’t talk about. First, we need to end the stigma around death and talk about it as this inevitable transition for all of us. This is not just for cancer patients.
The other thing is sex and dating life. For a young person like me, at what point do you tell your potential partner of your condition? Do you say on your first date? The fifth one? Most of us prefer informing our suitors before our first date. Also, we need to talk about having support groups, seeking counselling services, and having reliable and affordable healthcare solutions. People also need to know that cancer is not the end of us. Look at me, I am still a living miracle, three years later.
I did five cycles of chemotherapy from December 2019 to May 2020 and was put on a drug that cost Sh100, 000. After a while, I couldn’t manage to continue with the treatment due to the high cost but with alternative treatments like watching my diet, I am at a good place. Now, there’s no active disease in my body.
What has kept me going
What has kept me going is prayers and support from my loved ones. Although I am yet to resume school, I believe that one day soon I will be able to complete my studies and support other young people. I would tell anyone who has been diagnosed that it's okay to be afraid and have fears in life but I would also like them to know there's hope. The caregivers should also seek help because the disease affects them in some way and be patient. If you can, tell your story. I tell mine to heal.”