Battle Cry of a cancer Survivor “Today we Cry, Tomorrow we Fight!”
Zakithi Mgilija, Hodgkins’ Lymphoma cancer Survivor and cyclist for CANSA Active in the Virgin Active SA Ride Joburg 2022, shares about her cancer journey and how cycling helped her through:
When Zakithi assumed cycling in January 2021, she had no idea her new adventure would end up playing such a critical role in her winning the fight of her life, fighting for her life!
Living the blessed life; a wonderful supportive family, a collection of friends and acquaintances that have been gathered over her lifetime and enjoying remarkable success in the chosen career path, the Kusekhaya Cycling Club member was diagnosed with Hodgkin’s Lymphoma on the 28th of June 2021.
A year later, after a series of physical and emotional battles, she opens and shares her story with hopes it will inspire others who may find themselves in similar circumstances.
When were you diagnosed with cancer?
It is a day I will never forget, 28 June 2021; two weeks after one of the happiest weeks of my life, where we had just delivered a huge project at work and had completed my first century ride in the B2B (Border2Border) #RideIsAlive.
Were you aware of any history of cancer in your family line?
No, not at all. So, this was beyond shocking for the whole family.
Describe your initial reaction and what you went through emotionally?
I went cold to the core! My senses stopped registering anything around me, so much that I did not hear what my doctor said for at least 2-3 minutes after I heard the word cancer. I “came back” when I heard him say “you will need chemotherapy”, to which I asked him why I need chemo and if I had cancer!
His reaction was priceless, because he realised that I had not heard anything he had been trying to explain for the last 2-3 min.
I was not emotional about it at first, I was numb. But, when I got into my car (at the Mbabane Clinic parking lot), I sat there for about 30 minutes crying and laughing at myself. I could not believe nor understand why this was happening to me. At the same time, I was confident of my faith in God to see me through this new challenge. I was at peace, very weird, but true.
My doctor had promptly made a follow-up appointment for me with an oncologist, so everything just went from an internal coldness to logical. I am eternally grateful that he never gave me the time to think about the diagnosis but was swift to guide me to an Oncologist for specific diagnosis.
Taking the First Steps
When did the reality finally sink in that this was the battle with which you were now faced?
When I got my scan results on 14 July 2021! That the day my oncologist confirmed that I had Hodgkin’s Lymphoma Cancer Stage 3! It hit me like ton of bricks!
How did you share with family and how did they take it?
Oh boy! I told them months apart.
I told my sister first on the same day of my diagnosis. I drove to her workplace from Mbabane Clinic and told her in the car. She broke down immediately and I was the one telling her all is well, and I would be fine. To try calm her, I told her I was so fine I was going for bike ride immediately.
She called my brother and told him I had something to tell him that evening (without my knowledge). He froze, went silent and stared at me like a zombie.
We told my mom on 17 July at home and my dad about two weeks later because he was sick, and we did not want him getting sicker, because of my diagnosis. This was after my first chemo infusion on 16 July. My mom was very logical about the news, but never wanted to talk about it throughout my chemo because she then fell apart.
My dad was not happy that we kept the news from him. But he understood why we did it. The greatest feeling was to have answers to all his questions. I told him sitting in the garden whilst enjoying the winter sun. Funny thing is my siblings left me with him when I started the long diagnosis story. I was left with him and my mom.
I told my children 20 July. My daughter fell apart and cried. My son was dumbfounded. Understandably so, as they expressed the fear of the unknown and that they know cancer could result in death.
My siblings and I could not handle telling my parents immediately, because I didn’t have all the answers to what I had been diagnosed with. My dad is the kind of person that asks you so many questions you start questioning yourself on your own facts, so my siblings and I decided to get all the information we could on my diagnosis before telling them. Besides, they are elderly now and we wanted to protect them from the stress of the unknown and the big C word!
How crucial was their reaction to your coping with the diagnosis and treatment?
It was crucial, because although I was sure of my faith in God to make it through this, they were and are my support system and we had to be aligned in faith, hope and actions for me to have a second chance at life. Any misalignment, my recovery would have been harder, and I would not have shared the journey with them.
I will always remember my sister’s words on 28 June 2021 while with my brother, “Today we cry, tomorrow we fight!”
That was all I needed to hear to know my family will be fighting with me.
I knew from the beginning that I needed to surround myself with only positive and faith-filled people throughout my treatment for survival because chemotherapy was going to be rough.
The Cycling Journey
When did you start cycling?
In my adulthood, 24 January 2021. I did the Kellogg’s loop with a Kusekhaya Cycling team member and I nearly died after riding just 5kms! Otherwise as a child, I was privileged to be one of those BMX era kids.
Can you describe the intersection between your cycling journey and your fight against cancer pre, during and post treatment?
God made me start cycling to save me physically.
Chemo needs your body to be healthy enough to handle the powerful drugs put into your body. My starting cycling 5 months earlier helped in strengthening my heart and body for chemo. In addition, the mental strength that comes with cycling, especially long-distance rides, is just the fighting mentality I needed to push through the long hard chemo days.
I had to stop cycling during my 6 months of chemo because I had chemo infusions every 2 weeks and all I did for 5 days post chemo was sleep.
Cycling gave me a new family and support system. The few people who I told in Kusekhaya Cycling Team supported me through my chemotherapy and drove me to some of my chemo infusions in Mbombela. I know now that if the whole team knew, they possibly would have taken turns driving me to Mbombela for my fortnightly chemo infusions.
Post chemo, cycling is my happy place and helps me maintain a healthy exercise routine for fitness.
Coping with Chemotherapy during COVID-19
This coming at the height of the COVID-19 pandemic, how did the dynamics of the new world order impact your access to treatment?
Fortunately, COVID-19 did not impact access to my chemo. I just needed a medical documentation from my oncologist to get through the border. Financially, COVID-19 required me to part with a minimum of R1 500 every 2 weeks for COVID-19 tests to get to Mbombela for chemo infusions. My oncologist had a plan B if I had tested positive for Covid-19 during chemotherapy.
The effects of the riots in-country were the worse than the COVID-19, because my scans and treatment were delayed by the non-availability of communication networks between medical service providers.
When, where and how did you start treatment and what kind of treatment was this?
My chemo infusions started on 16 July 2021 and ended 23 December 2021; I had chemo every 2 weeks for 6 months. All my chemo took place in Mbombela, South Africa, at MediClinic.
I was diagnosed by Dr Phesheya Dlamini in Eswatini, who referred me to an oncologist, Dr Sarita Retief at MediClinic.
I had Hodgkin’s Lymphoma which is a type of blood cancer that affects the lymphatic system (in siSwati ngumdlavuza wemadlala).
It was a painless, but traumatic preparatory process. I had to have a pre-scan done to see how far the cancer had spread in my body; then due to extreme anaemia, I had to have a blood transfusion of four pints of blood and lastly, I had heart tests to see if my heart could handle chemo. All this one week prior to starting chemo.
I was prescribed ABVD Chemotherapy for Hodgkin’s Lymphoma cancer. It’s a series of powerful drugs administered via IV or a port every 14 days for six months.
Did you experience any side effects from the treatment?
Yes, I did experience some chemo side effects, hair loss, fatigue, dark nails, and loss of appetite. God was good to me because I did not have the common side effect of nausea and vomiting.
What adjustments did you have to make – in the professional and personal space – to accommodate treatment?
It is a cliché, but I have the best employer! Employer Choice! I was allowed to work from home 100%, to reduce the probability of me getting infections, as I was immunosuppressed.
I had to avoid crowded areas, try to eat healthy and drink a lot of liquids to help my body wash out the chemo and protect my kidneys and liver from toxic build-up. I had to discourage friends and family from visiting me, which was very lonely.
It was hard, because we have been socialized to shower people with love and physical visits when not well.
My family’s movements were restricted to vital travel and daily cooking was specific to accommodate me, but I eventually had my own menu so as not to stress everyone out.
Taking Stock of the Lessons
“One thing I have learned from this journey is that there are a handful of things that truly matter in anybody’s life. Identify those things and enjoy them because in the twinkle of an eye, your life can flip into the unimaginable. So, live like the breath you are taking now, is your last.”
What were your worst fears during that time?
- Liver and / or kidney damage due to chemo and having to deal with that over and above the cancer. Hence, I was drinking water like a fish.
- Dying without having done half my bucket list!
At what point did you realize you were winning the battle?
The day my oncologist told me 60% of the lumps that were visible on my body had disappeared. It was nothing short of a God given miracle!
Any key milestones?
- Starting chemo within 1 month of diagnosis.
- My September progress scan that confirmed that the cancer was receding. By then over 90% of the cancer was gone and I was only halfway through my chemo treatment.
- When the night sweats stopped! This is one of the most horrible things to experience daily, especially on cold days.
What advice would you give a cancer patient who has just been diagnosed?
- Do not panic – get started on cancer treatment as soon as possible because time is of the essence!
- Try to shut out all negativity in your life that may divert your focus from your wellbeing holistically. Why? You need all your faith, tenacity, strength, energy, and whatever healthy bits you have left in your body to work with chemo in the fight of your life! Keep a positive mindset because it is very easy to slip into depression, which will have a negative effect on the quality of your recovery journey.
- If you are spiritual like me, ask God for what you want out of this experience and believe that you will receive it. For me, it was total healing, and I searched the scriptures for healing versus to meditate on. And please do set up a speed dial support system for all areas in your life; spiritual, physical, emotional, financial, etc.
CANSA has published this article with permission from Kusekhaya Kusekhaya by Ekhaya Kusekhaya, Kingdom of Eswatini. Copyright © 2022 Kusekhaya.