Most pages of the CANSA AYA Free2Bme site feature inspiring quotes from teens or young adults who have walked a similar path to you.
This space is dedicated to giving other AYA (adolescents and young adults) HOPE as they read your stories of hope or quotes of hope – please submit them in the comment box below.
Modiphonso Maema
Modiphonso Maema (cancer Survivor 17 yrs – excerpt from her poem ‘I Refuse’), “I refuse to give away my will for life…I refuse to let life pass me by…I refuse to let my dream slip…my existence matters…I refuse to lose hope, to give up!”
Mariska Schultz
Mariska Schultz
“Having CANSA AYA Free2Bme that supports teenagers and young adults would have empowered me to handle the stresses, family and emotional aspects of cancer a lot better…”
I am Mariska Schultz, I’m 27 years old and I was diagnosed with Hodgkin’s Lymphoma when I was 15 years old. As any teenager would, I was uncertain about what this disease is. I could see by the tears and fear in my parents’ eyes that it wasn’t anything good. At age 15, one has rarely heard about the big C word, never mind chemo and radiation therapy.
I began my journey as a very uncertain girl surrounded by doctors, nurses, concerned family members, and friends. I was often referred to as “the girl with cancer”, because how often does a high school girl get cancer?
Stares and concerned comments followed me everywhere, especially when my hair started falling out and the effects of the chemo and radiation therapy were visible to everyone.
For me, losing my hair was one of the hardest things I have ever had to endure, and as a teenager, some kids can be mean. I remember a school kid hugged me and said, “Oh no, now I’ll get cancer.” I was horrified, but the truth is, the teenagers around us don’t know how to deal with such a serious disease.
This first year with cancer, had to be the worst for me, as everything was new and uncertain, I lost a lot of friends as I was not in school for days and later weeks at a time. My white blood count was often not high enough and I had to get injections, which would lead to sore legs. It was a lonely year, but also a blessed year as many people around us reached out to my parents to help them financially and emotionally.
My journey continued for 4 years, I did the first round of chemo and radiation therapy and was in remission for a year, and then unfortunately a scan picked up cancer again. I started chemo and radiation again, but this time in a more advanced setting, meaning a stronger and different dose of cancer. This time, I didn’t lose my hair and I was overjoyed at the fact. I met some amazing people, young ones that were around the same age as me. That helped me a lot. Unfortunately, I also lost two of my friends that were with me during this time.
My journey continued as after this intense period of chemo, where I was booked into the hospital for four days while I received the chemo, and radiation therapy, I was not in remission yet. And then it was time for the next step, a bone marrow transplant. I was concerned with a whole list of new things, having children one day, being one of them. By this time, I was in my final year of high school and turning 18 that year. I’ve made wonderful friends, who supported me and encouraged me, at this age teenagers are a bit more mature.
I received the bone marrow transplant after a third round of chemo in Cape Town, in the same hospital where I received my second round. This time I lost all my hair. It was slow and steady at first, but then one morning I got up, picked up my hairbrush and when I lifted it to my hair, a whole section of my hair came out with the brush and I was broken. We called one of our friends and she came to shave off my hair.
Doing this was less traumatic than losing bit by bit every day. After the chemo sessions, I finally received a bone marrow transplant. I was in isolation and the people that wanted to see me had to wear special clothing, but I tried to keep up with school work and could still write my matric end exam at the end of the year. My mother, family, and friends were by my side through everything and I can honestly say that I was blessed with some of the best friends.
Then it was time for university and I was so glad to get away from everyone that knew me as “the girl with cancer”! From here everything started to look up, I still had to go for my yearly scan, and I still get scared every time I go, but life is a lot better.
Sometimes my mother asks me about something that happened during those 4 years, and I cannot remember it. It is amazing how our brains process trauma and helps us be resilient. But sometimes I smell something or hear a certain song, and I’m right back in that space where I previously heard it. For example, my mother doesn’t wear the perfume she used to when I got chemo, because my brain connects it to that moment in our lives. Something else that we realized a bit later is that I didn’t really cry during those 4 years, because every time I would cry, my mother would start crying and I would make myself stop because I was trying to be strong for her. But now, I cry easily when I speak about what happened.
We have to remember that cancer does not define us, it is merely something that happens to us. And we become strong, empathetic, emotionally intelligent adults that still struggle with everyday things, but we have overcome so much already, that it doesn’t really compare to everyday things. We also have to remember that our parents, friends, and family also have some trauma from this experience, because they fear for us and the outcome is mostly out of their hands. This experience is part of becoming who we are meant to be and we can choose how we want to live our lives after cancer. We can choose to forget about it completely or we can choose to embrace the lessons and help others. And we can change our minds, I know for me, I didn’t want to talk about it for a long time, but after a year or so, I changed my mind and I chose to embrace what happened to me.
I want to leave you with just one phrase, I feel like it is something to live by when going through tough times and hardship. It is: “One day at a time”, don’t fret too much about tomorrow, but get through today in good health.
Fortune Manama
The Gentle Giant (penned by Bobby Were CANSA TLC staff member)
Young Fortune Manama
As I was walking through the ward, chatting to the moms and kids, I noticed a new face. When I got to the boy I said, “Hello there, and welcome to the ward.”
“Thank you, yes I am new to the oncology ward, but I have been at the hospital for a long time now,” he replied.
“Where are you from and what is your name?” I asked.
“Fortune, I’m from Pinkie, near Seshego, do you know that place?” he replied. From then on Fortune became known as Mr Pinkie.
Mr Pinkie was a 12 year old boy with acute lymphoblastic leukaemia.
He had been ill for a few months and the doctors had done various tests on him, resulting in him spending much time in other wards before being transferred to the oncology ward, for cancer testing.
And so began a new phase in young Fortune’s life. For nine long months he was in the ward getting chemo, being pricked, and prodded almost daily for blood tests, IV lines and all sorts of horrible things that no child should ever have to go through.
It was a terribly lonely time for him, and he felt an absolute prisoner, he knew the town well but could go nowhere. His friends lived just a few kilometres away, but no one came to visit.
Chemo made him ill, very ill… throwing up, sometimes just because some one came into the ward wearing heavy perfume, other times because of the smell of food, or because a well wisher would bring in a nice creamy cake, and he really wanted a slice, but the cream was too rich.
Hospital food was not the greatest and with mouth sores from the chemo, eating was difficult to say the least. At times I was concerned as I never saw him eating and was afraid that he might need to get a nose tube inserted, and fed internally. I spoke with him about the need to eat. “Don’t worry,” he said smiling, “my mom brings me food every evening after her work, so I am still eating.”
By now Mr Pinkie was well and truly part of the big family in the ward, he got to see his mom in the evenings, and for the rest the other mothers and nursing sisters saw to his needs. The children in the ward gave each other courage to go on and to fight for the right to live. Fortune celebrated his first teen birthday in the ward – imagine turning 13 years old and lying ill on a hospital bed.
Fortune Gentle Giant
The nine months passed, and Fortune continued to progress, he could go home, but had to come back for monthly checks ups, followed by three-monthly and finally annual check-ups.
Today Fortune is a 21-year-old young man studying a Bachelor of Medicine and Surgery at Wits University.
Why do I call him a “Gentle Giant”?
Well to start with if he stands and holds his arm out, I can walk under it, he is a full head and shoulders taller than me!
Fortune often comes into the ward to chat with other children and their moms, and gives words of encouragement to them. Many times we have had small children in the ward without a mom, granny or aunt to look after them, and then you we would find Fortune sitting on a chair in the office with the small child fast asleep on his lap, in the safety of his big arms.
Whenever we have an event that needs manpower, Fortune will round up a group of friends and be there in full force to support.
Fortune I salute you!
A Recent Catch Up with Fortune
Fortune Manama
What university are you attending and what are you studying?
I’m studying Bachelor of Medicine and Surgery at Wits University.
Why do they call you the Gentle Giant?
The name, it doesn’t come from my body size, well I am actually tall (about 1.9m), but I was named the Gentle Giant because of my heart’s strength and love. I’ve always been a strong child, especially during treatment.
After completing chemotherapy I fell in love with the kids at the oncology ward. I spent a lot of time with them motivating them to stay strong during the big fight against cancer, and because I’m very tall and intimidating, hence the name “gentle giant”.
What choose a career in medicine?
I am passionate and motivated to pursue a career in medicine because of my time in the Polokwane TLC oncology ward, where I received treatment. That is where it all began…
What are your hobbies?
I love to play basketball and chess.
What can you say to other young people diagnosed with cancer?
Above everything I have learnt to be patient and strong, and that I can achieve what I desire with the right amount of HOPE.
If you decide to submit your story or quote in the comment box below and it is approved, then the public will be able to see it.
2009 – It was the onset of my matric year. Excitement, a false sense of seniority, and an underlying feeling of trepidation blended in a melting pot of possibility. I hadn’t yet decided what line of study to undertake the following year, but journalism was in the foreground. I candidly hoped that I would be able to use skills gained in that field to later establish myself as an author. Then, it all fell away.
Looking back, the first sign had shown itself a few years before my diagnosis, a decline in eyesight. I had no way of knowing that the cause was a germ-cell brain tumour pushing on my optic nerve. There had been no other signs. I simply met with an optometrist, acquired my spectacles, and went on with my life.
Back to 2009, and my first migraine. I awoke feeling as if something was tearing into my skull. The presence of any light felt like an assault, and I couldn’t keep my food down. A bucket had become a permanent fixture alongside my bed. I tried my best to remain as still as possible, as the slightest movement sent waves of pain through my head.
I climbed up the ladder of medical consultations until I reached the field of oncology. Everything else fell away at this point. It still amazes me how quickly it all progressed from this point onwards. We discovered that the tumour was too near the midbrain, which made it inoperable. The remaining courses of treatment available were chemotherapy and radiation. I only underwent a few chemo treatments before it had to be ended. My body was too weak to continue with it. The radiation treatment was sustained and eventually completed.
I was hospitalised for approximately nine months, during which a biopsy was performed. Later, I sustained compression fractures along my spine, had a ventriculoperitoneal shunt inserted to drain fluid off my brain, had two hip replacements due to diminished bone density, developed an abscess in my right leg, and contracted pneumonia twice. I don’t think I would have made it through this if it weren’t for my family, doctors, and physiotherapists.
My recovery continued once I arrived back home. It began with occupational therapy. Simple exercises at first but building on my progress every week. Regarding my physical well-being, I was fortunate enough to have a biokineticist who pushed me when required. He helped me get from lying supine to sitting in bed, to mobility via a wheelchair, to walking. I will always be grateful for what he did for me.
If I could offer you one piece of advice, don’t let your diagnosis define you. You are more than “the person with cancer”. The future may still allow you to let your distinct passions, skills, and traits show. Today I have one published short story to my name and am currently working on two more, as well as a novel. Persevere, you are stronger than you think you are. Your story could give others the inspiration to fight.