Maeve, a teenager, looks back on her experiences as a child struggling with Burkitt’s Lymphoma and offers heartfelt advice and encouragement for children who may also be facing a cancer diagnosis.
A picture of Maeve
Introduction
Hi, I’m Maeve, a sixteen year old student turning seventeen years old currently studying at the School of the Arts, SOTA Singapore. I had Burkett’s lymphoma for about 6 months when I was three years old.
The diagnosis
At the time, we had gone to the hospital because I had been experiencing stomach aches for a while, and the doctors wanted to find the root cause of my stomach aches. They did an air enema procedure on me, and afterwards, they realised that I had cancer, from what I can remember. The sequence of events is a little foggy to me, because I was not fully conscious at the time.
When they found out that I had cancer, my mum tried to explain it to me in as simple terms as possible. She explained that I had cancer, which she portrayed as a bad stone in my intestine that they would remove. However, even though the stone would be removed during surgery, we still needed the help of good soldiers who would come to fight the bad soldiers in my body, which was how my mother explained chemotherapy and the other medications I had been taking to me.
As a three year old then, it was difficult for me to grasp the true extent of what was going on. Cancer was a completely new word for me, and did not come with any sort of negative connotations, since I did not know what it was. I remember thinking, what is that? Is cancer another word for stomach ache, or a cold? Hearing the word cancer did not come with a huge initial shock. It was only during the time I was undergoing the process of treating the cancer, did I realise that it was more of a big deal than I had initially thought.
The treatment process
I remember that during the treatment process, there was a lot of sugar coating what was really going on, so that they could make it easier for me to process. For instance, while undergoing treatment, I had to have my finger pricked every day for blood tests. One of my mum’s friends came in and made a reward system chart for me, so that I would have something to look forward to after the finger prick. After every finger prick, I could get a small toy from the chart, and for bigger procedures that were more intensive, the reward would be bigger.
As I look back on it, I recall not understanding what was going on. I had a lot of questions like, why are people poking me? Why are my parents doing this to me? I don’t really remember this but I was told that after I woke up from my surgery, I smacked my father a lot because I was extremely upset with him. In my head, the role of a parent was to protect their child, and to ensure that their child would not experience anything bad. Yet, there I was, getting poked and prodded and going through all these painful things, and I saw my parents just standing by and watching them do these things to me. I felt very betrayed at that point of time.
While my parents’ explanation of what was going on made it easier for me to accept what was going on, I still did not really understand why these things had happened to me until I was a little bit older. I recognised that not everyone went through the same experience as I did, because I recognised that I was being coddled through the process. For instance, my mum’s friends would come to the hospital and do song and dance for me every day, and I really enjoyed the process, but I did not realise why it was happening. I just thought that when children fell ill, this was the norm.
How having cancer at a young age affected the way I view life
After I had cancer, I realised that while Burkitt’s lymphoma is a rare form of cancer, cancer in general is a more common disease than I had previously realised. As I got to know more people, I realised that there’s a whole community around me. It never occurred to me that this was something that I could have died from, but when I realised that, I learnt to be more grateful and appreciative of what I have.
How friends and family can better support people with cancer
When my mum’s friends came to sing and dance for me, and cooked for me while I was hospitalised, it really inspired me because I realised how much time and effort they put into taking care of me in their own way. It also made me reflect on what good friends they were to my parents. I think such a strong support system definitely helps.
On the flip side, when my parents broke the news of me having cancer to others, they had to wrestle with the idea that someone as young as me had cancer, and there was no apparent reason for it. They would sometimes question if it was a form of karma for something that my parents had done, perhaps something they cooked or something they had done in their past life which had led to me having cancer. Sometimes such questions come from a place of genuine curiosity, but it can come off as a little insensitive and ignorant, so I feel that people should refrain from asking such questions if they can.
Lastly, being there to support the person through their cancer journey will definitely help. If they are getting diagnosed for the first time, they may be wrestling with the idea of having cancer themselves, so talking it through with them will definitely help. On the other hand, if they are experiencing a relapse, being there to support them and help them maintain the faith and perseverance to push through will definitely help. I feel that people’s words really do matter, and if a cancer patient knows that there are people who believe in them and support them, it will help to motivate them to push through.
My advice to those who have been diagnosed with cancer
This is not the end of your journey, nor is it something that is self inflicted. Try to think of it as a stage of life that you will go through. While I know that it is difficult to process or understand this, with friends and family who care about you, there will always be someone who will be there to fight for you and support you! Even if they don’t come up to you and tell you about it, I think there will always be someone there rooting for you.
Advice for those who have a child who has been diagnosed with cancer
I think that it’s very important to be there to help the child process what they are going through. Although they will be thinking about it on their own, a parent’s support is crucial to them to understand what is going on. As a parent, remember to answer their questions, no matter how ridiculous their questions may seem. Be there for them, and show them that you are dedicated to being with them through the process, because I think support is very important for the child. For instance, if they know that once the procedure is over, they will have their mum to hug, it will definitely help them push through the rigorous cycle of medical procedures they have to do daily. No matter how small an accomplishment it may be, affirmations that the child is doing well will definitely encourage them and make them feel seen and heard.
How to approach cancer patients after remission
If you are curious about what your cancer patient friend or family member has gone through, it is normal to feel shy about asking about their experience, since it is a very personal topic which may also seem taboo. However, I think most cancer patients are open to answering questions once you’ve shown that you are genuinely curious and concerned about the patient and what they have been through.
Scars after cancer
One thing I don’t see being discussed very often is what happens after a patient goes into remission. Most cancer patients undergo chemotherapy as part of their treatment plan, and often a port catheter is inserted on their chest area for chemotherapy treatment. I had mine inserted on my right chest, below my collarbone, and after the port catheter was removed, the scars from it remained. It never really bothered me until I was in my pre-teen years at about 12 or 13 years old, when I became more exposed to social media and saw a lot of young adults enjoying their lives and having fun for instance at the beach, where they would wear bikinis or more revealing clothing. I became self-conscious of my scar and asked my mother about scar removal options, because I felt that the scar made me less beautiful than those girls that I saw on social media. During our conversation, she told me that it was my body, and I was free to explore options to get rid of the scars when I became an adult. However, the scars were also a reminder of how I had endured and persevered through a difficult time. It was fine to zap off the scar, but doing so would erase a part of my story as well. That really stuck with me and it’s still a really impactful sentiment till today. I think most cancer survivors would have the same scar, and I would encourage them, especially those who may be in their teenage years, to think of their scars in the same way!
The Brave Company would like to thank Maeve for sharing her story with us.