Recent events have encouraged me to write this post because of the challenges I’ve been facing due to cultural taboos. I did think more than twice on how I should write this, and whether I should or not. My intuition tells me I should and here I am writing this for those who have friends or family who is currently having cancer at a young age.
I believe I have mentioned in my interviews with publications and newspapers that I felt very ALONE while I was wearing the colostomy bag, and even during recovery. I’ve searched online countless times for a support group in Malaysia because I wanted to speak to someone MY age who was going through this. However, most of my searches was to no avail, and what I found were support groups from the States which I followed on Facebook and instagram. You wouldn’t believe how much strength I’ve gained from some of their postings because I could understand it.
Only people who have gone through rectal cancer would understand such a simple phrase
That was the main reason WHY I wanted to start a youth support group for cancer patients and survivors in Malaysia which I managed to do under the auspices of the National Cancer Society of Malaysia. I am pretty sure other young cancer patients and survivors would feel the same, and many of them actually did stating that they were happy to have found the Young survivors group(YSG). Starting it wasn’t difficult, it was continuing it, and growing it that was.
Our second meet which was yoga, thanks to Under Armour and Twin Tower fitness center
The YSG begin June last year, but mid-way through I realized the attendance started dwindling, and it was difficult to continue to grow it. One day, the turnout for a workout session dwindled to two survivors and myself. I felt embarrassed towards the gym who sponsored us, and kept apologizing. It was then that I sat down with Wei Qing and Staci and asked them why people didn’t turn up. They told me two main reasons which shocked me at first, but made sense after thinking about it.
- The first reason given was that parents of the young cancer survivors discouraged them from doing anything cancer related BECAUSE… thinking about cancer may attract it back into their lives
- Many young cancer survivors think that we are doing ‘another’ seminar or talk, but it wasn’t the case as I diligently think of what new activities that I would do, and would definitely interest others too
The very day we only had 3 survivors including myself 🙁 Felt so bad to our sponsors, Curves Malaysia!
The first reason puzzled me completely at first because even Staci and Wei Qing were told by their parents not to come, but they still insisted on coming. This brought me back to my aunt who kept telling me not to talk about cancer or do anything related to it, because I will get it back. Again, all these restrictions come from cultural taboos in our Asian society. The taboo of cancer and having it, but what parents, caregivers, and relatives don’t realize is that cancer doesn’t just go away. As survivors, we still need bi-yearly and some yearly check ups! It shouldn’t be something we fear would come back, but rather something we should view as part of our lives already.
This is the same for cancer survivors worldwide, whether young or old, just that with the young, living with the fact we had cancer is a longer journey than those who got it when they are old. That realization of cultural taboos really threw me off guard BUT I was then even more determined to make the young survivors group work. I stepped up on even more exciting activities, and also organized a tea session where survivors and their caregivers came. Every meet, I encourage the survivors to bring their caregivers to make them understand more of what we are doing.
So happy with the turnout as this was right after the realization of what was stopping them from coming !! This time around, they brought their caregivers along
After they join us for one or two session, the caregivers/parents know what we do, and are more incline to allow their kids to come. Since then, I wouldn’t say that the group has grown by leaps and bounds BUT we are definitely growing, and the attendance has improved alot since then 🙂
For caregivers, parents, and young cancer survivors out there, do remember that as a young cancer survivor, we too need someone we can talk to who have gone through something similar because it helps gives us hope, gained information and make friends along the way. We are aiming to grow the youth survivors group in KL and my aim is to open one in the northern region as many have contacted me to do so. Of course, I hope the central region one in Kuala Lumpur will see more young survivors attending, and we will definitely have loads of fun together.
Every month, I will share flyers like these on my social media. So, for all you young cancer survivors or patients, do keep a lookout for it!
I know this journey of advocacy and keeping the youth support group running will not be easy, but I can promise all of you, that I will make it work and try my best 🙂
Please share this post with someone who you think can benefit from it! Let’s celebrate life together <3