October 3, 2020

Reflections: When September Ends

And so we had a series of conversation for the last 3 days of September and a whole month of awareness through my social media posting on childhood cancer awareness.

What have I learnt?

Here are a few lessons I have learned along the way through the conversation with the caregivers of Asfa, Chloe & Damien.

1. Cancer does not discriminate (and neither should you)

Childhood cancer is not like cancer in adults. There is no known prevention. Research has shown that it does not discriminate between gender, race, socio-economics, where you live, etc.

When your child is sick, you can often wonder if there was anything you could have done to prevent it. Then there are those well-meaning people who try to comfort you with their opinions as to why it may have happened. I’ve had people say they think it’s immunisations, others say it’s the food.

All I can say is, if you are ever in the horrid position of having a friend or family member who has a child diagnosed with cancer, they don’t need you to solve why it happened. They need love and support. Full stop. They need a shoulder to cry on. Someone to vent to on a bad day. Someone who they feel safe to say when they are scared or don’t know how they are going to get through it. They don’t need people being medical experts and making them feel guilty about what they could have done to prevent their child getting cancer.

2. Children with cancer need blood transfusions throughout their treatment

If there is anything that I can say about the research I have done, I would like to say that or what I want to encourage people to do is, to give blood if you are able. It is something simple and if you can do that really, it does make a huge difference to a child having treatment from cancer.

3. Watching a child battling from cancer will change you indefinitely

That is what I had gathered from the conversations with Azleen, Becky & Michael. If you have ever set foot in an oncology clinic or ward at a children’s hospital, it really does change you. The children look different. They have bald heads, often have a bit of a grey skin tone, some are really skinny or are in wheelchairs, and some have feeding tubes taped to their faces.

However, they are still kids. They just happen to be facing the biggest battle of their lives! They are resilient heroes, little fighters and little warriors who, despite what they are going through, continue to smile. They still sometimes chuck tantrums or cry about having to have a needle or take disgusting medicine, but they are incredible.

I believe Azleen, Becky & Michael as parents, often would feel that they are meant to teach their children about life, and how to live. But in turn these special children taught them a lot watching their children battling cancer. I believe their perspective on life and what is important has been changed through watching their kids battling cancer.

4. Siblings of children with cancer actually suffer more 

In many ways, I feel that the siblings of children with cancer suffer more probably due to the fact that having to watch someone they love go through nasty treatment, get really sick, and be apart from them is so heart wrenching, confusing and scary. They also have to have either Mum or Dad away a lot, spending time at the hospital with the sick child. They see their brother or sister get loads of attention and presents, and can sometimes feel like they wish they were the sick ones. The siblings of sick children are the unsung heroes.

5. Friendships made in hospital binds forever

Being in hospital is isolating and lonely. Treatment can be as short as 9 months to 2-3 years. In the conversation with Azleen, Becky & Michael, they had to spend weeks at a time in hospital. I believed they survived because of the friendships they made in the parents’ room of the children’s ward in KKH and NUH or sharing a room with another family. Those friends become their second family because they often see them more than they meet their actual family!

When you spend your days sitting in a square box of a room, bumping into another mum or dad while making a cuppa and having a quick chat, is your sanity. It’s because you’re connecting with other people who truly understand what you are going through. They know how you feel. People who know how lonely it is lying in a hospital bed all night beside your sick child, comforting them while they are sick in the early hours. Someone who knows how scared you sometimes feel at the thought that you could lose your child. How anxious scan day is. How much responsibility you shoulder, giving your child medication and hooking them up to feeds when you are discharged from hospital.

Childhood cancer is a terrifying world, and they are ever so thankful that in the midst of very dark days, there were rays of light with the friends they made. Friends They will call friends for life. Friends They share a bond with that can’t be broken.

6. Life will never be the same when your child has cancer

There is no going back to the somewhat normal life they’ve lived before they heard the awful words, ‘your child has cancer’. They are forever changed.

Even when treatment is finished, they still live with the threat that it will come back. Many children suffer from long-term side effects from treatment, and you see life very differently. In some aspects, for the better.

Their perspective has changed so much that Situations that would have stressed or bothered them before pale into insignificance compared to what they’ve faced now.

They have became really mindful of living for the now. Trying not to worry about what will happen, but enjoy what is happening right in front of them. To seize moments in life and just go for it. They also find themselves appreciating things that would have just seemed so ordinary, they may not have even noticed. No, life is the never the same and nor should it be.

7. Some die from battling cancer

This is a very harsh awareness. Unfortunately, All of them know this all too well that if the treatment don’t work, their children may pass away and I believe they would have heard about that possibility as well. It is one of the most excruciating things to have happen to anyone.

When you hear “Cancer stole our baby. Not because she didn’t fight hard enough, or we didn’t do everything we could.” This is heart wrenching.

8. Fundraising, research and creating awareness

Alhamdullilah, I am lucky enough that my children doesn’t need to go thru such pain but what i could do now is just to spread some awareness through this podcast. To know that I am doing something for the greater good, and that will potentially help children and families in the future is powerful. I don’t have to just sit and twiddle my thumbs, I can be proactive in finding a solution, and being a voice for children who may not.

So If you’ve ever found yourself thinking or saying, ‘I wish there was something I could do to help’, there is. You can donate blood, you can host a fundraiser or attend one, create awareness and create meaningful conversation or donate money to a charity like Children Cancer Foundation, Ain Society, ARC Children Centre, Love Nils and many more that are supporting this meaningful cause.

Children like Asfa, Chloe & Damien and their friends who have battled or are still battling cancer deserve a cure. They are worth fighting for. 

I would like to end this podcast by leaving you with the following quotes pieced together of the conversations I had with Azleen, Becky & Michael:

Keep the Faith! God will only test you with what you can bear! It is ok to cry and tell that to your children too because I know that behind those tears, there is so much resilience and bravery in each caregiver or child that is battling cancer!

To end this podcast, here is something you could take away with: let’s change our outlook in life, seize every moment and cherish with what you have! And Insyaallah/ God Willings, we will live a fulfilling life! Till another episode of Funky Fridays with Bo, I am Magic Bo.

You know magic happens when the power of love overcomes the love of power!

 

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