KNOWING you have a condition that could be fatal brings a deep sense of sharing and caring among fellow travellers, even strangers. It bears restating that people begin calling on me, asking me to tell them about my journey, to share the survival kit I did not know I have been assembling. As all this happens, I’m on auto-pilot, not thinking about it. Every request is a push-button and a function kicks in. I’m not trying to understand it all, shoot for answers to questions I cannot formulate. I am yet to undergo the onset of hindsight.
Not everyone chooses this path, but, to me, talking about the condition feels like shedding the burden, though this is not the objective in my mind. Speaking to someone else about my anxiety, putting a name to the demons that haunt me, giving full expression to the deepest fear of all — it has made my journey easier. I can cope better.
In remission, I also begin reaching out to people who have been diagnosed with cancer. Sometimes, I hear about someone’s diagnosis indirectly, and feel I have to connect, like I have with the dancer among dancers, Foo Chang Tze. Sometimes, a person who has been diagnosed reaches out to me, thinking I can help. Sometimes I just want to be left alone, but I can’t say “no”. It’s part of my purpose. That much I know at the time.
I often speak to my dear cousin in Hamilton, New Zealand. Lynn is a mother of two whose husband, Anthony, left suddenly, felled by an aneurysm.
One morning, Lynn and Anthony are preparing for a weekend church retreat during which they will renew their marriage vows. They are all packed, Anthony’s wedding suit and all. He has just had his shave and they are getting ready to leave. Anthony collapses and, by evening, he is gone.
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| My cousin, Lynn, visits me post-op in Sydney. |
Lynn is in remission herself, and we often speak freely about how each of us copes, feeling for the people who care most for us, moving on, counting every day as a blessing, knowing it could be that much worse, seeing ourselves with cancer and, at the same time, seeing ourselves as lucky.
Lynn talks to Anthony, a lot. He’s a good listener. The day he leaves is the start of a new, “even more special relationship”, she says. And she renews her vows every day.
She tells me I have shown her how to fight. She reminds me that the first thing I did was tell everybody, asking them to pray for me. Lynn is also not the only one among my family who tells me I have put up a helluva fight. I don’t see it like that at all. But I do know I have shown attitude: I have opened the door, said “Hello” to the most unwelcome of visitors. I have also said: “Now I can see your face, I can fight you, you bastard.” And I have caught it by the collar and punched it in the face. No hesitation. Kicked it. All the way to Jupiter. I don’t think about the rebound.
I used to think, I don’t know where the attitude has come from. I don’t anymore. If it’s my spirit, then it’s the spirit of God working in me, through me. Anyone might point the finger at me and go, “Hubris”. I don’t care. If I’m to say anything at all, then I have to say it all. If I am to help you, and help you understand all this, I have to share everything.
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| Lynn's 50th in Hamilton: From left are son Miguel, sister Jane, Lynn and daughter Juanita. |
Anyone who fights cancer learns how to live in a different way, and it happens in the blink of an eye. One minute you’re this person, then comes a diagnosis, and everything changes. Each of us comes to realise things differently, and I believe we must share these insights, which we fall upon through a lot of pain, doubt, self-examination, fear that can morph into terror. No matter how long some of us might have, we come to a point in our lives at which everything is different.
My Hamilton cousin and I now call ourselves the godfather and godmother of cancer. Until now, it’s been a private joke and we have laughed no end on the phone each time one of us uses the term.
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In early August 2020, a classmate from Sentul days WhatsApps me, telling me someone in his family has been diagnosed with breast cancer. She’s doing well, he says, has read up all about the chemotherapy she has to go through before surgery. But, she needs someone to talk to. “She’s an introvert,” he writes.
For days, I don’t know where, or how, to begin. I am reluctant to call, have her cope with a stranger’s voice on something so intimate. One morning, I wake up to the thought that I should simply write to her and tell her what I did, how I changed, how I fought.
On 28 August 2019, I send her a note on WhatsApp, in point-form, and Louisa replies soon after, responding to each point I make. I've done a cut-and-paste of our messages to one another. Here is our “conversation”.
[My message] Hello Louisa. Your uncle Andrew spoke to you about me, I know. I am very happy and honoured that my good friend believes I may be able to help you, maybe ease your anxiety. I thought it would be a good start to write to you first, before we begin talking by phone. (Where do you live, by the way?) I am trying to share with you parts of my own journey, in my fight with cancer. These are my insights, my beliefs. Together, they are the tools, weapons, I have used to fight my disease. I was diagnosed with pancreatic cancer in late 2017. I have been in remission since major surgery in March 2018.
I honestly believe I am stronger and healthier now that I was even 10 years ago, well before the shock of my diagnosis. So, here goes.
[Louisa’s reply] Good morning. Thank you again for your thoughtful message, I truly appreciate it. Sorry for not replying yesterday; wanted to take my time to read your message. Thank you for sharing your journey and I hope your wife is doing well. I’m personally thankful it’s me going through this and not someone close to me. I think I’ll have a harder time dealing with that.
I live in KL with my mom & younger sister. My dad (uncle Andrew’s brother) passed away when I was 16. I’m 40 now. I’m diagnosed with Stage IIA breast cancer, grade 3 and triple negative, the most aggressive kind of breast cancer.
I’ve had 2 surgeries, the cancer hasn’t reached my lymph nodes (very relieved) and I was supposed to start my chemo on 9th September but had to postpone to 2 weeks later as I need minor surgery to remove my wisdom tooth —I was told that there might be complications if I extracted my tooth after chemo & radiation. I was really looking forward to chemo, even asked the doctor if we can do it sooner but I needed to allow the surgeries’ wounds to heal. Learning a lot through this journey, one of it is to accept things as they happen and to roll with it, instead of dwelling on why it happened in the first place, or what I could have done differently.
[Me] Cancer is just another name to a thing that is one of many things that can hurt us very very badly, and worse. I always tell myself I could get unceremoniously introduced to the front of a bus tomorrow, and that would be it. Cancer is just another thing that can’t be foreseen.
[Louisa] I’ve been saying the same too. I could outlive the person who is feeling sorry for me for having cancer, I could die from being hit by a bus and not cancer. Most of us will get old and fall sick along the way and death is certain for all of us. Cancer was my journey. It had to be something.
[Me] If you choose the path of chemotherapy, you will help the process immensely if YOU BELIEVE IT WILL BE GOOD FOR YOU. I embraced my chemo. I welcomed it. I was eager to begin chemotherapy. I believed it would help. As it turned out, I hardly had any side effects. There was occasional diarrhoea and occasional constipation. Other than that, I was good.
[Louisa] I’m sorry for the loss of your wife’s sisters. It was hard making peace with chemo as we had to kill all the good as well and I was also worried if it was the right decision as there’s always a chance for long term side effects. But now I’m at peace with it, I need it right now to ensure all cancer cells are gone and I’m really looking forward to it. I guess it’s all so new to me, I didn’t know anyone close that went through cancer and I knew nothing about it. So when the doctor recommended chemo and said it’s my decision, I was questioning why it was my decision to make. The side effects while going through chemo don’t worry me much. My worry is more on long-term side effects, but all I can do is live my best life. I’m more worried how the side effects would affect my mom & sister than how it will affect me. *I have IBS (irritable bowels) so I’m well trained for diarrhoea and constipation…haha
[Me] I did experience that metallic taste a patient is warned about in all the information brochures they give you. But I also had seen my wife’s sisters waste away because they did not, or could not, eat. They were deprived of valuable nutrition just when the body needed it most. So, try to look at the metallic taste as a small price. Ignore it if you can, and eat. Eat well, eat good food. Try to psych yourself, your body, to expect minimal side effects. Don’t expect you will feel sick all the time. That’s a sure way to feeling sick. Eat small portions if you must, and eat more often.
[Louisa] I read about this but I already gave myself a pep talk so I’ll remember it while going through it. It’s all temporary; and to see food as medicine that I need to feel better, not something that needs to be yummy at every meal. I will remember what you said — Try to psych yourself, your body, to expect minimal side effects. Don’t expect you will feel sick all the time. That’s a sure way to feeling sick.
[Me] Believe in yourself. You are powerful. You can be your own healer, and if you believe in God, then believe you are God’s instrument, and God is working with you. No matter what, is is YOU who will have to fight.
[Louisa] I will, thank you. I needed to hear that.
[Me] Talk to your body. Will it to heal itself. A good friend of mine, a clinical hypnotist, also your uncle’s friend, told me: Picture yourself moving along inside your body with a lamp. Seek out the part that is infected and shine the lamp on it like a healing light. In other words, believe that your body - a wondrous thing of itself - has the power to heal. I believe in God and Jesus, and I believe they have given me the power to heal myself, to fight for myself.
[Louisa] Uncle Terence? It’s a great way to visualise it. I feel blessed to be able to fight for myself and to really ask myself what I’m fighting for, instead of just cruising through life.
[Me] Don’t look at yourself as a patient, as someone who is sick. You have just had a nasty turn. And there is every chance you will get better with modern medicine.
[Louisa] I just think of cancer as something that has happened to me, but it’s not who I am. I’m not defined by it. My mom asked me after surgery if I really had surgery ‘cos I’m going about my day as usual.
[Me] Love is a powerful medicine. Love yourself and the people around you. Love everything enough to fight for this life you have been given. Set an example. Become an inspiration.
[Louisa] It’s what I hope going through this, to inspire others to take better care of themselves, to not be afraid to deal with the cards you’re dealt with.
[Me] Don’t feel sorry for yourself. Don’t be angry about this. It could always be worse. Many many people everywhere suffer, and suffer heavily. There’s always a man someone who wakes up every day not knowing if he will be able to feed his child.
[Louisa] My sister told me the other day not to dwell on “why me”. I told her the thought didn’t even occur to me, ‘cos “why not me?”. And yes, I’m still so grateful for so much I have in my life, things could be a lot worse.
[Me] Don’t read up too much about this. Too much information can scare the pants off you. Hospitals and oncologists have to give you all the information you have. That’s just part of their duty.
[Louisa] I loved to google things before this and now I learnt the hard way. I don’t think I’ll be best friends with google much after this ;)
[Me] Talk to people you know about this. It’s ok. This is nothing to be ashamed of. It helps not to hide away.
[Louisa] I’m a real introvert and I’m very used to dealing with things on my own. This journey is teaching me to open up to others and to know that I don’t have to do it on my own. But there’s no shame for me in going through this and hiding won’t help others.
[Me] Every day is a blessing. Get the most of it.
[Louisa] Every day is a blessing. Yes it is, one I’m very grateful for. I understand now why I should speak to others who have gone through this, just reading your message makes me feel like 100% I’ve got this!”
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