Making sense of Cancer
In hindsight, I am so glad we dealt with cancer privately. The people who mattered already knew, a handful disappeared altogether like it was contagious, but friends whom I consider my extended family continued to treat me the same way.
That was really nice, I didn’t need to be reminded of cancer at every turn, because I was not my cancer. On good days, I sometimes forgot about cancer.
How we survived this entire ordeal over the past year, we don’t know and we can only look back and marvel at the pure goodness of human nature and solid friendships that supported us through.
None of this is “brave” or “inspirational”. We don’t have a choice. And in many ways, it diminishes all the other things human beings are doing – Life’s trial and tribulations. We all have our own problems and demons – we all suffer in our own way, whether psychological, emotional or physical. Brave and inspirational creates a division between cancer patients and everyone else.
Now, we can laugh about navigating an international move from my chemo chair amongst all the inconveniences of relocating, new job, settling in etc and jokes about being so stressed I could “pull my hair out.”
You know that quote that you should always be kind because you don’t know what other people are going through? As we dealt with cancer privately and went about our daily lives, I was equally amazed by the number of kind souls on earth as there were self-centred assholes. No hard feelings. I wish these narcissists well in their self centred world and glad to be rid of “social carcinogens” in life . Life is too short and they don’t deserve a second of mind space.
Some people are innately equipped to deal when the going gets rough, partly because they have weathered horrible things themselves or are natural empathetic beautiful souls. I am lucky to have many of those kind of friends in my life.
Most of us have the fortune of cruising through life with the mentality that “bad things only happen in movies and other people” so understandably we don’t know how to be that supportive family/friend in times of crisis. Tuulavintage has really constructive advice:
“To anyone out there that knows someone going through a tough time but doesn’t know what to do or say so thinks it is best to stay away until tough times pass, please don’t. If you ask “what can I do” and they don’t give clear direction, do what you can anyway.
Leave groceries on their doorstep. Freeze meals. Bring coffee. Turn up for a hug then leave. Watch their kids while they take a shower or a nap. Please don’t stop texting even if they don’t reply, they probably don’t have words to explain it.
Ask if they need help paying rent, bills or with Centrelink forms as you know they haven’t been able to work in a year. Ask if they need help getting to hospital or ED each day.
Ask them if they want to talk, or sit together in silence. Don’t tell them everything will be okay if they “just think positive sunshine and rainbows”. Please don’t ask “what’s wrong” just to know, and do nothing.
Please don’t assume anyone has enough support around them as this is not always the case, and can be a difficult thing to admit.”
I was devastated about wasting a full good year of living with seemingly endless hospital visits, however looking back, I have packed alot in a year, given how physically ill or fatigued I felt on some days. Bummed about not having a full time job to go to work to and retain some semblance of normalcy, I kept pitching and securing interesting freelance work and ended up with several new retainer clients in Singapore, including teaching at General Assembly .
I depleted all my savings and had to begin all over again from the land of Brokeass Mountain. I had to learn another lesson of putting aside my pride and took up my husband’s generosity in dire times although difficult to bear the idea of leeching off someone else. (Thank you friends for the constant reminders… that undergoing treatment for cancer isn’t a small feat, and I ain’t no leech in this lifetime.)
I aced the advance Business Chinese course at the Chinese Chamber of Commerce (they pay you for having good grades!) – I thank God for these classes. They were the only thing that kept me sane, and out of cancer world most part of the year in treatment. I’d show up at class after chemo, nausea as hell, feeling like death with deep bone pain, learning how to read Chinese law contracts, and role playing real estate agent and sales person at the Beijing auto show.
I wrote a good number of freelance articles, did several copywriting projects and consulted on a handful of marketing strategy projects. I walked alot, did all the things that brought joy: ate, explored, baked, took lots of photos, went to plays (I miss this so much!), and saw so many old friends that I never had time to catch up with as trips back home as the last 12 years had always been hurried.
More than just making a list to “justify how I didn’t waste time”, I am genuinely proud of myself at how I’ved lived more meaningfully in the moment this past year than I have ever done since the advent of internet and work was a primary source of escape for filling the immense void of a miserable and incredibly lonely life in Macao.
I also made new friends. And I think the biggest lesson of all? I learnt to put myself first. Going about the list of things started as part of the anxiety of not doing enough (my life long baggage). Everyone was telling me to rest, but that reminded me acutely of my illness.
Truth be told, if there wasn’t an exciting meaningful life to live, what am I enduring treatment for? Doing stuff makes me feel alive. Life doesn’t stop when you get diagnosed with cancer. Every second counts.
“Are you cured yet?” Some well meaning friends have asked. You never get ‘cured’ from cancer. You go in remission. I suppose the sword of Damocles will always be dangling over my head and the years of scan-xiety to come at every check up.
I am fully aware I can’t live in the future, and may not even outlive my parents. It’s incredibly hard for a Type A person who likes control. We don’t need a dress rehearsal for suffering. What better lesson to live in the NOW. Mindfulness at its best.
**Post written in May 2017**
I am finally crawling out of the terror of a cancer diagnosis, almost done with treatment and getting back up on my feet, navigating the psychological landmine of PTSD as I watch myself continue to evolve.
I have no intentions of turning Chicken Scrawlings into a cancer blog, there are plenty of those out there and everyone’s narrative is different. I marvel at the courage of all those putting their reality out there in real time. There have been many good days and then there were am-I-dead-yet horrible days on chemo when I was lying on the floor in a pool of tears.
Everyone suffers in their own way through treatment, I didn’t have an easy time on chemo as I had an allergic reaction and had double the dose of Antihistamines which doubled my time in the chemo chair. I was hallucinating on alot of the drugs that were suppose to be help me sleep – anti-depression, anti-anxiety pills. Chemo induced menopause was tough; insomnia, drenched in cold sweat every night, fainting spells in addition to chemo side effects.
I had constant nightmares about drowning and woke up choking amongst other nightmares à la dementors from Harry Potter meets Pontianak and late relatives coming through the bedroom wall.
One of my biggest struggles post chemo is accepting the “new normal”. Cancer fatigue is in a league of its own and delibitating. I still don’t know my limits and my thirst for life is still the same. Fatigue sneaks up unannounced, and I haven’t found a way to manage this yet and am constantly deflated having to cancel plans and lie in instead.
The fatigue comes in waves or sometimes a strong undercurrent. The cancer shadow that keeps reminding me of my illness. I hope it doesn’t last forever or for years post treatment like it does for some patients.
I’ve gone through the cycles of being paralysed by the fear and terror of dying of cancer to focusing on mindfully living in the moment. I’ve been in years of therapy, practice meditation and have read a ton of self-help books the last decade, but I think being diagnosed with cancer really fast tracked my journey of self-growth and awareness. The skeletons in my lifetime closet all fell out. Reiki really helped me to get through some major deep seated hurdles and recharge energetically.
Dying of cancer is a prolonged process of a painful death – I have seen it at the hospital and with new friends on this journey…And… the hardest part is watching children go through this, with ports and IV drips in their tiny bodies. Yet, their innocence and playful vitality without an ounce of self reproach (I suppose it’s an adult thing) handling the trauma is a giant lesson in itself. I am not afraid of death, but I am terrified of death by cancer.
I don’t even know who reads the blog these days. There are so many narratives in cancer blog land and I never quite found my tribe. Each experience is so different and unique. Everyone has their own way of coping, and there is no right or wrong way. It all culminates in the same end goal – to LIVE.
Judgement is hurtful and unnecessary, and I wish we were all more open and more kind. I have read the cross fires on cancer forums, social media posts that are ridden with anger and bitterness. I’ve been there, it’s so easy to be bitter, angry and throw pity parties (although often times it’s the uncontrollable chemical reactions in your brain brought on by chemo), rather than hike the mountain that leads to enormous self growth.
Yet, we’re only human, and it definitely feels good to let it all out (make sure you’re in the right company as most people get awkward and ask you to think about something else and stuff those feelings). We spend our life time conditioned by society to stuff our feelings.
However, I found hanging onto the angry narrative wasn’t helpful at all, and took so much energy. I was furious at how it turned my life upside down in the prime of my life when everything was going great, but never had the “Why me?” rage. Acceptance came quite early in the journey for me.
I thought long and hard about publishing this vulnerable post as we’ve always been pretty private about our personal lives. I wasn’t comfortable with the consistent cancer metaphors. Maybe there are many others who struggle outside this Venn Diagram too?
I couldn’t fit into the usual broad categories of pink camp survivor positivity overload and the other side of the spectrum with belligerent warrior and fighting metaphors. (But… what war is it? Anger at who/what? when it’s your own body and own cells and DNA that just went haywire?)
I was lost for words for a long time – simply because I actually didn’t know “How am I?” “How do I feel?”. There’s alot of feelings floating on the internet as a cathartic exercise for us cancer patients, often times it’s intense and emotional, and sometimes alienating too.
While I am generally more Eeeyore than Winnie the Pooh in my plight, I respect how some people handle it all with so much grace and positivity. Like powerhouse Nalie, and gorgeous Debo who has become a lifelong friend who cheerled me all the way through treatment. Along the way, I was also connected to the late Minghao and Yan through mutual friends.
Survivor guilt is real, it’s a new can of worms that opened and I am learning to navigate this. Waking up groggy post surgery, I received news my friend had passed and I sadly missed her wake while still in hospital. The same day I picked up my pathology report that was clear, my friend Ming died.
Yan introduced me to a safe house of other young adult cancer patients she picked up along the way. We make inappropriate jokes about cancer (because we can and fortunately no egg shell hearts in the crew). We had many conversations about cancer and CANCER… and we don’t really know if we’d ever fall into the latter category as a cancer virgin. It’s a cruel game of cards.
I found inspiration in the beautiful Suleika Jouad’s Life Interrupted Series and through that found blogs of her tribe: the late Melissa Carroll (paintings below) and Kaylin Andres, both artists in their own right, documenting their journey with Ewing’s bone cancer to impending death, filled with a passion to live life so fiercely and fully with a side of beautiful raw youthful idealism.
Cancer has brought many lessons; it also exfoliated fairweather friends away. I have been floored by the love, kindness and generosity of friends and strangers. For this, I am eternally grateful. Friends flew in from Beijing, Taipei, Hong Kong, SF, Bangkok to take me to chemo, sit and chat about everything but cancer and cook me meals.
Friends with young children and their own set of life’s troubles sat with me at my onocology appointments and chemo when my husband was busy holding down a job a four hour flight away. Really, my friends are AMAZING. We are so time poor these days, and the sacrifices that my friends have made to be here with me in the now. I am beyond grateful. How does one ever repay that?
Long distance relationships have their challenges – we navigated it early in our relationship, but to undergo chemo and doing it long distance? I have to be perfectly honest, I don’t know how we got through the first 6 months, living alone and being my own primary care giver.
Like all things in life, sadly, I also got a glimpse of how self-centred and narcissistic some people are.
I wonder how friendships pick up after – if they do at all – when the dynamics have changed. I have changed, more importantly my sense of time has a different kind of urgency to focus only on meaningful solid relationships. How do people pick up where they left off when friends disappeared unintentionally during a life changing ordeal like cancer and conveniently sail back in like it never happened? I guess I’ll find out.
I learnt over the course of purgatory that having cancer doesn’t trump other people’s pains, and the world needs more loving kindness. I know many cancer patients feel differently on their journey, this is my personal experience, sorry if it offends you. Quite quickly in the journey, I learnt to let go of expectations of others from their reactions and behaviours – this is practising loving kindness towards myself.
It brought more awareness to my daily life on how much suffering goes on in the world, the terror of war and displacement aside; there are people living with chronic diseases, abuse, losing a loved one suddenly, miscarriages, infertility, clinical depression, emotional trauma etc. Sheryl Sandberg has good advice on dealing with grief and support.
Pain is pain, and terror is terror. I don’t understand why people bother with a martyr competition. It’s true they say how people react says all about them and nothing about you. I’m sure we’ve all come across lists of shit people say when sharing a cancer diagnosis. I stopped taking anything personally.
I don’t think people actively come from a place of malice and don’t mean to say the things they say that are instant triggers for my own insecurities and bottomless fear.
I actively shy away from wearing the “cancer patient badge”, even then I couldn’t escape falling prey to the evangelists and the well meaning survivors on a mission of advocacy who regularly told me how I will/should feel or finding redemption in religion. It’s such a personal experience and we all have our own baggage – I find it suffocating when the veterans tell me where to pigeonhole myself.
One of the most uncomfortable things we encountered was sympathy. We don’t need the pity. How is that any form of helpful support? The awkward, fearful looks and the contrived “I’m so so sorry” poor you spiel and the fearful look in their eyes like cancer is contagious. I hope more people take a leaf out of Sheryl Sandberg’s page on how to be supportive when the going gets rough in life – whether it’s a death in the family, cancer or a serious chronic illness one is dealing with.
I did take the important advice about surrounding myself only with positive, funny and happy people instead of energy vampires looking to download and make it all about them.
So, whoever is reading this – enjoy the little things and live in the moment. Taste your food and mindfully really take it all in – I am still suffering from post-chemo metallic mouth where most things taste like eating rusty nails. Take nice long walks, use those legs and enjoy deep breaths, look at the beauty of nature and everything around you.
And whatever challenges you’re dealing with, the best piece of advice I was given “Thoughts and feelings are like visitors, they come and go.” And I sit with that during meditation, acknowledging and validating my feelings and watch them pass, instead of stuffing them.
Two things I can’t stress enough:
- If you’re a freelancer and not covered by company insurance or if your spouse’s company insurance doesn’t cover the family, please look into some affordable policies. In Singapore, the NTUC income plan is very comprehensive.
- Ladies, check your boobs, go for your regular pap smears, get checked if your chronic cough doesn’t go away, you’re breathless and dizzy, or if you have weird lumps in your lymph nodes that shouldn’t be there. Demand for blood tests and scans if things don’t feel right and you’ve sought several opinions – I think you’d know it. The body is truly an amazing vessel. Pay attention and listen to it.
Lastly, I think cancer is really bad luck and being dealt a bad hand of cards. No victim blaming please about lifestyles, stress and diets. Individual bodies work differently. Monks who live in the mountains, meditate thousands of hours are vegan, and live stress free without mobile phones also get diagnosed with cancer. Some patients are also genetically predisposed.
On the topic of claiming the cancer experience and finding your sense of self. Here’s one of my favourite Ted Med talks. It’s so true that only a small part of the cancer experience is about medicine – the rest of it is about feelings.
I am still learning to live fearlessly and in the moment. It’s hard, I am only human.
“Claim the experience. Don’t let it claim you.”
On the darker days, I spent a fair amount of time looking at the dignity of death. Some great reads. The Economist piece on having a better death, How doctors choose to die. Dr Kate Granger on her end of life choices and Dr Janet Sollod on approaching end life. The late neurosurgeon Paul Kalanithi’s best seller When Breath Becomes Air , and Anita Moorjani’s Dying to be me, returning from a near death experience with stage v lymphoma.