Help! I need Somebody

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Definitely one of my favourite Beatles song and a line I rarely use. I come from a long lineage of strong independent women who rarely ask for help. My Mom and Grandmas were examples of how when the going gets tough, the tough just keeps going. In the last year, as it got tougher and tougher, I was very fortunate. I didn’t even have to ask. Help came in so many ways, some were needed and others not quite but the thought helped keep my spirits up.

That said, when my cousin reached out to me last week as her friend was recently diagnosed with breast cancer and was going to start chemotherapy, she wanted to know how she could help. Which brings me to this post as I reflected on how it’s hard to ask for help especially when you have no idea what help you need. So as an experienced chemo warrior, I thought I’d come up with a list for anyone wondering how to help:-

  • Cooking, I really appreciated that I didn’t need to think about what to eat. I mean I didn’t feel like eating most of the time and it was so helpful to have a little something and someone prodding me every couple of hours to eat. I had a friend who who cut fruits and delivered them to me! Just check in with them on their diet restrictions, if any.
  • Cleaning, I had no energy at all so any help with chores around the house would be helpful. I’m usually quite an OCD but when I was feeling so weak, I was just so grateful that chores were getting done, it really didn’t matter it wasn’t done in my way.
  • Driving to and from doctor’s appointments and treatments. As I come to the end of my treatment and am driving myself again, it was really lovely to just get in the car and not have to deal with traffic.
  • I had a few friends who bought me gift certificates from supermarkets, specialty grocery stores and such. That was super helpful! With so many expenses, it was really one less thing to worry about. One of my cousins even bought me groceries a couple of times.
  • Checking in without expecting a response. I wasn’t always in the right frame of mind to reply but it gave me the warm and fuzzies to wake up to messages from friends and family who were just thinking of me and didn’t need a response.
  • Other gifts that I received which I used were comfy PJs which I wore nearly exclusively, beanies to keep my bald head warm and fuzzy socks as the chemo clinic gets quite cold.

As the memory of feeling so weak starts to fade and become more of a shadow, I want to remember as well supported as I was, I need to learn to ask for help. I really can’t do it on my own and asking for help isn’t about weakness, it’s about vulnerability. And only with vulnerability can you make authentic connections. I’m still working through this life lesson. Going through chemo treatment seems like the catalyst for this revelation. As I know I’ve grown closer to people whom I’ve shared this vulnerability with.

14 March 2022
28 March 2022

Superpower of Smell

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Chemo is tough on your digestive system and there are so many reactions. Some are in pain and nauseous all the time. Others have no reaction at all. I was somewhere in between. My tummy was not happy and was in a constant state of indigestion most of 2022. I stopped getting hungry and lost nearly all of my tastebuds, all except sour and thankfully, I could still smell. In fact, I think my sense of smell become more acute too! Like a new superpower, I knew every time my Dad bought his favourite Hokkien Mee from Circuit Road Market home.

I learnt that without tastebuds it is very easy to eat healthier. Didn’t matter what you put in front of me, I could put it in my mouth, chew and swallow; up to the point where the state of indigestion would protest. This meant I didn’t eat much and was on a schedule like a baby, every couple of hours, my wonderful family would put a little bowl of something for me to eat.

I always knew my Mom and sister were excellent chefs but they really outdid themselves to entice me to eat more. My sister played with textures and aromas. My Mom modified old favourites with more tart and no sugar. Even my SIL, Jenna got into it and made this amazing dish that smelled wonderful and had so much texture, it was so fun to eat. This reminds me, I have to get her to recreate this when my tastebuds are back.

And nope, my tastebuds aren’t back yet. It’s been about a year of quite a surreal experience. When I tell people I’ve lost my tastebuds, they screw their face up and look at me sympathetically. I totally get it but after the year, I can honestly say it isn’t as bad as I always thought it would be to have no taste. I learnt smells are about 80% of taste and I’ve developed a way of eating where you chew and take deep breaths at the same time. The next time we’re having a meal and I look weird, it means my tastebuds aren’t back and I’m tasting my food! I also realised textures are very important to eating too and I love chewy textures. Bread, rice, al dente pasta and noodles. Like with my Mom’s Nasi Ulam, it was my go to and one of my favourite to have. The blend of spices, rice and veggies gave me a complete experience when it comes to eating on chemo.

Chemo tummy made me slow down when I was eating. Something I never did before cancer, I was the shovel food as quickly as you can type of eater. Slow down, please is what I remind myself when I’m eating now. I take a breath as I chew and appreciate all the parts of the meal. Now I have to practice that with everything else in life. Slow down and do one thing at a time. I’m not quite sure if I can check this lesson off quite yet. I have a hunch I need to practice slowing down ALOT more.

From Michonne to Okoye

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Michonne was my favourite character from the moment I saw her with her pet zombies in The Walking Dead which I re-binged during my treatment. When she yielded her samurai sword, I was reminded how I was completely sold on her. And recently I finally caught up with Wakanda Forever and Okoye intrigued me in a similar way. There is something about independent women in stories that I’ve always been drawn to. Post chemo treatment though, it was all about hair and the lack of.

This image has an empty alt attribute; its file name is walking_dead_season_3_michonne_301_a_h.jpg.webp

Watching Okoye made me miss my bald head. I surprised even myself how comfortable I got with my bald head and learnt that push come to shove, I will pick function over design. After the second chemo session, my hair started falling out; in a male balding pattern kinda of way … maybe that’s how all heads bald. 5 days after the second session which works out to be about a year ago give or take a week, my husband pulled out his shaver, hoped it would work on my head and I sat in the middle of the kitchen as he started shaving my head.

It wasn’t perfect but I remember feeling very free. Since the shaver couldn’t get a close clean shave, my Dad took me to our friendly neighbourhood barber to get it cleaned up.

And my Dad got his head shaved too! Here we are as twins! All I need is a moustache and a goatee 😉 Being bald was very easy. When I came back from the barber and jumped in the shower, I wiped my head dry and that was it. I laid down for a nap, instinctively thought my head would be too damp and touched my pillow which was of course, bone dry. When you have no energy from chemo, having no hair was one less thing to worry about and that’s what I loved about being bald. It was so so easy. Although, I had to find ways to cover my head to keep it warm. I got cold quick with a bald head.

There are a number of things I learnt from being bald. The first is that life can surprise you in ways you least expect it to. If someone told me last year that I would have enjoyed being bald, I would think they would be off their rockers but I did. This reminded me of the Buddhist parable where he turned arrows aimed at him into flowers and how things may seemingly be bad but doesn’t have to be. That’s my life lesson from being bald. While my hair is growing back, my Dad is keeping his bald. It’s a good look on him too, if I don’t say so myself. I’m keeping an even more open mind about life experiences which brings me back to Michonne. Should I add “getting dreadlocks” to my bucket list?

Deep Breaths and Savour

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I caught a cold earlier this week which frustrated me to no end. Considering the last year I had, you would think I would be use to feeling unwell by now. This means I still need more practice on being patient. It is really a tough lesson for me.

Chemo wipes you out pretty much entirely. Last year, I remember being frustrated at not being able to do as much or what I wanted. So so frustrated that I had to be content with being horizontal.

I don’t know who took that picture of me after the first cycle of chemo but that was how I was most of the time – horizontal. With whatever energy I could muster, I distinctly remember feeling frustrated. A sweet friend of mine who is much younger than me would often say to me, “This too shall pass.” My other dear friend who is the same age as me would prod me whenever I needed it, “Deep breaths.” These were the two life lessons from last year I had put together to practice patience.

Whenever I feel the frustration or irritation creep in, I’d take deep breaths and hear myself say, ” This too shall pass.” And viola! Pass it most definitely has. A year worth of cancer treatment is coming to an end *dance the happy dance* Two more infusions to go!

Looking back, the tough days are a shadow of the memories. Taking deep breaths today, I can savour both the good and the bad moments. It was with my excessively running nose and aching bones that that reminded me once again. I took the time to lie down, take deep breaths and savour the comfort my bed afforded me.

Starting Cycle #15

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Turning 47 was a muted occasion. I had 2 chemo infusions by then and the side effects were slowly starting to creep in. I also started my no soya and no sugar diet so there were no birthday treats to be had and I had no energy to protest. While I spent most of it taking it easy and nursing an unhappy tummy, it didn’t stop my family and friends from sending their love.

Don’t ever remember having so much flowers around me. And I have to say, flowers do make everything look prettier. I did say, I’m truly blessed with the village I’m a part of. Fast forward through chemo, WFH, surgery, radiation, more staying in because of a compromised immune system, more WFH, more chemo and immunotherapy; turning 48 is definitely cause for celebrations and so much to unpack.

If the prognosis wasn’t as positive and I had lost the fight to cancer, I’m happy to say I had no regrets in the first 47 years of my life. Sure, I made mistakes, got lazy, wasted time but by and large, I loved hard, worked hard and was afforded opportunities my 12 year old self wouldn’t have dared to think about.

Now with this second chance of sorts, it’s yet another opportunity to truly live the authentic life I often ponder about. What does that mean and how would it look like? In 2021, I thought my life and I guess the world in general was going to be split between pre-covid and post-covid. Now, for me it’s going to be BC, before cancer and AD, after the death of 47 year old me.

48 year old me has the same unbridled passion for leaving the world better than when I entered it. Just now more considered … it isn’t all cancer, it’s got a lot to do with getting older and hopefully wiser from the experiences life, including cancer have given me. In my attempt to live an authentic life, here’s my checklist:-

  • listen to myself
  • be honest to myself
  • show up for myself

Before I can authentically listen to others, be honest to others and show up for others. BC was learning, I’m hoping AD is about applying. From the famous words of my favourite drag queen (I do love drag queens)

If you don’t love yourself, how in the hell you gonna love somebody else?

Amen!

It’s Been a Year

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It’s time for infusion #15 out of 17 and it’s been a year since I started. 14th February 2022 was when I had my first chemotherapy infusion. I remember that Valentine’s day quite clearly, the emotions more than anything else. Everyone who love me was worried. I could feel it with every call and text which had my bravado shell switched on. Also, it’s the perennial “you don’t know what you don’t know”, right? I had some idea that it could get very bad but honestly, I didn’t have much idea what to expect so I was quite relaxed that day.

14 February 2022
14 February 2022

Chemo turned out to be very trying. Some days physically and other days much more mental. Now that the worst of it is over and I’m looking at the last stretch of the infusion treatment, I can say it could have been worse, much much worse. Definitely not interested in finding out how much more but stories from other #cancerwarriors reminded me of yet another #lifelesson I have yet to perfect – be grateful.

Friends know I always say “it could be worse.” I do believe it but it wasn’t until going through cancer treatment , did I realise how much worse things can be. Of course on the flip side, it can be better but hey, common sense, keeping up with the Joneses never made anyone happy. We know better and it’s all about perspective.

Not a new lesson, as 5 years ago there was this Now, it’s just cemented by the experience of fighting cancer. So today as I woke up from my usual infusion nap, I am grateful, very grateful for so many blessings. Top of my list would be the people in my life. From my family near and far to friends, even those who I haven’t heard from in years reaching out to give comfort. It is always the people in our lives who make it all worth it.

Much Ado About Hair

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I’ve had long hair all of my life before 13th February 2022. The shortest it has ever been was what I would call a cute bob. Never had I ever considered anything shorter.

Mostly because I thought I had a really round face with flat straight hair that wouldn’t look particularly appealing. It took getting ready for chemo to chop off my hair. Lo and behold, I look pretty decent, if I don’t say so myself. The day before my first chemo infusion, I sat in the chair of my favourite stylist and told her to do as she saw fit and take it all off.

I felt fresh and it gave me that extra boost I needed to start chemo. The style lasted all of three weeks. In that three weeks, I learnt that I really love having short hair and it’s easy to maintain too. Then it started to all fall out, more about that in another post. Meanwhile, it’s post chemo and my hair is growing back in. It’s short like I would never imagine and I’m hoping it’s sassy too.

Think I’m going to keep it short for a while and make the habit of seeing my stylist once every 6 weeks. Something I never did before with long hair. Another #lifelesson you never know until you try … and even if you don’t like it, that’s when you’ll know for sure! So here’s me in what is typically called a pixie cut. Thanks to cancer and chemo, if not this wouldn’t happen.

rolling out

If I want to be a Jedi

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Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering – Yoda

People say recovering from cancer is about being in a state of constant fear – the fear of it coming back. When I was a kid, I was your regular scaredy cat. I reckon it’s par for course of being the first kid and your parents are extra cautious about keeping you alive. It took having a brave little sister to teach me to stare fear in the face and tell it to f%*k off!

Jan 2022
Jan 2023

As much as I didn’t want to do chemo, I didn’t want to be scared of it. Easy to say, the practice of which is a tad more challenging. The Catholic in me doesn’t fear death, it fears suffering which triggers the Jedi wannabe in me to lean into Master Yoda’s sayings. It’s a vicious cycle I told myself, embrace chemo, not fear it and there will be no suffering. With what I know today, it’s easier to be fearless. Yet as I look ahead, I realise the future is unknown today as it was a year ago before I started treatment. Hindsight is 20/20 and it’s easy not to fear the past but the future can be scary, simply because you don’t know.

This week I’m reminded how cancer taught me to take it one day at a time … sometimes just one moment at a time. I’m typically the always on the go type person. With three or four things happening around me. Constantly on the move and in my mind I’m reflecting on mistakes, executing on the present and planning for the next step. It took chemo to kick me off my hamster wheel and there were days when I couldn’t do anything but just be horizontal, so many days. I simply couldn’t reflect or plan … I merely had to just do and doing while on chemo was more often than not, just lying down. I’d like to say I took swimmingly to “One day at a time” but I didn’t. I distinctly remember when I had an iota of energy, I’d feel irritated that I couldn’t do more. And as soon as the energy left me I had no choice but to just be. That said, it wasn’t until after the worst of the treatment that I started savouring the moment. When I could do, I was so grateful it was easy to be in the moment.

So yes, cancer could possibly come back, a piano could also drop on me. In the meantime, I’ll be channelling my inner Yoda and my little sister as I practise savouring each moment and telling fear to f%*k off!

Letting Go

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As I get comfy into round 14 out of 17 immunotherapy session, I go into my usual relaxed mode and the feeling to nap overtakes me. I’m completely knocked out and wake up to the gentle tapping from a new nurse, “Carlene, all done.” I’m like a pro now, knowing the routine – collecting stats, blood … and for some reason always needing to pee in between. I love routines. For a control freak like me, I thrive on it so last year this time when routine was thrown out of the window, I had to relearn to let go.

The first of many infusion set up
Control what you can and let go what you can’t

2022 was suppose to be a busy year and a post covid life getting back to normal. Shows were going to get greenlit, us trying to make a difference with stories from our part of the world but the universe has other plans … as she always does when I get to certain of my own plans. As they say three strikes of the match, started with the cancer diagnosis in February, then losing my amazing boss in April as part of a corporate restructure and finally in August, the same restructure saw me losing my awesome teammate of our well oiled team. That pretty much sums up how my plans were thrown out of the window onto a busy road, ran over by a moped, car and then a monster truck! I had to let go of plans … mostly because I had no choice in the matter. I want to learn how to let go when you have a choice, maybe then I won’t have to relearn this lesson again. Advice anyone?

And I’m back!

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Hello from Perth! It has been a while since I was back and even longer since I last posted. A lot has happened and I’m coming back to my blog. It was set up, way back when to keep me accountable and in 2023, it is precisely why I’m back. To reflect on the last 12months and try to make sense of it.

One year today I was diagnosed with cancer. Stage 3C triple positive breast cancer. As bad as it sounds, ironically, it is a good thing. Simply because of the aggressive nature of it, made it one of the more researched cancers with many successful protocols that I was fortunate to have access to. Now I’m in one of my favorite cities reflecting on one of the most unique years of my life.

Growing up, I spent a lot of time in hospitals. That’s where I learnt you want your intravenous drip on your non-dominant hand so that leaves your dominant arm free to do what it needs. Also why it didn’t faze me when doctors said I would need to be on chemo for a better part of the year, then surgery with another month of radiation as well as immunotherapy and anti hormone treatment. While I wasn’t fazed, I had previously thought to myself if I ever get cancer, I would NEVER do chemo and try alternatives first. This is my first lesson from cancer, never say never … especially NEVER. It’s like a funny way for daring the universe who always has a way of showing me that I don’t know what I’m talking about.

That’s what happened when I was first told it was cancer and possibly stage 1. I was all “ok, stage 1, what kind of alternative therapies are there?” Then it became more likely stage 2 and alternative therapies are still work-able. When it quickly became stage 3C and alternative treatments are no more alternatives, I had to swallow my “I’ll NEVER do chemo.”

There were plenty of emotions when I had this come to Jesus moment. It was quite a range if I remember correctly too. My Dad asked if I was angry which is my go to emotion. I was mostly a bunch of nerves and anxiety and in true me style, I went into crisis management mode. What does triple positive mean, what are different treatments, what are the side effects? Trying to get as informed as my lay medical self could possibly understand.

And came to the conclusion that we have to be as aggressive in treatment as this mofo aggressive triple positive cancer. I then imagined these cancer cells being of the Sith order and the chemo drugs are Jedis with numerous X-wings in a battle on the intergalactic system of Carlene. Settling myself into possibly the biggest fight my body has had to put up. As I embraced chemo, I knew at the back of my mind that this experience has to be an opportunity to learn and grow. What and how, I’m not exactly sure yet; hence this year of reflection. With some distance of time, I’m hoping for some clarity as I slowly recollect the lessons here on my blog. Not so much new lessons but at 47, cancer was more of a refresher course, crystallizing what the universe had tried to impress on me years before. So the next 52 weeks, to keep me honest, I’ll be blogging or vlogging about these lessons. Making sure they stick so the universe doesn’t have to send me on a another refresher course.

Never say never