JAN 22 — It finally happened; my hair started falling like autumn leaves, strands dropping wherever I went, leaving a trail of black and grey.
As poetic as I make it sound, the reality was far cruder — waking up with hair in my mouth and feeling deeply embarrassed to see fallen strands all over my toilet seat.
Walking past a hair salon recently, I decided to step inside and request a full shave.
The shave itself wasn’t the hardest part.
My hairdresser was deft and exact, my scalp perfectly intact with no cuts or nicks.
The hair wash and scalp treatment were less pleasant, where I could only clench my teeth as my attendant scrubbed my scalp because I couldn’t find it in me to ask him to go easy.
Chemotherapy has left my scalp sore and I was told shaving my head would help, rather than let my hair fall out on its own.
Instead I have had to grapple with the strange sensation of friction—my scalp is fine when exposed but putting a hat or scarf on is a discomforting experience.
It is not painful, but feels unpleasant to the point it makes me want to rip my hat off.
Funnily enough my scalp is far more tolerant of a wig cap and wig so it seems like I will be wearing my Temu wig a lot more often, when I had only purchased it for the sake of social media pics.
My sister has also gotten me a long, blonde wig for when I feel like letting out my inner Beyoncé.
Chemo day
My morning trip to my second chemotherapy session saw me weeping in my Grab after saying goodbye to my father who was flying back to Kota Kinabalu after a few days in Kuala Lumpur.
Being able to speak to him over breakfast, for three mornings in a row after not seeing him for so long, was for me, this month, my biggest joy and cause for my deepest sorrow.
I had been fretting lately that I hadn’t been able to spend enough time with either of my parents but as luck would have it they ended up flying to me.
Each time I felt again like that little girl sadly watching her father fly off to a business trip or crying in bed waiting for my mother to come with a washcloth to soothe one of my many childhood illnesses.
Now they are both back in Sabah and I am alone in the cold waiting areas of HKL, standing for an hour waiting for a blood draw, and waiting another three hours to speak to my oncologist before I have my second round of TC chemotherapy.
I have one more round of TC to go before I start on four rounds of Perjeta and Herceptin, which blessedly are paid for with the kindness of crowdfunding.
Each round will cost RM10,600 and what flummoxed me a little was that I was told to walk over to a private pharmacy and order the drug, pay for it and then have them ship it over to HKL.
Being the emotional mess that I was, I’d forgotten to bring a cooler bag for my white blood cell booster shots and my brother came to the rescue.
He kept me company when I had to get an appointment to see the HKL surgeon as it is no longer financially feasible for me to have my surgery at UMMC and I am unsure if I will have the stamina to juggle two different hospitals.
With the long wait and crowded daycare units, I think my upcoming chemotherapy sessions will be more taxing and even my HKL oncologist agreed I’d be better off cost-wise to stay at one hospital.
It makes me wonder if the long wait for chemotherapy has always been a thing or if more people are now doing what I did, which was to switch to public healthcare due to the steep increases in insurance premiums and private healthcare prices.
Current issues of the day aside, what is it really like to experience chemotherapy at HKL?
A normal chemotherapy session at HKL goes like this:
• Line up to get your blood drawn on the first floor, brandishing the form that shows you have an appointment needing one post-haste
• Head up to the oncology daycare unit on the sixth floor, drop your appointment card and wait to be called to be weighed and have your blood pressure taken
• Wait an interminable amount of time for your number to be called to pay for your session, see your oncologist and finally head for chemo
• Find an empty daycare chair and wait to have an IV port installed, then get your anti-nausea medicine delivered through your IV
• Go to the daycare reception table to have the chemo nurse infuse large syringes into your IV
• Return to your daycare chair as you finish getting your IV port flushed with saline, usually two bags’ worth
• Get your blood pressure taken again, sign off on your release form and skip out of the daycare room, hopefully without the desire to throw up your lunch
Again I feel blessed that the doctors and nurses have been nothing but kind and polite throughout so I hope that the Health Ministry addresses the massive exodus of health professionals before I need to get my therapy infusions from a vending machine.
Once done, I returned home and devoured tandoori and naan, immediately put my chemo outfit into the washing machine so it wouldn’t soak up too much chemicals from chemo, put on fresh sheets on the bed, WhatsApped my parents to let them know I survived the procedure (again!) and lay down to finish this column.
Once this is done, I will get a nice foot massage courtesy of a machine gifted by a friend and hopefully sleep a solid eight hours — which I know will not happen because I will probably wake up every few hours to pee out all the chemo in my system.
My best advice for people who will experience chemo is this — you won’t know what it’s like until you personally experience it as it will differ from person to person but the best thing you can do for yourself is sleep well the day before (or at least take many naps), have a light breakfast, avoid wearing scents or deodorant, bring hard candy to suck on when your IV port gets flushed and prepare for a long wait.
Bring a power bank too and a warm jacket, as well as something to do while waiting for your chemo to start or to be released.
Most of all, keep your spirits high because your mental state and emotions matter a lot during this trying time.
Next week, I’ll talk a little bit more about navigating the public health system and some common perceptions that need debunking.
Thank you, once again to the people who are helping to keep me alive as my most expensive pressing targeted therapy, Perjeta, is now fully-funded.
The road is far from over as I have surgery that is likely to happen in June and another 14 rounds of Herceptin, radiation and five to ten years of medication, not to mention physical therapy and rehab.
So feel free to buy me a Ko-fi (LINK: https://ko-fi.com/ernamh2202) because coffee is currently my only allowable vice.
Croissants don’t count because as far as my healthcare providers are concerned, my gaining or maintaining weight while being treated is news worth sharing with the entire ward.
Nurse, announcing it loudly in the treatment room: “69.7! Two kg more than the last session!”
Me, internally: “Thank you for letting me, and probably the entire oncology ward know.”
I hope I continue to find the humour and levity in this experience even in the face of a rather daunting diagnosis and that at the end of this all, I can still smile and joke about all the times I made my doctors laugh.
