Archive | lymphoma

Born to Lose. Live to Win.

I very nearly didn’t survive my first two years on this stinky planet. No joke. Got really sick after birth from what turned out to be a lung gone all septic and sif, half of which the doctors chopped off in the end, at the tender age of 18 months.

The story goes that my dad was smoking outside on the hospital balcony when he overheard two doctors discussing a baby boy with a messed-up lung and his chances of survival. They were not very optimistic, with the one predicting that the boy actually has no chance at all. My dad (a retired amateur boxer and erstwhile bar fighter of some renown in the Vaal) nearly clocked the doc right then and there. I am happy he didn’t because they really needed him for the surgery. And I made it!

So there I was, 18 months old, half a lung lighter, a little shorter of breath than most toddlers but otherwise okay. I had a bad-ass scar from under my left nipple stretching around my ribcage and reaching almost all the way to my spine. But wounds heal and chicks dig scars, right?

The scar is still there, it stretches with your body as it grows. Weird… Over the years I have invented great alternative stories for pool parties, beach trips, raves or other events where one is generally shirtless and when new acquaintances inevitably ask what happened theeeere (pointing).

“That’s why I don’t surf anymore mate,” I would say softly, my head turned to look at the ocean some distance away, peering deep into the horizon. “Shark attack in ‘99, just off Kommetjie. Was all over the news. Just glad I’m still here man.”

The other story only works because I am originally from Vereeniging, an industrial town south of Joburg. I would claim that I went to work in a sheet metal factory after school to earn some extra cash and got hit by a flying steel disc. Of course they could not remove it there as I would bleed out (duh). I had to travel to hospital with this steel disc stuck inside my body, for it to be surgically removed. Took 18 hours. Can’t believe you didn’t read about it? It was all over the news.

(cue laughter)

The point is that the cards get stacked against us, sometimes at birth, sometimes later, sometimes all the time. This is what inspired Lemmy Kilmister, frontman for Motörhead and the truest embodiment of rock and fucking roll, to live by his “Born to Lose. Live to Win” motto (and accompanying tattoo). Abandoned by his father after birth, he grew up poor and was expelled from school,but went on to rewrite rock history and kept performing flat-out until his death in 2015 at age 70.

I was able to beat the bad hand I was dealt way back in 1975. I am proud of my feisty little 18 month old heart for being strong enough to keep fighting. Little bugger clearly wanted to live dammit! The 41 year old version of said boy approves. A lot.

Now I’ve been dealt another bad hand. No sharks or flying steel discs this time, thankfully. This time it’s a cancer diagnosis and the added bonus of chemotherapy, the gift that truly keeps sucking.

But that’s life for you hey? You’re born to lose and it’s up to you to keep living to win. Dying does not get you to the next level. Giving up does not get you to the next level. Being depressed does not even get you up out of bed.

So thanks Lemmy, Mr. Kilmister sir. I will take your words and make them mine also. I was quite literally born to lose (my life) but I am living to win. I did it before and I will do it again.

 

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Today I am overwhelmed

Today I am overwhelmed.
I get dozens of calls, messages and “check-ins” every day. Food gets dropped off at our house, as if by magic. Music, clothes and books have all made their way to me, unexpectedly but always incredibly thoughtful and massively appreciated.

 

Today I am overwhelmed, but in a good way.
It is as if everyone’s kindness is creating defensive shield around me, cushioning me from the bad stuff and energising me to produce more of the good stuff. (I can assure you I am trying my best to do my part.)

 

Today I am genuinely grateful and humbled.
Thank you, thank you, thank you from the deepest corner of my heart and soul. Know that I genuinely appreciate each and every word, message, gesture sent my way. It is truly overwhelming. But the good kind.

With all of you in my corner, it’s so much easier to come out swinging in the next round.

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Hair today, gone tomorrow

First things first. This is not a post blindly bitching about my hair falling out because of the chemotherapy. I always knew it was going to happen so I guess you can say I was prepared. What I was not prepared for is how frustratingly random this kind of hair loss actually is.

I thought I was be clever by shaving my head before the inevitable happens, so I shaved just after the first treatment. (I was being proactive, ten points to Slytherin!) I had to shave again after the second treatment and am probably heading for another shave soon.

Not that I am not losing hair.

My eyelashes were some of the first to jump ship. I have to contend with regularly finding them in the basin (fine) or sometimes in my food (less fine). No late goth phases for me at this advanced age as manscara is now firmly out of the question. A small mercy, if you ask me.

I can report that the hair on my scalp are finally thinning out as are my body hair. There seems to be no particular rhyme or reason to it. Some disappear here, some disappear there without any regard for symmetry or aesthetics. I won’t say too much except that it’s odd. Believe me.

I am left wondering if it would not be better if everything just dropped off in one shot. Bam! Done! Thank you for playing. Collect your hair again once you’re better. Please keep the receipt. Terms and conditions apply.

Of course hair you do not want seem unperturbed by this random culling of their kin. My facial hair still grows fast and still requires shaving regularly, a ritual I loathe and always leave until it’s too late and way too much effort. In a cruel twist, this hair now grows both quickly and patchily.

The fine hair in my ears and nose (a delightful side-effect of being post 40) also seem to not have received the memo that we’re right in the middle of chemotherapy and that all hair need to evacuate until further notice. Unshaken they forge ahead, bending against the tide.

So here I am with patchy body hair, half a beard and a mostly shaven scalp. Hair loss is fine, but is it too much to ask that it happens in a way that makes sense?

Alopecia is indeed a cruel mistress.

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Introducing the all-new, all-powerful CKO!

After getting my routine chemo yesterday I got, as they say KNOCKED THE FUCK OUT! 

Fuck side effects, I had fever attacks, the shakes, cold shivers, blistering pins and needles in my fingertips, insane hallucinations, grogginess, overwhelming fatigue and was unstable on my feet. Thanks to the cortisone, however, I could not sleep either. I was man down. Proper.

I therefore humbly submit that fighting speak be updated to include the CKO or Chemo Knock Out, a term that can share ringside relevance with TKO (Technical Knock Out) or the old skool favourite, the KO (or KNOCK OUT!).

So respect where it’s due, round 3 goes to chemo. Son of a bitch hurt me real damn good. But like slugs in a shotgun, my chemo has 12 rounds in total and a CKO does not stop the fight my friends. The fight stops when one of us is dead. Two men enter, one man leaves. These are the rules of the Thunderdome.

And I have no intention of losing.

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Going to pieces in a Burger King

It was a crazy day. Busy at work, roadworks messing up the highway and then the usual agonising struggle to find parking at the hospital. (All insignificant irritations, in retrospect.)

What started as a pain in my left shoulder a week ago turned into something “abnormal” that needed to be investigated. Although I first dismissed the pain as muscle strain, I guess I knew instinctively that something was off. I rarely break a sweat in gym and my 100% desk job hardly puts serious strain on those muscles, let’s be honest.

While massaging my neck and shoulder in bumper-to-bumper traffic on the N1 soon after, I felt a bump just below my clavicle. The bump turned out to be a swollen lymph node, which needed a biopsy for testing. The doctors also ran a load of scans and tests to see if there were any other swollen nodes in my body.

Today was Results Day, and we sat down anxiously to get the low-down from the doctor…

“It’s lymphoma,” he says and immediately continues describing what it is and how it works, what the best treatment is, what happens next, what my chances are, how long it lasts, how it works, how bad, how good, on and on and on. Stats and data wash over me, drowning out my thoughts, leaving my mouth dry and hurting my chest. I try and remember some of it while I focus very hard on not losing my grip.

I can’t die now.

I am a proud daddy to a beautiful little girl who’s almost two. I am a partner to an incredible, supportive and loving woman. I am a son to the most amazing parents. I am an older brother to two fantastic sisters. I am a friend to so many wonderful people. I love life. I love my life.

I don’t want to die.

“I don’t want to die,” I say to A as we wait for the lift afterwards. “You’re not going to die,” she says firmly. “You heard what the doctor said.” She reaches for me, but I turn away, afraid I will fall apart at her touch, at the overwhelming love and kindness shown in this awful moment.

Turns out I chose “one of the best cancers” to get (lucky me!) as it has an 80% recovery rate with ABVD, a specific regimen of chemotherapy applied for at least six months. Could have been worse, I guess, although it’s hard to see the silver lining at this moment.

We discuss my diagnosis as we head home, making a quick pit stop at the local Burger King as we’re both starving and need to rush home to pick up our daughter for her doctor’s appointment. (So much for a healthy eating plan…)

The Burger King is out of ketchup, which at the time I find wonderfully ironic but we settle in nonetheless, ready to inhale our generic and tasteless burgers while discussing the topic of the day, cancer. Cancer cancer fucking cancer, arriving at the party late with no ketchup and ready to fuck up everyone’s night.

We talk softly among ourselves and joke about the place and the food in the way couples do, but inside I am positively raging. I am mad as hell. I am pissed off. Fuck cancer. Honestly. I am livid. But more than that, I am sad. So terribly sad. I feel helpless, frustrated, anxious, depressed, freaked out, scared and stressed out. This. Is. Such. Fucking. Bullshit. Why me? Why now? Why us? Why this? Why? Why? Why?

Again A reaches for me.

“Please don’t,” I say, my voice thick with emotion. “I can’t… I don’t want to go to pieces in… in a Burger King.”

I look up and our eyes meet. It takes a split second and then our spontaneous laughter catches us by surprise and dials the moment right down. The tears are there, but they’re good tears. We can do this. I can do this. We’re going to be okay. I am going to be okay.

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