Monday, November 21, 2016

#WhenIsDefinitelyNow

It's been a year. A whole year. A year since everything changed. Everything and nothing. 

Exactly a year ago, my mom and I sat in a room and heard words we never thought we'd hear. I had cancer. I have cancer. I still have cancer. I'm living with cancer. LIVING. Try guessing how lucky I feel? It's unquantifiable. 

People wonder how you can feel lucky waking up every day knowing you have cancer. I believe that question belongs only to the fortunate ones who've never had to consider the possibility of not waking up in the morning. 

I know lots of people get quite upset and correct me when I say I still have cancer. They prefer to file it under 'past' or stick it in the big box labelled 'scary shit I don't like to talk about', but the truth is we won't know until follow up scans in January if the cancer has actually left the building that is my body. 

Even then, we might have to wait for more answers. People talk about 'The Big C'. They should be more frightened of 'The Big W'. Waiting can kill you. 

So, instead of rehashing the past, let's look at the present. What's happened in a year? 

Very little. 

Life continued as normal. I got a brilliant new job and a new home that I adore. But that's just stuff and things. 

I got to witness amazing things happen to people I love. Engagements, weddings, babies. That was significant. 

I gained a couple of friends. I think I also lost a couple of friends. 

But I choose to focus on the friends that showed up in hospital wards they really didn't want to be in, the ones who called me before and after every single doctor's appointment, the ones that let me have a big soggy cry and then never allowed doubt to creep in again. The friends who didn't allow too much distance to form even though we had nothing in common at that moment. The ones who didn't pretend to know what I was going through, but found other people for me to talk to who did. I am in friend debt for life and forever schooled in what it means to REALLY be there for someone. 

And my family. My very tiny amazing family. You never got tired of my incessant cancer planning. You never made my story about you. You never competed. You never banked in on my drama, even though you were so deeply rooted in it. You want only the very best things in the world for me. You made so many amazing memories for me this year. Not just 'in case I don't make it' memories, but memories that brought us closer to each other, not because we might lose each other, but rather because we are glued together forever. I fiercely love you and I will beat a thousand baddies with a thousand flip flops for a thousand years, just to keep you all safe. 

I learnt that if anyone was going to truly step up for you in life, now would be the time. So, those who didn't, it's ok. I'm able to put a full stop at the end of our chapter. Thank you. It's freeing. 

Most of all, I just want to say thank you. Thank you for reading my posts and reaching out to me. Cancer doesn't make for the most appetizing reading material, but being able to share my story has been incredibly cathartic and grounding. You will never understand how touched I have been by your messages, your stories, even your countless offers of medical marijuana! (Seriously, I got so many offers, I could have started some kind of cartel.)

I have lost count of all the things that make me lucky, but I know for sure that I'm lucky that I feel great, that there's no pain, that my cancer is treatable, that people chose not to treat me like I was sick, that, besides a few exceptions, the 'cancer face' part of this saga is over, and that I have largely been able to carry on with my life as 'normal'. 

This will be difficult for many to understand, but in a lot of ways, I'm glad this happened.

I was asleep. I wasn't present. I was passing time. Now, I'm wide awake and I'm showing up for life every damn day. 

Dear Universe, thank you for the lesson. 

#WhenIsNow
#FuckCancer
#FierceAsFuck

Sunday, November 20, 2016

#WhenIsAlmostNow

I publicly made a promise that I haven't kept. I promised to live in the moment, do more, see more, feel more. I promised not to put things off, to not let others get in my way, to not get in my own way. I promised to stop waiting for 'when' and to live by my 'when is now' mantra.
If I'm honest, I've been pretty crap at this.

I've made a couple of small changes. I sleep in an extra hour every morning (I now wake up at 5am. Big deal.). I leave work earlier (I get to see daylight most of the time.). I have a standing manicure appointment every two weeks which I never cancel (Staying committed is progress.). But it's not much.

And here we are, once again, heading towards the end of the year and I'm drowning in remorse for all the time I have wasted.

More significantly, we're exactly a month away from the one year anniversary of my cancer diagnosis. A whole year. I can barely remember life before it.

Also, I am three months away from my follow up scans and tests, which will either declare me cancer-free or solidify my status as a cancer patient. The closer it gets to these tests, the more anxious I get. You can think as positively as you like, but the worry bleeds into every part of your life. It's the nature of this piece of shit disease. I have to remain prepared. Prepared for anything.

So, anyway, back to my broken promises...

I'm going to cut myself some slack. It's been a really tough year. Having thyroid cancer is bad enough, but living life without a thyroid is so much worse than I was prepared for. It's been six months since it was removed and the doctors are still trying to get my thyroid replacement meds right. The side effect of that is an 18kg weight gain, weekly blood tests, terribly low energy levels, zero metabolism and very little tolerance for alcohol (I miss my precious tequila.). The thyroid struggle is real, people. Oprah wasn't lying!

We're getting there, though. My levels are slowly starting to come right and I'm about a month away from having some form of metabolism again. Thank fuck. I missed it the most.
So, the next three months are going to be really tough. Maybe the toughest. Because I had radioactive treatment which stays in your system for six months, I have to wait until mid January for my scans. I'm back to waiting. Waiting is the soup of the day again. Waiting. Just waiting. Did I mention I have no patience?

I have only one option. Stay busy for three months. This conveniently fits into 'when is now' and helps redeem me of the aforementioned broken promises. 

Plan: I'm going to cram it all in. December/January is going to be the absolute worst time for me, so I'm implementing Project Distraction. There'll be overseas trips, there'll be trips to Durban, there'll be trips to Cape Town. There'll be so many trips. There'll be a car purchase. There'll be so many things that I put off this year, that I promised I wouldn't.

I know this is all shallow and frivolous and will not enrich me mentally or emotionally, but being brave is exhausting. I'm human and I'm scared and I should be allowed to be a little bit ridiculous.

Yes?

#fuckcancer #wozadecember
#whenisnow

#RIPNkalakatha

I often think we throw the term 'legend' around pretty loosely, but in Mandoza's case, I would say it's fitting.

Lots of words get tossed around when speaking about him. Words like 'crossover' and 'nation building' and lots of other overused cliches. Yes, he was responsible for the world's most overplayed kwaito track that white people liked, but that's not why the guy is a legend.

I met him dozens of times. Dozens and dozens of times. He was always the same. One of the mos...t consistent guys in the business. He was shy. He was humble. He was embarrassed easily if you made too much of a fuss of him. He was always late and always apologetic and I could never bring myself to make him feel bad about it because he was MANDOZA. He always showed up though. He always brought his A game and he was always respectful.


So, why does that make him legendary?

Do you know how much shit you have to swallow when you're Mandoza? So many people who are shedding a tear today are the same people who mocked him, disrespected him, tried to make him feel small. He was bullied about the way he spoke, his skin, his shades, his comebacks. Everything and anything. And how did he respond? He continued to give of himself, he continued to make himself vulnerable, he continued to open himself to your jokes. But he wasn't a joke. He was a young man who overcame the odds, who was honest about his flaws, who never went away, even when people declared his career dead.

Today my heart hurts. It hurts because we've lost someone who was a big deal to us. It hurts because he was exactly 7 days younger than me and that's just too young to die. It hurts because he died of cancer and that could have been me. It hurts because I'm scared he didn't know how much he was loved. It hurts because at times people forgot he was just a person who was self-conscious and self aware like the rest of us humans. And it hurts because we'll never hear reports about a comeback again (as if he ever went away). There'll be no more 'comebacks'. 

We'll miss you, Mduduzi, you legend.

Rest in peace.

Do you know who I am?

It’s been exactly nine months. If I go back nine months and one day, things look quite different. Although, I knew without question that something wasn’t right, I can confidently say that nine months and one day ago, I never considered that nine months and one day later, I’d be reflecting on my journey with cancer. But here I am. Once again talking about ‘The Cancer’.

And there are those who are reading this thinking about my incessant need to talk about this and what that means about my self-esteem. (SPOILER ALERT: My self-esteem isn’t in the greatest shape. Even more reason for me NOT to be writing shit like this and exposing myself to you questioning my self-esteem.)

Believe it or not, I don’t care if anyone is reading this. I’ve found writing about this incredibly therapeutic. It’s provided me with a much-needed release. That said, it feels so great when people feel connected to you or your journey. It makes this whole thing feel a little less pointless.

But anyway, this post is actually less about ‘The Cancer’ and more about identity.

Who was I nine months and one day ago? I can hardly remember.

Nine months and one day later, I’m still referred to by doctors as a cancer patient. I’m still talking to my medical aid about my cancer benefits. I’m still the recipient of fresh new batches of ‘Cancer Face’ (my fave) and pity. And I recently had to have a cancer conversation with a beauty therapist who was suggesting a particular laser facial (Laser is a no-no if you’re trying to kick the cancer habit. Some lasers really love to stimulate cell growth. If you have cancer cells, you don’t want those fuckers reproducing. Reproducing cancer cells are particularly inconvenient.).

We are so used to being described and defined by what people see first. Is it your skin colour? Maybe your hair colour? Your gender? Your body shape? Maybe once they get to know a bit more about you, they’d use your religion or occupation to define you. Your marital status is also a means of definition (My single homeys know all about this.). I’m used to all of that. Our whole beings squished into a string of keywords.

But life is fluid and so are these keywords. They change. Right now, I’ll bet some of you are something you weren’t nine months and one day ago. Mother? Father? Husband? Wife? Divorcee? Single? Unemployed? Bereaved?

Some of these labels are easier to fit into than others. It’s like getting a drastic new haircut. You keep getting a fright every time you look in the mirror. Is that me? Do I like this? Does this feel like me? But some labels don’t grow out. Some of them can’t be fixed with clips and a styling spray. Some will stick with you forever, whether you want them to or not.

As much as I hate the ‘C’ word, I know it will always be with me. It will follow me to facials, to random check-ups, to scheduled annual check-ups. It’ll pop up on more forms than you’d expect. It is now an indelible stain on my family medical history.

Sometimes people introduce me to others as a cancer survivor. It makes me CRINGE for two reasons. Firstly, I think there are so many more interesting things about me than that. Secondly, I’m not officially a cancer survivor until we get through my one year follow up scans. And I’m going to throw in an unplanned third point; I don’t feel like I survived something. I lived through it. I’m still living through it. It’s a process, not an event. I find this difficult to explain.

Anyway, the whole point of this pointless point is that I added a new label to my collection in the past nine months. I have a new google search tag. I have a new box to tick. I have a new invisible thread to millions of others around the world. A new thing that connects me to a new community. I’m part of a new collective.

And while I’m now part of the fiercest army in the world (Cancer is not for sissies.), I sometimes just long to be Jo, a girl who can’t ride a bicycle, violently hates blue cheese, loves making TV, sometimes shaves off half her hair, loves to travel, and would run you over for a piece of cheesecake.

*Go ahead, haters. Say it. “If you stopped writing about your cancer, people wouldn’t define you by it.” That may be true, but go ahead and fuck off anyway. I can’t find it in me to give even one eighth of a fuck about your thoughts on the matter. (Oh, and Jo is also a girl who likes to say “fuck” a lot. Sorry, mom.)

When Is Now

I need to share a story with you. (Somehow, putting it out there makes me accountable for sticking to my resolve.)

By now, you all know I've spent upwards of the past five months smashing cancer in its face and, for the most part, my prognosis has been really positive. Having potentially treatable/curable cancer makes it all a lot easier to deal with. Most of the time, I've kept a level head, a fierce as fuck attitude and a lid on my googling. However, there was one week during this whole journey when things fell apart. By things, I mean me.

After a scary appointment with a new Doctor, resulting in a scary scan, which produced scary results, I was left with the news that it was quite possible/likely that I had a VERY scary kind of cancer. When you see a Doctor panic (which they very rarely do), you know there's trouble. Even more telling is when they escalate things to an urgent level (it takes a lot to get anyone to treat you with any urgency).

All of a sudden, we were scheduling urgent appointments with my oncologist so that I could be urgently referred for urgent core biopsies (Unbelievably uncomfortable procedures which involve very long needles being stuck in you while you have to lie very still. I had five of these.). 

Ok, let me get to the point...

I researched (googled) the kind of cancer they were testing me for. It was bad. Really, really bad. Four things scared the fuck out of me:

1. A 6% survival rate
2. The words "usually fatal"
3. The fact that when I searched for survivor forums, there was only one and let's just say it was a VERY poorly populated group
4. It spreads far and wide very rapidly


That was it. I was done. I started telling people that I was now convinced that my body wanted me dead. My head wasn't in the game anymore. For the first time since the last time I thought I might not make it (the day I was diagnosed), I started to think about the end. I cried. I cried more than I've ever cried. I cried harder than I've ever cried. I cried for days.

Seven days, to be exact.

Here's why I cried:

1. Parents shouldn't have to bury their children. It's not the natural order. I never wanted my Mom to have to feel pain like that.
2. Regret. I regretted all the time I had spent waiting for "when". I'll be happy when . I'll be happy when I lose 10kgs. I'll be happy when I earn more money. I'll be happy when I meet 'The One'. Everyone has a different "when".


It turns out that "when" is an elusive little fucker and every time you think you're getting close to it, it seems to slip further away.

So, here's the lesson...

A lot of the tears I cried came from a shameful place of discovery that I have spent so much time waiting for "when", that I think happiness has evaded me completely.

I worried that people would speak about my great work ethic at my funeral and very little else. It bothered me that there wouldn't be much more to say about me because I haven't been living my best life. Not even close. I've pretty much thrown myself into my work while I waited for "when".

That home truth left me completely winded and I felt like I had run out of time to do anything about it.

Let me fast forward seven days...

My Doctor called me with the test results. He was seemingly shocked (and really relieved) to discover that I didn't have the very scary cancer. I'll never forget standing in the middle of Sandton City and sobbing like a small child (People stared. I'm terminally uncool.). Not just because I wasn't going to die, but because I had another chance at "when". I get a 'do over'. I get to fix it.

Since that day (the 26th of February), I have a new mantra....

When is now.

That's not a question, it's a statement. No more waiting. Enough. Every day is "when". It may not be what I thought "when" looked like, but this second chance is feeling an awful lot like happiness.

And there you have it. My long winded teeny tiny pearl of cancer wisdom.

When is now.



Monday, April 11, 2016

Fear in the time of cancer

Fear is not the same as negativity. Being terrified is not a form of self pity. 

It's frustrating trying to express your fears and having people telling you to stay positive. 

It's exhausting being brave ALL the time. Do you know how much energy goes into holding your shit together when you have a disease that's killing so many people around you?

You'd be mad not to be afraid when you have cancer. 

I'm allowed to worry. I'm allowed to be scared. I'm allowed to treat the doctors' positive opining with suspicion. I'm allowed to be sceptical of words like 'hope' and 'probably'. 

Yes, I'll 'probably' be ok. I 'hope' all will be well. But allow me the space to be scared shitless that I won't. I haven't given up. I have no intention of giving into darkness and negativity. But let me feel grief for the loss of my blissful ignorance and days never ever spent considering things like cancer. I miss that time. I'll never get them back. 

*This is written simply for purposes of release. I'm finding it hard to hold things in at the moment. And truthfully, it's very difficult to find people who are willing to entertain the "what happens if I don't make it?" conversation. It's not a popular one. 

**My surgery went "very well" on Tuesday. I'm in pretty awful pain and look like I've been a couple of rounds with an axe murderer, but after removing my whole thyroid, lymph nodes and all the surrounding tissue, the surgeon seems confident he got all the cancer out of my neck. We'll only know the final outcome after more scans in about a month. 

***A lot of this fear has been prompted by the loss of two kick-ass young people this week. They were both strong and determined to beat cancer, but they lost their battles. Chantel Rall and Igor Najbicz, you're in my heart and my thoughts. Their passing has shaken me to my core. 

****If you have someone in your life dealing with cancer, let them tell you how scared they are. Avoid the temptation to minimise their fear, or squash it into a little rainbow ball and try and make it go away. One of the things I'm most grateful for is my oldest and dearest friend who let me sit in her lounge and cry big cancer tears when this all started. She let me be afraid. 

*****#fuckcancer 

Friday, March 25, 2016

My Disneyland Diagnosis #fuckcancer

I am overwhelmed by the love, support, messages and calls I've received over the past five months. I'll never be able to fully describe how incredibly frightening it's been and how comforting it is to have so many special people in my corner.

The abridged version of my very long story is this...

After 11 biopsies, 12 different doctors, and more blood tests and scans than I can count, it turns out that the lymphoma was a misdiagnosis.

Since this journey started, I have been investigated for three different kinds of cancer in four different places in my body. (One of which only has a 6% survival rate, so you can imagine how fun googling that one was.)

It turns out that I only have one kind of cancer and it's in two different places. It's thyroid cancer, which, in the land of cancers, is basically Disneyland. 

In just less than two weeks, I'll be going in to have my thyroid and all the lymph nodes and tissue in my neck removed. (Even Disneyland has some scary rides.) The upside is that chemo is off the table for now and I'll most likely get away with a little bit of radioactive treatment.

Honestly, I feel like the luckiest girl in the world and can't wait for this chapter to be over so that I can move on and live a life that doesn't involve needles and waiting rooms.

Being referred to as a "cancer patient" is humbling as fuck. I have learnt unimaginably meaningful lessons and can truly say that I have never been more present in my life than in this scary part of it.

Again, thank you for keeping me close to your hearts and in your thoughts. 

I can't wait to leave Disneyland! x