Kooge's blog: My brush with cancer



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I'm not the kind of person to blog. I don't write. And I don’t like showing my emotions or talking about personal stuff. I'm more a visual person - photography, graphic design etc.

But I’ve been through hell in the past few weeks and I need to get it off my chest (my counsellor said it would be a good thing to do as well). So excuse this poorly written entry, it is what it is. And it's human.

It all started back in early May, when I got the flu and a couple of lymph nodes suddenly started to swell up on the right side of my neck. I thought nothing of it as I'd had glandular fever when I was in my early 20s and I was told you could get mild reoccurances of symptoms with bad cases of the flu.

Anyway, couple weeks went by, flu went away but not the lumps. They got bigger. One in particular - to about 9cm wide. I Googled this, it was odd. Saw the doc, she too thought it was odd and started me on back to back courses of antibiotics to see if I wasn't an infection. She also ordered bloods for everything under the sun (apparently swollen lymph nodes are a symptom for nearly every kind of illness you can think of - they are part of the bodies defence system of course).

Nothing happened, I finished the pills and the lump got bigger. I insisted to the doc we check it out in case it's something serious - so she ordered a Fine Needle Aspiration, when I asked what for - she said "to rule out cancer".

Well, that's it - hear that word brought up in the same conversation as your own health and let me tell you - your heart beat races and everything starts going in slow motion, I pleaded (trying not to sound desperate) "it wouldn't be cancer, right? I mean it can't be?" she said not to worry, let's just cover all our bases.

We did, and it came back negative. We were relieved, she was relieved. She told me about a patient she had awhile back with the same symptoms but he didn't fare as well as I did. Life was okay again, it was back to normal. The next week we went on a family holiday to Gold Coast, it was filled with relaxing and general happiness and just pure relief. You could see it on everyone's faces - a couple of weeks of "what if?" wiped and replaced with the warm Aussie sun.

We got back and got on as normal, but the lump didn't go down and two others seemed to have emerged - the size of marbles these ones.

I insisted with the doc to have a look again - that's when I was referred to a head and neck specialist. He looked and again, ordered more tests and then and there did two more Fine Needle Aspirations (which, by the way is a needle that they put into the swollen gland to grab out cells for testing in the lab - it hurts). The second one came back clear. The third one, positive... it was cancer.

I was asked to go to the hospital to see the specialist. I remember being beside myself. I didn't want to eat or talk to anyone. I was sweating and I just wanted to jump in a plane and go far away from the problem. But I've learnt lately (I must be maturing bloody slowly) that as an adult it's easier in the long run to just face up and deal with big problems right away, before they get bigger.

After what seemed like hours of waiting, watching the Olympics on a small screen in the hospital waiting room (Usain Bolt had just won a track event, ironic - his blistering speeds compared to my gruelling wait), the specialist came out of a room dressed in scrubs (not the attire you imagine such lie changing news would be delivered in - no softening the blow here).

"It's lymphoma" he said abruptly. Like it was no big deal. "But don't worry, you're young - you'll beat this". The rest of the 20 minute meeting was a blur, I remember my poor mum reaching out to grab my hand but I shoved it away. I just stared out the window into the beautiful Auckland blue sky and for some reason had the sudden urge to go paragliding (I'd never had that urge in my life ever before).

We left the room and the hospital and our world changed. I remember feeling like I was in a movie, rudely shoving past a courier so I could get in the nearest lift and get the hell out of that medical maze. My dad, obviously trying his hardest to stay composed offered that we go get lunch from Subway as we left he lift. My mum, giving him the "not now!" look. Me, quickening pace, straight for the double doors out to the car park where the sun shone and busy people made their way to appointments.

I remember losing all strength in my knees, and crumpling. Right there in the fucking car park. For the whole world to see. A grown 28 year old man, crying. I couldn't stop it. I had cancer. Who gets told they have cancer at 28? My parents, holding me up, both of them holding back tears "it's okay" they repeated. "It’ll be okay". What do you do? A million thoughts go through your head... I got a txt from someone at work - I wanted to throw my phone at a concrete wall, my precious iPhone. Nothing mattered anymore. Nothing. It was all blank. A blur. It was surreal. You had to be there.

I made my way down to the small lake by the museum where the ducks swam and children happily tossed bread. I just sobbed. Relentlessly. For the first time in years. A dull, low, sad, endless sob that I didn't even know was inside me. My mum comforted me. Dad brought the car around, he said "this is the exact spot my mum used to take me to when I was sixteen when I found out I had skin cancer". My dad's mum, my Oma, passed away when I was only a toddler. Cancer.

What followed on from that - one of the most fucked up moments of my life - was a bittersweet journey. Gradually I built up the strength to tell people about what was going on, friends, co-workers, old uni classmates. Every time you'd getting a sinking feeling. I told my ex girlfriend - the love of my life at the time - and it made me nearly lose my shit all over again. They were all so amazing and supportive.

The sad thing is, everyone has been affected by cancer in someway or another, it's crept its way, uninvited, in to everyone's homes and lives. They say one in three people will get it at some point in their life. And we all know someone who has had it. And through all this, I've even found some close to home who have survived it - which was amazing encouragement.

I continued to work on. Being distracted really kept your mind off "what if I don't make it?" (Please, before you think "that's just negative thinking, you've got to stay positive" - try getting that type of news... you get every emotion and thought and you can't stop them in the early days.

They call it the "Emotional Rollercoaster" and it surely was). Speaking with people who have friends in similar situations really helped and going to see counsellors at the Cancer Society made you realize - I'm allowed to feel like shit. It's normal. But, it doesn't need to consume me.

In the weeks after that, the doctors were perplexed - the lab couldn't determine what kind of cancer I had. They said it looked like possibly three kinds (but they assured me it was very unlikely to have more than one kind of cancer in the body at any one time). So they sent the biopsy of one of the marble sized lymph nodes (at the time they took it out, it was twice that size) away to a cancer research lab in Boston. Yes, Boston. America. I'd always wanted to go, and now I was on my way - free trip too. Pity I couldn't take any photos.

Weeks on, we still had no word. The docs here tested me for melanoma - nothing. Lymphoma - nope. Testicular - wasn't that. They were stumped. Finally they had me have a PET CT scan - which is this amazing scan where you are injected with a radioactive glucose which then reacts with cancerous cells in the body (anywhere and at any stage, doesn't matter how early on the cells are in the development stage) and it lights them up like a Christmas tree on a CT Scan that you also have done at the same time (CT is basically a cross section look at your insides, they inject you with a special dye to show up certain things).

Here came the breakthrough... The relief from weeks of fucked up ups and downs, the after sun gel to cool a bad sunburn, the blue Powerade to ease the world's worst hangover... There was no cancer anywhere in the body apart from the neck. Instant relief. Drinks all round - my shout.

Exceptional news yes, but somehow I was convinced it was going to be horrible news, as the docs said early on "the cancer in the neck is most likely a secondary cancer from a primary source" - which is why they need the lab results and did the PET CT. See, cancer usually starts somewhere.

If it’s in the lymph nodes like mine then it's lymphoma (but they've determined it isn't) - other examples include, Lance Armstrong - testicular cancer that spread up to his lymph nodes in his neck (and unfortunately also his brain). And people with breast cancer that can spread to their lymph nodes under their arms (secondary site) and then there is those unfortunate cases of ones where it spreads to other organs.

So now, I'm here. With a baseball sized lymph node sticking out of my neck and another slightly below it the size of a squashed tennis ball. They like to push on nerves as they grow and cause pain and discomfort. The diagnosis? You tell me... at the moment they're calling it a cancerous growth. One doctor even told me earlier on, the body can sometimes flush out the primary cancer and just leave the secondary. Which makes me wonder, was I worse off before without even knowing it?

Surgery is happening soon to take out the dodgy lymph nodes and there maybe a possibility of some treatment down the line (chemo or radiation).

Through all this bullshit, the constant worrying, the overwhelming feeling of emptiness and sadness that you don't know why you're feeling it. One thing reins true... The support and love from others. I couldn't wish for a better family in the whole world and friends that really give a shit.

Even strangers - doctors, nurses, call centre people when you tell them why you need an exemption from a bill or registering a change of circumstance - the support pours through the phone like water and it's all genuine. At times through my life I lost hope in people (I know that sounds retarded) but you really see the good in them when you're facing the worst. So thanks heaps to them.

Even though I'm not at the end of my battle, I'm making headway and I’m so incredibly lucky I wasn't worse off. And I hope and pray for others who suffer from the big C - that they make headway too and can defeat this thing.

Not that this was a blog to advertise this - but the timing seems rather fitting... It's Daffodil Day this Friday. So please give generously. You can text 'Daffodil' to 2447 or check out this link to see other ways that you can donate.

If you would like to keep updated with my progress, like my page on Facebook or follow me on Twitter. 

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