The Next Challenge

Friends and colleagues of mine who know of Steve’s advanced melanoma, often ask me how he is doing. When I tell them that he is doing really well: working full time, going to the gym daily and living life to the full, they seem surprised.

Most don’t expect that a man with advanced cancer, who undergoes treatment fortnightly, can still live a relatively normal life. Most, of course, don’t really know the kind of man my Pirate truly is.

“Fill me with the good stuff.”

This has become his mantra when he checks into Hotel Greenslopes for treatment in the ‘green chair’. Although, he admits to never being really used to having the cannula inserted for his infusion, the Pirate sees treatment day as being another step closer to NED. His positivity is inspiring to so many, but know that he does have his down days, when it all gets too much. It doesn’t last too long, but I know that having cancer is in the back of his mind at all times and sometimes, he just needs to forget about it.

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So, of course, when I told people that my Pirate was heading south on his own to complete a fitness challenge, I received incredulous looks.

Who’d have thought that just two days after treatment, the Pirate would be in Sydney competing in the Men’s Health Survival of the Fittest challenge?

I must admit that I was a little concerned when he said he wanted to give it a go. I was worried how the stress and strain of such a challenge would affect him (and if I am really honest, I didn’t want him to go without me!) However, I know my Pirate and, when he sets his mind to do something, nothing and no one can stand in his way.

So, on the last weekend of the school year, he hopped on a plane and made his way to Sydney for a weekend on his own, to forget that he was living with cancer.

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After completing 50 obstacles over 10 kilometres in under 2 hours, the Pirate’s sense of achievement had been boosted; his pride had been topped up again. He was so pleased with himself, so happy that he didn’t let cancer get in the way of achieving his goals and living the life he has always wanted.

And so was I.

xo, Wenchie

 

 

When a Man Wears a Dress

Every two months, the Pirate has to don a backless dress.

No, it isn’t for a drag queen competition; his beard would be a dead giveaway. Nor is it because he likes it; he prefers when I wear the heels.

No, the cotton little number that doesn’t-quite-do-up-at-the-back means that it’s time for medical imaging to see what the hell those tumours are doing in his liver (and to see if anymore have cropped up to scare the living daylights out of us).

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It’s a scary time for both of us (and everyone who loves the Pirate) because cancer doesn’t discriminate and has a mind of its own.  You can never really be sure whether the immunotherapy treatment is going to work. Each patient is different and their body’s response to the infusions can’t be guaranteed. Not even the experts really know how it’s all going to play out. They can only be guided by the possibilities of it all.

Immunotherapy research seems to be on the right path for melanoma sufferers. Many patients who have been on the trials have had fantastic results, Some have shown great  reductions in their tumours which has helped to prolong their lives that little bit more. Some, who because of immunotherapy, are now NED (no evidence of disease) and have a future to hang on to. However, there are others, who for whatever reason, do not respond positively to treatment at all and are living with a death sentence hanging over their heads.

We can never become complacent and take for granted the fact that the Pirate’s past two scans have shown shrinkage in all but the kidney lesion. This gives us hope that we are on to a winner but there is a small part in us that thinks “What if?” What if the drugs stop working and we never get rid of the tumours? What if we need a Plan B? Or a Plan C? Or god forbid, a Plan Z?

This is the scary part.

The unknown.

The blank space where our future lies.

Blank, not because (like everyone else) we don’t know quite what the future holds. It’s more precious than that. For people with Stage IV cancer and those who love them, the blankness signifies not knowing how much time we are going to get together.

Our dreams for the future hinge on this lifesaving treatment and what these scans show.

So, you can appreciate how waiting for the results tomorrow would be affecting the Pirate and me, his Wench. It’s an anxious time. I haven’t been quite myself and it affects me in ways that I don’t like. My anger resurfaces and the sadness hangs about like a thief. That’s when I need to remind myself to live in the now. Breathe in and out. Take one step at a time.

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If we are lucky, the scans will show everything we want them to and we’ll get to see the man in that ugly navy dress grow old and grey.

XO  The Pirate Wench

[Life along the plank] #1 – Scanxiety

I’m sitting in the lobby lounge at Greenslopes Private Hospital with the Pirate. He’s just had his latest blood test and we are waiting for his results before his appointment with Dr A in an hour or so. You’d think I’d be used to this place by now but I’m not. It still freaks me out that we are here.

Never in my wildest nightmares would I have imagined we’d be regular visitors to this place at this stage in our lives and because of the Pirate. I thought we’d dealt with this shit when he was first diagnosed in Feb 2010 with OM – ocular melanoma, his primary melanoma – and he had an enucleation of the offending left eye. But of course, life doesn’t work that way.

Since his latest diagnosis in April this year, I’ve been battling major anxiety and regardless of his most recent good news it hasn’t really eased my mind. My ability to deal with stressful siuations is impaired at present. It really does feel as if we are being made to walk the plank and the ship we are on keeps rocking back and forth with the turbulent sea and every change in result. It’s very difficult to trust that everything is going to be alright when we don’t really know – just as we can’t predict the sea, we can’t predict the outcome of cancer.

Yet, my brain and my heart still hurt with the ‘what ifs’ no matter how many times I remind them to cease their constant hum of melancholy. It’s a struggle but I am trying really hard to stay as positive as I can with a head full of fear and anxiety. It’s no use thinking too far ahead because there is no point. I’m a born worrier. I can’t change who I am. I just need to keep breathing and hold my balance on the plank as steady as I can.

xo Pirate’s Wench

Blog Catch-up

I’ll be updating the blog over the next few nights to keep those non-Facebookians in the loop. The Pirate tends to go straight to the Book when posting updates but I know there are quite a few of you out there in social media silence who need updates here.

So if you see things cropping up that look like old news, then it probably is. If I am clever enough, I’ll back date them so it doesn’t seem so weird.

xo Pirate Wench

Immortalised Forever

When we first learned of Steve’s diagnosis, we jumped straight online to read everything we could about stage IV ocular melanoma affecting the liver. Sadly, everything we discovered was morbid and terrifying – hopeless prognoses from academic sources based on unsuccessful treatments with very few personal blogs detailing the journey of ‘survivors’. We were heart-broken, desperate for any skerrick of information that we could find to help us find ways to not only fight this cancer but to fight off the fear that this was the end.

It was then that I knew I had to start this blog, Walking the Plank, as not only a way of getting the story out there but to connect with others going through treatment of this insidious disease and to let them know that they are not alone. We needed to be a source of information, a legacy of immunotherapy immortalised forever in our words. It has also become a record of Steve’s journey, to remind us of how precious life is and what we’ve done for our future.

Now, for those of you who know me, you’ll know that I have been blogging for a long time. It wasn’t a stretch to begin writing about this but I did know that I wanted to do something special for Steve. It wasn’t just my story to share anymore.. it was his too. So, I started to think about what would make this blog one of a kind and to truly personalise it for my Pirate.

I decided that I needed a caricature of a pirate, one that looked just like Steve. However, a thorough internet search ended in fruitless frustration and I began to wonder what I could do instead.

That was when I enlisted the assistance of our dear friend in England, Chris Philp. A talented artist, Chris was the first person I thought of to help me with my idea. He listened to my suggestion and jumped on board with my idea, telling me that he doesn’t do caricatures but he does paint. I trusted his talent and of course, I need not have worried. Chris doesn’t do things by halves and several weeks later I opened my email to find this masterpiece in my inbox:

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For those who know Steve, you’ll recognise him instantly. Chris did such a brilliant job, that when I finally unveiled the picture to the pirate himself, tears welled in his eyes… and mine.

Thank you, Chris. You have put a smile on this Pirate Family at such a sad time in our lives.

My Pirate Steve immortalised forever on canvas, and now soon-to-be in the design of our blog. Watch this space!

 

x Pirate Wench