[Update] Scan Results for Feb 2017

The stress and worry have eased.

The latest scan results have come back – good!! They’ve been further reductions in tumours and no new lesions. Dr A. is very happy. And so are we!

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Now top me up with some more cancer killing drugs.

I’ve got a holiday to Canada coming!

Cheers, Pirate xo

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[Update] More Scans

It’s been a while. I think we skipped the whole month of January. Sometimes, I just don’t want to think about it all, and hence the quiet since my last post before Christmas.

However, I’m back in the saddle… or the lilac gown, so to speak.

Today’s been a busy day.

First stop: S&N to give some more blood.

Second stop: Here at Cleveland X-ray for my scan. Scan day always brings feelings of worry, anxiety and fear for the whole family.

I’m sure the scan results tomorrow are going to be ok. Recent bloods have shown no reason why it won’t be. But you never know how cancer has decided to act.

Cheers, Pirate xx

 

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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

[Update] My Old Mate, Liver and the Brisbane River

This weekend was awesome – I spent quality time with my beautiful pirate wench, had dinner and drinks with friends and enjoyed being a tourist around our beautiful city, Brisbane.

Today, however, has been quite the opposite. It’s been a bit of an emotional roller coaster. To start the day, I rode the free City Hopper ferry into the CBD for a quick gym sesh before my blood test and then picked up some coffees and breakfast for my beautiful wife still snoozing in our hotel before heading back into the CBD to see a few customers before my 10am appointment with my new specialist, Dr B at Greenslopes.

Rewind to last week when I had an urgent appoint with my oncologist Dr A about my liver levels. They had been climbing steadily without any particular reason (well, besides from the fact that my liver reacted badly to the #Yervoy treatment I can now no longer have.) During this meeting, I was advised that I now needed to see a liver specialist, who just so happens to be my gastroenterologist, Dr B. Apparently, my white blood cells were going to crazy town in my liver, causing all sorts of issues and I needed to be on meds stronger than steroids (ones they give to transplant patients to avoid organ rejection) to ensure that my liver could push through this and get on the road to recovery.

Now, fast forward to today when I finally managed to see Dr B, my – now – liver specialist or hepatologist. After two blood tests last week to check how the meds were working, things weren’t going so well… levels were up to the highest they’d ever been but on the flip side, the liver was still functioning and producing the proteins, etc that it should be. My old mate, Liver, was a bit slow to react to the new meds, so by the time I saw Dr B, it wasn’t looking good.

As you can imagine, I was a bit of a mess this morning, even complaining to Dr B that she always makes me cry! My mind was taking me to places I really didn’t want to go but when you know that ever increasing liver levels could potentially mean liver failure, I was devastated. I said to Dr B that if I something was going to take me out, I didn’t want it to be my liver now. It can’t be now.

Thankfully, I do have the best doctors in the world who are so reassuring and won’t let me think too far ahead. She was most concerned about seeing the results of my blood test earlier that day, which would have given a clearer picture of how well the new meds are working.

So, after feeling pretty shit for a few hours, the latest report at 5.30pm this evening has finally shown the kind of progress we needed to see – my liver levels have decreased sufficiently to demonstrate the efficacy of the new meds. What a relief! I texted Dr A with two little words ‘Thank God!’ when the results came in. I instantly felt more positive again and it didn’t feel as if my future was so short anymore. I gained it back again.

I know many of you have praised me for my positivity throughout this whole shit-storm. It’s hard work trying to stay focused and push back the negative thoughts about stage four melanoma. Sometimes I just need a big boo-hoo and let out all the frustrations, fears and worries I have. I don’t do it publicly, not because I don’t want to show this side of me, but purely because I do want to be as positive as I can to encourage the same from you. Not to say that you can’t worry, or feel sad, or be angry about this fucking cancer inside me… but that positivity breeds positivity and it’s the only way the Pirate wants to be.