A note to you all

To all my sarcoma friends who have found their way here, it seriously means so much that you’re reading. You’re all fantastic and inspiring and even if the most we’ve done is smiled and said hi as we’ve passed in the corridor, you’re my family and we’re in this together! I think the world of you all. And even just a smile between us can say so much.

Not even just my sarcoma people, to anyone who I’ve come across in ambi-care or The Cotton Rooms, it’s always nice to see you around. We may be getting different treatments for different things, but we’re all turning up to the same place and sharing an experience.

I’ll even extend it. To anyone else here who has or has had osteosarcoma… Even if we’ve never met. We’re in a club. Not one we would have chosen, but since we’ve found ourselves in it, at least we’re all in it together. That’s special. That means something.

Should I extend it further? Anyone here who has had cancer at all. We might not be able to bond over treatment, we might have had entirely different experiences. But we’re also in a club. A far less exclusive club than the sarcoma one these days, but I’m sure you’ve got your own more exclusive clubs too.

And then of course I can’t fail to mention the support crew. I.e. Everyone else. If you can, please stay only as honorary members to these clubs. But know if you ever need to join one, we’re here for you. I will try my very best to support you all as you have supported me.

Thank you for being here, thank you for still reading, it really means the world to me.

Another of those reflective moments

It is always useful to remember in life that there is always someone worse off than you. Always someone who has it worse.

Not in an ‘I’m glad there’s someone suffering worse than me’ kind of way. I mean I don’t want anyone to suffer. Especially not from anything really bad. It’s hard to hear of people struggling. But there is always someone who has it worse. Probably many people.

Bit of a depressing thing to think about but I come across people who lose limbs to their sarcomas, or who find out their chemo isn’t working, or who have terminal cancer, or who have had to spend more time in the hospital, or who have chemo for longer, or who are given very low chances of beating their cancer. In terms of hectic-ness of chemo, us osteosarcoma people have some of the most extensive chemo, so we mostly win on that, but still there are positives to be found. It’s also a bit of a badge of honour! Most people are shocked when we explain our chemo schedule.

And that’s just in the cancer realm! That’s not even delving into chronic illnesses like MS, or even more obscure illnesses/diseases that are rare and no one knows much about.

You can really get bogged down if you start to think about all the people who are suffering in the world. So don’t dwell. But just remember although things seem bad sometimes, it definitely could always be worse!! Though that’s not to say lesser problems and worries than those deemed ‘most severe’ aren’t worrying or legitimate. This is not to discredit the ‘every day’ sort of problems that bother us.

Time and time again I am reminded of how lucky I am. Not only because of the fact that really everything is going smoothly so far in the grand scheme of things, but also because of all support I have – how incredibly wonderful, understanding and supportive work has been (don’t know what I would do without their amazing attitude through all of this), and how great all my friends, nurses, acquaintances, friends of friends, family of friends, friends of family, Twitter and Instagram followers etc. have been. How my parents have come over to visit and are coming back for the surgery! Wow.

Everyone is ‘stronger’ than they think. I’m not particularly strong, I’m just handling things as best I can. As everyone is. Sometimes you have some days where it all seems to get the better of you. And that’s not ‘weak’, and you don’t have to try and be ‘strong’ all the time. Just acknowledge the bad days, accept them for what they are, feel sorry for yourself for a bit, have a bit of a whine, then try to pick yourself up and remember that the worst times will be followed by better times in some way, shape or form. Be determined to make the most of what you’ve got.

Much love to everyone, and I hope you’re all going ok with everything you’re dealing with. Life can be funny at times, but it’s good. I really like it, I think I’ll keep it around.

Thoughts.

I’ve been feeling a little bit sorry for myself this week. I accidentally came across some statistics about 5-year survival rates for people diagnosed with sarcoma (I had avoided these sorts of stats), and they’re not exactly inspiring.

But I know these sorts of stats are not useful. They’re not specific to me, they don’t mean anything. All that is important is that my sarcoma is treatable, and that if the surgeon can manage to get it all out, I’ve got a half decent chance of beating it, hopefully for many more years than 5 (in fact I intend on never coming across cancer again).

But I can’t help it playing out in the back of my mind. Especially with the knowledge that I most probably can’t finish my chemo and the knowledge that sarcomas do seem to like repeat performances.

But I’m good at rationalising thoughts and emotions and dealing with them, and the last thing I’m going to do is let something like that bother me!

But hey, guys, let’s stop doing things that make us unhappy. Let’s stop putting off things we want to do, or have been meaning to do. Let’s stop making excuses for not doing things. Let’s stop saying we don’t have enough time – we can make time for things that matter. Let’s stop wasting time on things that don’t fulfill us. Let’s stop caring what everyone thinks. Let’s stop worrying about things that really don’t matter. Let’s let go of negative thoughts. Let’s tell people we love them. Let’s forgive people for things they’ve done. Let’s forgive ourselves for things we’ve done. Let’s take opportunities. Let’s watch sunrises. Let’s just let go and live, shall we?

I’m more determined than ever to make the most of every moment (am I sounding like a cliché? Cringe). I challenge you all to do the same!

Monday thoughts and childhood memories

I grew up playing music, singing, performing. Weekends were often spent driving to various performances or competitions around Sydney. Eisteddfod weekend was always hectic, sometimes you’d be lucky and at least have the singing and piano ones on different weekends but sometimes they overlapped.

But even without the overlap it was still pretty hectic. In a weekend I could have 4 different singing ones and some would need costumes.

One year I had to be little Cosette from Les Mis (‘there is a castle on a cloud’) dressed in her almost homeless street urchin dress. Then turn around the next day and become Pocahontas (‘can you paint with all the colours of the wind’), the powerful Indian princess with her authentic native American dress.

Wow.

So for this memorable outfit change, mum made basically a reversible calico sac. One one side it looked like a Tunic which we grubbed up and made look like the little Cosette. Then once that was over, we went home and turned it inside out. She left big seams hidden on the inside of Cosette dress so we could cut and fray it for Pocahontas. Painted up with earthy browns and some reds and blues and teemed with a head tie with some feathers attached that we found around the streets…

Both looked amazing and so professional. She has a lot of talents my mum, one is just knowing what the task is, conceptualising it, and carrying it out well no matter what skill is needed. She can pretty much do anything. She’s very versatile and damn good.

Anyway, I think there’s a point to this. There must be an analogy hidden in here somewhere. Always be adaptable and flexible like that dress (or my mum for that matter). My goodness some crazy things happen in life. We’ve all seen it, we’ll all see a lot more of it. And you’re going to be far better off if you’re already mentally prepared to just take any new advancement and work out how you’ll make it work for you. Yeah it might seem pretty bad at the time. But you get that brain working and thinking and you turn whatever bad thing you’ve got into something that you can make good. Try it. Try varying your Mindset when something happens that you don’t like. Change isn’t always bad, even if it often seems it at first (like my pharmacist leaving, right? I’ve been told his replacement is taller. He’d better be awesome).

As Victor Frankl wrote in his book ‘Man’s search for Meaning’, ‘The last of the human freedoms is to choose ones attitude in any given set of circumstances.’

So hold onto that. It’s your right. And make the right choice.

Much love.

A somewhat disjointed update…

I looked at my eye lashes this morning… there appears to be a bit of a gap in my lower set on my left eye. Well then. I suppose they’ve had enough and are going on holiday. My left eye is also really swollen at the moment and itchy and a bit gross. So really I look a bit odd. Eyebrows are still going strong though! Thanks guys!

My ‘good week’ is nearing its end and it doesn’t really feel like it’s started yet. Lots of coughing, being tired and feeling a bit shit really. Plus the eye thing. I had to work from home yesterday because I wasn’t feeling physically up to going in. But I have managed two pub quizzes this week and I’ve got some nice things planned this weekend including seeing The Dears on Saturday night (their album ‘No Cities Left’ is great), bottomless brunch with a friend, and Mail Rail (riding on the old abandoned underground railway that used to be used to carry the mail).

Should be fun!

I was doing some thinking this morning, and you know what’s really weird?
Cancer is created by your own body. It’s your own cells deciding they need to rapidly multiply.
I had never really thought about it before this whole adventure started.
I always thought my body was out to get me but I didn’t realise it was in such a big way!

I made a new friend this morning. I had to go in to get my pre-chemo bloods taken and my PICC line dressing changed. She told me my hair (well…head) looked great and told me her cancer story. Breast cancer 5 years ago and now it’s come back and spread to a lot of different places. Sounds like she’s had a difficult time. Do they not monitor her closely to make sure they catch it as soon as it comes back? Or is it just luck that you can catch it before it spreads everywhere? Gee, cancer can be scary. Mine certainly isn’t. But she was doing ok. She referred to her cancer as a parasite. And I’ve heard that a lot. ‘Parasite’, ‘intruder’, similar such words. But it’s not, it’s just your body thinking it’s helping but actually accidentally trying to kill you. How is it that they can get it so right and yet so wrong?

I found out today that I have to stay in the alternative hotel next week, as well as isolation in the ward, and have to have three days of negative swabs to rule out me having a cold. And if they’re not negative (I’m a little worried) then I’m in there the next week too. No bench space at all to even put my jug down in the bathroom… who knows how I’m going to do my pH testing…

But it’s all just an adventure, isn’t it?

I’ll be particularly grateful for The Cotton Rooms when I finally get back there.