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.

CPET issues and successes

So I went in on Friday for a CPET. Basically, it’s a fitness test. I cycle on a bike, they see if my heart can withstand surgery. Sounds simple enough.

I went in and they checked my haemoglobin and it was too low to do the test.

Wait, let’s backtrack a bit. I’m missing important details. First a nice, young, good looking man came out and took my height and weight. How much do I weigh? Oh wait, just let me take off my shoes. Jumper. Scarf. Beanie… Gotta give myself the best chance I can, hey! He immediately picked my accent. Heyyy that doesn’t happen often! Of course one of the exercise physios is from Adelaide. She’s currently back there for a holiday.

Then I waited a bit in the waiting room and another nice, young, good looking man came and got me. This was going to be just fine by me.

We went in and they asked me a few questions. Then they pricked my finger to check my haemoglobin. I’ve had my finger pricked to check my blood sugar before and that’s fine but this hurt!! I came up in a bruise quite quickly. Haemoglobin: 79. Too low.

Nice guy #2 called the doctors to check, meanwhile nice guy #1 went on with the breathing test. I had to breathe into a tube and pretend I was blowing out birthday candles – big huff at first and then expel the rest to blow out the rest. I always appreciate a good analogy. A picture of a cake came up on the screen and I blew out the candles! Fun! It even came up and said ‘good job!’ on the screen. Turns out my lungs are good.

Nice guy #2 (he was the exercise physio) came back and said I could get a transfusion next week and they could retest me next Friday. Next Friday to find out if I was going to go into hospital on Sunday??? I mentioned that my parents were waiting on this ok to get tickets to come over. Next Friday was very close and not very helpful.

‘Let me see what I can do’ he said and he immediately called back to champion my cause. He explained his clinic days, he pushed for me to get the transfusion that afternoon, he even offered a whole lot of alternatives to try and make it all work. What an angel, what a hero. I thanked him profusely.

I managed to get in for the transfusion on the Friday evening, and the new CPET was scheduled for the Monday. Slightly later than planned but not an absolute crisis.

—— Fast Forward to Monday ——

Most importantly, it snowed on and off for most of the day, which was I always love. Snow alternating with sun. Perfection. Must be a good sign.

It was nice to see them both again. This time my haemoglobin was up to 93. Still low but we cracked on regardless. Also the finger pricking hurt a lot less today! Weird!

First I was hooked up to an ECG to monitor my heart. Then, a sleeve to measure my blood pressure. Next, a little sleeve on my finger (sleeve may not be the right word there) to check my blood oxygen levels and heart rate. I got on the bike and sat there while they hooked everything up. Lastly, a mask on my face to monitor my breathing to check how much of the oxygen I take in and expel.

The guys talked me through everything and explained it all as we went which I loved. Once I was all connected, we started. I had to keep my legs turning at a constant pace – 60, but Jen, ever the overachiever, kept it at 70. It started off easy, with no resistance, then the resistance started to go up. Basically, I was on a never ending hill, and I had to go as far as I could. 10-15 minutes. I have no idea how long I went for.

MY LEGS HURT! Pretty much right from the beginning! I haven’t used them much for a long time. By the end, I was getting pretty puffed and my legs were burning.

‘One more minute’ nice guy #2 said. 1 more minute. Right, I can do that. So I pushed for a while. Then I got pretty tired. ’20 seconds’ he said. Then I swear about 20 seconds later, ’10 more seconds’. Cheeky.

For the last minute I was breathing heavy, and it was disconcerting having to breathe through a tube and not get fresh air. I was actually feeling a bit claustrophobic by it! Not actually panicking but a bit of the feeling that I got in the MRI of not being able to breathe. But I was ok.

Eventually I felt like I was about to crash, and he said to slow my legs, they were taking off the resistance. He thanked me for pushing that last bit and going a bit longer. He said it helped them to get better results.


I recovered quite quickly after.

So the results of this test help to decide if I’m fit enough from surgery for next Monday. Hoping I get the results tomorrow!

Thanks David and Nick. I think I remembered their names correctly… What great guys.

Surgeon meeting take 2

So I met with the surgeon today. We’re aiming for surgery on the 5th of March. That’s soon. When will I find out if that’s going ahead? Hopefully Tuesday. 5 days before I would be going to hospital. Plenty of time for my parents to book tickets to come over, right?

Found out I’ll be losing some of my right nostril in the surgery. He said he’ll try to keep it minimal. So that’s wonderful… Permanent damage. Hopefully only a small bit (still not good), but it’s possible I’ll wake up with a huge chunk of my nose gone. And that’s not like… Fixable.

Also losing some of my nose on the inside, all the way up to my eye socket. He’ll build that back though.

Found out there’s 50% chance of him having to stop the surgery half way through and leave me in hospital for 4 weeks with a big hole in my face before doing the second half. (Though I don’t know if that stat is correct because he was angry at us for asking questions so was stretching the truth on a few things to try and scare me)

Found out I’ll need a feeding tube for quite a while. Weeks? Months? And I’ll probably need a tracheostomy during surgery. 70% likely. No talking for 3-5 days post surgery. I’m sure that will be bliss for everyone around me at least!

Also it’s likely that the bone for surgery will come from my shoulder. Which I think is better than leg. Oh yeah and if you were wondering, it wasn’t my choice to make whether it’s bone or prosthetic. Prosthetic is only if you can’t bone for some reason.

Here I was going into this meeting thinking there couldn’t be much more for them to drop on me. Ha. My mistake.

I did also find out that while a year to wait for teeth is standard, it’s possible to start looking at it after 6 months depending on recovery. So there’s some hope.

A thousand thanks to my girl Shiri for coming with me to the appointments today. And for bringing me a sandwich! Oh the notes we wrote. Well mainly her. Because I can’t write, remember?

When PET scans turn into surprise MRIs…

I’ve had PET Scans before, all good. They’re not a problem except that it’s always freezing. I had one today, so I went in and they injected me with the radioactive substance and I had to sit there for an hour without using my phone or doing anything really. I listened to an audio book.

After the time had passed, they took me in to the machine and I lay down. Then they started clipping me in and weighing me down by putting all these heavy cameras on my chest which I thought was weird, I’d never had that before. Then they wedged foam around my head so I couldn’t move it and clamped the cage over my face and I realised for some reason they were putting me back in the MRI machine.

I panicked. I couldn’t move, I couldn’t breathe, I started burning up. Why did no one tell me this PET Scan was actually an MRI? I immediately started trying to break out but I was weighed down. Instead of letting me out, he told me that it was all fine because he had a little mirror he would strap on my head so i could see out through a tiny rectangle. He then held that in front of my face and i couldn’t move or breathe or see anymore either.

I was hyperventilating, tears streaming down my face, trying to get out, they did take the cage off my face but they wouldn’t let me up. Instead they put a straw in my water and told me to drink. I choked on it.

Eventually they let me out. ‘I didn’t know it was going to be an MRI’, I told them. PET Scans had never been in an MRI machine before, why was it suddenly now? ‘Oh it’s a PET-MR’ they said like that should mean something to me.

Then I stressed out even more because this was a scan I needed to get done and I didn’t know how I was going to do it. But as it turns out, I didn’t need the MR part of the scan. We went upstairs and they put me on the PET-CT machine that I had used the previous two times. Apparently that’s fine.

It took me a good 10 minutes to calm down after the MRI scare. And any time I thought about it during the day I had to try and hold back tears.

I know it sounds silly. I had a panic attack just from being near an MRI machine. But it really terrified me. I couldn’t take it. According to the guy, it happens to one in five people. That’s more than I would have expected. He then told me he had a moment in the machine once and it’s tight but nothing to worry about. Great, thanks. This machine was even worse too because the far end was up against a wall. Not that it makes any difference once you’re in there, but knowing you’re going head first into a pringles container is even more scary than going into a toilet roll.

Yes, I think we can confirm I have a problem with MRIs.

Reiki road test

Ok, as promised, it is time to report back on my experience with…


Reiki was basically exactly what I was expecting. But I promise I really did go with an open mind.

I went in and was asked to lie down on the bed after a brief introduction. There was some lavender oil diffusing in the room, which was nice, and the Reiki man put some calming music on. He told me to close my eyes, which I did. He started by placing a hand on my shoulder and my elbow and held them there for a bit. Then he moved to my elbow and knee. Then knee and foot, then both feet. Yes, you guessed it, he was moving around me, anticlockwise (which stressed me out a bit, surely you’d start clockwise!), putting his hand on various parts of me, pausing and moving on…

When he got back up around to my head he put a hand on my forehead which was a bit weird. Something about the forehead feels far too intimate for a random. He then went around me again. And again. Occasionally would touch my elbow with one hand then hover his other hand over my hands. Or over my knees…

The one good thing about all this is that it was freezing, and his hands were very warm. He would also occasionally do some weird sweeping motions off to the side, kind of like he was trying to conjure something with an abracadabra routine. Yes, I was peaking when I thought he wasn’t watching. Though he had said I could open my eyes at any point, and also to tell him to stop if it became too much… not sure what was meant to become too much.

Half an hour later it was over…


‘Woah, that would have been weird, hey?’ He said to me when I opened my eyes. ‘First time of Reiki, must have been wondering what this crazy person was doing.’ I mean… you said the ‘c’ word, mate, not me. He kept going on about how it was weird and didn’t seem to do anything… I think he was trying to put words in my mouth – maybe he was used to people saying these sorts of things after? I wasn’t sure but it seemed odd.

But yeah, it was ridiculous. Look, having half an hour to lie down and relax without sleeping, and just try to meditate a bit was nice I guess, so yeah you might feel more relaxed after because of that, but that’s got nothing to do with the Reiki. Though it is easier to have a clear mind if you have something to focus on, like if a strange man is touching your shoulder. Personally I just prefer to use the Headspace app…

In the post-session chat, he said ‘the only thing to note is that you might find yourself being more emotional today. So if you do  get emotional, just try to remember it’s to be expected.’ Emotional? Why? Are people not used to being alone with their thoughts and they bring up some emotions? Weird.

I really don’t get it. There’s not even anything to hook people with. There’s no confirmation bias like there is with Astrology (or the witch doctor I wrote about last week). I honestly cannot understand how anyone can buy into this…

I still have three more sessions and not sure what to do with them. Maybe relaxation? I can see the sense in that at least, and it doesn’t pretend to be anything it’s not.

But I am glad I tried it. It was free. No regrets, everything once. And I got to tell you all about it!

MRI Sundays

So it turns out I now have a problem with MRIs.

I guess I’m feeling a bit fragile at the moment. A bit emotionally unstable. In a big way because I’ve just found out I’ve got to cancel all plans for the next year or so. But also the fact that I can’t use my hands is getting to me. I struggle to tie shoelaces, I can no longer wear anything with buttons, even jeans are out. I can’t hold a pen or write… And there are a few other things that are all adding to the stress. Yeah I’ve got a lot on my plate to deal with, emotionally. And still recovering from my last chemo too.

Anyway. I had to go in for an MRI today. On a Sunday. Poor imaging people working on a Sunday. I usually quite enjoy MRIs. But this time I almost freaked out immediately when they first put me in. My heart started racing, I felt really hot, I felt like I was boxed in. I honestly felt like I had to break out. Hey claustrophobia, that’s what you feel like! I’ve almost felt it once before back in high school when we went caving and did one particular cave that was a tight passage going down to the cave and back up. B45 I think was its name. So unassuming. I didn’t have a problem then but I remember being on the cusp of thinking it could go either way.

I almost pushed the panic button early on, I really thought I couldn’t make it, but I managed to calm myself down when the MRI started. I never know whether it’s better to keep your eyes closed or look out through the little periscope peep hole. But I did some deep breathing and tried to stay calm. It worked for a while but then I started to stress out again. The MRI operator asked over the speaker if I was ok. I said I was stressing out a bit and they said they had noticed a bit of movement on the last scan.

They came in and pulled me back out for a bit. I had to stay in the brace and hold still but at least I could breathe for a sec. Deep breath in, deep breath out. Still feeling boxed in, wasn’t sure how I would deal with the rest of it. Still 15mins left.

One of the imaging girls offered to hold my hand for the last bit. What an absolutely beautiful person. I thought it seemed as bit silly to need it but I took her up on her offer. She said she had done it before, it wasn’t weird or abnormal. So we held hands and I went back in. Knowing the outside world was just there made a huge difference, it felt like I wasn’t actually that far away.

The other added, though unintended, positive of this hand holding is that I was concentrating so hard in not squeezing the hell out of her hand that it helped to distract me from the tiny tube I was confined in. One of the other bonuses of this peripheral neuropathy is that my hands have a mind of their own at the moment. They move around on their own and clench themselves of their own accord. So they were cramping up and probably clenching super hard but I couldn’t feel how hard they were holding, so I was concentrating pretty hard on that.

It also helped that the other girl who was doing the scanning from the other room gave me updates on how much longer I had to go. They also came in 5 minutes from the end to inject me with some dye so that was a nice little break too. Not to mention they turned the radio on and between the thumps of the scans, I heard ‘I’m Only Sleeping’ by The Beatles serenading me.

I got through it fine, but I don’t know if I would have if the angel of an imager hadn’t come to my rescue. And they were both so lovely and patient. They said to try and bring someone along with me next time just in case. I don’t know if it was just this time or if I’ve developed a problem but it might be a good idea to take a helping hand along next time – anyone feel like having their hand squeezed off for a while?

I wasn’t lying when I said the hard bit was yet to come

I had to go in today for photos so they could build some 3D models of my jaw for surgery. Super cool.

The photo guy was really nice. Though he confirmed a few of my worries to be true.

The surgery recovery will be huge. Really huge.

It will be at least a year before I have any teeth. Just a nice gummy gap in the meantime. Talking will be difficult. Living will be difficult.

What do you do with that information?

I went and got coffee. Seemed a good place to start…