On Monday I had a follow up appointment at the Royal Melbourne Hospital to get the results of my MRI. GOOD NEWS! My tumour is stable and has even slightly reduced. Considering they said it could look bigger at this scan we are VERY relieved, to say the least. It was very daunting heading in there, you always imagine the worst. It was such a relief to hear the positive news.
We then talked about my chemotherapy treatment, this commences in the coming weeks. 2 x oral tablets, taken when you first wake in the morning. Taken for 5 days continuously then you have a break for 23 days. Then start again. I have 12 rounds (aka 1 year). In between each cycle I have bloods taken & appointment with the Oncologist to follow up and ensure all is ok.
They’re hoping I should tolerate the treatment well considering how I went with radiation, but again it’s an unknown and only time will tell. Main side effects are nausea, vomiting & fatigue. Fingers crossed I will be ok. I never got any of that pregnant, although I know this is completely different, but maybe I’ll get lucky again. Also the side effects are cumulative so towards the end of 12mths I could be the worst. But again I don’t really have much of an option. So bring it on!!
After the Royal Melbourne we went to the airport and flew to Sydney for an appointment with none other than Charlie Teo – one of Australias top Neurosurgeons. I went to see him for a number of reasons, first & foremost a second opinion. Why not get this from one of the best. Charlie is considered a bit of a “cowboy” in the industry and there’s a few that don’t like him as he will take risks that others won’t and he goes against a lot of medical literature. We wanted to find out what he thought on my situation and just see what could he do? Considering I’d just had my last scan it was perfect timing.
After waiting an hour over our scheduled appointment time (nervously), we eventually were called in. I had a bit of a bitter taste in my mouth when we first walked in due to the extreme wait. Doctors! So bad.
He was actually a nice guy in the end. He redeemed himself. Charlie advised he can do surgery but he couldn’t remove the whole thing due to the complexity of tumour. When we asked what could he remove? He advised he could remove around 70% (bulk of the tumour) without any major risks, besides the usual risks associated with surgery. And I could fly home the following day 😳. Geeeeez….I think I’d wait a few days all the same. He does minimally invasive surgery (key hole) so it’s a supposedly very easy recovery and should be much better than the last. Thankfully!
However it’s a $100k surgery cost. So not the cheapest but when it’s your life you’re talking about you’d pay anything right?!
The only problem is that IF we go ahead with the surgery, this unfortunately alone is not my cure. It’s likely what he removes may grow back in years to come, but it might just buy me some time in which a new treatment could be on the market by then. Unfortunately having a malignant brain tumour that cannot fully be resected isn’t ideal. My original understanding of my “golf ball” sized tumour was incorrect. And when they did the first surgery turns out it was only a biopsy taken along with a cyst. So I’ve still got a full head of this asshole.
It’s absolutely bizarre having a disease like this yet not feeling any different nor sick.
So I’ve now got two options, I start Chemo Monday or I do the surgery and then start Chemo ASAP following. My Oncologist has advised he wouldn’t recommend surgery now as he believes it wouldn’t make a difference. But Charlie’s thoughts (and I tend to agree). If they remove 70% and then treat remaining 30% with chemo surely it would have better effect on the tumour vs. chemo on the full 100%. Charlie continually mentioned his methods don’t have any Medical Literature backing, this the reason he’s considered “radical” or a “cowboy”. But he’s willing to have a go and do something others won’t.
It doesn’t matter when I start the chemo as long as it’s within this next month.
Now the decision lies with us… I’ve got another appointment with a surgeon at Royal Melb hopefully this week so I can finalise my decision. If I decide to go ahead with Charlie however, I also need to confirm with them that I can continue my care there – Chemo.
After we left Prince of Whales Private in Randwick it was a mad dash in the uber to Sydney airport. After trying to find our boarding passes on our phones (I swore I checked us in!) and running through to the gate to get the said boarding passes printed. Of course we get stopped at security for a “random selection” for bomb/explosives test and of course they make me remove my hat yet again (oh the bald head shame 😔) and stand there while they ever so slowly swiped the inside of my hat. No matter how many times we said we’re about to miss our flight. Sean was ready to punch the guy. He was such a a-hole!
Finally we got through and ran to the gate, just minutes to spare. They then told me we didn’t check in online and the passenger list had already gone to the captain. I had to then pull on the “brain cancer card” and we were put on the plane no worries. Thankfully!
Happy snap of Charlie & I, figured I needed one for the blog. Plus I had to make the $800 consult fee worth it. Haha
Love Don xx