“You look so good” never came with so many caveats before my diagnosis. Before I would say ‘thank you’ and feel pretty good that I had managed to pull myself together nicely that day. But now it comes with an undercurrent of ‘for someone with cancer’. Even if I am actually looking good that day you’re never sure if it’s real or perceived in the face of the disease.
But that’s not to say we survivors don’t want to hear it. Compliments are always welcome in any walk of life. But what I do want you to know is that, looks can be deceiving. The outside looks good but inside I’m hurting. Physically and emotionally. At the moment it’s absolutely more emotional.
And that’s the scary part. People that you don’t see all the time, when they do see me think ‘wow she looks great’ and honestly, I feel pretty good most days. But that’s not to discount the morning nausea, coupled with at least one visit with the porcelain throne to vomit, almost every day. And just being able to feel my liver is not a comfortable feeling. Couple this with the knowledge that inside my body is eating away at itself and I may not be around to see my daughter finish primary school is just devastating.
But for all the crying I do in the shower I try not to let it get to me too much because there is absolutely nothing I can do to stop it. All I can do is keep living so that I enjoy what time I do have and create as many happy memories with my family and friends.
And for some reason I’m feeling rather vocal right now so whilst I’m at it something that has been bothering me for quite a while now is how people respond to finding out that someone they are close to has cancer. I understand that it’s a hard diagnosis to hear. I’ve heard that some survivors have actually lost friends because of their diagnosis and that is just heartbreaking. I haven’t had that, but I have harbored some feelings of real disappointment following my diagnosis. People that I know care for me, who haven’t reached out at all, but then I know they are reading this blog and ‘saying’ I’m in their thoughts. So I want to put this out there. If someone you know gets a cancer diagnosis…reach out!!! A card, flowers, email, text, phone call. Something! A simple ‘hey, you’re in my thoughts’ goes a long way. Otherwise you’re just stalking and gossiping behind their backs.
Phew. So with all that out there, we now reach another turning point. I scanned last week to see how the Lonsurf regime was working…quick answer, it wasn’t. I’m so fed up with nothing working. Every scan is the same, “no change to slight increases across all tumors”. However slight means increases from 3.6cm to 4.5cm and that sounds huge to me.
I met with the Dr yesterday and we have decided to switch it up again (for those keeping up this is regime number 5) and add in an EGFR inhibitor to my previously used drugs of irinotecan and Avastin. https://www.erbitux.com/understand-erbitux/mcrc.html
Ideally this will work to continue to keep me stable and I can cycle through the IV treatments I originally started with again (with the addition of erbitux). The side effect to this little beauty is a rash. Oh joy. So as I told the Dr ‘you’re gonna turn me into a monster right before I go back to Australia’ gee thanks Doc. And in true cancer form there is always some cruel joke to whatever drug you’re on (severe diarrhea, rash, peeling hands and feet, neuropathy and extreme cold sensitivities). It just doesn’t end. But he’s prescribing steroids to control the rash a bit but ultimately you want the rash because it means the drug is working (funny how that works huh). So I guess cover up makeup lessons may be in my future. Or I’ll just deal with it. It could be worse right.
Anyhow, I start that regime next week (it’s going to be an 8 hour day going forward because the one drug takes at least 4 hours to infuse and 6 hours the first time). Of course because I’m always running by the seat of my pants I’ll be doing that on Wednesday and then I leave bright and early Thursday morning to go to Costa Rica so I hope the side effects aren’t too bad!!! And when i get back it’s going to be time to plan my flights to Australia. It’s going to be one hell of a Christmas party this year … get ready 🎇🌟
I’ll leave you all with this tear jerker of a video the super talented Noelle Soroka prepared for us following the photo session. It makes my heart soar to know Lyla and Jay can look at this anytime they like after I’m gone and see how much love we share ❤️