WHAT A WEEK!!!!! Teepees, moonlight cinemas, first days at school, WRONG MEDS.....WHAT???? SHAVED MY HEAD!!

Australia Day!!! (Friday)
Day 2 of after treatment recovery

Today I woke up feeling increased sensitivity on my scalp...... I just need to sleep with my head in my hand. But I also woke up snuggling Harper under a pink feather boa, fairy light teepee!!! (She snuck in over night..... And I loved it!!!)
So nice waking up snuggling with my dolly!

Tough getting up from the floor though these days ..... Testing my balance!!!

We woke up to an indulgent breakky of blueberry pancakes and juice that daddy made us....... Naughty but nice!!!

Later Josette from Teeparty2u came to clear up....these ladies are incredible, make sure you consider them for your next party... Nothing more fun then waking up in a teepee with your loved ones 💕

We had a resourceful day, we picked 2 gorgeous dresses for Tahlia and Kiara, for Kylie's wedding in March..... Yes sense of achievement!!! They look good, they fit and they were on SALE!!!! Yes on all accounts. Also Tahlia need her eyes tested, all good but she could get bigger glasses for her head.

Nana Larraine than came over for a visit, was lovely to see her. After that we watched "cheaper by the dozen" a bit of a snoozer but ok!
Then it was off the Gelati Messina for dinner!
Because why not have ice cream for dinner in chapel street???

Then we had 2 gorgeous visitors, Gill and Xander came past with my favourite vegetable lentil soup and a gorgeous arrangement of roses...... Seriously spoilt. Was so lovely to catch up....... Love her xx

Last night I also got a photo from Bev who sent me a pic of a lit candle from Lourdes that she has been burning for me everyday since I started radiation!!!!

As previously mentioned, I'm not particularly spiritual, but I get my strength and positivity, faith or belief that I'm going to be ok from everyone else. People have such strong conviction about healing, prayer, oils, crystals, God, medallions etc and I have them all on my bedside table. My love for all of you, and the outpouring of love and generosity is what comes through those objects...... It is that which gives me strength!!

Anne Maree from highschool (finished highschool 1991) started a prayer group where anyone (including people around the world are praying for me at exactly 10pm every night!!!) This just blows me away. To be in so many peoples thoughts at the same time is humbling and astonishing. Thank you for your thoughtfulness Anne Maree xx

Day 3 of after treatment recovery (Saturday)
Yep scalp's sore, both ears are tender and my chest feels like I've been bashed a bit.

On a happier note I think I slept a little better. I feel asleep from 12:30am till about 2am then was awake for 2 hrs and managed to sleep from about 4-7:30am
That's amazing for me!!!

Today Jen popped around bearing yummy treats and lunch!!! We've been very spoilt with people cooking for us and the variety!!!!

So nice to see her and catch up.

Kane wanted to talk to me about these news cancer drugs that I'm going to start tomorrow. He's concerned because he's been doing lots of reading and it seems it's effect for people with ALK mutation, I have EGFR mutation so we don't understand how it's supposed to work for me. I also belong to an EGFR lung cancer support group and they're all baffled as well. I'm sure there's a reasonable explanation ....Well I hope to goodness there is!
Another freaky note about this drug Alectibnib is that just this month it was not approved on the PBS and would have cost $14k/month now let's just hope it's the right drug for me!!!

So that afternoon it was sleepy times as we have to go to the botanical gardens to watch "Jumanji"
It seriously was the best movie to watch in the outdoor. Kano and the kids had never been..... So we did it in style, we went to Gold Grass were you get your own bean bag, pillow and blanket. Was perfect, 33 degree day and the night didn't cool down too much either.

It was a strange walk in, I'm still steady on my feet but feel I need to hold Kano's hand as security in case I don't stack it. It's just another reminder that I'm not well. But then I quickly remind myself...... It's 8pm, I'm out walking though the botanical gardens with my amazing family, I'm walking, talking just my average self really and rocking some lippy of course 👄
I'm doing exceptionally well, if I have to hold my husbands hand to guide me....... Bonus!!
I was worried that the story line might go over Harper's head but my clever cookie got it and probably enjoyed it the most out of everyone..... She's so animated!!

We were one of the last to leave as we're just enjoying the environment.
We ended up getting home at about 12:30am and everyone was still pumped except for Harper who crashed in the car!!

We all said we loved it and is something we will definitely do again!!!

#moonlightcinema #familytime #creatingmemories #kickitsass #celebratelife💪🏾🦁💕👠

Day 4 of after radiation treatment (Sunday)
WOAH!!!! My head!!!
I'm dizzy, really dizzy and there's liquid coming out of my eyes (particularly the left one) I think it's just excess moisture from the swelling.
Woke up at 10:25am...... First full on sleep in ages!! Clearly needed it!
Just sitting here in bed contemplating the daunting task of getting up, not looking forward to that. 

Need to get our butts in to action though..... Today is Flozzie's 40th birthday party!!!!

Going to be a great day!

Was struggling this morning..... Really exhausted and couldn't really lift my head and I'm dizzy, really dizzy..... It's all just a bit elevated.... I guess we just have to wait and see how each day goes and then deal with it.

Right time to get my ass up and get the kids and myself organised.
Starting to feel a bit better.....and managed to get dressed and get to the party (albeit an hour late....... Sorry Floz).

Was a fun afternoon, awesome food, drinks, music and especially the company!
I couldn't do much today,  I just found a cool area and sat taking it all in all afternoon.
So nice getting out, getting dressed up and hanging with my favs. Instantly brightens your mood. Love my crew #theyrethebomb
#luckychick #blessedwiththebest

Glad Fleur had a great day she truly deserves the best #oneofakind #loveher #mysister

Day 5 of after radiation treatment (Monday)
Things are definitely happening. I feel fuzzy and dizzy. Moisture is coming out of my eyes..... My vision is milky and eyes and ears a little tender. My scalp is still tender too...... Nervous about brushing out my hair to see how much hair falls out! I guess it's inevitable..... I should just suck it up. Might wait till the weekend. So I can practice on some scarves!

So we have a new morning routine. Kane wakes me up at 6am for breakfast and then I take my meds and try to sleep again (which I've been managing to do).
This seems to be working because it means I'm getting enough sleep during the day to get me through, and I may need a little Nanna nap in the afternoon.

My hair is falling out more now...not in chunks yet.... But more like moulting. It should be gone by the end of the week. This is confronting (not gonna lie) but I'm trying not to disturb it so it stays for a bit longer 😊

Today Kane's going to speak to our oncologist so to understand how an ALK drug works (which was just prescribed for me on Thursday as the wonder drug) on me an EGFR mutation. This is concerning for us but we assume there's a reasonable explanation.
Well he never got back to Kane....not impressed.... Could have just found 10 mins to address our concerns. We followed up with an email that hopefully gets answered today...... Otherwise I'm going to call!

The other symptom I'm feeling is a yukky one...... Well my tastebuds have changed not sure it's happened to anyone's dealing with cancer..... I just think it the crap load of drugs we're taking that's messing with my buds. Although a side effect of taking long term dexamethasone (which I am) can cause thrush in your mouth and maybe that's happening too....because everything seems bitter.
On an upper though.....this new anti fungal drops for your mouth actually taste bearable.... Pleasant surprise 😊

So Kane bought me a book about the "anomaly" which I am. I don't fit with the stats and this book is about studying the anomalies  and understanding why thousands of people are curing themselves of cancer in a "Radical Remission" way.
This doctor through her many years of research had discovered 9 key areas that were common to all....well worth giving it's shot! Nothing to loose and it might be fun along the way too.
This story sits really well with me because I'm defiant, I choose to ignore that stats and I am the anomaly.
Still as I write this stuff and people call to check on me I'm stunned, it's not for me, this is not about my family, this is not my story, I refuse! I'll be that freaked out story they're talking about in years. #nothoinganywhere #stillfreakingthatthisstoryisaboutme #throwingeverythingatthissucker #kickitsass 🦁👠💕💪🏾

Day 6 of after radiation treatment (Tuesday)
And our routine is going well. Kano gives me breakky around 6am so I can take my meds
Then I try and go back to sleep, which I have been doing for the last few days.

Then when I wake around 9am - 10am I'm up for the day.
Today Tahlia spent the day with me keeping me company.

Kane was going to chase Gary again about having me on the wrong drugs???? He finally got to speak to him after a couple of calls and a an email addressing our concerns.
When Kane asked him to explain why I'm on Alectinib when it seems to be for ALK mutation not EFGR mutation (I'm EFGR)
He responded "she shouldn't be on that!!!!!"
What????? How does my ONCOLOGIST misdiagnose my issue and prescribe the wrong medication??? He said this was my best hope, this was the drug we were placing all our hope on....... The drug that was going to save my life!!!
We were counting on this drug to cross the blood brain barrier and kill the brain cancer cells as well.
If not for Kane reading so much and keeping educated about my cancer we'd be taking this incorrect medication till the 22nd Feb (when I see Gary next) who knows what could have happened by then???

On another note I've been taking incorrect medication since Saturday...... Hopefully that hasn't had any adverse side effects either!

This is a complete screw up.... I feel like I've lost confidence in Gary! How do I know anything from now on? How can I trust him?

Kane spoke with him again. This time he reassured Kane that I'm on the correct drug. And that in high doses this drug helps EGFR patients with brain mets. Are you sure??? Why now? How can I believe you now!!!
Also they are more concerned with these mets than the cancer everywhere else in my body.

Kane felt comfortable from the conversation and still has a lot of confidence in him. Im a bit dubious and need my own understanding as well as second option from Prof Ben Solomon from Peter Mac. So that's what I'm going to do.

At the moment I'm feeling good, tired yes but good (pretty sure I'm supposed to be in bed 24/7........ Stuff that!)

Tomorrow my dolly Dylan starts Prep!!! MY GOODNESS WHERE DID THE TIME GO??? The little doll came over in her school uniform because I wouldn't be able to see her tomorrow. She's too cute and she is absolute going to smash it at school! So proud of her!!

Day 7 of after radiation treatment and doing ok (Wednesday)

Today is also the 1st day back at school!!!! It's been an interesting school break!
Girls are pumped to go back and see all their friends.

Was nice to go into school and see some of the mummies too. It was great to take the girls to their new rooms and meet their teachers.....  They're going to having a smashing year!!! So proud of my little dolls and all they are dealing with!

Today I'm calling Gary need to get m confidence back, need to understand how a medication for ALK mutation will help me? Also need to know what's happening with the rest of the cancer in my body and what our options are going forward.
Called and said I needed to speak with him today. They called back 30mins later and made an appointment for tomorrow at 9:45am!!! Much better option! I'll be able to ask all my questions.

Symptoms have really kicked in...... Mouth is gross with thrush..... This is a seriously gross, the dexamethasone (ongoing use) causes thrush in your mouth!!!! Feral!!
Besides that I've got increased sensitivity on my scalp and my hair is starting to fall out. Not in clumps but if I touch it, it falls out..... time to do something about it. Also my eyes are leaking a bit too, it's annoying, it's a result from the radiation. The radiation causes swelling on the brain and I guess this the excess moisture.
But really despite all that I feel pretty good..... Really tired but not in pain or any real discomfort, so I'm doing well.

The rest of the day was mainly rest and recovery..... Which I truly needed.

There is blue moon, blood moon and super moon.....lots of moon luck..... Giveme giveme giveme 😊🌑🌛
Tonight I went to bed determined to find out what the plan is with Gary and how we're going to tackle this going forward!

Day 8 after radiation treatment
Harper starts 4 year old kinder today....... HOORAY!!!!! My little doll starting her first day of kinder........she's going to love it!
She loves her teachers Ange and Maggie and know that she's going to annoy them with kisses and cuddles all day. But who doesn't love a Harper cuddle???

Straight after kinder it was off to see Gary!!
It was a good meeting. He explained how the ALK drug does manage to cross the blood brain barrier even in EFGR patients. He also spoke about other options..... Getting me retested for T790M because the blood test often comes up with false negatives, do they are testing from my original biopsy. If that comes back positive (fingers crossed) means I get to go on a drug that will help with crossing the blood brain barrier and help the rest of the cancer in my body.

Should that come back negative we have the option of immunotherapy, same thing need a life line. I need to be PLD-1 which just means it will work for me.

Then of that doesn't work there is chemo!

So there are options and we're going to smash them and be the exception to the rule!!!

Another day of extreme fatigue..... Made the most of it and slept for most the day.
When I woke to my gorgeous visitor Amy, we chatted and I said I think it was time I bit the bullet and shaved my head. My hair is starting to fall out and I'd rather have it neat...... So here I go! LET'S DO IT!!

So we're off to our personal hairstylists AMOS HAIR in Sandringham, and as per usual they did an amazing job!! Made what could have been a daunting experience really enjoyable. Down side....... I look like Sean 😊😊😊 jokes Sean don't mind looking like you, as long as I don't get your stubble too!!!

So we're on the way home, feeling liberated and going to smash this!
#kickitsass #fightlikehell #notgoinganywhere #doingok #imstronganddefiant
#watchmedothis 👠🦁💪🏾