The week that was......Rye, symptoms kicking in, last day of radiation.....what now???

Saturday 20^th January

WOAH!!!! Pain has kicked in!!!! The radiation pain has elevated x10. Heads about to explode and my chest and back…..WOAH!!!!!........DRUGS ASAP!!!

On a better note at least, I had a better night’s sleep, in the first time in over a week I’ve slept more than 4 hrs!!!

In the attempt to make the most of the good times we decided to go on a little impromptu trip away for the weekend!! Kane managed to get us a little beach house in Rye.

The girls are pumped…..love a road trip! Mum came with us too!

We arrived at the house and it’s ummmmmm OK! It’s trying to be a Tuscan style beach house but well isn’t! Anyway, I guess it all added to the adventure of the trip. We spent the afternoon at Rye beach and played in the sand and water. The rest of the trip was chillaxing, we ate average Thai takeaway cuisine and watched Adam Sandler movies until it was bed time!

The next day Kano made us a yummy big breakky and the girls played backyard cricket and danced around.

Today I’ve noticed that my head (the skin on my scalp) is becoming sensitive around the crown. It might be the beginning of my hair falling out due to the burn from the radiation. Kane and mum had a look and said it looked a little red, but hair hasn’t started to fall out.

Later that day we made the obligatory trip to Sorrento to have one of their world famous vanilla slices…..yumballs!!! But we all needed to roll out of there after that super massive treat!

Was a great weekend away!

Monday 22^nd January

On to my 3 last sessions of radiation….YAY….BRING IT!!! 7:50am appointment….early start, and the gorgeous Janet is my driver again!

So nice to have some time to gas bag on the way to treatment. Radiation was over before we knew it and it was time to start the day!

Today was Dolly #3 turn for Mummy/Daughter day!! Harper has been looking forward to this special one on one time and so have I.  She just wanted some special one on one time. So we went to Kmart and bought a Barbie and some stationery for her sisters, then we had some sushi and played at Totally Game! She had the best time and I did too. She such a love bum and I just look at the kids and I want happiness for them…..gotta to make the most of time I’m well with them….so important!

Tuesday 23^rd January

Today is Fleur’s 40^th birthday!!!!! Happy birthday Fleur!!

Today is also day 9 of my 10 days treatments…..yes we’re getting through them! We also had a follow up appointment with Dr Ian Porter. This week’s meeting made a pleasant change from the deep discussions I had with him last week.

He just wanted to know how I’m travelling and what symptoms I am experiencing. I’m tripping these Dr’s out! I shouldn’t be feeling so well, I shouldn’t be looking as well as I do. I should be bed ridden according to them. #exceptionnotthenorm

Symptoms that I am experiencing are, slight tenderness on my scalp and chest from the burn of the radiation, ear aches (pain in both my ears, may be the beginning of tinnitus, which is common) and just fatigue!

I asked him about driving, because that’s a huge one. Over the last couple of weeks not being able to drive impacts your independence…it’s huge! I feel like I can, I just need to know if I’m allowed to. The answer was a solid “NO”. He said because of the meds I’m on, I’m more likely to seizure than the average person so driving is a no no!!

We also spoke about our brief trip to Queensland that we had planned for the 8^th of Feb. He said I can go if I’m up to it and advised what hospitals were good to visit should I need it while I’m there.

Dr Ian Porter has magic powers…..he can talk to you about the most dire circumstances and discuss issues matter of factly, but somehow you walk out feeling good!

Later that evening it was time to celebrate Fleur’s birthday! We had a yummy dinner and decadent desserts and spent time celebrating the wonderful woman that is Fleur!! #luckytocallhermysister

Wednesday 24^th January

YES we made it!!! Today is the last day of FULL BRAIN RADIATION!!!! So looking forward to not having to go back there anymore and getting on with recovery!!

It’s an afternoon session today, so Raquel (my driver for the day) asked if I wanted to go shopping and maybe grab some lunch beforehand. I thought that would be a lovely idea.

I had the girls (Tahlia and Kiara) with me and Mia came too. In the car Raquel was saying she wanted to buy me more makeup and I said I didn’t need any. I said “Let’s just go grab some lunch before we go to radiation” , but she had other plans. She started to walk in Louis Vuitton…..and I’m wondering why we are going in there (not a shop I frequent usually 😊)

When we walk in they know my name….saying “Welcome Cassy, are you excited about your day??” I’m flipping, still not sure what’s going on and what timewrap I’m in!

They escort us to our private room (Had no idea there was a private room) asked us if we want champagne (Just mineral water for me) and spoil the girls with sparkling apple juice and choccies!

WOW!!!! MIND BLOWN!!! WHAT HAS RAQUEL ORGANISED????

So our personal shopper/assistant David then brought in a selection of bags….FOR ME to try!!!!! I chose a gorgeous crossover bag, which I love….Thank you xxx This really was not what I was expecting from the day! But it was lovely and an amazing/perfect start to a fabulous day!

Then it was off to my last ever (well for now) radiation treatment! When I walked it there was cheering and clapping hands and they made such a big deal about it being my kast session…..it really felt like a sense of accomplishment!

I grateful to have this over and done with and I am grateful with how well my body has managed it to date. I am also mindful and that this was the easy part and the next 6-8 weeks and are going to be the most trying! In particular the next 10 days or so should be the toughest! During this time it is  expected that I loose all my hair, I develop blisters and open wounds on my body, face and head. I will have full brain odema (swelling on my brain) causing extreme pressure and pain. There may be issues with hearing, etc and fatigue like you’ve never experienced before. It is so individual so all you can do it wait and see and deal with it as it appears.

 But today was a GREAT day!! I feel grateful to be here and grateful for the love and support I have in my life!

Thursday 25^th January

Been looking forward to this day, because today is the first day we meet with Prof Gary Richardson (my oncologist) since my brain cancer diagnosis!

Kane has been doing a lot of research, into different meds, treatments, clinical trials and just options for us. We want to know that all of this is on the table and available for us, so that we can fight! We also want to know that he is not giving up and that he is going to fight with us and that it’s not just about quality of life but quantity. I plan on being here and I need him to make sure it happens.

When we went in to meet him he had a plan in place…..HOORAY!! He spoke to us about this new drug (which was just PBS approved this month…..freaky) it’s called Alectinib and it crosses the blood brain barrier unlike Iressa which I was on. This drug in theory should do what the Iressa was doing for the rest of the cancer in my body, as well as attack the tumours in my brain.

We spoke about its effectiveness in dealing with my situation. He said it’s my best option. We need to wait approx 6-8 weeks before we can do another MRI to see if it’s working! And at that point he said should it not work, we have the option of chemo, or immunotherapy. We felt relieved because we know there are options and we are not giving up. We are realistic too and know that things are going to get tough…but we’re up for the battle. 

I just want to give my body the best chance at recovery so that I can get on with living!!!

So today is another day for celebration!! And what better way to do that than to sleep as a family in individual teepees, with feather boas, flamingos, and fairy lights! It’s a family sleepover movie night….Thanks gorgeous ladies @Teeparty2U for setting that up for us today!

#livelife #celebrateeverymoment #blessed #kickitsass #lions