And here are the photo's...

I arrived home safely from Sydney, and it was SO great to be at home with Marc and Millie!! We have had a quiet weekend at home while I get over the recent treatment, which has been wonderful just to be at home and relax.

Here are some photo's from Gina's visit to Auckland - and from my time in Sydney.

The night that Gina arrived - cause for a celebration!

Marc and the our bestie - Gina! x 

Gina and I

She just could not resist a turn of my 'Hannibal Lecter' radiation mask!

Here we go - me, with my "clever little sea sponge"

The excitement was nearly too much for Marc!

Me, with my AMAZING nurse (who also gave me chemo in 2007) - Paula x

My gorgeous friends, Jackie and Naomi who live a few hours out of Sydney - unfortunately we had just finished Jackie's first round of chemo again - after we met in 2007 having our original treatment.

The beautiful Shelley and I

And of course - here she is - Grrrraaaannnndddd Maaaammmmaaan (and baby Fraser)!

Francoise, Fraser and I x

This was a great night too - with Mindi, Tim (and Flynn)!

Lou x

Coming home......

I am currently sitting in the Sydney Qantas Club (.....mmmm....yes, I admit I played the C card and wore a hat not a wig.....thus gaining access to the Club AND access to priority customs (it's got to be good for something hey?)), waiting for my flight home to Marc and Millie - I cannot wait!

The last week or so in Sydney has been wonderful, and Tim has been a wonderful host and looked after me every step of the way - Marc and I could not be more grateful.

I have lots of photos to post, which I will do over the weekend, as I was lucky enough to be able to catch up with a lot of my friends in Sydney during the trip (Tim's parents, Jackie, Naomi, Mindi, Shelley, Francoise, Graaaaand Maaammmaan, Heidi, Fraser, Clover, The Farm Dogs, and all of the Signature Team) which was wonderful (thanks Niri for arranging the delicious Yum Cha lunch)! x

I had my "clever little sea sponge" treatment yesterday, and now I will have a break for a week and a half before my next treatment the week after next. All of my blood tests came back with good results, so we did not need to reduce the dosage as some women are forced to do which was fantastic. Got to spend some time with Fran which as always is amazing. I always feel absolutely on top of the world after any dealings with Fran - she is one of the most incredible people in the world. The only bad news was (and can you believe this???) they have had to double my steroids - which as you all know are my FAVOURITE part of this situation!!! This is just to keep my swollen eye under control, until we can schedule some radiation to disintegrate the little critter that is on the bridge of my nose! So, in the mean time I am (trying to) "suck it up" looking like the Michelin Man  - I think that people think that I am part of some kind of Halloween exhibition or something peculiar... lol!

I will post all of the photos on the weekend.

Lou
x

The Dynamic Duo

On Thursday, Marc and I went to have our dose of my "clever little sea sponge" and we were delighted to be welcomed by Paula and Lisa the same chemo nurses who looked after me in 2007. They have moved buildings into this beautiful old convent, which is decorated so perfectly and looks incredible! Paula was fantastic as always, and the entire process only took 20 or 30 mins (I think it would have taken 5 minutes if we weren't talking and laughing so much)!

The side effects have been quite minimal at the moment, I felt a little tired and "off" on Thursday afternoon and yesterday, however am starting to feel better today. It is a gorgeous day here in Sydney, so we are off to enjoy the day with Tim.

Yesterday afternoon we had the pleasure in meeting Fran's husband - Dr Hennessy. Sal - you were so right with your comment - Marc and I have truly been blessed with the people that we have crossed paths with. Even with our run of bad luck - there really is a silver lining!! To have Fran and Dr Hennessy on our side is AMAZING! Dr Hennessy took photo's of my retinal tumours on a machine that is the only one of it's kind in the Southern Hemisphere- and they will take more photo's in 4 weeks to see how they are reacting to the treatment. The technology was incredible - Marc thought that he had walked into the twilight zone!!

Next treatment is scheduled for next Thursday, and all going well, I will fly home on Friday.

Lou
x

A sea sponge to the rescue!

Well, we certainly have had a topsy turvey week! We celebrated our great news (or so we thought) over the weekend with the awesome company of Gina - and we had an absolutely amazing weekend filled with LOTS of laughter....and funny stories!! I will post some photo's of our weekend together shortly!
 
On Monday we met with Dr McCrystal to give him an update on our successful admittance to the AU drug trial. When he saw my eye he was concerned that it was still so swollen, and as a result referred me to an Acute Opthamologist on the Monday evening. Unfortunately our "good news" was dampened with the fact that my tear duct is blocked probably due to more cancer.....and whilst they were checking everything else, I was diagnosed with Retinal Cancer in both of my eyes! That explains why I have been having so many problems with my vision, which previously they have put down to the brain radiation!!
 
Anyway, Marc and I flew into Sydney yesterday and met with the AMAZING Fran. We felt as though a weight had been lifted off of our shoulders as soon as we saw her!
 
So, basically the next steps are to prioritise our "issues" which at the moment are my breathing and lung function - so we are off to start the new trial drug (derived from a clever little sea sponge) this afternoon, and wiil have a further treatment next Thursday, and I will fly home on the Friday (29/10). We have faith that this drug will have an effect on ALL of our tumours, and start getting things under control again. For this cycle I am required to be based in Sydney so that they can monitor me for side effects etc, however the next cycles may be more flexible, so that I can spend the week inbetween treatments in Melbourne with family and friends which will be great.
 
Can you believe this - Fran's husband is an Eye Ophemologist - so we have an appointment with him on Friday, so he can take some scans of what is going on with my eyes, so that we can monitor their progress as we make our way through the next treatment.
 
We caught up with Tim last night for dinner which was great too!
 
Lou
x
 
 

Good things come in 3's

It was a triple tick Friday!!!

Firstly, my best friend from Melbourne - Gina - arrived to stay with us for the weekend.

Secondly, we had a CT scan on Friday morning to see what was causing the swelling below my left eye, as there was a possibility that I had a new brain tumour (it looks as though I have been punched in the face!). The results came back and it is just some inflammation from the radiation (the symptoms from the radiation are really only starting now - sore head etc), so nothing to worry about - and ALL of my previous brain tumours have "reduced significantly"!!!! The large tumor that they were really concerned about (that potentially needed brain surgery) is now "barely visable" - so that was just the BEST news ever. Dr Moller and I read the report together and were just over the moon.

THIRDLY - we had our conversation with my amazing AU Oncologist, Fran, and I have been accepted into part of a new trial drug from England, that is based in Sydney (and potentially Melbourne)!!!! It is a "named patient program", so Fran has thrown my name into the ring so to speak, and I have been accepted!!! I will travel to Sydney by Wednesday next week, have the treatment on Thursday, and the following Thursday, and spend 10 days in Australia in total to be monitored. There is a possibility that I can have the second treatment in Melbourne - however we will see how I go with the initial treatment - it is all so exciting!!! The main side effect is hair loss - so that is no issue :)

We just could not believe our luck.

Gina arrived yesterday, and we have had a great time. Today we went for breakfast (mmmm....eggs benedict), and then to Mission Bay where we walked along the beach in the sun, eating waffle cones from Movenpick Icecream. Tonight we are heading to our local Indian Restaurant for dinner....and then we will plan what we are going to do tomorrow before Gina leaves to go home to her boys (and Tilly Cat).

Lou
x

Eat, Pray, Love and Metallica

One of the things on my Bucket List was to be in a book club (just for one book though), so Armin, Penny, Sue, Sarah and myself chose the book Eat, Pray Love to read - and tonight we are heading for dinner at a French restaurant to "discuss" the book (aka "have a good gossip") - and then we are heading to an old movie theatre for the movie premier - it will be a great night!

On the other extreme - Marc went to the Auckland Metallica concert last night with some people from work, and had an absolutely brilliant night! I am still nagging him to update the blog with photos of our new Cacti garden!!

We met with Dr McCrystal on Tuesday, and had a good meeting. Not much of an update now until we speak with Fran late tomorrow afternoon to discuss what the best options are moving forward. We went to see Dr Moller (my AMAZING local doctor) today as my left eye is a little swollen - she is not sure if it is sinus infection, where I dropped my iPad on my face when I fell asleep (don't ask - I'm blaming it on the sleeping tablets), or a "nasty" - so we are waiting to hear back from her about that!

Fantastic news - my best friend from Melbourne - Gina - is flying over tomorrow to spend two nights with Marc and I - so we are both very excited about that. We cannot wait! I have booked dinner on Saturday night at our local Indian restaurant, and plan to have brunch on either Saturday or Sunday morning somewhere nice. I haven't seen Gina since our wedding - way TOO long!

I will let you know when we have an update from Fran.

Lou
x

Homeward Bound

Yesterday my blood count was really good, and my breathing had stabilised, and as a result I was given an "overnight" pass (on the provision that I was back in my bed in my PJ's by 9am this morning)! Marc picked me up and we had a scrumptious Yum Cha lunch - and then headed home to relax around the house. Penny had cooked us a delicious organic chicken curry for dinner which was awesome! Millie was thrilled that we were both at home. Had a great night's sleep - and was back as requested at 9am on the dot! All of the nurses gave me a nice welcome which was lovely!

This morning my blood results were really good, and they have changed all of my medication to tablets - so I have been officially discharged! Marc is on his way to pick me up - WHOO HOO!

We will meet with Dr McCrystal tomorrow, and then touch base with Fran on Friday - who will have our next plan of attack.

Thank you all for your message of support and encouragement - it really means a lot to both Marc and I to know that we have so many people in our corner!

Love Lou
x

"Day Release" for good behaviour

The last three days the doctors have been performing a barrage of tests to get to the bottom of this trouble I am having with my breathing. I had a blood transfusion yesterday as my red blood count was too low - and today they have increased my steroids (just our luck!) to see if that will alleviate my symptoms.

The fantastic news is that I am allowed to leave the hospital to go home after my IV antibiotics at noon, and I don't have to come back until 8pm tonight - when I will be readmitted. Hopefully all going well, they will do the same tomorrow too! I'm am so excited, as I haven't seen Millie since Wednesday - so we are going to have a good afternoon.

I have made contact with Fran (our INCREDIBLE) Australian Oncologist, and she has a few magic tricks up her sleeve, that we will know more about next Friday....so we will know our next battle plan then.

Yesterday I had visitors from Marc (obviously), Penny and my local GP - Susie. Can you believe that she came in after she had finished work to see me? And she was here for over an hour - seriously we have some absolutely magnificent people in our lives!

Okay, got to go and get ready for my day trip - very exciting!

Lou
x

And another hurdle.....

The official reports came back this morning from the scans last night. Unfortunately all of our tumors have gone on a bit of a "growth spurt", and I have a slight infection in my lungs. The good news is that they think the infection is causing the current symptoms, so a few days in the hospital - lots of antibiotics - and my breathing may go back to normal (fingers crossed).

The bad news was that they now identified some cancerous tumors in my liver - so we will add that to our next battle plan! Obviously my current chemo is not working, so I will wait to speak to my AMAZING Australian Oncologist - Fran - and find out what we are going to do next - I presume it will be a new type of chemo.

I am feeling slightly better than yesterday, and my breathing appears to be better which is a great sign. The hospital staff are absolutely lovely - we had a really sprightly young nurse today called Lucy who was adorable - the food has been delicious (not that I am that fussy at the moment as still on my steroids) - and they bring me a cup of tea twice a day!

I had a great surprise visit from Howard, Armin and Penny today which was great too (excuse my "moon face" - they have been pumping me full of fluids today to control my low blood pressure)!



At this stage I will be in the hospital until at least Saturday - and hopefully by then we will have nailed this infection and I will be feeling normal again.

Lou
x

Another Grand Final, cacti shopping...and a trip to the hospital!

We had a great weekend "re-celebrating" the AFL Grand Final at Norman and Sue's, followed by breakfast and Cacti shopping on Sunday. I never realised how much fun shopping for Cacti could be - we had an absolute ball - and our new Cacti bed looks amazing.

The boys on Grand Final day.

On Monday night I had dinner with Armin, Penny and Sarah at a really cool restaurant / bar in Kingsland - the food was delicious, and the decor was really funky! We had a fantastic night.

We met with Dr Jose on Tuesday (my Radiation Dr) - everything seems to be going according to plan, although I did get a telling off for taking too many sleeping tablets every night (the steroids keep me awake)! He is going to leave the scheduling of the brain scan (and the decision as to whether I can fly or not yet) with Dr McCrystal (my Oncology Dr) who we meet with next Tuesday. Still no driving. The good news is that I think the radiation has JUST missed my eyebrows and eyelashes which is exciting! I have also lost 3 kilo's, and my "moon face" swelling is slowly reducing.

I was admitted to hospital today, as still having problems with my breathing. They have done lots of blood tests, a CT scan and a chest x-ray. This has ruled out a blood clot (which they initially suspected), and pneumonia. The lung tumors have grown since the last scan, although not significantly, so they don't think that they are causing my symptoms, however there are small spots of infection in my lungs. At this stage they are treating me with high dose IV anti-biotics - and we will know more in the morning when the official results come back.

Marc is at home with Millie tonight and will be in in the morning. Millie is having a 'phantom pregnancy' (can you believe it?) - so she is extra hungry, and putting on weight etc!!!

I'll post an update once we know more.

Lou
x