I’m Not Cancer but Cancer is a Part of Me

Hi Karen and hi to all the ladies who responded.
Like Patou I was diagnosed earlier this yr- stage 2, Feb 17 and then stage 4, Feb 24.

Like you, Karen I am keen to do some advocacy work and campaign.
I love what they have done in the US re metavivor and the black march last Thurs and was disappointed that the media didn't cover International MBC awareness day .... mostly because they've been saturated with pink survivor stories.
I am also keen to start a Facebook page and encourage ALL of us to raise more awareness in due course like the brave women have done in the US.... hope that doesn't sound too ambitious.
I attended the MBC day last Thurs but would love to see many more of us.  I LOVE your story Karen as the very first question I asked - was so How Long?  My brain immediately thought of Jane McGrath, Belinda Emmet and another family friend.  And of course more recently Rebecca Wilson.  But as we all know, its  not until we build up and consolidate our own understanding of MBC that we can feel relatively confident in our ongoing management - but that again, is a function of the day and time!  And of course there are SO many variables in the mix.
I'm relatively young - 51 with any 11 yr old boy and 9 yr old girl, single and have just completed a PhD.
And of course - the BIG Q is so now what?!  I find the fatigue is SO overwhelming and I don't have my usual concentration  or energy - so slowing down and acceptance has been hard but I guess, necessary.

I said this earlier this year:

Being diagnosed with breast cancer is a shock.  I had an ominous feeling that it may be breast cancer but had told myself that if the worst came to the worst, I could lose my breasts as they had done their job of breastfeeding my 2 children for over a year each.  But I wasn't expecting to hear the word CHEMO and this terrified me the most.  It took me a whole week to digest the proposed treatment strategy but none of this prepared me for the second tsunami.

One week later after being told I would have chemo, followed by double masectomies then radiotherapy, I was told that it was stage 4 advanced metastatic breast cancer which has gone to my skull, collar bone, ribs, spine, pelvis, femur and humerus - don't think many spare bones left.

The prognosis flipped and chemo or surgery were no longer viable options - too far gone!  But this may be what saves me as chemo can be SO destructive.

Three days later I had my ovaries out - this was the easiest decision of all - one where I had some control. This cut off the fuel supply.

I was screened for a clinical trial with all hopes/focus pinned on this, but then learnt that I failed the eligibility criteria because the sclerotic bone lesions were not quite the full 10mm. So fulvestrant injections because the main cornerstone of conventional medical treatment to deplete and block all estrogen. I also commenced XGeva, a drug to help with bone stability.

Wow - what a tumultuous 11 weeks (now 8 mths!). My diet has been totally revamped too - no dairy, no pumpkin, eggplant, alcohol, red meat or fish with scales, no sugar and no microwaving - according to the consensus of expertise - and its amazing how quickly we can adapt when we need to.  The irony is that I look "well" - almost with a glow - thanks to no wine or sugar and plenty of exercise. The emotional fallout from induced menopause is NOT fun - but hoping to offset this with acupuncture and patience.....

But I now have one glass of red on Fri and one on Sat, or have had the odd glass of 2 of champagne - e.g. when I saw ABFAB!

Life goes on - still at a seemingly alarming pace: I celebrated another birthday last weekend on Mother's Day, my daughter turned 9 the week prior and my son turned 11 earlier on March 1, only a few days after oophorectomy (what a great word) and some amazing mums rallied together to organise a surprise birthday party for him. There is still so much to witness....almost on a daily basis and guidance from their mummy is still so much needed - even though they're so mature in some ways, they are still so young.

I went to a cancer patient retreat in April and discovered an incredible bunch of people from all walks of life with a diverse background and age and we all shared this incredible, hard to describe bond - yes, a club/group that I never expected to belong to. So, it's been an amazing experience to date - one that I can't change or ignore or deny - so very hard some days to feel totally engulfed in fear and anxiety, yet other days to feel loved, supported and also empowered. I will write about it. 

As someone said, it's not like you can have cancer, deal with it, and put it aside while you get on and do what you were doing - it changes everything in an instant, and there's no going back.

On OCT 6th, I graduated with my PhD.  The Dean said this:

Your education at Sydney [university] has prepared you to take your place in the world wherever you want that place to be. You can make it to the top of your field, and many other fields. But what I want you to think about is - don't just take your place at the top of the world, but to CHANGE that world. The world you are headed into needs YOU. And you are up for the challenge!

Whatever you can do, or dream you can do, begin it. As Goethe said: Boldness has genius, power and magic. Begin it now - it's fun and it's endlessly rewarding."

So! Deep breath(s) and let the journey begin - such inspiring words and now my dream is to inspire others and leave a brilliant legacy - with the help of ALL OF YOU!!!

And finally with Halloween and Thanksgiving rapidly approaching there was another posting on INSPIRE (a US site like this) that posed the following question:

“What are we thankful for with Thanksgiving approaching?”:

And this is what I said:

I am thankful that some courageous women are walking in Washington DC this coming Thursday (MBC awareness day) and raising more awareness: - decreasing the taboo and stigma and attracting (hopefully) more research.

I am thrilled that I am on a clinical trial (in Sydney)

I am forever indebted that I found a brilliant oncologist (4th one!) - she is like "god"

I love my 2 children (11 and 9) more and more each day - and soak up the "ordinary" moments and find humour in their remarks (or attitude!!) if I've had enough sleep

I am grateful to my ex-husband who helps with some of the washing/beds etc. 

I am grateful for my diverse circle of friends - because WE ALL GET IT - and that is that you cannot over-burden even close friends as they all have their families, work etc.& at times I (we?) feel very isolated.

I am impressed and determined that I can do Iynengar yoga and pilates - with grit - despite the mets being riddled throughout my skull, ribs, spine, pelvis, femur etc.

I am over the moon that I found the will to do the emendations to my PhD and then graduated early October - so now am Dr Elaine George (drelaine.george.com)!

- And now I am accepting and taking on my new challenges of writing and creating advocacy so that I can inspire others and leave my legacy

And I am indebted to those brave women (e.g. Holly Kitchen in the US) who did so much.....

And finally, and perhaps first and foremost, I love the opportunity to share information and emotional support in this online community - just wish we could "see each other" more often

Elaine :) x