Wednesday, 4 March 2015

Wordless Wednesday : Despicable Me

Guess who brought both iPad and Mini to Sydney ...much to his twin's - that was despicable - he did it on purpose attitude TOO.

J had 5 days with just my old iPod. Anyway, this Cheeky Minion had a Neurogenetic Clinic appointment at Westmead - for annual Neurofibromatois review. We encountered this big Minion in the corridor. Sam wanted this picture ! It is so HIM.


Tuesday, 3 March 2015

I made the best decision for me at the time.

Ever since I read , on Sunday afternoon, of the tragic passing of Jess Ainscough  , the Wellness Warrior, I have felt overwhelmed. Cancer is a bitch.

Overwhelmed more by the CONTROVERSY and debate, the judgement,the misguided and factually incorrect comments. I didn't know Jess personally and while I've read her website and knew about her choices , I did not follow them. Amongst other things she advocated a healthy lifestyle and I applaud that.

I am sorry for their loss.

Twelve months ago today, my life was shattered once again with a malignant cancer diagnosis - a much more scary one. Soft tissue sarcoma - Malignant Peripheral Nerve Sheath Tumour. MPNST.

I wondered should I weigh in with my own thoughts.
Dare I voice an opinion.
Sadly, many people with even less knowledge or experience have. Yet, there is nothing mentioned about what finally ended Jess Ainscough’s life.

I feel qualified having faced cancer twice including a rare sarcoma 12 months ago. Jess Ainscough had Epithelioid sarcoma , mine was a different type - sometimes initially with a very similar 'pathological' presentation. 

My husband also had a different malignant sarcoma too 5yrs ago.A dear blogging friend died from a horrible sarcoma too barely 8 months from diagnosis , only 2 years ago. Many knew this special lady. Based on her own research she tried Gerson therapy. Her options for more surgery, radiation and chemo were limited. We chatted about it (Gerson and other treatments) a few times. She was very informed and I respected it.

Mostly, I will refer my opinion to my own experience .Out of respect for Jess Ainscough I'm not discussing her Wellness business, or those who followed her life and story. It is a delicate issue.

I digress, twelve months ago today my life was shattered once again with a malignant cancer diagnosis - a much more scary one. Soft tissue sarcoma - Malignant Peripheral Nerve Sheath Tumour. MPNST.

Sarcomas have such a poor prognosis being a rare kind of cancer. About 1 out of 100 cases of adult cancers is soft tissue sarcoma. There is so little research and treatment options.

There are 50+ different types of sarcoma, they can be grouped into two main kinds: soft tissue sarcoma and bone sarcoma, (Osteosarcomas - Ewings included). Osteosarcomas being rarer.

My sarcoma is genetic and no amount of healthy living, juicing or coffee enemas would either prevent or cure it. Plain and simple. Ingrained into my DNA, into my genes , a fault in my stars.

Sarcoma knows no borders; ethnicity, gender, or economic status.

Sarcomas are different from the much more common carcinomas / cancers. They happen in a different kind of tissue growing in the connective tissues -- cells that connect or support other kinds of tissue in your body. They spread to lungs, brain and other organs.
More common in the muscles, tendons, cartilage, nerves, fat, and blood vessels of your arms and legs, and less so bones , sarcomas can happen anywhere - even in uterus, on genitals and within the abdominal cavity. If it is in the limbs, wide surgical amputation is recommended to ensure complete removal of cancer cells.

Sarcomas have limited treatment options, often by having surgery to remove the tumour there are debilitating side effects. I have at least two Facebook friends, with the same genetic MPNST sarcoma in their leg as I did. Both had a leg amputated , including half their pelvis and sacrum ;both have complications but still live a 'full' life , just not one they would have imagined or chosen.

Others in the group have faced amputation and radical surgery and still died; painfully. It is quite tough for doctors to come up with any suitable treatments in many cases. In the US patients are subject to approvals by insurance companies, limited by money and admission to various trials to extend life. At whatever cost or succumb.

I have complications from surgery nothing I can't cope with, and I have my leg. Though the preferred wide surgical margin was not possible because it was with < 1mm (actually 0 .8mm of my femur) margin. 10mm is the minimum recommended.

The Radiation oncologist asked my surgical oncologist could I return to surgery for a better margin ...
No , not without potentially and unnecessarily awful complications.Amputation was not an option offered.

Even my very esteemed surgeon and radiation oncologist did not agree entirely about radiation. The choice was ultimately mine. It's a balancing act - do more harm or wait and see.

A week after radiation.

I know there is nothing I wouldn't try (using my own critical thinking and beliefs) to extend my life. 
Yet, I can barely imagine having my leg amputated. I would, within reason, try every other option first. I haven't and I hope I never will face such a difficult and life changing decision.

Why didn't Jess Ainscough amputate ? 
Only Jess knows.

I have issue with one of the debates - I can't believe people suggesting and speculating that her vanity and treatment choices caused her 
"preventable death" or "unavoidable death"

Well, I know in many cases (based on my participation a world wide sarcoma support group of 2000+) maybe it would have made no difference. The unpredictability of sarcomas and the wide spectrum of how it affects a person creates uncertainty with treatment options. Yes, some people might get a few more years but at what cost. It is still their choice.

Even the Sarcoma Alliance a worldwide based group that advocates and provides information includes complimentary and alternative therapies. 

Some chemotherapy drugs came from plants or animals originally, such as from the Pacific yew tree, trabectedin from sea squirts, and doxorubicin from a bacterium.
I had both  Paclitaxel and Doxorubicin (Adriamycin) as my main Chemotherapy drugs with Breast Cancer. 

Adriamycin is also used in MPNST sarcomas. My bad, I can't have it for this , if I need it though in the future.

Her mother, Sharyn's passing with Breast Cancer too - even early diagnosis and aggressive treatment sometimes makes a SCRAP of difference.
Eminently treatable ?
I don't always believe that !

Each person's reaction to a cancer drug is different.

I can honesty say I still doubt my decisions , that I didn't had radiation for Breast Cancer (the Oncologists said it wasn't necessary) , that if even if I wanted to I can't have chemo for the sarcoma and also because I had it with Breast cancer - the complications potentially to my heart could be fatal.

So strict are they with the dosages, least they kill you with the treatment. Another (real) friend nearly died during her first chemo, it weakened her immune system so much so. She spent 2 wks in isolation in hospital and away from her children - she told me she thought she was going to die THERE without goodbyes or a chance to have a good death.

We both cried a river of tears while she described the near death experience , as we sat and talked over coffee in a cafe - not a care who was watching and they were . Happily, she is doing well now after two and half yrs.

I would always have chosen cancer drugs because it gives me hope for the future. I made the best decision for me at the time.

Maybe Sharyn Ainscough did too ! Chemo has a 10% chance of a fatal outcome.

The stats say 20 - 30% of women diagnosed with Breast cancer will die no matter what stage at diagnosis.* The survival rate with terminal diagnosis has improved with treatment to extend life but they still die.

Truth - maybe not in the first few years but they don't mention the ones who die after 5 -10 yrs. Some zealous , healthy, exercising clean living juicers live and it seems just as many as those who do nothing 'healthy' at all live too. Note: I am not advocating living unhealthily.

I have dozens of Facebook friends diagnosed with early breast Cancer , who DID all the treatment regimes, mastectomy , chemo and radiation and they still died or are terminal .

One real life friend is undergoing more aggressive chemo after in spread to her hips, other bones and now liver. Terminal and dying in just over 3yrs (under 50)

Another , dear friend with early Breast cancer over 10 yrs ago has just been given a terminal diagnosis after breast cancer metastasized to her lungs. Out of nowhere in 10 years.

Cancer is SH*T and it doesn't follow any rules. Medical intervention is sometimes worst than the natural progression of the disease - especially with sarcoma.

While, I don't disagree either with some of the debate surrounding Jess Ainscough's influence as the Wellness Warrior and promoting the Gerson therapy - it's just so very complex. 

How can we speculate whether her life and death were unnecessarily awful ? It was her journey.

* It is estimated that 20-30% of all breast cancer cases will become metastatic. [O'Shaughnessy, J. "Extending Survival with Chemotherapy in MBC" The Oncologist 2005:10]


Wednesday, 25 February 2015

Wordless Wednesday : Aussie Bums

We won in Super cupid competition for Cupid's Undie Run - mostly my hub's ideas too ! I can't believe he was willing !


Tuesday, 24 February 2015

We don't stop squatting because we grow old ~ 101 !

If my legs could talk - they be arrested.
If you came here looking for advice and squat love - you'll be disappointed.

My own fault  one dozen too many squats.

I yearn for the good old days ...

  I did my research - Strength Training 101: How to Squat Properly

  Why ?

Do you squat ?
Do you diddly squat ?
Any tips for me ?

Ps I found this cool old girl band called Diddly squat ..they took up music in their middle ages . So catchy and unique.


Friday, 20 February 2015

Taking Stock: February

Making : Plans for a Cruise later this year
Cooking : Lime soda Scones
Drinking :Copious amounts of tea – wish it was wine.
Reading: "Bittersweet" by Colleen McCullough
Wanting: my new Cochlear BAHA - to hurry up and be approved
Looking: for my Garmin Foot Pod – that went missing while I was in Sydney doing Cupid’s Undie run.
Playing: 2048 6 x 6
Deciding: To stay away from Facebook more ...maybe tomorrow
Enjoying: Kayaking on the river
Waiting: on my new Cochlear BAHA – with wireless Bluetooth I think
Liking: too much junk on Facebook. Distractions I should avoid
Wondering: how I ever survived without the Internet
Loving: card my husband gave me for 25th Wedding anniversary
Pondering: what makes a marriage last
Considering: buying a mountain bike
Buying: see considering
Watching: the concreters get the garage slab form work ready
Hoping: the new garage is finished soon
Marvelling: Our team Raising $3600 In Cupid’s Undie Run
Cringing: at photos of me in my undies on Facebook
Needing: to lose weight my skinny jeans are too tight
Questioning: why I’m not losing weight since I exercise a damn lot
Smelling: not my roses – because the bloomin’ cows chomped them down almost to stalks
Wearing: exercise gear
Following: The rear end in front of me at Cupid’s undie Run
Noticing: exercise gear makes thighs appear slimmer
Knowing: that the truth is my thighs are more jiggly than last year
Thinking: I should get my ass into ‘exercise’ gear
Admiring: how hard my hubby works
Sorting: through 25yrs of clutter and hoarding
Getting: no-where fast
Bookmarking: actually pinning lots of wicked recipes I may never make
Coveting: other people’s cooking skills
Disliking: the dirty floors
Opening: Bills, bills and more junk mail.
Giggling: at Katering on youtube channel
Feeling: Overwhelmed
Snacking: Sweet little tarts filled with choc or caramel from Aldis
Comforting: Friends going through tough times.
Wishing: That I could be in two places at once next week.
Helping: Meals on Wheels and school canteen
Hearing: Bugger all because my 5yr old BAHA is stuffed.

Thanks Pip, that was fun.


Thursday, 19 February 2015

Racism and the Freedom ride.

It is hard to believe it is only 50 yrs ago that Aboriginal people were treated so appallingly because of racism and apartheid.

White supremacy meant segregation at local town amenities.
Children were not allowed to swim in public pool after 3:30pm, men could fight and die for Australia but faced exclusion from RSL clubs and Aboriginals weren't welcome at movie Theatres.

Have you heard about the Freedom Ride 50th Anniversary - they exposed Australia to the racism ‪#‎freedomride50‬

The Freedom Ride was an important catalyst for some substantial changes in Aboriginal affairs over the next 10 years or so.
Not to mention their dire living conditions - housing, health, and education.
Significantly, The Freedom ride brought Charles Perkins to prominence as a passionate and articulate Aboriginal leader who was not afraid to tell white Australians just how disastrous their racism was for the lives and opportunities of his people.

The Freedom Ride of 1965 was a significant event in the history of civil rights for Indigenous Australians. Inspired by the Freedom Riders of the American Civil Rights Movement, students from the University of Sydney led by the legendary Charles Perkins embarked on a journey through western New South Wales to expose racism and segregation. 50 years on, the bus has headed west again to honour the legacy the Freedom Rides.
I admit I knew nothing about the Freedom ride till yesterday.

My children and I have Aboriginal friends and I just can't fathom it.

Apartheid and white supremacy still occurring years after the Holocaust !
Not that I'm comparing the horrors of the people murdered by Hitler - just the reckoning behind it.
As if one race is supreme to another.

 Read the ABC story here…/20…/freedom-rides-remembered/6130544  

Living in a large regional country town, with a lot of Aboriginal people ,there is still an element of racism and indigenous families are still disadvantaged.

The recreation of the ride, touring the country towns involved 50yrs ago with a few celebrities Troy Cassar-Daley and Paul Kelly and original freedom riders, is happening now. We enjoyed a short free concert in the local showground last night...with our aboriginal friend and her son - my sons little mate. She is an educator and passionate advocate for Aboriginal youth in her school. She is also a great chick and we have a lot of laughs.

Yes, a lot of changes have been made but racism prevails - it is such a big issue and I've leave it there.

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