Friday 27 June 2014

Lost my name personalised Children's books and The Narbalek

Gifted review

In Lost My Name, plenty of animals talk.  There’s an elephant, a chameleon, a bear, crikey, an eagle, a frog, hippo, nabarlek…

Hang on a Narbarlek ?

The nabarlek (Petrogale concinna), also known as the pygmy rock-wallaby or the little rock-wallaby, is a very small species of macropod found in northern Australia.
Well , I learnt something new today.


I received an offer to send my boys a personalised Lost our name book. Fantastic for those who choose youneek names for their children. Lost my name books are a personal, beautiful magical book with an adventure based on the letters of their name.

Different characters give a different letter . Uniquely different to other kids personalised books in the market where the child's name is in the story - Lost my name created a book where the child's name IS the story.



Our The little boy who lost His name books arrived yesterday and I'm so impressed.
The quality is beautiful with sturdy pages. The words are by - David Cadji-Newby and the amazing illustrations by Pedro Serapicos .


I ordered both of mine in  about 1 minute. Hey presto - view you can see your finished book in 30 secs or so ... enter your child's name see the magic yourself

It is an independent project and totally self published. Produced by three dads and an uncle who started up the project as something small, and well, it turned into something really great!

In Lost My Name, a fierce lion is sad because everybody’s scared of him, and nobody wants to play with him.  Animals can embody human characteristics – fierceness, vanity, pride, depression – while de-stigmatising it.  Meeting a fierce lion is less scary than meeting a fierce adult, but lets us talk about the same issues.

The lessons all of the wonderful animal characters teach children throughout their childhood more than make up for the odd moment they might wonder if a cow really can dance, or ask why that racoon isn’t singing.
I wasn't asked to write about them and I choose to share it because it's truly a lovely idea and gift for a child.

Delivery time was about 2 weeks.


 

Wednesday 25 June 2014

Wordless Wednesday - Why I am Mother of the year - Gretsch Drums


Uh Mum, I accidentally bought these Gretsch drums - the phone was in my pocket I don't know how it happened? We get the old drums ...my little drummer boys will be happy about that ! I nicked the image from his FB.

 

Tuesday 24 June 2014

20 thousand reasons I'm glad I got cancer before 2015 and how do you measure a life ?

The Medicare money grab will see a lot of casualties. No pun intended. I am scared.
Fears for my fellow patients ... 

The bottom line is the rising cost of scans may deter people from seeking medical attention (forgetting they have to pay the extra $7 as well) ...in time.


Morbidity and mortality will increase.
Morbidity refers to the disease state of an individual, or the incidence of illness in a population.

Mortality refers to the state of being mortal, or the incidence of death (number of deaths) in a population.
 Fatality - a disaster resulting in death.

Especially -  


Friday 13th June marked two years on the Breast cancer roller-coaster. Four months for the Sarcoma

I wasn't quite in a celebratory mood with a potentially  terminal diagnosis  dark cloud hovering - I was petrified. I was mentally planning my funeral the rest of life lying on the hard bed, snuggled in a blanket clutching a large foam cuddly arm rest ( given so you stay still). I was also counting the cost of scans and imaging.

Who will be counting the cost of the hidden medicare co-payment and new PBS fees...
those with chronic illnesses and life threatening cancers... 1 in 2 of us.
 
So, I have to pay an additional $5 or more for my PBS scripts , one or two medications I have to take daily for another 8.5 years. I pay $36.10 for one - it's not too much for me but those on limited incomes with a dozen medications might feel the pinch.

More recently, Endone for pain (again) and sleeping pills. I've been living on Paracetamol and Nurofen the last two weeks for the radiation burn pain.

Plus, the gob full of vitamins - Calcium, Co Q10 and others to protect my bones and joints from complications of early menopause don't factor here.


Not including scans and imaging ,I'm conservatively $20000 out of pocket , my private health fund probably another $20000.

In less than two years I could lit up the city with all the radiation have racked up a massive bill for all my treatment and cancer related scans. 


So the biggest fail, in the plan ,will be if imaging and scanning decides to quit bulk billing. Early detection is vital in cancer survival and in preventing re-occurance before it becomes terminal.



Medicare rules that when a patient is not bulk billed they must be charged the full fee upfront and then claim a rebate back from Medicare...[have you been to your local 'Service centre' - it's a good 15-20 min wait on a good day just to claim a refund.]
"General patients should have to pay $90 upfront for an x-ray, $380 for a CAT scan, up to $160 for a mammogram and up to $190 for an ultrasound. A PET scan will cost over $1,000 upfront " says Australian Diagnostic Imaging Association CEO Pattie Beerens
So my PET scan on 13th June - $1000 (I didn't pay). I will need them at least yearly for 5 years. Maybe more often.

Medicare rebates will not cover the full cost of medical imaging and scans leaving patients with out of pocket expenses , potentially hundreds of $ for basic scans.
CAT scan could be $130, a bone scan $95 ?

Not to mention if you can't pay upfront ! There are not many options for credit at private imaging venues.

I had to pay $300 for my neck MRI upfront - it wasn't covered by any rebate at all , though I had a clearly demonstrated lump/lesion that was and is definitely still a concern.


Right here, I would also like to point out I've had very few complications. Apart from the initial surgery , I've had one overnight hospitalisation, for vomiting/dehydration and fever.

Both my breast cancer and sarcoma treatment has been relatively straightforward.Forget I got cancer twice , that is complicated not unusual


I counted the imaging and scans I've had (minus my teeth xrays)
  • Mammogram
  • 2 Breast ultrasound
  • Two breast 'core' biopsies via guided ultrasound
  • Nuclear medicine scan called Lymphoscintigraphy for Sentinel Node Biospy (injections of blue dye directly into breast to map spread of cancer)
  •  Insertion of Port-a-Cath (minor operation) via imaging (this cost me over $3000)
  • 1 Chest Xray (due to high temperature on Chemo protocol)
  • 1 Chest Lump ultrasound.
  • 1st Bone scan
  • 5 Heart scans (4 x MUGA and Echo - these are 'Government mandated' 3 monthly to continue on certain  breast cancer and chemotherapy treatments) 
Last 4-12 months
  • Spinal Xray
  • Knee Xray
  • Thigh Ultrasound
  • Thigh MRI
  • Chest CT
  • Brain MRI
  • Neck MR
  • Abdominal Ultrasound
  • Neck Ultrasound
  • 2nd Bone scans (18 months apart)
  • Bone mineral density scan
  • 7 leg ultrasounds and 5 x drainage of Haematoma via those ultrasounds
  • Pre - radiation planning CT scans.
  • PET Scan
 Additionally,
  • 4 x three weekly AC chemotherapy (July to Sept 2012 -2 different chemos - so 8 treatments and extra anti-nausea and steroid medications)
  • 12 x weekly Taxol* Chemo October 2012 to Jan2013 (Bulk billed though not medications)
  • 17 x 3 weekly Herceptin* infusions till Nov 2013 (Bulk Billed - though not medications)
  • 6 Surgical consultations (OOP - and he charges way over the schedule fee for everything)
  • 30 GP visits (at a guess : for scripts , Specialist and imaging referrals, blood test requests and whatever - thankfully she bulk billed me though it's not a bulk billed medical practice as a rule)
  • 20 Oncology consultations (bulk billed)
  • Dozens of anti-nausea meds (I paid $36.10 a week x 8wks for 2 pills - till I decided the cost was prohibitive and refused them on basis of cost) - plus I was chomping down Maxolon by the handful sometimes)
  • 20+ blood tests (bulk billed - majority of these you have no choice about)
  • 17 months of daily Tamoxifen tablets ...balance of 10 years to go.
  • Hundreds of vitamins swallowed - Calcium, Vit D, Flaxseed, CQ10 and other. 

  • 15000kms+ traveled for surgery x 3, Surgical , Oncology and Radiation appointments (Sydney for first 3 months of 3 weekly chemo , recently Orange - 7 weeks radiation) with limited financial assistance.
  • Infinite hours lying awake 'sucking up' my fears and holding back tears.The fear of cancer returning is a constant worry (at times very emotionally exhausting) not to mention how to pay for it all and other bills. The pills help ; best spent $10 a month.
  •  Despite immeasurable words of encouragement, support, prayers and friendship. I do not know how I would have done it without my HUSBAND, my family and friends and my interwebz community. They aren't enough.
  • Primary care at GP for mental health is so important at any time , let alone when you have other serious health issues. People with depression , may quit their 'mental health' appointments.
  • * PUBLIC Chemotherapy patients in NSW rural and regional areas are still forced to pay for their chemotherapy and anti nausea medications. Despite being subsidised on PBS - it is not free like it was for my first 3 months chemo in a Sydney Public Hospital.
  • Cancer costs vary depending on individual cases (and where you live) ; type , stage of cancer and prognosis. Beware if receive a terminal prognosis - surgery can be denied and treatment options diminish when they think you can't cured  - like why bother !
  • Breast cancer generally has very little follow-up with imaging and scanning - yearly mammogram if you still have breasts (unless you develop symptoms) . Sarcoma has a lot more because it is rarer and has greater potential to metastasize to lungs and bones (25yrs ago 90% of patients died within 2yrs of diagnosis - now 75% survive 5yrs ...)


Bear in mind these stats were 9yrs ago !

This is not a whinge or money grab - though I will be asking for sponsors when I run 14km City to Surf soon.

I am so thankful we can afford our medical expenses despite almost 4yrs without substantial income as both of us had cancer and have been carers and raising our young children in between. Medicare has also saved us $20,000 or more.

Please note - Most Importantly -  BreastScreen Australia program is still available for women to have their first screening mammogram at 50 and then every 2 years until they are 74. 

Women aged 40 - 49 yrs with no symptoms can also attend Breast Screen . However, they advise :

If you find a breast change that is unusual for you, we recommend that you do not visit BreastScreen NSW - you should see your doctor without delay.
Remember to check yourself today !

How do you measure a life ?
Does the cost of medical treatment make you think twice about seeing your GP or a specialist ?

Linking up with Jess 

Read more about this at Boob in a Box and what you can do to register your concern.

 

Monday 23 June 2014

Chat about the Chow

Not having to menu plan for almost 8 weeks ... I missed it. All  I think about is food at the moment. 
 
Desserts.
Strawberries.
Scones.
Melon
Hot chips

I feel well though at the moment by leg is quite sore where the radiation burns and my skin are giving me grief. It should only last a week or so longer.

My family really missed our quick dinner favourites.

Simplifying my menu with easy things to cook (more comfort food ) makes everyone happy. It is birthday party week , though the twins' birthday isn't for 8 days.

On our menu this week:

Monday: Beef Stroganoff , Brown rice and vegies
Tuesday: Home crumbed Chicken schnitzel, steamed veg and potato mash / cauliflower
Wednesday: Spaghetti Bolognaise (with  vegies - including carrot/zucchini/spinach/mushroom)  , side salad. Lots of vege for me.
Thursday: Surprise - a Frozen dinner that was provided for us ?? and rice.
Friday: Leftover ' Chicken or Lamb" Tortillas with salad.
Saturday: Celebrating '8' birthday Party leftovers
Sunday: Roast Lamb or Beef served with steamed vegies and baked potato & pumpkin.

I am looking forward to baking 100 cup cakes and Kat's

Coconut, Almond & Macadamia Balls


I am also sticking to soup for lunches now it's winter. Being inactive for a large majority of the last 4 months while my leg healed and through radiation treatment , except for short runs and walking has me piling on kilos. The hand to mouth exercises probably contributed as well.







Disclaimer: I don't always publish my menu plans ...nor stick strictly to them but I try !

WHAT’S ON YOUR MENU THIS WEEK?

Share your own mouth watering menu plans and ideas.

 

Thursday 19 June 2014

No one told me ...


No one told me that my good enough for now news on Tuesday , would be diminished by my sadness for other friends who didn't get the news they were hoping for.  They face many stumbling blocks in the next few weeks and months.

I can't celebrate for fear of the jinx, though we did have a great celebration last night for the biggest Drummer Boy's 21st Birthday. I forgot to pull out all those embarrassing photos (I honestly had no time to search for the hard copies being a pre-digital child) ...though Sam found a big pink sash 21 today, with tiny flashing lights - 50c at an Op shop.


Cheat's Drum cake.


No one told me that four months days at a time would be swallowed up. How can it almost be July ?

No one told me that life can still be lived well, despite having cancer (twice)- YES - I have to make it happen and find the silver linings. Look with my eyes wide open and see how incredibly wonderful it is despite cancer.

The value of living each day to its fullest, not putting off until tomorrow what you could do today. After all, one day, there will not be a tomorrow.

No one told me that cancer creeps into every single part of your lives life ; for the rest of life. Every pain , every ache will be a cause for concern and the days and weeks leading up to 6 monthly scans or oncology appointments will slay you emotionally  ... both of us.


No one told me that getting on with life after cancer - twice - would be this hard. How do we go back to normal and pick up the broken pieces ?  Normal ; is still under construction , like the shed.

No one told me that though my children are happy with boundless energy and seemingly resilient - deep down I know they are just as fragile. Too young to quite understand exactly what cancer means , old enough to know that both their parents have undergone serious medical challenges.

Four years of their lives (half in fact) we have been on this rollercoaster. This site - I discovered today Jen Singer’s Parenting with Cancer is a great resource for parents who have been diagnosed with cancer and still have to carry on with life and raising children. This article particularly on Children really aren't that resilient.

No one told me that though my husband has always been caring and patient (to the best of his ability) - not all men are.  I know that his patience is not limitless and he have had some tough times in the last 2-4 years. I'm so grateful for him.
Not all relationships are left unscathed - this article resonates with me - Cancer and my marriage.

No one told me , nor did I expect , he would be left basically alone. Few of our extended family members live near us (mostly 4+ hours away) , others were were away on holidays - while I was away for the last 7-8 weeks. There wasn’t anyone to give him a break for any length of time , though people from our church did provide a few meals a week. When I came home on the weekends I felt the pressure to do absolutely everything I could to ease his burden. It wasn't so much a crisis but an enormous strain for both of us.

No one told me how thankful I would be for the limitless websites, organisations and people that help us through vulnerable times and hold us together . All interested in bettering the lives of cancer survivors and their families.

No one told me fundamental human kindness supersedes everything.

Now I've told you ...go slay them - with kindness !




 

Wednesday 18 June 2014

Wordless Wednesday : Huge Sigh Of relief ; the results are in

for now ...
 

#100Happydays 100/100 better than I expected news the Lung nodules are either still too small to be detected or The Pet Scan suggests they may be benign : minor and other issues for future clinical review .



My image but thank you to Sam for sharing this quote
Thank you for #answeredprayers and all good thoughts ! #relieved #sarcoma and #breastcancer


 

Thursday 12 June 2014

Serendipity becomes Zemblanity and an Update.

Firstly, HOORAY ! I just finished my last #30 radiation treatment to my left thigh.

I'm so thankful for this chapter to be over.


Thankful, to be going home (tomorrow night) to my cherubs.


OMG , they turn 8 in 3 wks
 Thankful , my DH arrives tonight to comfort and calm stay with me, then drive me to Westmead tomorrow for the Pet Scan.

Thankful, though my inner thigh is red and slightly sore - The Prof said it looks good.  
While some days it feels like life is spiraling out of control , I long for days when something GOOD happens so that I can take a step back and see things more clearly.

As much as it is a cause for celebration , tomorrow is my Pet Scan.
I'm also feeling gutted for a friend. 

Though grateful that I will be followed up , to pick up recurrence of disease while it is still treatable ; if not curable. My life , forever after marked with medical events on the calendar. 

No path is so clear, No step is so easy

In certain cancers patients are left to determine a follow up schedule for scans (or none till they have symptoms) in agreement with their oncologists /medical team.  There is no denying it ; we are always cognizant of the long-term risk for relapse with any cancer vs the risks and benefits of frequent scanning. 






William Boyd coined the term zemblanity to mean somewhat the opposite of serendipity: "making unhappy, unlucky and expected discoveries occurring by design". A zemblanity is, effectively, an "unpleasant unsurprise".wikipedia

Oh my friend ...I didn't see that coming.

Yesterday, the Radiation team called me to have my radiation treatment 2hrs earlier (they were ahead of schedule). I finished and exited the side door , got to the end of the pathway and realised I forgot to stay for my appointment with the Professor (Radiation Oncologist).

I went back in the front entrance to Radiology and saw my friend , with her friend. (My friend who was diagnosed 2.5 yrs ago with Breast Cancer). Immediately, I noticed her red rimmed eyes and tear stained face. I inquired about her elderly mother who I knew had also been recently diagnosed with Breast Cancer ...my heart sunk as she shook her head.

Unable to speak , she motioned for her friend to explain. After an MRI on a painful hip - the report was concerning , possibly her cancer has metastasized to her hip. She waits,  for more scans tomorrow, then to see the Prof. 

If it is what it is ... we both know it's a tough journey again.

If I hadn't have been called in early or even if I hadn't forgotten my appointment, I wouldn't had seen my friend ; no knowledge of the storm in her midst . The silver lining is , now, I can support her, as much as I'm able.

Negative thinking is unfortunately always a part of life after cancer , even when we go about it without thinking too much about it.

Before we know it , the next appointment or scan is here or we have a new symptom.

Scanxiety !

Even when or if we think we have nothing to worry about. 
It nibbles at the edge of our fingernails.

New symptoms are generally taken seriously in cancer patients even several years out from diagnosis.
Mind games ; I don't want to talk about. 

So overwhelmed by challenges, the bumpy road we have to travel - a cr@ptastic detour. We do our best to carry on normally. There are miles to go before we can feel reassured... there is no way out but through.
We each hold all the moments of our life in our grasp and what we make it of determines who we are. Every day we hold opportunity or excuses.  
So much I want to scream & shout ; really what is the point... A tumble of feelings that pile up.
Too many feelings to mention, plus there is a  caged high fenced off building 100m away. 

All joked aside. I feel like I am crumbling , the scanxiety is overwhelming for both my Friend and I, no doubt our spouses. I remind myself - 

He does not lead me year by year,
Nor even day by day;
But step by step my path unfolds,
My Lord directs my way.
 
Tomorrow’s plans I do not know;
I only know this minute.
But he will say, “This is the way,
By faith now walk ye in it.”

And I am glad that it is so,
Today’s enough to bear;
And when tomorrow comes, his grace
Shall far exceed its care.

What need to worry then, or fret'
The God who gave his Son
Holds all my moments in his hand
And gives them one by one.

Source unknown

Even if I knew that tomorrow* the world would go to pieces, I would still plant my apple tree.   I saw this somewhere yesterday on Facebook !

 May we all be strong, courageous and kind to each other xxx

PS - My husband & I will celebrate quietly over dinner date tonight.

*I won't get any results till Tuesday

 Tell me something good or happy you have experienced this week ?

Wednesday 11 June 2014

Papaw and Papaya Coconut Cream Parfait

Well-renowned for their tropical colours and juicy texture Australian Papaya and Papaw have a subtle sweet flavour.

I was sent one of each to use in a cooking challenge.  
 
Available all year round Australian Papaya and Papaw are quite different to each other. Papaya with it's orange-red coloured flesh and yellow-orange coloured skin, has a sweet flavour. It is pear shaped but larger.


Papaya and Papaw are easy to digest, great for children - low GI and packed with vitamin C .




Papaw , more distinct with yellow flesh and pale orange skin, is a rounder and larger fruit, more savoury in taste. The flesh is like Mango. Green Papaya, partners well with Asian dishes.

I admit the smell can be overpowering , especially as since Chemotherapy I am highly sensitive to strong smells.

My sons love all kinds of fruit just not in meals unless it's Hawaiian Pizza not even Apricot chicken tempts them. I asked them to try it in fruit salad but the answer was a resounding NO. 
I'll keep trying !

As I was away from home having Radiation I took the Papaw and Papaya to my adventurous friend's house.

It didn't take me long to de-seed, peel and dice the Papaw and Papaya. The Papaya was slightly bruised (it's on the bottom) , they need careful handling and this one had traveled a long way to get to me , then I took it another 150kms.

We paired some yellow Papaw with our Thai green curry chicken , on the side because her daughters are not fans of fruit in food either. I enjoyed , it cooled my mouth with the spiciness of the curry. Green papaw would go perfect cooked in a curry.

We used the remainder in a delicious dessert , created on the run.

250ml coconut cream#*
150 mls cream

1/2 papaw , 1/4 Papaya peeled, seeded, diced in 1 cm cubes
1-2 Tbs brown sugar
4 Butternut Snap Cookies, coarsely crumbled.  



*Remember to leave the coconut cream in the fridge overnight to chill (or put it in the freezer for 30 mins like we did)
# We added the rest to our curry.




Can you spot the smiley face ?
I know I'm not a Food blogger and my friends' daughter enjoyed styling the dessert - 
who was I to argue ? 
Since we were encouraging families to bring Papaw to the everyday table !

What would create with Papaw and Papaya ?

Disclaimer : I was gifted 1 Papaya and 1 Papaw to create my entry. It was a lot of fun and delicious. My friend's daughters loved it too.

Follow other recipes #aussiepapaya #aussiepapaw #aussiepapayapapaw

 

Tuesday 10 June 2014

Wordless Wednesday ~ They're Racing , Dragons

I just need to train my dragon husband to take photos of our team ! It was a lot of fun. Our team also did a marathon 17km paddle on Saturday 7th June ! In the heavy boat (as in not the newer lighter racing boats) with a choppy river current . Then 3 x 200m races Sunday.  

Friday 6 June 2014

Nutella French Toast and Strawberries

Yield to temptation - you know you want to - Nutella French toast !
Wholemeal bread , crusts on with Flake (I'm wicked but I did paddle 17km later)

Last month I made Strawberry French Toast with Fresh Strawberries.
It's a reasonable healthy choice breakfast .
I decided to swap for Nutella - after resisting it for so long...
Hey, life is too short.

Nutella French toast

Prep time: < 5 mins
Cook time: < 5 mins

Ingredients: per serve !


2 slices sourdough bread (or wholemeal/grains & nuts if going for a healthy option)
crusts removed  (or not or if you are feeling fancy cut it heart shaped )
2-3 tsp Hazelnut spread (like Nutella - moderation may be required) 
1 medium egg 
2 tbs low fat milk 
1/2 tsp Cinnamon
1/4 tsp vanilla bean extract 


1/2 tsp butter or 1 x spray oil -  

5 individual fresh strawberries, hulled, quartered 
  icing sugar to dust (and maybe a drizzle of maple syrup - well it goes with bacon)



Instructions 

  1. Lightly spray a small non-stick frying pan with oil or melt butter over medium heat. 
  2. Spread one slice of the bread with Nutella - Sandwich together both slices bread.
  3. Whisk the egg, milk, cinnamon and vanilla in a small bowl until combined. Dip each side of the sandwich in the egg mixture until it soaks in. 
  4. Cook sandwich in preheated pan for 2–3 minutes each side or until golden. Serve with strawberries and lightly dusted with icing sugar.
Serves: 1 (So make it over and over)

I like to add cinnamon and skip the sugar (I know ridiculous).
Cinnamon makes it smell like doughnuts divine and it is better for me. It tastes sweet too.


Trust me - it's good.
Edited to add - edition I made later.


 

Thursday 5 June 2014

A Winter's Fire and Tea

 26 down 4 to go

I'm looking forward to ...being home
snuggling with the one I love
and these guys




staying inside wearing PJ's as long as I want 

focusing on my running again 

getting fitter and stronger...step by step.
 

connecting with like minded people 
breathing deeply ...
If things don't go my way I'll reassess plan B.



sipping hot cups of tea 
 guzzling hot chocolate
reading by the fire 

soaking up winter sunshine 
bustling in the garden 
wearing a different scarf every day
 
roast lamb dinners 

belly warming soups
baked desserts

curling up with my iPad ...
wood fires

cosy blankets
 
what are you thankful most for on wintry days ?


Anyway...life goes on, continuing to both surprise and delight me (I can live without the disappointments and stress though). The journey is as important as the destination and I'd just thought I'd share it with you , too.

LIVE every moment ღ♥¸.•*¨`*. ¸.•LAUGH every day ღ♥¸.•*¨`*. ¸.•LOVE beyond words ღ♥¸.•*¨`*.¸.•
BE Grateful for what You have¸.•*¨`*.¸.♥☼


 

Tuesday 3 June 2014

Wordless Wednesday ~ Essential boyhood skills

Is there still a place for tree-climbing, mud pies, home made go-karts (yes we have one too), skipping stones and wheelbarrow races ?
He ain't heavy he's my brother !


What dangerous things do you let your children do ?