Saturday 31 May 2014

Farewell Autumn 2014, you have been…

intense.

The journey of these past 13 weeks has definitely had more twists and turns and bends than I (we) ever could’ve imagined.

Four days into Autumn I was diagnosed with a malignant sarcoma and a few other scary things that could be life threatening; scaring the heck out of us...

The road was overwhelming on so many levels, I've found it hard to always have to keep a brave face.

Yet ... not a day that goes by where I'm not grateful to awaken to another day , look into the faces of my seven year old sons and be positive and grateful that I can. I owe to myself to enjoy life as much as I can. I've missed them so much the last 5 wks.

I've made new friends ; in the absence of others that have disappointed or seemingly forgotten me. I accept that I'm hard work , I've come to cherish people who share conversations online and offline when I've needed someone to listen.

I apologise because I've have limited internet had a lot on and haven't had a chance to reply to all comments and messages. Days at a time were swallowed up by various appointments and scans ; five weeks so far of radiation therapy.

I had fun staying with my dear friend and her three gorgeous daughters for 4 weeks (3-4 weekdays) of 5 (radiation).

Sometimes it's very difficult to not let some people things get to me though I've been blessed on so levels by new friends and kindness beyond measure.

Now , I look forward to Winter , tomorrow we get up again and face it head on.




PS - I'm not blogging everyday in June -though I've enjoyed Claire's prompts.

Friday 30 May 2014

May 30: My favourite photo of the week from around the world ...

I've always been inspired by her poignant words. Her legacy will be the power of kindness and humanity she encouraged.



This resonates with the journey I'm on right now, too.



 

Thursday 29 May 2014

May 29 : Random Act of Kindness

Overwhelming kindness has been  filling my cup lately. Since my second cancer diagnosis , I have been blessed my many random and planned acts of kindness.


Week Five of radiation is almost completed ; time is flying by incredibly fast or not !

Wonderful things have filled my cup - not just gifts but also good conversations, a relaxing run in the park and being cheered on by spectators , a fabulous warm 'shrug' find at the Op shop thanks to the Volunteer and more !

  • Denyse's friend , who lives locally - gifted us a massage - a well timed , incredible RAK for my husband too! She read my story which Denyse shared.



I want to share the beautiful wise words of Maya Angelou - who passed away today- she wanted all people to believe we had the power of change within us.


"My wish for you is that you continue. Continue to be who and how you are, to astonish a mean world with your acts of kindness" ~ Maya Angelou




Blanket of care from a lovely friend and a cake !

A Warm Hug from another friend and she send me regular cards too

Box of sunshine
  • Two cakes , one from my SIL and the other my friend who gave me the purple & pink blanket... they got gobbled before a photo.

  • A lovely prize won with a huge stash of goodies.


Daily, I am astonished by the kind words, [mentions of] prayers, cards and messages , from friends and even acquaintances ;  there is no time for sadness when I feel cared for and comforted by bith friends and people who barely know me.

Remember there's no such thing as a small act of kindness. Every act creates a ripple with no logical end.

Scott Adams (1957)
Creator Of Dilbert Comic Strip
 

(credit )



It is never too late to make kindness a habit...{ignore the date below I just liked the list }

download it here
Though we have little practical family support at home , others have stepped up during a really difficult time for my family and I. Our church friends have provided two meals per week while I am away and I am so very grateful.

I posted five cards two weeks ago and it felt heartwarming as I posted them thinking about the recipients .

Hopefully, I've got a few RAKS up my sleeve too for some of my fellow lodge residents next week.

Have you felt the touch of kindness recently ?
Do you pay it forward ?




 

Wednesday 28 May 2014

May 28: Mammoth Man Cave

Or The new farm shed under construction



April 2nd 2014 6:52am
April 11th
or the Farm shed

May 26th - Hooray the Roof is on.

Duct tape anyone ?



 

Tuesday 27 May 2014

May 27: A blog I enjoy reading

A blog I enjoy reading is one that resonates with me, right now especially - Sammie loves to cook , run, cherish life and friends ; like me - she got cancer - twice. She is funny and her smile is as wild as her personality. 

The Annoyed Thyroid



Cancer doesn’t come with a guarantee. There’s no knowing if and when it will come back. All I can say is, that I haven’t got Cancer today. And that’s quite enough to be going on with! ...Sammie
Sammie is a breath of fresh air and she inspires me with her celebration of life. I especially love her passion for running and an out of control desire to bake. She is also going to run a Half marathon in Disneyland

One day we've going to run together - if I can keep up. Sammie's spirit and perseverance is awesome , she just ran the Sydney Morning Herald Half marathon !

There are many other blogs I enjoy too.
 

Monday 26 May 2014

May 26: Are ghosts real ?



Can I say with absolute certainty that ghosts are real, no one can or cannot !
No.
I can't recall any ghostly experiences personally.

My first ghostly experience was with Casper, the friendly ghost.

I can't remember which animated version I saw first.

Then who could forget ?





I do know that I loved the movie - "Ghost" , 1990 American romantic fantasy / crime thriller film starring Patrick Swayze  (Sam) , Demi Moore (Molly) , Tony Goldwyn, and Whoopi Goldberg.


 The plot centers on a young woman in jeopardy (Moore) and the ghost of her murdered lover (Swayze), who tries to save her with the help of a reluctant psychic (Goldberg) ...a charlatan medium who discovers to her shock that she has actual psychic powers when she is able to hear Sam, her first real ghost.


So what do you think are ghosts real ?








Sunday 25 May 2014

May 25: Fly on the wall

You can be a fly on the wall at any time/stage of history, where do you go?

I thought about this quite a lot.
Though I excelled in History at school there is no where I want to re-visit . I am drawn to personal events in my life instead.

I would like to be a fly on the wall at these events -

The circumstances of my conception (ha ha not doing the deed but the events leading up to it - family joke)

My birth - to see my 18yr old mum (and dad) welcome me into the world via a vaginal breech birth (with forceps).

The birth of ~Charlotte~ born still - because for most of the time I zoned out or spaced out on Pethidine and pain (emotional and physical) . I can't see the details and I want to. I am also curious when she was conceived - as the pregnancy came as a big surprise to us after 12yrs of infertility.

The conception of my IVF twins and their birthing in the operating theatre. I had a spinal block and flat on my back with a huge screen in front of me blocking the view. I missed their entrance via the sun roof. I missed almost the rest of that day - I vaguely remember seeing them that night - not clearly and it's one of the most important times in my life...

Right in the middle of the World Cup at 35 wks and 4 days. The Dr wore fake tattos.
The day we welcomed our little miracles  part 1
and part 2


Where would you go?


 

Saturday 24 May 2014

May 24 : The last book I read

Actually, I'm reading two and about 1/2 way through each book.

Book 2 in a Trilogy - Tris has survived a brutal attack on her former home and family. But she has paid a terrible price. Wracked by grief and guilt, she becomes ever more reckless as she struggles to accept her new future.
Technically, Divergent would be the last book I finished (1st in the trilogy).

Narrated by Death, this story is one that crawls under your skin and reverberates your soul with its images of Nazi Germany, friendship, and loss. The images stirred through Death's telling are so vivid, so wonderful, so tragic.
I admit I almost threw The Book Thief away after the first few pages because it is Narrated by death - very confronting.

"I could introduce myself properly, but it’s not really necessary. You will know me well enough and soon enough, depending on a diverse range of variables. It suffices to say that at some point in time, I will be standing over you, as genially as possible. Your soul will be in my arms. A color will be perched on my shoulder. I will carry you gently away."
 I'm enjoying the book and then I'll watch the movie I downloaded.

I have over 6 books to read over the next 3 weeks while I finish my course of radiation. I'm staying at the Acommodation lodge - thanks to bargain 5 books for $1 at a thrift shop.

I just remembered I am also reading Enid Blyton's The Wishing Chair to my boys .

I was a huge book worm as a child, teenager too. I read 6 books or more a week and was allowed to catch the bus to the town library.

What was the last book you read?

 

Friday 23 May 2014

May 23: I won't write about ...Schrödinger's cat

and Paradoxes .

I'd never heard of Schrödinger's cat till I read Sam's post - then it was like -  
What the ?
I didn't get it .




Then today, while driving home I heard an International writer, Jim Al-Khali , on radio ABC conversations with Richard Fidler at the Sydney Writers Festival speaking about paradoxes and he mentioned Schrödinger's cat.

Twice in 3 days
Did I miss the memo ?

Puzzling.


My head hurt after listening to it, well quite a few paradox.

The paradox is I am writing about something I said I won't.
Exactly.

I can't even begin to get my chemo brain around a little bit of it.

I also won't write about my outlaws marital relations or my sex life .
My finances or lack thereof ...









What is it that you would never write about?



Ps Did I mention I am getting a new cat and I'm naming her Schrödinger 'Bronte' after i said the name on house gate, yesterday !

 

Thursday 22 May 2014

May 22: First names

Would you thank your parents for your name if they spelt it so yooneekly just for the sake of it.
I think not.
Though it is my concern ?

Fair enough if it is cultural or back to ancient spellings. Kewl & kewt baby names ...only we all grow up and then spend the rest of our life spelling it out to people.

When at preschool there were 2 Samuels and a Sameul. A URL friend had a Samual.



I've been confused myself  when I've had chemo brain and about to write it down. I seriously got out something to check.

I was already wondering why people have to be so kre8iv when I came across an article in the Reader's Digest about the very issue.

We all know the substitution , rearranging of letters and additional letters does nothing to change the pronunciation of even simple names. It does make them seem harder to pronounce, let alone spell.


I am not one to judge but seriously I wonder why people want their children to stand out...whether they like it or not.

It is more like torture the name spelling to increase the 'torture' at school ...then every time they fill a form.


When it comes time to do the family tree you might find that 'branch' falls off when no-one can look up the name because of the unusual spelling. We had a bit of fun searching the NSW database recently but you can't much information unless the marriage is prior to 1960. A quick look at the database marriage names revealed mostly normal names too prior to 1960.
Unusual names are a different story but still have their problems.

Cillian ... is a Irish name but how do you say it ...KILL ian. One little guy, still 4yrs old , boldly stood up to the School Principal, during ASSEMBLY - telling him he'd said his name wrong. He was receiving an award :) too. Every time he got an award he had to do it at school and the kids teased him .

I discovered using the shortened version of my name with my very common marital surname xxx- at this site there are 15 people in the US ; BUT over 5000 using Patricia xxx.

In my large country town 30,000+ people - there is a lady  with same short name as me - we've had our medical files mixed up countless times (same Health practice and she is a Oncology patient too I think) . I continually tell them my address and DOB - they still get it wrong. She is older than me and I know where she lives now ...

  1. There are 1,713,313 people in the U.S. with the first name Patricia.
  2. Statistically the 12th most popular first name (I still don't believe it)
  3. Versions of Patricia:

    Pat
    Patsy
    Patti
    Pattie
    Patty
    Tricia
    Trish
I've been called them all - the last 2 my favourite (Trisha). Patty - hear me roar! I had a teacher who delighted in torturing me with that name. My friend was a Patsy !

My MIL shares my name full name (though it is technically her middle name but she uses it as her first name she usually goes by 'Pat'). What fun it was when she lived with us (yes - enough said). I didn't see that coming.


Who got to open first all my mail addressed to Mrs Patricia xxx ?
If there was any doubt in her mind or she was curious ?

It caused quite a drama from me sometimes !Then there was the Dr mixing up our files, the same Gynae - so the cervical biopsy/pap smear invoice sent to me she thought was hers. Long story but she had them running around in circles saying she hadn't had a pap smear in years .She never even considered it was mine.

Eventually they tracked me down - I still had to pay LOL.So I changed my name on several things after that to Trish.(ps is it weird my husband chose me having the same name as his mother?). It was in 2000 and 14yrs later I'm still confusing people with me first name choice and the official name , plus  it's different on my medicare and health fund.


Tough.

I saw a very unusual name tonight -  Boudicea and I'm naming my new cat, Bronte after I saw the name on a house (gate actually) while out walking today !

Today, I'm very thankful for my ordinary name - there was another Patricia today at radiation and we both got up when they called it. Not my turn though.

Ps When my Samuel was in the NIC unit the baby boy, in the crib right next to him, born 13 hrs (day) before, had the same first name and surname. Exactly - no middle names were used. The file had a sticker to say beware patient of same name or similar.




Thankful Thursday with A Parenting Life

Wednesday 21 May 2014

May 21: Journey to Radiation Galaxy

I began my radiation with a 160km journey (each way) for a planning meeting.

Not a beach or blue waters in sight on this journey but a girl can dream ...

 I'm not sure journey describes it -
“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
Ernest Hemingway
... because I don't know where the journey will ultimately end, except the radiation to my thigh will in 3.5 weeks.





The first step entailed having a CT (I think) scan and getting six tiny tattoos - so the Radiation goes only where it is supposed to!

My first inking , now I have six tattoos ; two on my left thigh, two on the top of my pubic area and one on each hip...six bluish/green dots about size of a freckle.

These tramp stamps permanent marks guide the therapists each day for precise and accurate positioning.

The first step in making the tattoo was to place a drop of ink on the skin, then the ink spot was scratched with a needle to draw the tattoo.It hurt ( a little )

Then they made a special hard blue foam cradle to position my left leg (angled like a frog's leg) and my right leg - straight and out of the harmful radiation beams.

Radiation Therapy uses a special kind of high energy beam; highly targeted and highly effective way of killing any cancer cells that may be hanging around too small to be removed by surgery. Invisible to the human eye , the beams damage a cell's DNA (the material they use to divide) to reduce the risk of recurrence. In comparison to chemo, the side effects - fatigue and redness / burns / blistering to the skin are minimal. I have to go in 4 -5 days a week for seven weeks (30 targeted sessions).

Radiation is pain-free and over in 5 or so minutes though positioning my body and setting up / lining up of the machine that takes an extra 10-15mins.

I was given a barcode'd card that I scan as I arrive each day , my patient number pops up, then I proceed to the change rooms, change into scrub pants put my belongings in a clean basket, go to the sub waiting area, sit and wait to be called to the waiting area.


Despite knowing the drill with my husband , the my first treatment visit was a bit overwhelming and I dropped a few tears when the social worker asked me how I was. I felt truly sorry for myself and those seated around me. Victim mentality ; pity party.



Now I find myself at the halfway point through my radiation therapy with 15 treatment days to go 3.5 weeks. I am okay. My leg is red and a little irritated only .I'm grateful there are few side effects.

Compared to chemotherapy it is a much simplier process but much more personally and emotionally invasive because they expected me to be naked from the waist down - I made a fuss - it was my inner thigh towards my knee and they really only needed to see the tattoos not my VJ comletely exposed for F's sake - I will not leave my dignity at the door - with my left leg in the frog leg position - because NO !!@ ! A pillow slip flipped here and there continually , was unacceptable.


So they agreed and left the room while I put my undies back on ; with great relief. A few times one or another has made comments about it being harder but whatever ! Still exposed and vulnerable , but not to the same extent that I would be without undies on...imagine the view with frog legs.



I had no idea that would happen at treatment planning or on day one - as it was implied I could put my undies back on. It wasn't an issue after I asked - despatately

After 10-15 or 30-45 mins, whatever it takes I'm called into the room that houses 'Machine 1' most days , I identify myself and sans pants - Not my undies - I lie down on my back, in my personalised leg cradle, on the table . I am given a blue ring to hold. My head lies in a foam head cradle.


I am re-marked with texta markers around my tattoo's -like four compass point marks and a template placed on left thigh (radiation site) - a series of texta dots.
Then they join the dots...well virtually. Everyday I must be in the exact same position.

The lights are dimmed / turned off ? once I've positioned myself on the bed, and green laser beams appear on my body.

The radiation guys and gals proceed to push and twist my hips and thigh or knee, flatten my flab , poke my sternum, bear hug me to shift me millimetre's or cm's till I'm in the required position . It feels awkward ; so meticulous are the technicians in ensuring that the measurements precisely match that of the computerised treatment plan.

They remind you that you shouldn't try to help unless asked as usually only millimetre adjustments are made. The worse feeling is the nervous belly rumbling and anticipation of a pungent gas leak.

Never the less , they demonstrate , professionalism with their skill, precision and patience - as two therapists call out numbers to each other from screens on each side of the room.

The dots I had tattooed onto my leg, hips, pubes play a role in this and a special thick gel pad is placed over the scar too so the radiation goes right to my skin. As one radiation assistant call out measurements, the other shifts the bed - moving and jigging it up, down or side to side in correlation to the measurements.

Once both are satisfied with the my position and the machine I am bid a cheery goodbye and left alone - with the bright lights turned back on , startling me often. As I zone out during the awkward positioning.

Everyone leaves the room while I'm receiving radiation treatment so they will not be unnecessarily exposed to radiation. Outside of the 'lockable door' , they watch on a monitor/screen outside the room. I think the rooms are lead lined bunkers.

There is no pain with the treatments but I do feel warmth and maybe my overactive imagination or for real a tingling sensation too.

Apparently , today, one door wouldn't lock so they couldn't use that room.
Picture me here ...this is position my machine finishes in , my leg cradle.

The machine rotates around me (up to 360 degrees) to deliver different beams as part of my specific treatment plan. It changes position a few times during my daily treatment and the bed moves once - again I've been startled a few times. Closing my eyes is better than keeping them open, I shut them to focus on my breathing instead of the treatment. I don't hear much of the buzzing and whirring because I remove my hearing aid to fit in the foam head cradle. I hear and feel my heart was racing directly under my still arms/hands ( especially sans boobs) .

Then before I know it (or rather hear) , the radiation assistants are back in - sometimes to re-check measurements and positioning. My treatment over for another day.

“If we are facing in the right direction, all we have to do is keep on walking.” – Buddhist Saying

Not being able to hear clearly around me is unsettling - as I can't wear my hearing aid in the head cradle.

 I occasionally chat with other patients (and relatives), all of us have traveled different cancer and road journeys to bring us into Radiation oncology ... most of us 100 km + . There is little opportunity to share their own adversity, adventures and triumphs.Maybe, over the next 3 wks when I stay at the lodge , located near Radiation suite.

I'm still one of the youngest I've seen in 3 weeks well except for the baby faced young radiation therapists / assistants. I saw children waiting for their radiation treatment when my husband was having radiation.

The radiation staff are kind and friendly , the nurses too. Though I barely see them.
Soft music of all genre is played ... I just remembered - the music - I didn't hear it yesterday or today whilst having my treatment.

It's funny how, in this journey of life, even though we may begin at different times and places, our paths cross with others so that we may share our love, compassion, observations, and hope. This is a design of God that I appreciate and cherish.”
Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience 

May 21: Write about a journey in your life

Tell me about a journey unique to you