Progress Report …………. Bitter Sweet

by Rachel on October 12, 2011

The Glamorous 70’s
‘My Parent Troops’

Monday October 10th


Scan Day   

So scan day has arrived, and today I try to take it in my stride. No instructions to read as I know them like the back of my hand. I drink the ‘contrast solution’, which resembles a certain type of bodily fluid that I’d rather not think about and tastes like what I would imagine the bottom of a fish tank tastes like.
I thought by drinking it out of one of Sienna’s party cups
it might taste better.
Maybe Not!

Still, I lock in my ‘iron clad taste buds’ and close my eyes imagining a warm summer night watching the sunset, and sip it down like a Mojito.

Meanwhile, my Fairy has her first day back at school and gives me her favourite bunny Maggie, as a good luck charm. Later she asks what a good luck charm is.

I collect up all my bracelets, charms, rings, and various good- luck dingle dangles and put them in my bag. The Brave Man thinks I’m crazy because my bag is so heavy, I should have a tag on it saying, “Bend Knees When Lifting”. Still they all come with me, it’s all part of the routine now! 

Maggie making a dandelion wish

As regulars, the Brave Man and I we were greeted like royalty at the hospital, even the guy who puts out the “Slippery When Wet” sign, knows who we are.

The scan went without a hitch, the injection wasn’t as painful as it usually is. I remind myself that I have had more pricks than an afternoon walking through a blackberry bush naked, so another one is not going to hurt.

As I lay in the massive doughnut shaped machine, listening to the computer voice telling me to “hold your breath……breathe……hold your breath.” I closed my eyes and imagined the faces of my Brave Man and my Little Fairy.

In the old days, I would watch intently the expression on the radiologist’s face, any nuances that would give me any indication that he or she has seen anything bad. I would listen and analyse every word, they would say…..

·         “Hello” = He didn’t say “Hi” that means he wants to be more official because I’m going to die.

·         Raising of eyebrows = Means he has seen something suspicious.

·         “Good Luck”  = That means, all you have is luck on your side because you’re in a lot of trouble.

·         “See you later” = Definitely means it’s all very grim. 

Did anyone mention eyebrows?

With the benefit of (unwanted) experience, I’ve learnt that all those things mean nothing, other than I suffer from delusional paranoia as well as cancer. It’s the Health Stylist that will tell you the ‘state of play’, not a radiologist that happens to raise his eyebrows a lot.  If the truth be told, he probably has a very bad case of wind which coincides with spontaneous eyebrow raising.

That afternoon, I go and see Dr Deb for some wisdom and meditation. I am preparing myself for the next day when I receive my results. Trying to stop my active little mind from going down the slippery dip of anxiety. We talk about my fears, worries and concerns. Surprising to me, one of the things that constantly pop into my head is about the Brave Man and what a ‘great catch’ he is. I keep having these visions of all these opportunistic women lined up at our front door, each holding a nice warm dish of chicken and tinned apricot casserole.
Back off ladies…. I’m not going anywhere!

Tuesday October 11th

Results Day

Sienna leaves for school, swatting me away like a fly whilst I give her a hundred kisses and cuddles. I leave a little note in her lunch box, wishing her a good day and that I can’t wait to see her when I pick her up.

We head off to the Health Stylist’s rooms, and I commence implementation of all the meditation and calming techniques that Dr Deb has taught me. All the while I am stroking Sienna’s favourite rabbit and jiggling my lucky charms. Now and again the weight of my handbag pulls on my shoulder bringing me back into, “But what if, what if, what if???” mode, but I manage to contain that and remain ‘alert but not alarmed.’

The Brave Man pulls into the church car park which is across the road from the hospital and I think how clever he is just to get that extra bit of spiritual support. But in my horror I notice he drives through the ‘No Entry’, which in my delusional state of paranoia and anxiety, I convince myself it has reversed my whole ‘good luck’ routine that I had worked on all morning.

So we sit in the waiting room, I always position myself so I can see my Health Stylist’s reflection in the door as he walks out of his office, so it’s not too much of an ‘anxiety explosion’ when he calls my name. At least I can see him coming. 

My Health Stylist, just got back from holidays. Tanned, healthy, glowing, looking gorgeous and that’s just what he said about me. Of course there was also the ‘progress report’ which he proudly announced as, “the scans showing no signs of cancer in my liver, lungs, bones, chest.”

In my glass half full way, I thought, “Why didn’t he mention my brain? What does that mean? Is he trying to gently tell me I have cancer of the brain?” I subconsciously give myself a big ‘Chinese burn’ and promptly snap back into relief mode. We all breathed out at once and chatted about holidays.

The relief of my good results were cut short, when that same afternoon my poor little Mum was diagnosed with throat cancer.

Life can be bittersweet.
2001
Me and my Mum

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Cartwheels and Monkey Bars

by Rachel on October 7, 2011

My Fairy having afternoon tea

Is it normal to be sitting up in bed with your 6 year old for a ‘sleep over’ together, me writing my blog, her reading a book called “My Mum Has Breast Cancer”?

1984
My brother, my wise dad and me

I suppose as the once un-famous (but famous in my eyes)…….philosopher (my Dad) ……..once asked, “What is normal?”

True enough, what is normal? I would love ‘normal’ so much but I’m not sure it exists for us anymore.
My Guardian Angel Troop’s book she wrote with her little boy
when she herself went through breast cancer.

By the way….. the book, “My Mum Has Breast Cancer”, was written by one of my beautiful troops along with her brave son and mum. Sienna pulls it out of her book shelf from time to time and reads it quietly to herself.
The Brave Man’s Home!

We welcomed the Brave Man home, with balloons and welcome home posters. After travelling 36 hours from New York via Abu Dhabi to home, he was rather tired to say the least. I was hoping that he may have picked up a few burqa’s for me as he stopped over in Abu Dhabi, but there was too much choice for his poor and weary jetlagged brain and he just wanted to get home to his girls.

As spring had sprung, so had a few rogue hairs on my head. Whilst I was grateful for the new growth, looking like I was wearing an ‘alfalfa skull cap’ wasn’t my idea of the Charlie’s Angel look that I was aspiring for.

Other than my ‘sprinkle’ of hair looking like alfalfa sprouts,
it’s also good for ‘fluid retention.’

Fortunately for me, one of my ‘besty troops’ noticed the unattractive predicament my head was in and offered her services to shave the ‘fuzzy wuzzies’ off. Coming with credentials such as shaving her horse’s bits and the boy’s heads at high school, how could I say no?
One of my ‘Besty Troops’ Narelle when she was just a kid.
She was known as giving a ‘mean number 1’ on the local boys heads at school!

And thank goodness I took her advice, no longer did I look like old Grandpa Womble after a quick ‘number 1’, I’m back to the ‘normal’ old chemo look. Which I must say, I’m ‘rocking’ rather well, just like Meat Loaf rocked the MCG on Grand Final day. Mmmmmm???
Making Blueberry Muffins with my Little Fairy

A few more weeks post chemo and I’m feeling better every day, still tired but managing to enjoy more moments with my little family.

Nurse Maree visits three times a week for my arm that is still swelling to the size of a small child’s leg. She wraps and massages and sends words of wisdom about what else I can do to ease the swelling. I have never met anyone else so dedicated to their job and their patients as ‘Maree the Magnifique’. Lately we’ve resorted to bandaging my arm at night and even though I look like a police attack dog trainer with the full suit of bandage on one arm, it definitely makes a difference.

Unfortunately the aching wakes me up at night and in my half asleep state, I manage to unwrap the 30 metres of bandage to the point where I wake up in the morning looking like I’ve had an all in brawl with a gang of mummies. Still, we try again and again.

School holidays have been a real treat and my Fairy and I have enjoyed lots of adventures. Together we drew up a plan of what we’d do each day, from bowling to pyjama mornings to ‘Sienna chooses anything day’. Secretly it was more for me and my fading memory, just to remind myself that it was school holidays so I wouldn’t get her dressed in her school uniform and drop her off at school.

Self Portrait
My Fairy and I having a pic-nic in the park.

We went on picnics at the park, which included hours of monkey bars, cartwheels and my little fairy calling out, “Watch me mum, watch me mum, watch me.” Of course I couldn’t keep my eyes off her and was so grateful at just being there to watch my little fairy being as happy as a lark.

Things weren’t so happy when one of those nasty little magpies swooped me and nearly flew off with my scarf in its beak. Ever so graceful I shooed it away, with my arms and legs going everywhere like I was swatting about 1000 flies at once whilst doing a rendition of MC Hammer’s rap dance, ‘U Can’t Touch This’. Not a good look!

After the commotion, I sat there thinking, I can just read the headlines in the local paper tomorrow, “Cancer woman has more bad luck when she gets pecked to death by a feral magpie.”
Bowling Concentration

We went to the movies, had our nails painted and made plans for her upcoming 7th birthday party. I savoured every moment and I think she might have too.
January 2009
My beautiful fairy nieces and my fairy

My 9 year old and 6 year old nieces, (Sienna’s cousins) stayed over and it was so wonderful to have them, such beautiful and loving little girls. They enjoy each other’s company so much and watching them play, was like reading a chapter from the Adventures of the Faraway Tree. So much imagination, innocence and adventure.
Breakfast In Bed
Mmmmmmmm

After I was made breakfast in bed by the three little angels, we set off to see the Tutankhamen exhibition.
Three little Tuts

The Brave Man had spent the night before explaining to the girls all about the history of the pyramids and the Egyptians and King Tut. They were captivated by the story and mesmerised by the history and somewhat amused with the similarity between my bandages (on my arm) and the mummies bandages. Yes, real, real funny girls.

The Cousins off toMeditation

After the exhibition we all went off to my weekly appointment with Dr Deb, where I go for my lesson on ‘Life with C’ and meditation. The girls were allowed to join in and we were all taken on a magic carpet ride into the world of meditation.

What a spiritual day we had!
That night, when they were going to bed, I heard the eldest one Billie say to my fairy, “You don’t feel like a cousin Sienna, you’re just like a sister.”
It’s been a great two weeks!

My Little Fairy says good-bye as she leaves for
school on the first day of fourth term

Five more sleeps until my scan……… I’m anxious but I can’t believe that there can possibly be a ‘time limit’ on the beautiful moments like the ones I’ve just had over the last 2 weeks. There’s too much living to do, and I don’t want to go anywhere!

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There’s no place like HOME!

by Rachel on September 25, 2011



My little Fairy dressed as Dorothy.
“There’s no place like home.”

Well 6 rounds of chemo done for the year! I started in summer time and now it’s spring, good ‘hair growing weather’ I guess.

So after about 26 rounds of chemo to date, so much surgery that only when I see a scar on my body, I vaguely remember what it was for. And of course the most exciting, ‘soon to be’ third new hairstyle. Who knows what will grow back. All I know is that, I just can’t wait to be ‘one of the crowd again’!

This last round has been really tiring even though my head wants to do so many things, my body is just not ready to party yet.
Celebrating the last chemo with latex glove balloons.

Celebrations for the last chemo were a quiet affair. My patient and loyal Brave Man was there as usual, along with some of my troops who came for a visit.  My Fairy was excited that her mum had finally finished treatment and celebrated by blowing up some latex gloves as balloons and decorated my hospital room with them.

My Health Stylist has booked me in for my scan for October 10th. Needless to say, I’m nervous as all hell but will be hopeful that the results will show I’m cancer free and we can talk about a ‘maintenance plan’. We’ll see……
If there’s ever a Google Olympics, sign me up!

So I’ll stay, vigilant with any symptoms, and will slowly work on getting my body stronger again. Lack of exercise over the last months, has not been good for my body. How I wish ‘googling’ was a sport, if it was, I’d be a fitness machine!

Even though I’ve finished chemo, there’s still going to be a ‘bumpy road ahead’. I think it always will be.

It’s hard though, with any little pain or ache, you think “it’s back”! You can become quite paranoid, the other day for instance, I had an ache in my stomach and for a split second it crossed my mind that it was prostate cancer…. See what I mean.
My Fairy proudly shows me how she’s been practising on the monkey bars.

Aside from fatigue, the last few weeks haven’t been too bad as I have been recovering from my last and final chemo. Apart from spending a lot of time in bed, I’ve also been able to get out to do some ‘mum things’, which makes me so happy not to mention my little Fairy. Last week she had her cross country at school, my lovely Troop friend picked me up and took me so I wouldn’t miss out. Sienna, who is one of the smallest in her class, was so determined to do well, that when they called “ready, set, go”, she put her little head down and ran flat out like a cute little hamster on its wheel. Her little legs were going so fast I thought she was about to take off. I’m so glad I didn’t miss out on seeing that.
Being able to take my Fairy and her little troops to the
playground for the first time in months, was a highlight!  

The Brave Man flew off to New York for 10 days for work. He’d been out the door for only 10 minutes and I already missed him like crazy. He calls me twice a day and that makes things easier.

Oh and just as I was ‘turning the corner’, feeling brighter and building enough energy to get out and even do a little ‘retail therapy’…. I just want to thank ‘that person’, whoever you are in the world! For stealing my credit card details, buying $5,500 worth of Malaysian airline tickets. Suffice to say, start unpacking your bags because the only holiday you’re going on is into the slammer!!!!!

I’m telling you, whoever you are, you don’t want to get a short, fat bald woman grumpy, I’m sending the big ‘C’ your way….calma that is!

Lots of new things have been happening, including teeth.

On a happy note, my Fairy has lost her 3 top teeth and 2 bottom ones all at the same time. We must look like something out of Oliver Twist, her with no teeth and me with no hair and a ’gloved hand’, no wonder people stare at us with much sympathy.
I know what your thinking… no it’s not my wig!

My Fairy also had her Book Week dress up day at school. She thought she was the ‘bees knees’ because she was wearing shoes with heels on them. Unfortunately she walked in them like she had just come from a long day at the races during the Melbourne Cup. But she had a grin from ear to ear. She went as Dorothy from the Wizard of Oz, I even got her a basket with Toto the dog, although he looked like he had rabies, and had a look on his face that he was desperate to be euthanized. She loved him nonetheless.
My Fairy with her little troop friends.

I went along to my Fairy’s parade at her school assembly.  So I didn’t have to climb the stairs, I was kindly given the privilege of sitting with the teachers. All the kids were dressed up along with the teachers, everyone was having a lot of fun.

So as all the teachers went around the big hall, calling out to the kids and parents who they were dressed up as, it finally got to me, (clearly I didn’t dress up) but sometimes with a scarf and baggy clothes, I can be mistaken as a pirate. So as an awkward silence fell over the big hall and I did my uncomfortable crooked smile, the proceedings carried on. Needless to say, I had great empathy for Captain Hook as he walked the plank.

Blue Angel Nurse Mandy.
A beautiful lady a beautiful person.

And now I have about two weeks until I head down to the hospital for my scan. I’ll see Noel the Radiographer, he’ll ask me as usual “How are the kids,” and I’ll remind him I’ve only got one. He’ll have trouble as usual finding my veins and then tell me the story about how he was taught by an old friend, ‘a surgeon’. Then after a few attempts, he’ll call someone else in. Yes, it’s ‘cancer ground hog day’. 

Until then, like my little Fairy during book week, I click my heels three times and say, “There’s no place like home”, and there’s only one more sleep until the Brave Man comes home.

Five and a half years before……

So if you were not in the mood for reading another blog last time I wrote, you would have missed the start of ‘Where it all began’!

You missed, the Ken Donne kaftan that looked like it was designed for a pregnant Grandma, Kerry Packer’s Funeral, the half an hour wait that turned into the 4 hour nail biter……

Day 1

Friday February 17th 2006

Gary and I headed to my Doctor and she confirmed that the mammogram and ultrasound had found something abnormal. She mentioned that it could be what is known as DCIS, she went on to explain what that was. I think I zoned out at that stage and became fixated on the look of her toe nails that were poking through her sandals. They looked like they had been gnawed on by a hungry monkey, not to mention how hairy her legs were…. I really wanted to give her the number to Jim’s Mowing, but thought that would be inappropriate given our discussion.

It’s funny what you remember during those moments your life is about to be turned upside down. She organised for me to meet with a Breast Surgeon and to have further tests on Monday.

We spent the weekend doing our normal family things, I remember it being a beautiful sunny weekend and we spent most of it outside. Still not knowing what it could be, I just wanted to get through the next few days and get back to our normal life.

Day 4

Monday February 19th 2006

The main thing I remember about my biopsy was being asked to sign a form that basically said, “If we make a mistake, you won’t sue us”, (yes that made me feel full of confidence.) I remember the sound of the device they used to obtain the biopsy, a bit like a nail gun, yes so relaxing!

I focused on the ceiling above and hummed in my head Sienna’s favourite tune from one of her toys, now and again I felt the tears I was trying so hard to hold back, slide down my cheek.

I just wanted to rewind back to 5 days ago and wish this nightmare away.

(5 ½ years on, I can say that I’m learning to live with it, the anxiety is still there, but my enjoyment of life is far greater than it ever was and I’m grateful for that)

Day 5

Tuesday February 20th 2006

It was the day to get my results, because we weren’t seeing the Breast Surgeon until 5pm, Gary went off to work and I spent the day with my little fairy. Still it was all surreal, and I didn’t quite know how I should feel, anxious, upset or it’s ok, life will be back to normal soon. Little did I know……

My mum took care of Sienna as I headed off to meet Gary.  I remember Sienna crying so hard when I was leaving and I felt so heartbroken for her, she just didn’t want her mum to leave, and believe me I didn’t want to leave either. 

My breast surgeon, I was told, was the best in her field. A strong lady who’s manor was very straight to the point with no time for any ‘fluffy stuff’.

From the time we walked into her rooms, Gary and I never let go of each other’s hands, we didn’t say much to each other, but held on tight.

She put my scans up on a light box and pointed out a strange white area that she said was very “worrying”. I wasn’t sure what she meant so I asked her. She had an expression on her face as if I should know already and said, “Well it’s breast cancer.” I stared at the books on her bookshelf, I can’t remember the titles but I remember that they were very neatly filed. I didn’t quite hear what else she said other than, “have you got any questions”.
Remember this cute scene from Beaches.
Such a beautiful movie about true friendship.
Rated ‘BYEO’
Meaning ‘Bawl Your Eyes Out’

I had never heard of anyone having breast cancer, in fact I hadn’t really known anyone who has even had cancer apart from that woman in the movie Beaches which starred Bette Midler and Barbara Hershey. And that sure wasn’t the “happily ever after” ending that I remember. The only thing I could think of asking was, “Am I going to die?”

I can’t even recall her answer, but I guess it was no because I’m still here.

The next step was more tests, she said she just wanted to check if any of the cells had “wandered off into any other parts of my body.” She explained that because they had found infected lymph nodes, I would commence chemotherapy the following week or she would cut the lump out.

I remember her and her nurse commenting on how calm I was and all I could say to them was, “You’re telling me all this, but it feels like you’re telling me about another girl, not me.” I couldn’t cry, I was so convinced that they were mistaken.

Gary and I sat in the park opposite the hospital and tried to absorb what we had just been told. We were numb with shock and our hearts were breaking. I wanted so much to cry but tears wouldn’t come.

Day 7

Wednesday February 21st 2006

Today I went for my full body bone and cat scan. As I lay there for 45 minutes whilst the machine was an inch away from my body, slowly scanning all my bones, I again sing in my head, Sienna’s favourite little tune. My little mind voices are squabbling with each other, “I have cancer”, “No you don’t”, “I might die”, “No you won’t”, “Don’t say the ‘C’ word”, “Cancer, cancer, cancer”, “Stop it, it’s just a bad case of tonsillitis.” From then on, no one was to mention the ‘C’ word, it was just tonsillitis.

Finding my beautiful Gary having a quiet cry on his own tonight, broke my heart even more, I cried and things started to seem a bit more real.
It would be no suprise that this was my cat named Sylvester.
May his little whiskers rest in peace.

We still had another 24 hours to wait until we found out the full extent. I couldn’t pray to God, but I did send a special message, to my sister, grandparents three dead cats, Henry the dog and my twin fish Ernie and Bert, hoping that somehow they could hear me.  
Ernie and Bert look a like

That night I took a sleeping tablet, Gary found me asleep sitting upright on the couch, with the phone in one hand and Sienna’s baby monitor in the other, clearly I didn’t read the label, “take sleeping tablet and go straight to bed”! He put my pj’s on me and tucked me into bed.

We held hands all night and when I would wake crying, he’d hold me even tighter.   

Day 8

Thursday February 22nd  2006

In the morning I had one last test, an ultrasound of the stomach. How I wished so much this was all a dream, and the ultrasound was to look for a baby’s heartbeat.

I remember it being beautiful sunny day as we drove to my breast surgeon’s rooms, and I thought this was a good omen for good results. My little mind voices were playing absolute havoc with my mental state and my stomach was doing more back flips than a Cirque du Soleil dance troop. “It’s going to be ok”, “No it’s spread everywhere”, “Stop it you don’t know, it’s going to be ok”, “Well at least to a couple of organs”, “No it’s not my destiny”….

The first thing my breast surgeon said to me as she walked in was, “Good news”.

Henry our loyal Faily Dog.
I wanted to cry and laugh at the same time, kiss her, kiss Gary, kiss myself. Ten minutes before I was sitting in the waiting room crying, convinced that I was going to die. Positivity wasn’t my best trait at that point.

To know that there is hope after you have been told something very, very, dark could be about to happen was unbelievable. Although our ‘journey’ (intensely dislike that word) was just beginning, I really thought the ‘hardest part was over’.  

I was told surgery and then chemotherapy. The first thing that popped into my head was, imagine all the weight I’m going to lose and I’ll get to fit into my skinny jeans again!

Before I went to sleep that night, I quietly sent a message to the stars. Thank you Megan, Papa, Mang, Grandma, Grandpa, Mepsy, Pebbles, Sylvester, Henry the dog and Ernie and Bert, maybe they did have something to do with my good results? Who knows?
‘Last Supper’, March 2006.
Celebrating love and friendship with my troops, just before I commenced my first chemotherapy.

Next step, protecting my fertility!

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Back to where it all began

by Rachel on August 28, 2011

In a weeks’ time, it will be all over. Six  rounds of chemo over the last 5 months all done and dusted! I’m told no more than six treatments otherwise my heart will explode out of my chest, or something along those lines. Even though my ‘Health Stylist’ (oncologist) mentioned the words “may be”, last time I saw him, I’m still going with the 6 round option!

I think I can, I think I can!

So as my little body trudges up the hill of cycle six, like The Little Red Caboose that kept saying, “I think I can I think I can”, I find myself saying thank you to this little body of mine. It has weathered such a difficult storm for so many years. Rather than curse it for making me so sick, sad and so dreadfully unattractive, like I have done so many times before. I have to say thank you for keeping me going. You’ve been a faithful and brave little engine!
1975
Me and my brother
Actually, I’ve come a long way over the last five years, in fact, we all have….. the Brave Man, my little fairy, my family and my troops.
2006
Mother’s Day Classic
Team ‘Go West’

So it got me thinking…. where did it all begin……. When did Gary become the Brave Man? When did my friends become the Troops? When did I become the person who “didn’t sweat the small stuff?”

2003
A Happy Bride and the Troops To Be

December  2005

Gary and I hadn’t long celebrated our 2nd wedding anniversary and our first year of being parents to Sienna.

2005
Gary and I
A Life Before

What a ride being new parents! Like some of  my girlfriends, I tried diligently to follow the Gina Ford “method” with her ‘Contented Baby’ book, only to find by the time I had successfully got ‘routine one’ down pat, I was about four routines behind schedule.

2005
A working Dad

And whilst my girlfriends were off down the street having their first skinny latte with baby contently asleep in the Bugaboo which was parked neatly beside them, I was still trying to work out the controlled crying routine. Only to realise an hour later and many tears shed, that the controlled crying is done on the baby, not the mother.  For me, the ‘Contented Baby’ became the ‘Demented Baby’.

I drove myself and Gary crazy with the routine madness. In the height of the madness, it would take five hours to get Sienna to bed at night. By the time I put the aroma therapy candles on, the calming music, the baby massage and hummed six different versions of ‘Mumma’s going to buy you a Mocking Bird’, it would be time to get her up for her next feed. I was making ‘One who Flew over the Cuckoo’s Nest’ look like a love story.

But, I loved it, I loved being a mum, I loved having this little bundle of sweet smelling baby to cuddle and nurture.
2005
The sweet baby smell
CHRISTMAS 2005

“Is there a Doctor in the House?”

We had such a beautiful Christmas day in 2005. Spending the morning preparing a banquet of food, sipping on the traditional family Bloody Marys, whilst Sienna played happily at our feet with enough toys to keep a small third world country of children happy for many decades.

Our theme that Christmas was happiness, health and positive thinking in 2006. The day was pretty uneventful until mum choked on a piece of pork crackling and had the ‘Heimlich manoeuvre’ performed on her by one of our guests, who fortunately was a doctor. Not only did this fill us with a bit of excitement, it also thankfully removed the crackling.

2005
A Happy Christmas

In hindsight, maybe this was setting the scene for what was going to be the year ahead……..
Life’s little road bump…..

2006 brought much planning, I turned 36 and Gary was 39, we had been quietly thinking about a little companion for Sienna. It was exciting times, planning for our growing family. I would neatly pack away all the clothes Sienna didn’t fit into anymore, in the hope to use them again someday for our next baby. I ‘journaled’ her every move to an inch of her life, so as I would never forget a thing, yes I know a little ‘obsessive compulsive’, but I loved her, just loved her so much and I wanted to be the best mum I could be.

2005
Sienna 1 month old
Loving her to bits!

It was the end of January 2006, I was in the shower day-dreaming about the excitement of having another child, wondering what the “Gina Ford” schedule would be with two on the go. Maybe a sedative?
Would the next one be a girl or a boy, what names would we think of, Charlie? Angus? Laura? Lucy? Lump? Lump? Lump??????? And that’s when I felt it……. a lump. “Mmm, this is strange, I’m not sure if it’s meant to be here.”

All of sudden, I’m out of the shower and sitting two weeks later in a waiting room with  women 20 years my senior, watching  Kerry Packer’s funeral on the television.  As I watched the funeral guests sing C’mon Aussie C’mon in honour of Mr Packer, I made a mental note to myself, …..Don’t’ go to mammogram on your own in future…. Don’t watch a funeral while waiting to be called……. and for god’s sake….. Don’t let bogons choose your music for your own funeral!

As I was contemplating all this, I heard my name called, I wasn’t that nervous, more annoyed that this was taking time and I wanted to be back home with my baby. I was asked to put on a very unglamorous kaftan looking dress, which resembled something that Ken Donne had designed on magic mushrooms in a size that would comfortably fit three Pavarotti’s. I know, I know that sounds vain, but I always like to look good when I’m going for my ‘maiden’ mammogram.
As time ticked away, what was becoming annoying, suddenly became a worrying ache in the pit of my stomach. I couldn’t call Gary because I had to wait in a little cubicle about the size of a broom cupboard with a sign that said “Switch off Mobile Phones”.  I would come in and out every so often as the nurse kept calling me back to repeat the mammogram.

Finally I was able to get changed and go back into the main waiting room. By then there was just me and another lady. John Howard was giving ‘sad face’ to the cameras at Packer’s funeral. There I waited again, to be called for the ultrasound. What was supposed to be a half an hour procedure, was turning into a four hour ‘worry fest’.
As I was having the ultrasound, I remember thinking to myself, this isn’t right, the ultrasound should be on my tummy looking for a little heartbeat, not on my chest looking for a lump. I closed my eyes and imagined that they were looking for a baby.
The room was quiet and all I could hear were the clicks of the machine as the sonographer took her measurements of what she could see on the screen. She called in a doctor for his opinion. His focus was fixed intently and without blinking, he asked me, “Do you know what this could be?” Stunned I just lay there and thought, “this is why she asked you in here Mr Brainy, not only that, would I have just spent 4 hours sitting here in an ugly supersized 1970’S kaftan if I knew what this was?” He said the image he could see appeared to be ‘suspicious’ and advised me to go straight to my GP and he would forward on the report. Still to this day, I’m not sure why he asked me, if I knew what it was.
Walking out of the hospital to go home with the words “suspicious, suspicious, suspicious” ringing in my ears, I could feel my heart beating hard in my chest.

As I drove home, the only thing I knew right then, was I needed to be home, I needed to be with Gary and Sienna where things were safe.

What I didn’t know, was that my life, Gary’s and Sienna’s life was about to be changed forever………..

2005
Self Portrait
The Three of Us

To be continued…….

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On the Home Straight!

by Rachel on August 19, 2011

“Hi hoh, Hi hoh, it’s off to chemo I go!
When this is done, I’ll only have one!
Hi hoh, Hi hoh, Hi hoh, Hi hoh..! “

It always feels like I’m getting ready for a ten day holiday a few days leading up to chemo. Getting the house in order, making sure all the ironing and washing are done, including finally doing the hand washing that always lingers at the bottom of the laundry basket, fresh sheets on the bed. Ok, ok, so I can see the “Brave Man” reading this thinking, “oh she’s full of it, ironing, making the bed???”

So I say…, “so what if the ironing lady and the cleaners do it, I still ring them and organise it.”

Anyway, it’s definitely not the kind of holiday I would prefer, there’s no warm sunshine, banana lounges or welcoming cocktail. Or is there?

I pack my bag and take a few comforts from home, my own pillow, home knitted shawl, and family photos. I put a little mascara on the remaining eyelashes and find a big scarf I can wear around my neck that will cover up the ‘cummerbund of fat’ that seems to be accumulating around my neck. It’s like a built in bean bag for the head. Comfy I guess, but not the most attractive look I’ve had!

Like every time that I leave for chemo to stay overnight in hospital, I choose a little present to put under my fairy’s pillow and write a promise note that I’ll be back home tomorrow. I also leave my fluffy dressing gown that she loves to cuddle up to when she sleeps. I tell her that even though she can’t see me, I’m always with her and sending her my love and kisses through our special rainbow. She likes this and it’s always comforting for her, to know mummy’s always there.
August 2011
A little note from Sienna left on my pillow
Sienna goes to school and the Brave Man and I go to see my ‘Health Stylist’. The Brave Man parks in the church car park, and we hope this is a sign that we might get some positive vibes out of the church door as we head into chemo across the road. Either that or we’ll have a big fat Brighton Parking fine smacked to the windscreen when we come out. Yes, it’s true, just because you have cancer doesn’t mean you’re immune to even more bad luck.

My ‘Health Stylist’ is running on time today, which is unusual for him. I always wonder how he does it, day in and day out, delivering life changing news to people. Having people relying on him to save their lives, including mine of course! And then going home to his own family and not bringing his day with him.

Ever so welcoming we walk into his rooms. The “Gary’s” greet each other with a solid hand shake and make their standard jokes about me wanting to book holidays and reminisce about the one I booked where we lost $5,000 because I got sick again, yes that was really hilarious,  “stupid party pooper cancer” I say. Then it’s onto ‘the wives’ spending too much money on sensless shopping.  Which I personally think is a positive sign that we’re both well enough to shop. Not to mention our selfless effort to shop the world out of the global financial crisis! No pat on the back for that I guess, nor any mention of nominations for a Nobel Peace Shopping Prize.

Anyway, even though I’m under strict instructions not to book a holiday, I have worked out a way to bring the ‘holiday’ to us…. more on that exciting news later!

My ‘Health Stylist’ taps my back, listens to my heart and lungs and we’re done. It’s still not resolved as to why my breathing is so laboured, but I guess having your lung wripped out, scrubbed and put back in with talcum powder (twice) not to mention fluid around it and lack of exercise, doesent’t help the ‘sitcho’ (situation). Oh, and the litres of chemo that goes through your system which is equivalent to, what I imagine as swallowing a bottle of Draino or two. Yes it all takes its toll on this little brave body of mine.

So it’s one more to go, and I’ll just pretend I didn’t hear my ‘Health Stylist’ say the word “maybe”. Then another scan. My friend mentioned that I might want to consider some gentle arm exercises just to build up the strength to wear all my lucky charm bracelets to scan time. Not a bad idea I think!

If my “Health Stylist” announces after the next scan that there’s no sign of the big ‘Caboranara’. I will officially crown him the ‘CANCER WHISPERER!’

With a hug and a reassuring smile, we say our goodbyes until another three weeks, and make our way to day oncology.

I’m reminded of the time I’ve spent fighting this thing, as the ‘Blue Angel Nurse’ puts my medical file beside me. I notice how thick it is, not to mention being marked in big red writing “Volume 2”….. I’m determined not to have a Volume 3!

It was a quiet day for me as the ‘health nectar’ filled my body … That was until they called a little code ‘baby blue’, just a bit of chest  tightening, breathing difficulty. More or less it felt like an out of body experience. The “blue angels” came from everywhere, hovering around like a bunch of concerned mothers helping a child who’d just fallen off the monkey bars.  I went on the oxygen, and was given several injections of something that made me sleepy. All was ok and after a while I lay back and listened to the ‘health nectar’ pumping away once again. I closed my eyes and went back to imagining the holiday I was pretending to be on.
“Blue Angel Jo” brings the
Sunshine and the Welcoming Cocktail

My Banana Lounge Awaits Me
The hospital was busy today and the rooms were full, I was told I had to share a room, I said I would rather go home and teared up like a spoilt child. Not sure where that all came from, it was quite embarrassing in the end. The “Brave Man” just told me that I had been lucky enough to be in business class all this time, and it was ok to spend just one short night in economy. He’s right, yes he’s always right. So I stayed.

The curtain was pulled across and I felt comfortable hidden behind the ‘burqa’ like barrier. It was ironic that I was embarrassed to show my bald head to another bald headed woman.    
August 2011
Sienna’s view of her mum

The “Trooper Parents” picked up Sienna from school and dropped her off at the hospital. She sat on the bed as I listened to her read her school books, whilst “The Brave Man” worked away on his Ipad, tapping out emails.

I had a very inquisitive nurse on tonight, wanting to know my background, how I discovered ‘the lump’, was there any history in the family, how did my husband cope. I understand her wanting to know the history, but after the 100th question I felt like I was on “who wants to be a Sickenaire” and I was about to tell her to “phone a friend”. Her last question to me was, “what was my prognosis”, to which I answered, “pretty good thanks”. I’ve never been told nor have I asked what my prognosis is, I don’t know that would change anything, I just want to live no matter what.
Fortunately she spied the maltesers that I had bought for Sienna as a treat, and asked if she could have one, I was relieved that she was feeling so comfortable in my prescence, so I told her to take the whole bag.

Sienna and I sat up in my bed and ate dinner, thanks to our friends at the Pantry. As we enjoyed our culinary delights, we talked about what we did in our day. I enjoyed the moment very much. I think Sienna did too.

 

“Hi hoh, Hi hoh, it’s off to sleep I go
With one to go, I’m better I know
Hi hoh, Hi hoh, Hi hoh, Hi hoh..! “

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A Sweet Glistening

by Rachel on August 3, 2011

The ‘Chemo Cave’ is not as bad as you would think. I have a beautiful room, full of air and light and when the windows are open I can hear the birds and feel the sweet breeze on my face. That, with the quiet hum of the circular saws and methodical nail guns that echo throughout the construction sites surrounding us, is a meditative paradise.

My room is full of inspiration, with photos, flowers,  drawings,  and notes everywhere which make me so happy and keeps me going. The Brave Man has set up a fancy sound system, so I get to listen to our favourite French music, jazz and others, which takes me back to different happy times in my life, as only music can do.
2004
Me and my Dad on my wedding day
Today I listen to Blossom Dearie, music my beautiful and kind Dad introduced me to when I was a kid.
As I lie here in the chemo haze and fuzziness, life’s thoughts drift in and out. Naturally most of  them about my little fairy and the Brave Man’s future and hoping like anything, that I will be there with them. I think about what I can do now, so that Sienna will always remember me if anything was to happen. Putting together letters, photos, cards, stories about what I was like when I was little, so memories don’t fade.
Don’t get me wrong, it’s not a sad thing to do, it’s nice to look back and see what a lovely life it has been.


WISDOM
  
My Dad a Wise Man
One thing my mind distracts me with is, what would I like Sienna to learn about in life. How will she learn to value others, how can I teach her the wisdom to weather life’s inevitable challenges. To get through them and use the experience to be a better person. Will she reach her full potential as a beautiful and compassionate person that I know she will be?
How does this all happen if I’m not around?
Don’t worry I’m not going down the spin cycle of ‘woe is me’, just a few little questions and thoughts I have to run by myself.
The Brave Man and the Fairy
Happy to be home from cycling
Of course, there is no doubt that the Brave Man will be there by the little fairy’s side. He’s a wonderful father who, with his own beautiful and loving nature, will continue to  pass on everything that’s good within himself to Sienna. But what if he’s a husband grieving?

Someone turn that ‘spin cycle’ off!

So a few weeks ago I decided to invent the ‘Glistening’, a non-religious christening!
As Gary and I are not religious, we didn’t go down the path of ‘god parents’ or a christening. God, Jesus, second comings are just not part of our belief system, although we do gratefully accept any spare prayers from any denominations coming our way.
I did ask Sienna one day who was Jesus, and she replied, “You know mum, you say his name all the time”. “Jeezuz, I thought, she doesn’t miss a trick that kid!”
She did also, tell me that God worked at her school and even more impressive, was that God was a woman! Now that’s a perk of a private school I wasn’t aware of.
SUPPORT
“It takes a village to raise up a child
African Proverb
I saw the Glistening as a lovely moment for a small gathering of family and friends to come together to show Sienna the love and support they have for her, now and in her future.

Of course, no  Glistening would be complete without Fairy Godmother’s!
The choice of Fairy Godmother’s were easy. My two beautiful besty troops’, who hold amazing qualities that compliment each other. They’re such unique and special people, and we know that as Sienna grows and spends time with them, she’ll be lucky enough to see what we see too.

Fairy Godmother’s
That and the fact they’re both very stylish, clever and are a good judge of character when it comes to husband choice!
All bases must be covered!
NURTURE
1970
Me and my mum, the nurturer
Having ‘other mother’sor Fairy Godmothers, who Sienna could always turn to in times of need, happiness or advice, is something that I have always wanted for her. I know that they will always do what they can to keep her safe, happy and nurtured.
INSTINCT
My stomach churns at the prospect of her being sad and missing me, and me not having my mummy arms around her to say, there there”.
I remember my own mum telling me, the hardest thing about when she lost my sister Megan, all those years ago, was not being able to put her arms around her and tell her that “everything  would be ok”.  I understand now, that terrible heartache my mum must have felt. There’s nothing like the natural instincts and protection of a mum for her child.
1973
Sisterly Love
 

These thoughts are just passing thoughts that sometimes get caught up in my ‘spin cycle, leaving their little heart ache footprints as they just wander through.

So with the chosen Fairy Godmother’s , the celebrant, the cake and the designer confetti,  the Glistening was on!


The Glistening begins with the candle lighting
The Glistening Cake

Full of all the magical moments big and small including the knowledge and comfort that Sienna will always be looked after,whether I’m here or not.
                                                                   ‘Glistening Treats’

As I’m not up to my normal ‘retail rigour’, I decided to ‘online shop’ the whole Glistening, which felt great! Even the courier was glad to see me, and asked, “where you been ‘Ratchel’, I not see you for long time”?

Wishing Tree

Glistening Flower Cake
made by Aunty Kim
Sienna and I spent the days before making a Wishing Tree for guests to hang their wishes on for her future. She wrote her own personal wish for each guest, and each of her guests in turn, wrote one for her. My favourite being, “I wish Sienna could fly.”
Sienna’s Wish
Making it official

So the Glistening’s done and Sienna’s got her Fairy Godmother’s …… what next?? Renewing the vows?

A happy fairy
I still like the old joke about, the agnostic, dyslexic, insomniac who sat up all night, wondering if there really was a dog?

I think that’s me! ……. No, not the dog.

Ps Thanks my friend Rachel Devine for capturing all the beautiful moments with your lens.. 

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The Glamorous Side to Chemo

by Rachel on July 29, 2011

July 28th Visiting Mummy in Hospital
Being resourseful with a latex glove, to have some fun!
Playing Glove Tennis with Dad!

So I have just ticked off my fourth cycle of ‘health nectar’ for the year, only two to go! Right in time for one of my troops birthday and spring. A good time to grow my hair back!

After I leave the hospital the next morning, I’m full to the brim with so much fluid from litres of drugs. I do a final inspection in the mirror and hope that the makeup I’ve put on helps me look a little human. I feel like I’m staring into one of those crazy mirrors you see at fairs and theme parks, my face looks like someone has just put a pump in my ear and pumped up my face like the GoodYear Blimp, with five little neat chins hanging off the end.

The physical changes that happen to your body when you go through chemo aren’t the best for your self-esteem. Losing your hair is hard, especially eyebrows and eyelashes which are the very things that give you the frame to your face and make you….you. I’m clinging onto my remaining lashes and brows for dear life and as every precious one falls out, I say a little farewell and am overcome with a tiny sense of loss.

As for the weight gain arghhh, I feel like a life size cabbage patch doll on steroids, not the cutest sight!


Cabbage Patch Doll
Me minus the hair!



I have recently discovered I have Lymphedema, which I refer to as “fatis armis’.

Because I had lymph nodes taken out of from under my arm back in 2006. Any trauma on that side of the body, including the surgeries I had last year can cause swelling and because there’s no lymph nodes to push the fluid through it just sits there.

So know I have ‘wankles’ (fat wrists) as opposed to ‘kankles’ (fat ankles), that will probably come next. I feel sad because I can no longer wear my wedding rings, so I have them on a chain around my neck.  

There’s a new addition to the ‘medical entourage’, Maree!

Maree’s a nurse and a Lymphedema specialist. She is determined to fix me and comes over to massage the fluid out of my arm and hand give me exercises and introduces me to the ‘glove’. Mmmm.

She was here until 10pm last night massaging, squeezing and pushing the fluid out of my arm around to my back, where the other lymph nodes can collect it and take it away to the rest of my body.

As I get into bed and stare down at my elephant woman arm with the sleave and glove pulled tightly over it, I think of Michael Jackson and his glove, I suppose it’s not that bad.

The Glove
So much prettier when you take a photo of it near
a rose, don’t you think?

No one ever told me cancer would be this glamorous!


To pep me up and help cope with the physical changes that you go through with chemo.  I once attended what the Brave Man described as ‘wig school.’

It was when I was first ill 5 years ago and the chemo nurse suggested I give this a try. It is a volunteer based workshop that is sponsored by the cosmetic industry for people who have lost their hair, eyebrows and lashes, yep the whole kit. A well-meaning and well run workshop, just “not my cup of cino!”

Being a little nervous Nancy, I had to take my Besty Troop with me, just for a bit of hand holding.

1987
Last Day of School
Tiffy and Me
Friends for 28 Years

I think it lost me when the lady,  in charge, gave us some advice on turban wearing. I was taught that if you wear a turban, with a shoulder pad in the top, it will  give you “that extra bit of height.”  Also, just for that added ‘va va voom’, “attach your favourite clip on earrings” to your turban rather than your ears because the ears can become quite sensitive.

Needless to say, I have perservered with scarves, unfortunately, wigs make me look like a very unattractive drag queen and turbans with shoulder pads, well….. it’s just not a good look!

I know it’s still me on the inside, it’s just the outside that’s hard to cope with.
But the ‘Brave Man’ still brings me home flowers’ and my little fairy brings me home her drawings of a mum with bright blue eyes and wearing pretty dresses, and a colourful scarf.

July 2011
Sienna and Billi save some of their own
hair for me at the hairdressers.
Thought I might stick it to the front of a
peaked cap a s a fringe?

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The Progress Report!

by Rachel on July 21, 2011


July 21, 2011
My Lucky Charms
‘THE LEAD UP’
Saturday AM
You know you’re anxious about your CT scan, when you wake up in the morning realising you just dreamed that you had an internal ultrasound out the front of Coles, with all the shoppers in the express lane looking on.
I remember thinking in my dream, how relieved I felt that they said they couldn’t see anything in my lungs, but how weird I felt, being on display like I was a ‘red spot special’. 
It’s three days before my scan, which will show if the chemo is doing its job.
I know this is necessary but the anxiety leading up to it is like that feeling you have when you wake up in the morning after your first heartbreak. That reality punch in the stomach and the heartache that follows.
I have controlled anxiety right now, although my little ‘Nervous Nancy’ persona pops her head up now and then with those stomach wrenching thoughts of, “what if”?
What if the chemo isn’t working, what if it has spread somewhere else, what if they run out of treatment options, what if my liver is full of it, what if my liver has disappeared altogether, what if my head explodes off my shoulders because I’m going crazy with what if?”
I use the breathing exercises I have been taught to get rid of ‘Nancy’ and to quell the queasiness I feel in my stomach, but will look forward to getting the next week over and done with.
In the mean time I look for positive signs that everything’s is going to be ok…..
‘THE SCAN’
Tuesday AM
My alarm has just gone off, a reminder to be up and showered and give myself plenty of time to drink a litre of ‘contrast fluid’ an hour before I go in. This is supposed to give the radiographer a clearer picture of what’s going on. By the way, I hate that I know all this medical information. I loved the old ignorant days, when I thought cancer was a star sign and terminal was a bus station.
I will drink this and imagine that I’m having a cocktail with my friends who just sent me a parcel from Greece. Cheers from Santorini!
After being greeted by ‘my old friend’ Noel the radiographer, I lie on the examination bed & slowly go through the CT tunnel. I close my eyes and take my mind back to when Sienna was born when she was first placed on my chest, the intense feeling of love and happiness was so overwhelming. I feel calm and happy.

December 11, 2004
Sienna 10 minutes old

Tuesday PM

I wish I hadn’t made that cocktail joke!
I’m lying in bed tonight after feeling like I have been drinking moonshine and rocket fuel all day with a bunch of hobos. I had a terrible reaction to the contrast fluid which left me dreadfully ill all day. I even had to call ‘Code P’, I was that sick.  I called my ‘Health Stylist’ (my oncologist) and he assured me that this can happen to ‘some’ people. Great!  If it’s a possibility, I’ll have it…. develop it…… or be it! Typical!!
NB: ‘Code P’ is ring the Parents to come over to help.  

Caulfield 1972
‘Parent Troopers’
I love this family photo


‘THE WAIT’

It will be another two days before I hear my results. I’ve kept myself fairly busy today trying not to think about “what if”? When I find my mind wandering into ‘what if’ territory, I start my deep breathing exercises and let the thoughts pass through, like ships in the night. If anyone heard me they’d think I’ve been possessed by Darth Vader, I’m not the quietest deep breather around.
Tonight as a treat, I let Sienna sleep in my bed. I curl up beside her and listen to her quiet sleeping breaths and feel her warm little hand hold mine as she sleeps. I think about how much I love her and Gary and have to believe that tomorrow’s results will be ok.
A few Troops 2009
Mandy, Tiff, Me, Ange and Linda
‘THE RESULTS’
I don’t see my ‘Health Stylist’ until later in the afternoon, so I spend the morning with Sara one of my ‘troops’ and enjoy some fun and laughter. Meanwhile, the other troops are gathering their momentum of support and the messages start coming through, “thinking of you today”, “I know you’re going to be ok”, “you’re a fighter”. I feel good that there’s an army of hope and belief behind me, that today’s results will be ok.
Meanwhile I think of my Aunty, who is also my Fairy God Mother as she commences her journey on her own medical travelator. She’s having a double mastectomy today, I feel confused and sad for her and wonder why does this have to happen.
The Brave Man arrives home to take me to my appointment. Like a Knight in Shining Armour he comes through the door looking braver than ever.  I almost feel compelled to look out the front for his white horse tied to the fence.
As I pull my 18th lucky charm over my wrist and tuck Maggie, (Sienna’s favourite bunny) into my handbag, I kiss my ‘parent troopers’ good bye and give my little fairy about 50 hugs and tell her I’ll be back soon.

Noosa November 2010
Playing on the beach with my Brave Man

The Brave Man is working over time, talking about anything and everything that’s not related to anything medical, just to keep my mind preoccupied. He did a good job because before I knew it, we were sitting in my ‘Health Stylists’ waiting room.

My heart is pounding and my palms are getting clammy, I’ve been in this room so many times before and have waited for results as many times, and here I am again.
I suggest to the Brave Man that he goes in first, listens to the results and then he can come back out and tell me. But he wasn’t having a bar of that.
My ‘Health Stylist’ calls my name and I nearly trip over my heart as it sinks to my feet.
I study his face to see if he’s got that worried, concerned, “I’m about to tell you something I wish I didn’t have to” look. But he just smiled and seemed genuinely happy to see me. It’s got to be a good sign, but he always smiles, what if, what if, what if??
As I was spinning into “what if territory” again, I hear the words……”Well your results are really good”.
I think it was a race between the Brave Man and I who would leap over his desk and hug him first.
“Your lungs look great, the spots on your liver have either disappeared altogether or reduced in size.” He said that there’s 80% gone and we’re still on track for just three more rounds of chemo.”
Breathe out……….. I’m happy!
I ask him how his holiday was.
June 2011
Lorne Beach

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The Kindness of Others

by Rachel on July 6, 2011

‘The Kiss of Life’
My friend Dee coming in for some chemo ‘fun time’.
I’ve just opened a parcel from my beautiful sister-in-law, the Brave Man’s sister, who is, in her own right a Brave Sister and Mother. Out of the parcel I pull a beautiful and soft ‘home knitted’ wrap. Every loop knitted with love from someone who cares so much. She said, “I just feel helpless, I don’t know what to do”. I must say, I was a little misty eyed, that someone could go to this much effort just for me. I feel safe and cosy when I wrap it around my shoulders, there’s something magical and lovely about it that makes me feel better. 




My bed, my office



So sitting on my bed, with my new wrap hugging my shoulders, I began to think about what, ‘my story’ was all about. You know, the journey, the challenge, the story….. I don’t think it’s about a person who is trying to come to terms with living with cancer and the fears of….. “will I ever have to say good-bye?” But more about the discovery of a whole new amazing world of human kindness and compassion.
So I’m on the ‘medical travelator’, been taken from constant appointments with oncologists, specialists, surgeons and having so many tests and scans. I end up having scans of the tests and tests of the scans. In fact, it wouldn’t surprise me if I was scanned going through the checkout at Coles, just for the sake of it.
And in between all this, having chemotherapy that enters your body like a swat team of elite storm troopers, marching through and obliterating everything in sight that looks like it shouldn’t be there. (Shame they didn’t get the memo not to touch my hair!) 
Painting Sienna’s toe nails whilst Rachel Devine captures the moment
My hair falls out and I retreat to my cave of ill health, I remind myself it has to be done and I think of my angel Sienna and my ‘Brave Man’, my husband Gary. The sickness and nausea which is like having jetlag, morning sickness a night on the town and been given 4 hours of nonstop wizzy-dizzies lasts for about 10 days, where bed is my comfy friend and writing is my therapy
With all this, it doesn’t leave much time or energy for anything else.
That’s where the kindness of others, comes in. The Community has protected and nurtured us in our time of need, like a mother’s arms. I’ve been so humbled by what people have done for us, just to make life easier and to let us know that we’re not doing this on our own. They don’t do it for praise, they do it because they genuinely want to help.
Support like this, is the greatest healer!
From a simple text message, that reminds you, your friends think about you and they care. To a weekly fresh baked batch of choc chip biscuits left at the front door from a mum at school.
As soon as we found out I was sick again this year, my friend Rachel, who is a professional photographer, cancelled all her shoots for the day and came around to capture some beautiful moments with Gary, Sienna and me. She wanted to do this before my hair fell out. Some beautiful shots that you’ll see more of throughout my journal.
I’ve had all the mainstream religions covered, with the local fruiterer praying to Allah for me, the retired nuns around the corner keeping me in their prayers and my girlfriend who has converted to Buddhism imparting her wisdom of the Four Nobel Truths. There has even been a monastery in Tasmania that sent me a special blessing for good health. Not bad for an agnostic.

Nat, one of my troops, lit this candle for me at St Pats Cathedral New York
Candles have been lit in churches from Croatia to New York by friends traveling the world. I think I have every beautiful healing crystal known to man and a sweet smelling kit of different oils for different ailments given to me by one of my troops.
My friends who own a local restaurant in Brighton, not only have dinners cooked for us and delivered every night, but carefully and lovingly plan the meals so that they suit my ‘chemo’ taste buds. There’s even separate meals made for the Brave Man and Sienna.
As the ‘chemo cloud’ lifts, I look forward to the fresh air and sunshine on my face and go down to get my favourite coffee from the Pantry. When I arrive, I’m  treated like royalty, all the staff are so genuinely happy to see me out and about, that they all come and greet me with hugs and kisses , I reckon if they had access to a marching band,  I’d be greeted with the full five star reception!
And every week, when I just couldn’t make it out of the house, the local Fruit and Vegie grocer would go out of his way to drop fresh fruit and vegie at my front door.
The local ironing lady and her husband took it upon themselves to do our ironing for a year so we “didn’t have to worry about that chore.” She said to my Brave Man, “You have money, I have money, it doesn’t matter, we help each other!” This is our nurturing community at work.
With aching muscles that have been pummelled by chemo, I get a knock at the door and greeted by a big beautiful smile by masseur Dee, who gives up her Sunday afternoons to comfort my poor weary body with her soothing hands and talks to me about her Think Out Loud Coaching which always leaves me inspired and positive.
Local workmen ‘downed their tools’ to come and help
I am even receiving kindness from strangers, I had to move furniture to prepare for Sienna’s Glistening (more bout that later) and because I’ve got as much strength as a dead ferret, we asked the builders on the corner of my street for help. Five minutes later two guys walked in that looked like Popeye and Conan the Barbarian, with their arms the size of cannons picked up the table like a feather, did their bit and off they went,  with flowers arriving and gifts on the door step, it was a great day that day!
Another thoughtful gift from Catherine

Lisa another one of the ‘troops’, dropped off flowers
with a homemade handpainted card
Even the school community where Sienna attends grade one have been so supportive, with an endless supply of offers to pick her up and drop her off from both the mums and teachers. I think if I took them all up, I could sleep in until she reaches VCE.  Every week two mums in particular just organised without question, that they would take Sienna to ballet and drop her back home to me…. so kind.
Sienna skipping off with her friends after school 
And I’m always receiving messages of hope and love from mums, dads and teaches at her school, all willing to do something to make Sienna’s day that little bit happier. Just a cuddle from her teachers goes along way and she is as happy as a lark!
And often when the Brave Man and I are turning into our driveway after coming back from some sort of medical appointment or a long day of chemo, there on the door step a little gift will be left with a card of best wishes and warm words of support. These could come from my close friends or a mum at school I’ve only said hello to in passing.  It’s these acts of kindness that get me through it, help me stay positive.
The Brave Man in “Sickness and in Health”
The Brave Man never misses an appointment with me, he’s always there to hold my hand. This is thanks to the generosity and compassion his employer has given us, by never questioning the time he spends with me, and all they hope for, is for me to get better. 
And at the end of my treatment in 6 months, where I’m left with a tired and weary body which has fought so hard, my friend and amazing nutritionist and personal trainer Donna Aston, will be waiting to get me back on track and give me back a healthy and fit body.
Le Saffranier in Bonnieux Provence, a place we hold close to our hearts
Our community of care doesn’t just limit itself to Australia. A beautiful Swedish lady Anna, who I have only ever corresponded via email and text has invited us back next year or 2013, to her amazing 18th Century Farmhouse which is her holiday house in the South of France.  Bonnieux is the village, and it has never let us down. We are always filled with happy memories and cherished moments when we are there. It’s these memories that both the Brave Man and I focus on to get us through.
May 2011
Having fun at the Bonnieux Market
I love the Dalai Lama’s wise words, “Love and compassion are necessities, not luxuries. Without them humanity cannot survive.” The kindness of others has played a major role in my little family triumphing over this, and still does, as our journey continues. I am glad I have been given the chane to think about what ‘my story’ is. 
So I think mine for now, it is the enlightening experience I have had with the beauty of human kindness.
As I post this, I’ve just received a CD of meditation from a gorgeous guy and friend who works locally and an exquisite head scarf sent all the way from Greece, from our friends travelling the world.
No words can describe my heartfelt thanks.

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Ooger Booger!

by Rachel on June 29, 2011

Nurse Rachel 1974
Nurse Sienna 2007

I’ve never really been a, ‘slap wet fish over my head’ kind of girl, or walk around the house with incense hanging out of my ears kind of girl.

But having gone through this illness, a few new doors have opened, and I’ve been peeking in side.
“Ooger Booger”, I’d call it, the “realm of the unknown”, the “weirdo babble” that some would speak.
I’ve always avoided walking under ladders or opening umbrellas in the house, but never entered the ‘alternative’ world!
However, a life change such as the one I’m going through, opens your eyes and your thinking to other things.
My first experience was my visit to Dr Mumbo Jumbo, in Upper Heidelberg, who promised the ‘Ultimate Consultation’. It took Dad and me so long to get there that I was nearly in remission by the time we found the strange little place. With a yellow highlighter he coloured in a big dot and instructed me to stare at it every day for 20 minutes, which would basically make me “feel better”. I thought at the time, the only thing that will make me “feel better” is walking out your door Mr Loopy. After handing over the $300 for the ‘Ultimate Consultation’, I spent weeks watching A Current Affair to see if he’d pop up on any of their ‘Dodgy Doctor’ exposes.
Dr Mumbo Jumbo
Sienna 2007
But still I didn’t give up, I wanted to persevere, I wanted to become a ‘believer’, even though Ooger Booger went against my cynical grain of existence. My next stop was with 80 year old Nancy who came with great credentials, she had been awarded the Medal of the Order of Australia the year I met her in 2006, for service to the community, particularly people living with cancer.
She was just lovely, a real Grandma, I would sit in her lounge room with a cup of tea and spend the next hour chatting and being introduced to meditation. I really enjoyed my time with Nancy she was so calming and healing. Then it came the time that she thought I was ready to attend a group session. Little Miss Scaredy Cat (me) never went back again.
In between all this, I drank litres of Goji Juice, Manuka Honey, Hippie Tea, spent thousands of dollars on organic products, from fruit and vegies to organic toothpaste. I visited several counsellors and swallowed a lot of supplements, and it all just made me feel that little bit more nauseous.
I knew I had to persevere, and understood that there was not only a need for me to heal physically but mentally too.
I wanted to learn how to cope with the feeling of ‘flight or fight’. Try to control the anxiety I would feel when my busy mind would take me down the road of, “am I going to die”. Before I knew it or could control it, my mind would be racing so fast, that I would be mentally preparing my own funeral, including music from the Lion King, gift bags for those who attended, a list of those who didn’t so I could haunt later and door prizes to lighten the moment.
“Trust me I’m a Doctor”
Sienna 2005

So on I went with ‘Ooger Booger’. There was eye staring therapy, (which went down a treat), hypnosis conducted by a Psychologist who thought it was a good idea to ‘break the ice’ by telling me about her Aunty’s last words, “I never knew it would be this hard to die from cancer”. Yes I was so relaxed after that little session.  

A visit to a Buddhist Temple this year was a highlight and being introduced to their simple but wise teachings makes me see, it’s the simple things in life I want.
But my end of the rainbow’ moment has been meeting Dr Deb this year. A beautiful and nurturing spirit who simply wants to help.  I see Dr Deb once a week for guidance, meditation and learning about mindfulness. Together we’re finding my rhythm of calm to get through this moment safely.
I believe that I have found what I have been searching for over the past years. But I’m still having gift bags and door prizes! And the Lion King!
The Three of Us
2007

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