May 5^th 2002

Autumn has set in and I get lost in the beautiful colours of the leaves outside my bedroom window, as they turn from luminous greens, to rich and warm orange and auburn’s. It’s been a month since my last round of chemo, and I have definitely felt better for the break.

But I’m back on the medical travelator now, having just finished my first cycle of a new regime of chemotherapy a couple of days ago.

I had a lovely month off and did as much adventuring as my body would allow me. The simplest things with my Fairy would make our days and we delighted in enjoying each other’s company.

Even though I had high hopes of walking back into oncology to see the ‘Gara Angelis’ the other day with a cute mod crop of new hair growth. My hopes were quickly dashed when I realised, the only few little hairs growing back, were all on the end of my chin. Cancer is mean! And if I saw it close up, I’d poke its eye out!

So because it’s been a while since I’ve written, I wanted to split my entry into three parts..….. that I have called Autumn Tales.

So much to share with you!

Back to 4 weeks ago…..

Easter April 5th

 

It couldn’t have been a better break from the ‘hard juice’. My fairy was on school holidays, the Brave Man took time off work and we had one of the most memorable Easter’s we’ve had in a long time.

So as soon as we could, we packed the car and headed down to our ‘beautiful haven’ near the beach. First stopping off at Lily Pond, my most favourite shop in the world. And because it’s owned by the Braveman’s older brother and his wife, makes it even extra special.

 

 

We had our Fairy’s best friend Billi with us and wanted to show the girls the gorgeous Easter window display. There were bunnies galore and my Fairy was in her element.

We wandered through the whimsical emporium of old french ribbon and freshly ironed antique linen tablecloths and ran our fingers along the old French cloche’s bell jars, that were once used to protect the vegetables from the chrisp French country air. As we admired the beautiful curved table legs that belonged to an old writing desk that they had found in the south of France, we found ourselves back at the front of the shop again, only wanting to go back for more wandering to lose ourselves in the ‘frenchness‘ of it all.

The music of French singer Serge Gainsborough, could be heard in the background and as the girls played behind the counter with Sienna’s cousin Tamsin with ribbons and buttons, making pretties and wrapping French mints. We savoured our ‘welcoming macaroons’ whilst my shopping delights were wrapped by my quiet niece Rosanna. With a beautiful old French cheeseboard, my first ever feather duster, (can never be too late to own a feather duster) along with reels of ribbon I couldn’t resist, amongst other bibs and bobs.

We bid our au revoirs and continued our journey.

 

 

 

 

 

Arriving at the Farmhouse

Our Besty Troops came to the farm house for Easter, Dan, Narelle and their three girls, Billi, Alice and Dusty. Also some new friends who were visiting from Sweden. We had met them through our Besty Troops when we travelled to Sweden this time last year.

It was so lovely to share our house in amongst our magical setting with ‘Swedish’ Mike, Maria, their little boy Charlie and baby Daisy. Although I did think that the 6 hour drive it took them to get their, would almost be like driving from Stockholm to Italy. Still we were humbled that they made the time to come and see us and we loved their company.

For a while, amongst the laughter and frevovility I forgot I was sick. In fact, if it wasn’t for my big white beaming bald head that could be seen from Mars, I think we might have all forgotten for a moment.

The time together was very special and I appreciated every moment. From the culinary delights that Dan would produce in the kitchen, even using the fresh herbs from our organic veggie patch, we were all spoilt from morning until night with his tantalising cooking.

Even the kids would be involved in the cooking, making deliscious fish tacos on Good Friday.

During the day, they would all head off adventuring and I would take the opportunity for a rest at home. I wanted to be with them all the time, but knew my tired body wouldn’t get that far, so I just saved up for the afternoon family board and card games.

All A bit of a shock

My Braveman enjoyed this special time too, discovering special beer brews from around the region, to share with Dan and ‘Swedish’ Mike.

One early chilly morning my Braveman and Dan decided to head out for some ‘man time’. I love the Braveman doing this, it’s so important for his headspace to have ‘man time’. So they packed the fishing rods, tackle and stinky bait and set off at 5am to find a good place to fish as they watched the sunrise.

Four hours later they came back, cold, no fish, but big stories to tell.

Apart from confessing their guilt for driving through a campsite in their loud four wheel drive at 5 am, no doubt waking the poor campers from their slumber. (Note to self….just reconfirming that this is the very reason I don’t camp!)

They set off to find the ‘mouth of the river’.  “Apparently”, the best place for catching the fish, also a great place to get your car bogged after heavy rain. And it was no time before they found themselves in a big bad bastard boggy situation.

Of course there was the thought of asking the campers down the road for some help, but given their early wake up call thanks to the ‘city bush bashers’, they thought better of it.

I can only imagine what went on in that car and it wouldn’t have been singing ‘Kum Ba Yah’ and asking the Lord for some help. Instead, a lot of swearing, laughing, swearing, panicking and even a little perspiration in the ‘man pit area’. My Braveman, (bless his little cotton socks), put his ‘practical pants on’ and read the instruction book and apart from learning how to change the clock and what some of the dashboard symbols meant, it was as about as helpful as driving through a bunch of sleeping campers at 5 in the morning.

But then they came up with the clever idea of placing the door mats under the wheels to get some ‘traction in the action’ and off they went.

No doubt there would have been a lot of relief, laughing and chest beating as they sped back to home.

The morning was producing a beautiful sunrise and the Braveman couldn’t resist stopping to take a photo. Of course Dan being a perfectionist had to find the best spot for scenery and sunrise, everything had to be aligned and in order. It sounded all very ‘roMANtic.’

Finally the perfect spot! The Braveman got out the ‘big kahoona’ lens and as Dan was taking in the serenity while his brave mate steadied himself on the fence to take the perfect shot. A piercing yelp echoed out over the valley. Not only did the Braveman find the most perfect shot, he would also feel an instant shot of his own, as 7,000 volts were blasted up his ‘rectum intestinum’ and out through his ear canals as his elbows lent on the electric fence.

Mmmmm I bet he was thinking about how happy he was to get up at 4:45am that morning!

The kidlets got up early on Easter Sunday, (no surprises there) Full of an excited buzz as they put on their layers of clothes and warm jackets ready to go out into the chilly air, ready for the Easter Egg Hunt.

They were met at the door by some ‘busy bunny paw prints’ left from the night before, and a half munched carrot. Shame the handy-work wasn’t really noticed as they excitedly barrelled through the door to go hunting.

With a ready, set,  go, they were off like a bunch of crazies at an annual stocktake sale. Darting from one tree to another, looking under leaves in branches and amongst the dew soaked grass. As soon as one would call, “I’ve found one!”, the other’s would follow. Until about 350 multi coloured wrapped chocolate Easter eggs were found.

Yes, there was a little miscommunication with egg quantities (mainly mine) and each child found about 70 each.

See, cancer is mean, it makes you feel all guilty that your child isn’t happy enough so you have to buy things in bulk, tell her a thousand times a day that she’s loved and she’s so clever and kind and try so hard not to get cross with her when you’ve asked for the 43^rd time to go and brush her teeth. Arghhhh, I hate cancer guilt!

 

That morning, many coloured eggs were counted, hot cross buns were eaten as well as, a lot of CHOCOLATE!

I desperately wanted Charlie who was only 6, to see some kind of Australian wildlife, whilst visiting. But these timid animals are shy, so there wasn’t going to be a guarantee that they would come out to meet our little Swedish visitor. So I had a backup plan just in case he didn’t get to see any. … BIG KEV! The giant blow up Kangaroo!

 

When Charlie went off bush walking with his mum and dad, Big Kev finally made his bush debut! The girls sought much delight in hiding him in amongst the trees to surprise Charlie when he got back.

Big Kev was ‘king of the gum trees’, he looked so splendid sitting up there for all of the 3 seconds until he blew over. But Charlie was happy, Kev made a very good punching buddy for him. I think he was a bit over being there amongst all the giggly girls and needed some ‘rough and tumble time’, poor Kev.

 

The mornings were fun and all the girls, Sienna, Alice, Billi and Dusty would jump in the bed for cuddles, I never feel sad anymore about my dream of having lots of kidlets when these girls are around. They’re eternally full of love and cuddles for us.

We only had our friends for a few days before they had to go home. As we said our good-byes it started sprinkling with rain, and by the time they had driven to the start of Wait-A-While Road, a beautiful rainbow appeared and wished them “good journey.”

The next few days it was just the three of us, and although we missed the happy noise in the house, I got a little bit more rest which was what I needed.

With my extra energy, I managed to do more things. During the day, my fairy and I played ‘hide and seek’ amongst the gum trees, ‘frog hunting’ around the dam and finally the three of us put our lovely letter box on the front of our house that our Besty Troops had made for us. We went adventuring around the old tracks and spotted wild deer frolicking down a farmer’s track, caught up with the local wallabies and enjoyed the never disappointing view of  Cape Otway. At night, I made pie for Gary with a love heart and our initials on the top, just like when we first met and were falling in love. Cooked ‘homey’ dinners for us all and taught my fairy how to cook chicken pie.

It was nice to look after and nurture my little family after such a long time.

A few days later, my lovely parents came and it was terrific to see my mum looking and feeling much better. She’s come along way, and it was great to receive good results with her recent scans.

My kind gentle Dad has enrolled in a 4 week course at University to learn about Astronomy. He wanted to do something nice for his Grand daughters who he adores so much, so he decided to learn about the stars and planets, buy a telescope and teach his granddaughters about what goes on in the skies above. I couldn’t think of a nicer thing a Grandfather could do for his grand kids.

After spending a glorious ten days on the farm, we were full of love and happy as larks.

But a niggling secret pain in my stomach would get worse and took a little shine away from my happiness. I knew I would have to tell my Braveman when we got home.

After a very eventful week of going from my bed…… to the couch……. to the shower to the bed……… I was glad to slow it down to a more manageable pace of bed and showering only.

My scan was coming up and I was determined not to let that be a major focus and go down the ‘slippery-dip of panic and dread’. So I focused on positive thoughts and things that made me happy.

The major nose bleed I had the other night was a slight set back in my ‘keeping positive’ attitude and slightly knocked me off guard. Of course, as I was coughing and spluttering and crying at the same time wondering where all this blood was coming from, the Brave man walked into the bedroom where the scene was not unlike something from CSI Miami. He stood there momentarily probably trying to process what had happened, either that or he was about to get his ‘blue light thingy’ out, like they do on CSI. As I sat there looking at the scene of my pretty crimson blood sprayed over my sheets, panic set in and the only ‘positive thinking’ I was doing, was…., “this is it, this is it, I’m positive this is it.”

The Brave man was kind and reassuring. Telling me that this happens all the time in footy.

Ummmmmm, footy, yes how could I forget all those blood noses I had when I played football?? As he tilted my head back and reminisced about the good old days when he played football for the Alvie Football Club, the great nose bleeds, the proud moments of having two broken noses crunched and straightened back into place without the help of pain killers. As proud of him as I was, I continued to cry, coughing up blood and freaking out because I was thinking that I was having a full brain haemorrhage.

After the Brave man had cleaned and cleared the scene, he lay quietly next to me until I fell asleep.

Taking advantage of a week off chemo, we set off the next day, to our little peaceful retreat in the country to spend a long weekend together.

As we try and do each trip, we drop into see the Brave man’s lovely mum, who we call Granny.

Granny, is a real Granny. She lives up to her name. She has soft white fluffy hair, wears an apron a lot and spends contented times amongst her beloved roses. Hugs are always plentiful at Granny’s , but she saves her “66 kisses” for Sienna, who adores her.

There are always freshly baked treats when we arrive, a new flower to admire and stories of what this busy Granny has been up to during the week. And today was no different, fresh date scones and a cup of tea. Sienna had her first knitting lesson and she was so proud. It was lovely watching the old fingers teaching the new fingers.

 

Back on the road with our tummy’s full, and it wasn’t long until we arrived at Laver’s Hill. We travelled down Wait- A-While Road to our little house. Down the gravel road, through the forest, passed the alpacas, and like many times before, passed the sign saying, ‘Holy Water’……. For some reason this time, it occurred to me, “this is not just a sign…. It’s a SIGN!”

As you know I’m into signs and symbolism and given my scan wasn’t very far away, I knew this ‘sign of a sign’ had to be followed!

So we diverted off down the old bush track and followed the signs to Holy Water. Picturing myself, immersed in the Holy Water Creek, with my Fairy and the Brave man chanting by the edge of the water …health and wellness affirmations, I couldn’t get there fast enough.

 

And so we drove and we drove. The tall gum trees towering over us and the road becoming more of an ‘off the beaten path’ track than an actual road. With so many bumps and pot holes, not only did I wish that I was wearing a sports bra, I just wanted to find this wonderful curing spiritual place that I had conjured up in my mind.

 

 

 

 

 

 

 

 

 

 

Finally coming to a place that could only be described as a ghost gum grave yard, we saw the sign saying “Holy Water Creek”. There was no ‘curing oasis’, or ‘spiritual immersification’. The only spirits there were our ‘dampened ones’ and that of the old gum trees that had once stood tall there, before they were…… LOGGED!!

 

That night I wondered about our adventure to the ‘Holy Water Creek’, and searched for the meaning behind what we had discovered. Was it a sign of things to come when I have my scan the following week?

The weekend was lovely and I managed to play lots with Sienna and even adventure to the dam, there was a slight incline and by the time I got to the top, I felt like I was breathing through a mosquito’s drinking straw, but it was lovely to be with my girl and she was patient while I caught my breath. This trip was all about family, my mum and dad came for a visit and we all played bingo, watched family movies and sat through about 3 hours of the Fairy’s singing and dancing concerts.

 

The brave man got his ‘farmer on’ and mowed the grass until dusk, dug deep muddy holes and used his chainsaw for the first time.  He was happy being outdoors, his heart was beating to the country rhythm.

By the end of the weekend , I started to feel unwell, my chest was getting tighter, my throat was sore and I had a constant headache. Things just didn’t feel good. The ‘little worry me’ was nervously sitting on the edge of the ‘slippery dip of panic’.

With the promise of more fresh baking, we dropped into Granny’s on the way home.

No sooner had we arrived, she had fixed Sienna’s knitting, iced and filled a sponge, fed & patted Peter Rabbit, packed us up with 3 dozen homemade sausage rolls, ginger snaps and rhubarb from the garden. Not bad in 7 minutes!

 

It was a quiet drive home and I was feeling more miserable by the minute. My chest was pounding as if someone was standing on it and I just couldn’t wait to be home in my bed. The aches and pains served only as a reminder that my scan was imminent. I reflected on the signs and symbolism of the ‘brain haemorrhage/footy injury/nose bleed, and the non-existent Holy Water Creek and continued to try and interpret their meaning.

Finally home and out of the car, the first stretch of the legs felt good, as we began to take things inside, I saw the THIRD SIGN. A dead possum on the front lawn. (As far as Sienna was concerned it was a “tired possum having a sleep…… a very long sleep”.)

In a split second, I convinced myself this was the THIRD sign of death. I was no longer on the top of the slippery dip of panic, I was on my way down like a rocket. It took all my strength not to just go inside and call White Lady Funerals for a quick measure and quote.

March 15^th – The scan

My strong Troop Lisa came with me to my scan. She’s so kind and caring, every time she said something nice I’d cry. So to conserve eyelashes, conversation had to be limited to the weather and what a good car park we got out of the front of the hospital.

I lay under the big loud white donut & waited for the mechanical voice to tell me to, “Hold Your Breath”, I pictured my fairy’s face with her little freckles on her nose and those funny little adult teeth she’s growing with the cute gap.

The scan went without consequence and I was glad to get out of there quickly. As I have had so many scans, the girls behind the desk excitedly told me I didn’t have to pay, …. “You’re our best customer!” they chirped.

Ok so I know they were trying to be sweet, but I don’t want to be the ‘best customer’ at Cabrini Radiology, I want to be the ‘best customer’ at Sass & Bide or Prada or even Bunnings would do. Just not Cabrini Radiology!

Continuing down my ‘slippery-dip of panic’, I thought of the blood nose, the dry Holy Water Creek, the dead possum and now this comment, all these signs were doing my head in. What could possibly be next? Running down the school crossing ‘Lolly Pop Man’ because he’s holding the sign ‘STOP’??……. It can only mean one thing……….

March 16^th  – Results Day

I woke up to the sound of thunder and rain, my chest was ever so tight and my throat felt like I had literally swallowed the dead possum and it had got stuck halfway. Not feeling the best.

The Brave man took the fairy off to school as he does every day, I kissed her about 1000 times before they left and wished so much that when I saw her next, I would have received good results. But I knew with all the signs over the past week and my painful chest and throat, there was little chance of a glowing report.

I was no longer feeling panicked, no anxiety, just acceptance. My Health Stylist called us in and we had a quick chat about how I was feeling, he looked in my throat felt my neck, listened to my breathing and said…….“Yep, it’s thrush”…….”it’s what?” ……”Oh and your scan looked good”….. My little chemo fried brain couldn’t cope with the information and all I could think of was, “but what about all the signs, the nose bleed, the holy water creek, the dead possum, the “you’re our best customer” ???”

He explained that whilst the scan didn’t show any cancer, he suspects that there are still cells floating around. The fact that there is nothing visible to measure makes it a bit more difficult to know what treatment and how much treatment I need. So the plan for the moment would be, three chemo’s on, and a month off, do this for 5 months and then we’ll scan again.

As for the other thing…… thrush…. eeewww. I think I would have been less disgusted if he had told me that he could see a dead possum down my throat.  It certainly wasn’t my most feminine moment. My Health Stylist prescribed everything with the word ‘fungal’ in it to get rid of it.

After another big day of chemo, blood transfusions and results, we were finally home. As the Brave man read Pipi Long stocking to our Fairy. I lay on my bed and rested my head on my cool soft pillow. And reflected on the day. It was good news overall. I accept I’m never going to be given a guarantee, I accept I’m never going to be told I’m going to live to be 100 and I accept the unpredictability of this illness. It felt good to stop frantically analyse every moment as a sign or symbol of what was going to happen next and it felt good to be off the panic slide.

I looked at the lovely messages I had received during the week, and the one that touched me the most was from my beautiful Brave Man.

”Sienna and I just want you to get better and we will keep looking after you no matter how long it takes.”

 

February 16^th  – Round 7

As I put the ‘Morning Fresh’ in the fridge I think to myself, “gee I feel so tired, I could just turn up to chemo today in my pyjamas.” Thank goodness I don’t have to do my hair at least!

Even though I can’t really be bothered, I like to get dressed up for chemo, find something that fits my ever expanding girth, put mascara on my 3 eyelashes, and choose a happy scarf. And as I walk out the front door, and plant a, “I’m fine there’s no problems” expression on my face, I remember my friend’s saying, “fake it until you make it!”

It was a long day of chemo, which is not unusual for the first round of a new cycle, plus I had a blood transfusion. Sounds  so dramatic doesn’t it, but it really isn’t. As long as I don’t look at it, it doesn’t even occur to me that I am having someone else’s blood infused into my body. I am grateful though, for the person who gave blood so that I could be well enough for my next round of chemo.

After 7 hours we headed home and it wasn’t long before I slipped into my unconscious state of the chemo twilight zone for a few days.

A day later I woke up to a different view, a bright sparkly morning with the sound of the ‘merry merry king of the bush’ making his calls from his favourite gum tree. As the smell of the freshly baked bread gently woke me up, I instantly knew we were at our little farmhouse. I vaguely remember driving there, but as usual my mind was in a state of chemical confused oblivion and I wasn’t sure if the nausea I was feeling was from the chemo or the hair pin bends of the Great Ocean Road.

                                                                   the fairy and the braveman playing in the johanna dunes

As I was ‘coming to’, our mini break was over and we were making our way back home. The Brave Man and the fairy played eye spy all the way home. Sienna not quite grasping the concept that you have to see it, to play it. And things like “B T H”, (Boring, Trip, Home) is not quite the ‘Eye Spy’ idea. I happily listened to the two of them having fun, my Brave Man patiently guessing 100 possibilities for “something beginning with B T H”.

I stared out of the car window and was mesmerised by the landscape with the very dry hues of wheat colour dotted with bits of green. The hills looked like sand dunes, as the thirsty grass had dried them up over the summer. Actually it looked as dry as my mouth feels after a dose of chemo. The fields were speckled with ‘grey fluffy bottoms’ as all the sheep at once munch on the grass below. I wondered if their tendency to eat at the same time is a ‘sheep following sheep thing’ or maybe just a ‘sheep eating etiquette’ thing they’ve got going. We passed roadside stalls, bric ‘a’ brac, locally grown blueberries, potatoes & bags of horse poo for a $1. I went for the blueberries and decided against the horse poo, tempting as it was.

By Tuesday I started to feel a bit chipper and realised the blood transfusion had kicked in. It’s amazing how a couple litres of a ‘good quality red’ can pep you up.

Memory Lane
The topic for my fairy’s ‘Show and Share’ during the week, was “My Family”.  She spent a lot of time on her project and came up with;
My Dad is nice, kind and reads to me. 
My Mum is funny and has no hair and stays in bed a lot.

A little pang of guilt stabbed me in the heart. But I guess when I think about it, she probably doesn’t remember me when I had my blonde hair, when I used to run, when I could give her wizzy dizzies. I hate it that she doesn’t remember the ‘well me’. I don’t want her to have just the memories of a ‘sick mum’. So please excuse me for indulging in so many photos. I spent the afternoon looking at them all. Smiling, laughing, tearing up, looking at these photos…. Makes me emotional…….., happy happy, happy sad, happy love! If you ever have a moment, you should do it, look at photos of your kids, look at photos of your friends, or your family or your wedding. It will make you happy.

 

 

So I decided to bring those times back and help her remember. The Brave Man printed out lots of photos of her and me, and the three of us, so we could decorate her bedroom with memories.  It was fun and to my surprise, when she saw some of the photos she remembered when they were taken. As a ‘well meaning’ 7 year old with a kind heart she said, “Wow mum you used to be so pretty.”

 memories of ‘well mummy’ running in the mother’s day classic 2009

Thursday February 23rd  – Round 8
Just as I was feeling better, we were back at chemo again. As usual the Brave Man is by my side, never missing an appointment. Even though I love him being there but don’t expect it, he’s always there. We have our little routine of seeing my Health Stylist first, talk about any new side effects or aches and pains and then go down to day oncology to be hooked up.

Once I’m hooked, my Brave Man walks down to our favourite café and brings back breakfast and yummy coffees for us and any of the Gara Angeli* that might need one too.

My troops come and visit and the time passes really quickly.

The chemo is taking its toll on my body and as I look down at my scraggy hands, I am reminded of the times I would visit my Grandma. I would moisturise and rub her old hands with her paper thin skin and brittle nails. Her hands looked worn out and tired as old age slowly dried the life out of them. My body feels the same, just like one old piece of ‘beef jerky’.

The fatigue hits pretty quickly after chemo and I bid my farewell to the Brave Man for a few days as I retreat beneath the sheets. He’s looking weary and worn out and although he would never have it any other way, I can tell he’s reaching his limit with this inconvenient illness. And I don’t blame him at all, it’s relentless, helpless and a big pain in the Haemoglobin! But he assures me that he’s ok and all he wants is for me to get better.

Scamming the scammer

But there was no doubt the tedium of our current monotonous situation was getting to him. More so than ever the night the ‘scam artist’ rang!

It was fairly late on a week night and our fairy had just got out of bed for the 17^th time, having gone through all the excuses she could think of to get out of bed. “Why do ants exist?”, was definitely testing our patience.

The phone rang and a man with broken English declared to the Brave Man that our computer was broken and he could fix it if he had access to our security passwords.  The Brave Man knew straight away that this was some kind of scam. Like one of those, ‘you’ve just been nominated as a beneficiary to collect ten trillion pounds’ type thing.
But rather than just hanging up, the Brave Man saw this as a bit of sport and for amusement let the scam artist babble on about security settings, personal information and instructions on entering certain code numbers. The Brave Man eagerly replied that he would do all this to ‘fix his computer’ but the problem was that he, ‘only had one finger because the rest were blown off in an industrial accident.’

Lesson 1: Don’t try and scam someone who is really bored!

Mr Scammer was still determined and when the Brave Man suggested he could try and use his “nose” as well as his one finger, the swindler anxiously agreed.

Of course by now I was in fits of laughter (it felt so good to laugh out loud). The Fairy was out of bed for the 18^th time, wondering why her Dad was saying crazy things on the phone and laughing because she could see us both laughing.

It went on for another few minutes with the Brave Man suggesting he could use other body parts to press the keyboard. Finishing with, “I have to go my parents are coming.”

Ok, so maybe not so funny when I put it in writing, but for this little ‘ground hog day family’, it was great to laugh out loud and enjoy the moment.

 Thursday March 1^st  – Round 9

After seeing my Health Stylist this week, we discuss my blood results and the fact my ‘lollypop markers’* are coming down which hopefully reflects that the chemo is working.

My white cells are low again, but not unexpected given the amounts of chemo I’m having. So I’ll have to give myself another shot of ‘the good cell boost juice’.*

My Health Stylist says that it’s time to book in for a scan. He needs to work out how much more chemo I’ll need. We’re not sure what or whether the scan will show anything at all. You would think that, a scan would show anything unusual, and the chemo would destroy it all, but over time, I’ve learnt it’s just not how this unpredictable disease works. It can lurk in places that a scan just won’t find, But we put our faith in ourselves and the Health Stylist and hold onto hope as tight as a rodeo rider hangs onto to a bucking bull.

So this week, I have the week off, can’t say I’ll be out partying, but I will enjoy a bit of clear head space with my lovely little family. Spend some more time on my book for my fairy and get some fresh air into my lungs.

I will also think about my friend Sarah who is having a bone marrow transplant as I type this very entry. I met her through my writing at the beginning of her struggle with leukaemia last year. We have been friends since. I feel her pain and the torment of fear that she struggles with from time to time and wish this ‘woman of strength’, so much for ‘wellness’ in the coming weeks. Sarah also has a Brave Man and a little Fairy a year younger than my Sienna.

To Sarah,

A strong woman isn’t afraid of anything…
But a woman of strength shows courage in the midst of fear.

A strong woman wears a look of confidence on her face…
But a woman of strength wears grace.

A strong woman has faith that she is strong enough for the journey…
But a woman of strength has faith that it is in the journey that she will become strong.

Paragraphs taken from the poem, ‘A strong woman versus a woman of strength’ by Luke Easter

*highlighted words or sayings can be found My Lovely Lexicon

January 7^th Happy Bald Day!

It was still summer school holidays, so we packed up and took off to our little farmhouse down the beach.

By now my lovely hair was falling out at a rate of knots. It was my birthday on the weekend and I was determined not to be bald on my birthday. Really as a woman, in particular, the only time you should be bald on your birthday is when you’re actually born! So I sprayed so much hair spray on it, that I probably created a second and third hole in the ozone layer. It didn’t move and I made sure I didn’t place myself into any ‘hair blowing out positions’. No air conditioning in the car, no sitting near fans and especially keep away from blower vacs!

I woke up on my birthday with the beautiful view of the Otway State Forest from my bedroom window, and my beloved little family delivering me breakfast in bed, freshly made bread and fresh coffee. I opened presents and read cards and wished so much that I would have lots of birthdays ahead of me to enjoy these moments.

I didn’t mind being older, in fact these days I am so grateful to make it to another birthday, however I did wonder how I became 42. It just seems like yesterday that I was 39 and planning my 40^th, that would never eventuate because of this inconvenient illness.

As a beautiful surprise, three of my Besty Troops came to the farmhouse for the night to celebrate my birthday. To see them come down the drive way, I became so overwhelmed with emotion that they would do something so kind for me.

We spent the afternoon, sitting on the couch drinking tea and reminiscing about the ‘old’ days, when skirts were short, our hair was big and we’d tear up the dance floor with our radical 80’s dance moves. These troops go back a long way and whilst we may not see each other as much as we’d like to these days, one thing always remains constant…….. the love and respect we have for each other.

 

 

 

 

It was decided that while they were there, we would seize the opportunity and do the big ‘shave off’. As it was a very windy day, I did suggest just standing outside and let it be blown off amongst the gum trees, like a dandelion in the breeze. It would have been good nest building material for some of the local birds.

But they insisted on shaving and one by one they took a turn, ever so carefully and slowly and with much deliberation and consideration.

An hour and a half later there I was sitting out in the middle of our property, with my three troops hovering around me inspecting their handy-work.

 

 

Even my little fairy wanted to be part of ‘team shave off’. She stood their patiently until it was her turn. I’m not sure if she was happy to be part of the team or the fact that she was the only seven year old that she knew on earth that has shaved her mum’s head. Show and share will no doubt be an interesting subject at school.

After all was done, I took a deep breath and looked in the mirror. Although I envisioned more of a Demi Moore type look when she had her head shaved in the movie GI Jane. I guess I could work with the  ‘professional scrag fighting’ look that stared back at me.

Whilst I admire these women for their clever brains, gorgeous looks and the love they have for me that sometimes I feel I don’t deserve. I feel much solace in the fact that they all have great careers and wouldn’t change career path anytime soon to become hairdressers.  I’m not sure their good intensions  reflect their skill level as potential hair dressers. Sorry my lovely troops.

 

Despite the new hair style, I had a great birthday, I was there with friends and family, the people I love. There was nothing else could want for….. Until the Brave Man whipped up a birthday cake. Is there anything this man of mine can’t do?

 

 

January 19^th  Back in Melbourne

Round 3: “Going the Distance”

Usually before my treatment, I would go into see my Health Stylist to check in, tell him how I’m feeling, and if I feel brave enough, ask some questions. Today I was feeling brave and I was armed with questions. “Why is my breathing still very laboured?”, “Would the cancer have affected my vocal chords again and is that why have I  lost my voice again.” “Could it be in my chest wall?”

The next minute I was called in by someone different, a female oncologist who I had met before, lovely and very thorough, but not my Health Stylist! Where was the person who promised to save my life.

The change took me by surprise and before I knew it, my lip started quivering and I started to tear up.  She noticed my tears almost straight away and kindly offered me something to wipe my watery eyes. I couldn’t quite understand the tears, so I just told her it was ‘allergies’ and she agreed that the wind can cause watery eyes. “Yep, whatever!” I thought to myself.

The following week was pleasingly uneventful.

January 30^th

Shiny black shoes and new white socks………

As I get to my third chemo of my third cycle, I’m feeling like what I can only describe as a ‘trailer load of road kill’! And pretty much looking just as attractive.

But I put my fake, “I’m feeling terrific” face on and the fairy and I get organised for the start of school. New shiny school shoes, whiter than white socks and a bigger sized school dress. I can’t believe my girl is growing up.

I feel the familiar pounding in my heart, as I think about my absence during her first years at school. I so want to be involved, be a parent helper, be there for reading, but my body is just too tired and weak. Cancer is just so mean!

But I won’t let it get me down, I decide to venture out and get the car washed, so I put my scarf and hat on and my big sunglasses. Despite looking a little like ‘Inspector Gadget’, I was proud of myself for getting out and about.

As the car was getting washed, I watched the comings and goings of the people around me. A mother walked in with her two young children and a newborn. I watched her clucking around her brood, whilst they played around her feet. The dull ache of grief for what ‘might have been’ for our little family of three, went as gently as it came.

My concentration was broken when I was called as my car was ready. I walked outside and down to get my car, I felt proud that I had at least accomplished something in my day.  As I handed over my ticket to the friendly car cleaning team, a big gust of wind blew not only my hat off but half my scarf too.

About 6 of the little car cleaning dudes ran around franticly chasing my hat as I stood there trying to get my scarf back on and cover up the baldness. In all the kafuffle, I thanked them and jumped in the car before something else happened like my skirt getting stuck in my undies or a whole trail of toilet paper getting stuck to my shoe.

My fairy’s first week in Year 2

Night before first day of year 2:“I don’t want to go to school, I’ve got no friends.”

1st day: “I have a great teacher. She said she will turn the cooler on when it gets warm and the heater on when it gets cold.”

2nd day: “I had a great day, Mia and I are rehearsing for our own ‘Glee Concert’”…. 10 minutes later….. “What’s Glee?”

3rd day: “Mum it’s so great, did you know we get to do our homework in our very own HOMEWORK BOOKS!”

4th day: “I love year 2, did you know my teacher loves to eat Thai as well?”

5th day: “Dad can you just drop me at the gate?”

I was so relieved and happy that my fairy had a great first week as big year two girl.

February 2^nd 

Round 5: “Nearly a Knock Out”

I was nearly ‘yellow flagged’ as I was going in for my fifth round of chemo.  My white blood cells were still unhappy and were not recovering, it was doubtful at this level I would be able to proceed with my next round. “Bloody, blood cells”, I thought to myself.

The Gara Angeli would wait for my Health Stylist to wave the ‘play on’ flag. We all waited with baited breath. Finally the go ahead came through and I was given the ‘good juice’, along with a little ‘white cell’ booster shot called neulasta.

The neulasta is an injection that I was to have 24 hours after chemotherapy, I had the option of coming back into the hospital to have it, or I could do it myself. I figured it was only a little prick that I had to endure for half a second, unlike the big one I have endured for the past 6 years.

The following week was as I expected, an unconscious blur, with a lot of ‘vertical stretching’‘*.  My bones ached and felt like they were being crunched in some kind of medieval bone crunching vice. I didn’t mind so much because I was told this would be a side effect of the neulasta.

“Grow little white cells, grow”.

The Brave Man managed to get us packed in the car and we high-tailed it to our farm house like Thelma and Louise.   (Without the driving over the cliff bit)

The weekend was filled with loveliness from wild blackberry picking,  to deer and wallaby spotting, to perfectly still and peaceful nights that held the fragrance of the country air all around us.

*Vertical Stretching is from my ‘Lovely Lexicon’.

 Definition:  Words used to describe ‘lying in bed’ when you’re sick of saying “Lying in Bed”, when it seems that all you do currently is spend 90% of your time “Lying in Bed”.

Ta da! A yummy country baked wild blackberry pie. All made by my beloved brave man he even put our initials on the top. Is there anything this guy can’t do at all?

February 15^th   

The Eve of Round 6: “Floating like a butterfly and stinging like a bee” Muhammad Ali

I really avoid crying at all costs these days. Not because of my precious eye lashes that end up being collateral damage, but because once I start, it wouldn’t be just a few tears, it would be a whole tsunami of tears.

I had held them off for so long, but today was the day they decided to catch me unawares. A few little things that happened during the day including my latest blood test results, chipped away at my “be brave force field” and there I was sitting in my car, bawling my eyes out, or my ‘eyelashes out’, as it were.

Not such a big deal in the grand scheme of things, this time my red blood cells weren’t happy, causing me to be anaemic. So a blood transfusion was going to be on the treatment menu for the next day.

It’s just that sometimes all this can be so overwhelming, and the fear can invade your thoughts like storm troopers. It takes a lot of energy and willpower to get back to, ‘being in the moment’.  And it was just at that ‘moment’ when I could feel the ‘tsunami of tears’ on their way, that one of my troops rang me.

Her beautiful voice and kind words calmed me down. Her reassurance that everything would be ok, distinguished my fear and recharged my hope.

My Brave Man came home and held me in his protective arms and he too found the right words to reassure me that everything would be ok.

I went to sleep that night feeling back in the moment, floating like a butterfly, ready to sting like a bee at my sixth round of chemotherapy the next day.

My friend Sonia

One person I shared a lot of my deepest fears and thoughts with was, my lovely friend Sonia. I had met her some years back through a Troop friend of mine. I remember when I first met her thinking how funny and bright she was. And she shared the same passion as me for writing and laughing at funny stuff. Sonia’s enthusiasm for life and inquisitive nature, made her interesting and someone you wanted to be around.

Last year at 35, she was diagnosed with cancer. Totally out of the blue. She was at a really happy point in her life. Not long had she been married to her gorgeous husband and another Brave Man. They were in the process of trying to have a family, planning renovations for their house and sharing an exciting time with her sister Tania, as they planned her own wedding.

It started off, that I would go visit her, share the things I did to get myself through treatment and the scary bits. But it was her that would end up inspiring me, her courage and energy never waivered she would do anything to grow old with her beloved Brave Man.

Over the 12 months that she went through treatment we shared a lot, mostly late at night when the day was done. We would send each other messages as we sat in our beds reflecting on the day and what has happened to us both. Some messages funny and some sad, but we understood what we were both going through and that was comforting.

 

The last message I got from her was on Tuesday night January 3^rd,

“I’m feeling terrible. So much so I’m off to Cabrini Malvern for a few nights,

another chest infection they think. Great! So I’m all ready for the trial on Tuesday. I don’t like crying either, makes it even harder to breathe. But sometimes you just can’t help it! I haven’t cried for a couple of days now. But I know once I start I may just never stop. Speak to you tmrw. Lots of love xxxx “

Sonia passed away four days later on January 7^th 2012.

 

We celebrated the ‘Year of the Dragon’ with our Besty Troop friends and their three little mini troops. We had such a lovely time altogether in our farm house and loved so much sharing our special place with them, even though I spent most of my time in a ‘vertical position’. And while they would adventure down the beach riding the Johanna beach waves, I stayed in bed, riding the waves of nausea. Still it was nice to share their company.  Memories and moments, that’s all you need!

The Brave Man, my fairy and I were coming up to having 2 years straight with this inconvenient illness with barely a break to feel good and normal again. I wanted to re-name 2012 from ‘Year of the Dragon’ to ‘Year of the Dragging On and on and on…”

Just to keep things interesting, a new side effect of treatment had popped up. The old ‘burning of the souls of the feet’…. I should have seen it coming. On Christmas day the souls of my feet began to burn. The pain was incredible and became so intense that I could barely walk on them and I would hobble everywhere, like some old troll thing from Lord of the Rings.

I tried to look on the positive and see it as a good sign. Perhaps I’d been ‘firewalking’ in my sleep, I know this was done back in the Iron Age and was a test of an individual’s strength and courage. Maybe it was divine intervention and it was a sign that I was getting better.

Or maybe it was just another side effect. As I read the information pack I had been given from the hospital, I sadly realised that there was no mention of ‘divine intervention’  just the warning of;

“Be sure to tell your doctor about any numbness, tingling, or burning that you have in your hands or feet”

So I went back to being a content atheist. A week later three layers of skin blistered and peeled off the souls of my feet and I resigned myself to the fact that maybe my ‘Sex in the city’ high heel wearing days were over.

THE BFF DAY SPA

 

So after  my second lot of chemotherapy the familiar ache of my scalp began. It’s the first sign that yourhair is about to fall out.

I wanted to make the most of the last few days of hair, so my fairy and I set up a ‘BFF Day Spa’ (the name was her idea). We spent the morning putting make up on, doing our hair, painting our nails and massaging each other’s feet. There was a lot of giggling about how my fairy would paint more ‘toe’ than ‘toe nail’ and the names of Spa Treatments we would make up for our shop, deciding our first customer would be the Brave Man.

3RD WEEK OF CHEMOTHERAPY

I went in to the hospital today, all ‘psyched’ and ready for my next lot of chemotherapy, but was told that my treatment this week had been cancelled. The results of my blood test showed my white blood cell count was too low and the risk of infection was too great. I was devastated  that it had been cancelled. I worry that any delay, gives the ‘lurker’ inside me the opportunity to grow. I was explained one of the chemotherapy drugs I have, can obliterate my bone barrow which is what we need for our immune system to be strong.

It will eventually build back up, but this week was not quite enough.

my fairy having fun with her new birthday present

Still feeling lousy, we checked into hospital for a 5 day stay of the hardcore antibiotics. I wished so hard that they were working but I still felt like the Grinch had come and not only stolen my Christmas but taken one of my lungs along with him.

december 2011 a couple of hospital visitors maybe future doctors?

Hearing the moaning in the dead of the night, would bring my thoughts into centre court as if listening to a world ranking tennis player, groaning every time she would brace herself for another grand slam….. if you know what I mean.  

december 2011 fairy and I having a good-night skype me in my hospital bed……her in bed at home

July 2011 creating our ‘happily ever after’

One thing that we had all been very focused on was the fact that we had bought a little farmhouse during the year. It’s about a 2 ½ hour drive from Melbourne along the Great Ocean Road in a little place called Johanna. It’s set amongst green rolling hills and a valley and it is so picturesque and serene.

December 2011 our little slice of heaven

Johanna is very special to us because it’s where the Brave Man and I had our first romantic triste. We spent many weekends here in the early days, the Brave Man trying to woo me with his country boy charm, me trying to fake that I loved jumping farm fences and running as ‘one’ amongst the cows. The only “moo moo”, I knew at the time was the high fashioned brand “Miu Miu” which probably makes its products out of those very cows, I was trying to be ‘one’ with.

 

the barn with the big red door

November 2011 farmer girl

December 2011 good morning Johanna from my bedroom window

Meanwhile, I get out of hospital, Sienna officially turns 7 and my mum gets a second opinion. Things are looking up but something is still not quite right.

December 11, 2011 waking up 7