Thank you to everyone for the love and kindness shared with us over the last days.  In amongst the sadness, we have found time to laugh and smile, as we preface each decision and question with “What would Rachel do?”

A celebration of the Lovely Life of Rachel West for her family and friends will be held at 10am on Thursday 27 December 2012 at The International, 81 Bay Street, Brighton 3186.

A private family service will be held on 24 December 2012.

 

A Lovely Life

Rachel passed away on 21 December 2012.

There is a quote that Rachel loved:

“Our lives are like precious stones mined from the ground.  Whether we let life’s experiences crush us, or polish us, depends on what we are made of.”

Rachel shone brighter than any diamond.

Through her love and friendship she gifted us her passion, humour, caring, creativity, strength and loyalty.

Rachel was Sienna’s and my best friend.  We will miss her every day and will always be grateful for all she gave us.

 

Celebrating a Lovely Life

We will be holding a celebration of Rachel’s life soon and I will advise details.

For those of you who are thinking of sending flowers, our wish is that instead you make a donation to the National Breast Cancer Foundation at http://www.breastcancerfundraising.org.au/personalPage.aspx?SID=196272&LangPref=en-CA

 

Growing up Mummy

Rachel’s greatest wish is that Sienna grows up knowing about her mum.

Over the last couple of years Rachel has created and written a beautiful book “Growing up Mummy” for Sienna. It tells the story of Rachel’s life through her own words, art and creativity.  It will bring to life Sienna’s precious memories and help her to answer questions she could only ask of Rachel.

I promised Rachel that I would add another chapter to her book and I would like all of her friends to help me.

As Sienna grows older, I want her to know how many people loved her mum and to know the family, friendships, experiences and events that made her such a beautiful person.

In a quiet moment, today, tomorrow or very soon can you please take time to make a precious memory for Sienna?  It can be a small paragraph, a long letter, a long forgotten photo – anything that is a window for Sienna to see Rachel through.

I have created a special email address that you can send it to or to request mailing details: AmemoryforSienna@bigpond.com.

 

Besty Troops

Rachel could not have been more privileged than to be loved by her Besty Troops.  There was magic in the way Rachel created friendships with everyone but none more so than the Besties.  These were friendships from all the different phases of her life that grew with her and shared her life.  With all of my heart, I thank them for all they gave Rachel.

Gary xx

Oh my goodness, they think I’m one of them, waiting to be pushed, I’ll never see Gary and Sienna again, but someone began pushing me and it wasn’t the Brave Man or the Besties. Oh for heaven’s sake what do I do? “Brave Man where are you?”

To be continued……

So once Gary discovered that the cost of the ‘Shooting Ducks’ at the Colac Show, had gone up substantially since he was 7, he gave up. It was only then he realised his wife was about to be wheeled off with the local, Colac Health Travelling Circus. (No doubt they’d heard I could juggle). My Brave Man dove for my wheels of the ‘black chariot’, and got me back in control. It was an elderly lady who had evidently hooked the ‘kerb climber’ from her new electric model into my ‘footplate’.

The show bags which had been chosen with such careful consideration, were soon thrown out after we discovered that the ‘now’ white coloured ‘used to be milk coloured’ chocolates had melted at least 3 purchases ago and the little plastic bits and bobs, that look like treasures, fell apart within the first four minutes.

So we bid the Colac Show good-bye, and made our way to our retreat in Johanna. That afternoon the girls rested, while the Brave man and his Man Troop transformed the barn into a ………… errrrr….. a barn?? Mmmm.

Ok so they put up lots of decorations, it was the best feeling seeing tonnes and tonnes of my online shopping going into place, just like I had imagined. It will be a birthday barn dance to be remembered.

As usual, we had the loveliest time with our friends, laughs, cuddles and love. The next day, we said farewell to our Besties, whose poor little chooks were quite sick and needed to be in their own beds. The Brave Man made the final touches for the fabulous Farm Party. Then a couple of days later we were back on the road to Melbourne for my Fairy’s Ballet Routine. Her and her besty junior Troop CC, had meticulously practised for weeks to perform in front of the School at Assembly.

I was mesmorised by this beautiful little pink girl , I just found out where my litttle girl had been whilst I’d been sleeping for the past 3 years. She’d been growing up, she was no longer the little piece of ‘valcro’, that stuck to me because she was so nervous going out from under the ‘mum zone’.

They danced a self-choreographed ballet routine, that they had been practising every week, to part of Tchaikovsky’s, Nutcracker. Watching their beautiful posture and sweet smiles as they pirouetted across the stage. We couldn’t have felt more proud than we did right then.

We were also just in time for me to have my first visit from my, palaeontologist, or pathologist, pantaloons wearer, parakeet plucker. No matter how hard I tried, I just couldn’t say the name. Eventually I settled on Paella Carer*. It sounds warm and comforting!

A Paella Carer moderates pain or sorrow (usually by drugs) by making things easier to bear. They are currently coming each week, to check on me and see how I’m coping, how I’m getting around etc…. Even though I was very anxious about the visit, it turned out not as scary as I thought.

At the moment I don’t have pain. Although a couple of times I’ve woken up with the most excruciating pain in my ankles and shins. The pain was so intense that it had me in tears until my Brave Man came to the rescue with pain medication. After 20 minutes, the pain subsided.

I’m also feeling some dull aches in my liver, which is not so much pain, but a reminder that something is not quite right.

My head is probably the hardest to manage, as I’m getting many headaches. My Fairy asked me what it feels like when I have got a head ache. All I could answer was that it is like, “A big volcano sitting on the top of my head about to erupt, the pressure getting stronger and stronger until it feels like it is about to explode, blowing my ears off and sending my eyes popping across the room.”  Too much??? Not sure that was the answer she was expecting.

Most of the time it feels like I’m listening to a big sea shell along with a few high pitched fish, an orca whale and a small version of Moby Dick stuck inside it.

I called on my two Besty Troops today, to come on a ‘secret mission’ with me. It was a couple of days until my fairies’ Farm Party and I really wanted to get a touch of ‘farmer in me’. I borrowed our familie’s, local scarecrow’s red and white gingham shirt. A little bit of his straw fur chest and was hoping to find a cute little set of plaits, to go. Just as I was about to step into the ‘wigs are us’ shop, another wobbly leg episode was happening. With superwoman strength, my two besties tried with all their might to keep me up. As the tremours subsided the girls looked very hot and bothered, I was just in a zone of confusement, probably the ‘twighlight zone’.

As I eventually walked in, I did think it rather ironic that I had chosen this song to hum in my mind….

“I would not be just a nuffin’
My head all full of stuffin’
My heart all  full of pain
I would dance and be merry
Life would be a ding-a-derry
If  I only had a brain

Music does the funniest things, it can conjur up, all old and wonderful memories or some sad ones as well. I was able to listen to some old music during the week. It reminded me of the happiness I had when I was a little girl. Watching my Mum and Dad and their friends playing and singing around the piano. The sound of my Dad’s beautiful deep singing voice always gave me goose bumps. My mum is very talented and can play anything on the piano.

Whilst many of my friends were playing Blondie, Duran Duran, and The Eagles. I was still rocking on to David Bowie, Bob Dylan, Janis Joplin and James Taylor, and I still love them today as much as I loved them when I was little. It brings great love to my soul!!

I had a bit of a ‘sit down fall today’……. All I needed to walk was 6 steps and my legs just told my brain to forget it, they can’t be bothered. So after commando crawling back to my bed and dragging myself back up onto the bed….. I felt like I’d just climbed Everest, when in fact I’d scaled Sheridan (my sheets).

On Thursday night we met Wendy Woo Woo and she came with us on the road trip back to Johanna for my Fairy’s birthday party. We were all excited because she was coming to Johanna for the first time. And not only that, the most special treat ever, we promised our Fairy that we could have take-away Red Rooster. And it turned out to be very special indeed. Taking seven minutes to chew through the first bite of chicken (if it actually was real chicken) and a bread roll that tasted like it had sat in the shoes of a tinea suffering person for 6 months. Almost in unison, we threw our buns into the ‘rooters’ bag, swearing, never again, never again!!!

We woke up on Friday morning to a beautiful Johanna morning. Crisp, green, bluesky and taking in the arromatic fragrance of the Johanna mountain air. The smell of the yummiest freshly baked bread drifted through the house as my Brave Man was up getting coffees. The first to arrive would be Sienna’s best friend troop cousins, driven by my brave parents.  My beautiful nieces, troop Billie and my other beautiful niece troop Hannah.

 

And then a special announcement through FaceBook, heralding the ‘Burns Machine’* had arrived!!  My aunties, and their daughters my cousins, who had come down from Sydney and Cairns. Their brothers, my uncles, who are like protective brothers met them at the  airport for the trip to Johanna. Seven hours later they would arrive at Johanna.

The family were together and we were happy, the Fairy was jumping out of her chaps with excitement.

Let the Party Begin

The day started early of course.  The Fairy and her two cousins were as excited as pogo sticks with extra pogo. 

Our first arrivals were my two Besty Troops, Narelle and Tiffy, both coming early to help.  And that’s exactly what they did.

It wasn’t long before all of the Fairy’s friends started to arrive and the fun began. Choosing beds, filling hungry tummies with yummy lunch and putting bathers on ready for the Johanna beach to be discovered and swooping down the sand dunes. Then off for swimming fun at the local pool.

 

 

Treasure Hunt

Ok, so they were really excited about this, but Sienna confided in me later, that the instructions got a little confusing towards the end of the hunt. I did a half smile and knew my troublesome brain had been interfering. But they all got there in the end and found the treasure.

 

Barn Dance

The Wonderful Wendy Woo Woo was the Barn Dance Queen. She played ‘Walk the Line’ on her Ukulele as the girls walked up on stage. What an extraordinary voice this angel has.

Then there was the chicken dance, the Macarena etc… the girls had a ball. Even I had a dance with Sienna, probably more of a shuffle, wobble, and a whooooaaaa, I think I’m going to fall head first into this hay stack. Sienna thought it was the funniest thing ever.

 

 

 

Bed Time

That night I lay in bed as tired as all hell, even though I didn’t do anything, just watched all the other mum’s, my Brave Man, his mum and my Dad, work so hard to give all the girls a good party. And the girls were so happy and all having a smile from ear to ear. I just felt totally humbled by these lovely people who wanted to help our little family, such good people don’t come around like this every day.

By 9.30pm we had 9 sweet little 8 year old girls and 1 precious 11 year old, sleeping soundly. Well we couldn’t hear a thing, and assumed that they hadn’t slipped out the window and snuck up to the local pub for a beer?

I don’t know if my deterioration is due to radiation treatment or cancer growing. But I’m hoping it’s the side effect of radiation & I’ll slowly recover back like I was told. I would just love a couple of days of feeling good and play with Sienna and Gary or walk down to our favourite magic tree.

But constant dull headaches which are also a reminder of something going on. The blurriness and double vision adds to the anxiety.

I’m sick of cancer, I wish it was sick of me!

 

I was overwhelmed with the amount of love and support that I have been receiving from around the world…… yes, around the world!

So thank you for sitting in bed with me, sharing my thoughts, not judging me for the (granny style) nighties I now wear. And for allowing me to be a mum who’s having the ‘ultimate bad hair day’!

 

 

So there were two main things that we were planning. An 8 year old Birthday Farm Party that we decided should happen sooner rather than later.

And of course, the other party that we currently don’t have a date for, but it will be guaranteed to be fun also. I’m almost tempted to have a ‘dress rehearsal’ because I can’t stand the thought of missing out. A dress rehearsal for a life celebration, is that a new one?

I smile to myself, as I can just imagine me, looking out over the proceedings, checking that everyone has their gift bags, the special star prize  under the lucky griever’s seat had been found. The unicorns are gently landing on the lawn as the children are watching and being taken into this magical experience. No doubt my braveman is in the middle of retreating into the ‘feotel position’ about to swallow his tongue. Hopefully, the vision of the whimsical carousel slowly turning around, will probably jolt him back into reality and his tongue will release.

I’ve loved organising all Sienna’s parties over the last 8 years I hope she remembers the fun she had. My Brave Man and my Dad have done a lot of filming and photography, so she shouldn’t forget. I couldn’t let this one go without doing something over the top and fun for the girls.

So a Farm Sleep over party, including Barn Dance, Beach Fun, Swimming and Treasure Hunt was to be this year’s Birthday.

Of course, I now have my good friend the, ‘WALKER’. No not the Johhny Walker. It’s just the ‘WALKER’, which helps me get around without the tumble overs and my Fairy loves to play on it and keep it in her bedroom.

Which is not handy, especially when I fell over the other night in the home study at about 2am causing a major crash like some herd of woolly mammoth’s had just staged a ‘home invasion’.

My Brave man is like an anxious mother and jumped out of bed in a panic, saying, “I’ve just busted my hamstrings, what are you doing?” It took a little bit for him to get me up, first I was wedged behind the door, then he actually needed to pick up a ‘dead’ weight which is what I’m like after one of these episodes. He talked to me like I was a naughty girl for getting out of bed without telling him. Just quietly, I loved the ‘caring crossness’ in his voice, it gave me butterflies, is that weird? I looked at him but my eyesight was so blurry, and the feeling of dizziness was like I was on the high seas.

So planning continues, we sat on the bed together, the Besty Troops and the Brave Man. I explained what I’d organised for Sienna’s Birthday Party so far. Although because the effect of brain radiation is causing more memory loss and more confusion. I’m finding that I have to have a plethora of lists and pictures to remind me of what I “had in mind”.

The girls and Gary are so used to me making no sense at the moment and I hear a chuckle now and then, because they have no idea what I have just said, but they know what I’m saying. It must be like catching up at an Alzheimer’s convention.

I’ve always told them that, we’ll be friends until we’re old and senile…. then we’ll become new friends again.

Gary rolled his eyes and reminded me for the 5^th time that miniature Shetland Ponies, Unicorns and Carousels are not to be part of the online shopping birthday party plan. Funny, given I was talking of my own, ‘Big Celebration’, so I guess it’s the green light for that one!

Sienna’s 8^th Birthday Farm Party will be exciting and over the top as ‘tradition dictates.’ Online ordering….. it’s like Christmas every day. Every time we’d open a newly delivered box, it was always a sense of great anticipation. And there would be, “oh that is so gorgeous”, or what the hell did you buy this for. Most of the time , my answer would be, “because I forgot.”

And even though it’s so surreal, we went over some of my thoughts and ideas for a Private Service and Big Celebration. Mostly we laughed because the seriousness of it all was far too painful to believe. I just want the music to be beautiful, my little girl to be hugged by her Dad and her Dad to be hugged by my troops. I want them to know that, it’s not good-bye because we’ll meet again one day. And I really want unicorns!

 

SIENNA

My sweet girl, trying to work out in her little inexperienced mind, the meaning of why mum’s medication no longer works anymore. She’s got a body book and one night we lay in the bed and talked about the different organs and what they do.

The function of the Liver and why my Liver doesn’t work that well and what that means. We also talked and looked at the brain, and what little amount of cancer cells on the cerebellum is causing some strange side effects, especially with my steadiness on my legs. She was very interested and wanted to understand. But she also just wanted her mum to read her a normal bed time book.

Oh my darling sienna.  She loves running around getting stuff for me, tissues, water, nightie’s. I am so painfully aware that she’s 8 and becoming a little carer herself. The teacher’s have been very protective & watchful as Sienna spends her first week at school with her troubling news. Still with a little virus lingering it was a difficult week.

Until she realized…. ‘sad face’ = can go home. ‘I miss Mum’ = can I go home… “I’ve got a sore tummy”….. Can I go home, I’ve got a sore eye, My drama teacher’s voice is too loud, “can I go home”, I didn’t get enough vegemite on my sambo…. “Can go home?”

But I understand, it’s an isolating and confusing thing to be told by your parents that mummy’s medicine is no longer working. For the whole time I’ve been sick, I’ve told her ‘mummy will get better’, because I believed it, we all did. I’ve still got hope, you just can’t lose it. Sienna and I even made a list together of what she first wants to do when I’m better. Top 3: Cartwheel, Handstand and jump on the trampoline. I just couldn’t quite get there. I probably could manage some sort of stunt roll now if I let go of the ‘Walker’.

Her home room teacher, Ms Kind Eyes has been so very protective & watchful as Sienna spends her first week at school with her troubling news. Still with a little virus lingering it was a difficult week. But if she needs us she needs us. She’s just about eight, but she’s been told her mum doesn’t have a long life, so we don’t have expectations for her. We will be here no matter what.

The other day she came home telling me of the upset she felt at school, being told by another teacher that she was, “taking advantage of her situation.”

I understand she’s probably worked out the connection, but she’s still a little kid and I couldn’t think of anything worse to be told when your that age. What a constant stomach ache to have, a constant worry to have that maybe she’ll come home and mum won’t be there. I’m sure it was said with the right intentions, but knowing how I felt at 11 when my sister died in a car accident, I would have done and said anything to be with my mum.

HEALTH

I feel like I’m deteriating, just that my legs are so weak and I’m beginning to get very weak arms. My fingers and hands feel totally numb, but I thank each day when I wake up and can still type, can still talk and once I work out where I am….. that I’m still alive. My Sleeping is not good but I’m super tired all the time. It’s like I don’t want to go to sleep because I’m scared of wasting time. So I’m going to sleep at 4, 5 or sometimes 6 am. I just spend my time writing, then I think, “Oh my god I haven’t spoken to Sienna enough about Evolution”, and then I go onto write my views about the Big Bang. It was out of control – until one night Gary sat with me until I fell asleep at 10pm.

I don’t know if my deterioration is due to radiation treatment or C getting worse. I’m hoping for the side effect of radiation to be working right now & I’ll slowly recover. But I don’t feel like recovery is happening.

Constant dull headaches are also a reminder of something going on, from ‘stuff’ buzzing around in there.

PALAEONTOLOGIST

So my appointment was due with the Nurse from ‘palienpassion school’ and it wasn’t as bad as I first thought, despite me have a total ‘memory block’ for saying the right name. She explained what their role was in ‘EOL’ – (End of life) Nothing got scary…. Except that EOL term.

She explained a lot more and got me to sign some forms. And by the time I bid her farewell, I’d forgotten everything she had said, in fact she could have been a Jehovah’s witness for all I knew.

COLAC SHOW

A little break from life and party planning, we decided to go to the Colac Show. We went with our lovely Besty Family, Dan, Narelle, Billi, Alice and Dusty (our scrumptious god daughter).

Although a big weekend with getting up early and a 2 hour drive to Colac, it was worth it to see 8 pairs of pretty excited little eyes.

The Brave Man and I knew this was another day of being brave. This was another day to remind myself if I want to keep being involved with Sienna’s life, I would have to have another thing to help me. A wheel chair!

I know some might think, ‘wheel chair’, that’s ok you get to relax. But it’s a symbol….. another symbol that I’m sick, there’s definitely no hiding or denying this one. And I’m not worried about anyone else, other than what My Fairy will remember. I used to get around in lycra, runners and go to the gym after dropping her to school.

My Brave Man borrowed it from one of his Mum’s friends, of a friend, of a neighbour, who was married to the past president of the Bowls Team and with the promise of a tin of Granny’s yo-yo’s we could borrow it. Of course another little crack appeared in my heart as I sat in it.

But then I figured, if I didn’t see myself in this contraption then I’d be fine, I’d just think it was me only a bit smaller. And that wasn’t only the best part….the best part was, when my Brave Man paid for all the tickets at a grand total of $51. The ticket sales dude looked down at me like I was Rupereck the Monkey Boy and said…”Ahhhh let’s round it off to $50, forget the $1.” I’d never felt full of so much self-esteem for ages. And with a self- fulfilling heart of an extra dollar. We headed straight for the Magic Maze of Mirrors. And I got to have a real good look.

 

Crazy Cars were fun, but not sure if it was the girls or boys that had more fun.

 

SHOWBAGS

So we were back on Games Alley and the Brave Man was the ‘pusher’, there were a few near misses like taking out the little kids slushie, and the time where Gary kind of left me centre in the middle of the crowd of the long stretch games arcade. He had seen his favourite childhood ‘shoot the ducks game’. And as a whole bunch of other wheel chair comrades from the local Colac Mental Health Community Support Centre surrounded me as they went by.

My biggest nightmare flashed before my eyes…..

Oh my God, they think I’m one of them, waiting to be pushed, I’ll never see Gary and Sienna again, but someone began pushing me and it wasn’t the Brave Man or the Besties. Oh for heaven’s sake what do I do, Brave Man where are you?

 

To be continued……..

After years of appointments, ups and downs and 100% trust, in a friendship I never expected to have.  His mobile number is finally in my favourites and today I use it with great gusto.

We all thought that exercise would strengthen my legs, but I knew it was more than that, something else was happening in my podgy little trotters.

So like stealth, I went to my favourite’s in my phone and found, ‘Gary Richo Mobe,’ and sent him a text.

“Hi Gary I think I need to see you asap. I’m having lots of pain in my liver, feeling very sick and lots of balance when I walk, any chance of seeing you today? I just can’t bare it!

Rgds Rachel “

2 minutes later….

“Call rooms- Yoland there I am away. Gary”

So next minute I ring his rooms and as I’m booking  in to see Yoland,

I can here him on the phone giving her an update of my current status.

The Brave Man and I go in and see her that afternoon.  I explain to her about the new symptoms. She run’s some,  hands on ‘cognitive testing’, and all of a sudden I can see before my eyes, that no matter how determined I am, my brain won’t let my finger touch my nose.

My feet won’t let me walk in a straight line. It reminds me of the stories my Dad use to tell me, when the local country sheriff, would pull him over to check if he’d been drinking. The fact that he was asleep in the car waiting at the crossing as the train passed, might have been a slight hint that he wasn’t out drinking lemonade spiders. When asked what he was doing, Dad just said the car wouldn’t start & he was trying to get it started, and miracles of miracles, it started just as the boom gate was going up. Dad bid his way and amazingly didn’t get arrested.

So I sat on Yoland’s hospital bed staring at my grey feet dangling below, and wished so much in my head that I could make them move, but they just wanted to stay there.

Throughout my whole challenge with BC, I always used, “mind over matter.” I thrived on people saying, you can’t do that, you won’t do that again. It just meant, yes I will, I’ll do it again, I’ll show Sienna and Gary that this little body of mine is strong and I am so indebted to this strong little body. And knew with a little tiny determination to make one step forward, I would get better.

But after seeing Dr Yoland, I realised better was no longer, ‘mind over matter ’ would be no more, something was terribly wrong.

We urgently need an MRI. So she books me in to Hotel Cabrini Brighton, as an in- patient and then had me transferred to Hotel Cabrini Malvern the next day.

 

Ironically it’s also the place that we had our girl, nearly 8 years ago. Another happy and lovely memory we take from our lovely life together. I always get butterflies in my tummy remembering back to December 11^th 2004, having the most exciting time of finally meeting our little pink girl.

Getting these massive headaches, that would come on any time of the day and it was like this big cricket ball pushing against the base of my neck, actually probably worse, it was like two baseball pitchers lining up at the same time and pitching straight to the back of my head cracking my skull to smithereens!

Like a vice squeezed into my head showing no mercy, actually, no, the pain I see when my credit card payment comes in and I know I’ve got seconds to minutes before my brave man sees it too.

Or it could be just some kind of body time bomb, pushing harder and harder until my head and ears would give way exploding through my bedroom ceiling.

So I settled into hospital straight away, and my Brave Man and I talked about the MRI scan I was about to leave for. As I opted not to do the Ambulance thing, (too many bells and whistles and fuss). The Brave man drove me to Hotel Cabrini Malvern and before I knew it, my two Besty Troops, Rel and Tiff were sitting in the back of the car too, calling out, “Precious Cargo coming through! Get out of our road”.

The MRI scan went pretty quickly as I was hoping, and by the time I went back to Hotel Cabrini Brighton and settled back into my bed, Dr Yoland came in with results in hand.

My beautiful and protective Doctor Deb was there, which was good. She would explain things later that I didn’t understand. Of course Brave Man was there sticking to me like glue and me sticking to him like superglue. We are still so young, and whilst we don’t feel sorry for ourselves, we just think, this is REAL REAL Hard and really, really unfair!!!! We just want to hide in each others arms and cry and cry.

But we breathed slowly and tried to stay in control. The control I focused on was the hand holding mine, and then Dr Yoland, started explaining……

–         What they have seen in the MRI, is on the base of the brain which is around the cerebellum, there is cancer there. She said that they can see the ‘markings of cancer’ sitting on the outside of my brain. This makes total sense why I was experiencing dizziness, total lack of balance.

The cerebellum is an important structure for:

• Balance
• Speech
• Control  of movements (co-ordination)
• Walking

Then there’s the spinal cord. She explained, that the cancer in the brain can cause a ‘drippage’ effect. So it’s been slowly dripping down my spinal cord, but whilst there’s evidence of it, there’s no big ‘lolly pops’ that they can see at this stage. It’s a wait and see situation, and once I start feeling the symptoms causing pain or other side effects, we’ll deal with it then. “Yep, I’m feeling pain, lots of pain my heart is going to explode, this is painful.”

Ok so I’m not so overwhelmed with the side effects. But quite relieved it’s not in an area where I start forming different personalities or even worse Tourette’s. I really don’t want to tell my friends or family to spontaneously ‘FFOFF’. Please forgive me, it’s not me.

I was also quietly excited that nowhere on that list, was there indicating I would have to, stop using the computer and cease ordering online shopping. I’m band from using the car, and feel sad that my independence is being popped off the list. Oh and there was mention of a ‘walker’, and I’m guessing it’s not a ‘dog walker’.

Because chemotherapy does not at all work on the brain (in my case) The next step was 5 days of radiation, this will hopefully reduce swelling, reduce, the dizzy wobbly legs and even more hopefully kill those little ‘mother zappers’ in their tracks.

I knew what the Brave Man and I wanted to ask and it seemed much easier to ask Dr Yoland than my Health Stylist…. He would have already known, but I didn’t want him to feel bad. So my Brave Man asked Yoland. “Without chemo, radiotherapy or any other treatment………how long have we got?” I felt strong and ready to hear what she was going to say….

“Without treatment maybe Christmas”………

But I’m having treatment. So there’s no, ‘without treatment’. I will never give up, none of us will, I would never do that to my magic family of three, and they would never give up on their mum or wife. I was even offered a little white flag…….. But I will never give up, and I know a great place where that ‘little white flag’, would snuggly fit.

So that day we went straight to the Hotel Alfred and I was fitted for a mask. It was so attractive, I thought the Brave Man and I could wear it for Halloween.

 

We met with Dr Karen Taylor who is my Radiologist Oncologist and she went through the process and what I would expect to feel going forward. She did say that the radiotherapy would make me feel worse before I would feel better again. So I’d be more dizzy and wobbly and have total memory short term memory issues.  The swelling too would give me some trouble, but I’m now on some kind of pain patches that should help.

Each day either the Troops or the Brave Man took me into the Alfred radiotherapy unit, and the zapping began. It only took 10 minutes  for the zap but the setting up and the mask took a wee longer.

I was so confused about how relaxed and unscared Iwas, I just thought here’s another chance, let’s do it.

By Wednesday 5 days later, I was done and was ready for the next day of Chemotherapy.

Of course the mesh face mask was a highlight, and my chins have never felt so secure and together. My Brave Man’s, little heart was being wounded and wounded each day, seeing his love like this. But I try so hard to show him I’m going to be ok, and he and Sienna will be ok in time.

But to lighten the atmosphere of the room I tried to make some light hearted jokes about, being Hannibal Lecter’s  love child, and what a great thing for Show and Share for Sienna.

Yep……. Totally not funny…. Maybe I’ll open the front door with my mask on, with my little white fluffy pieces of hair pocking through the mesh holes and scare the bejeezuz out of one of the little neighbouring kids. The vision of that would be at least 5 years of teenage therapy.

Oct 15^th  – Gary Richo back – He confirmed Yoland’s treatment plan, he agreed with Yoland’s potential timing plan. But did say that no-one knows what this ‘stuff’ will do. It’s, totally irrational and erratic and can only be controlled up to a point.

We talked about options….

A big bolt could be screwed into my skull and brain where they would inject the chemo directly into my brain everyday. It would have the added effect of dripping down my spinal cord and still reach my liver.

Of course the first vision for me was, oh hello‘Patient Rachelstein’, and all the issues with having a bolt stuck out of my head. Infection, worse headaches, someone bumps it. And the best thing for going through all of that is the fact that it could give you an extra 2 -3 weeks.

My Besty Troop Tiffy: “Oh yes, I remember fondly those final three weeks when Rachel had the shiny gold bolt hanging out of her head, I thought she was just being cool to the end with the latest ‘sass and bide’, head accessories.  

Those nasty little cells can be hiding anywhere in the body. We hugged, I thanked him for everything, I know he would have tried anything to save our family.

Oct 15^th

As the radiotherapy went on I became more affected by the balance I was feeling in my legs. Today my little Troop Mandy took me, I’d make a few steps hanging on to my Little Troop Mandy, but all of a sudden this strange fainting feeling came over me along and then the intensive feeling caused by the fluid on the brain, with a serious feeling of confusion. I recognised these feelings and new I was about to lose it.

My Troop although about 20 sizes smaller than me, managed with all her might and determination to keep me from hitting the floor.

And as we tried to find a seat my legs went ‘boneless’, I had to laugh because it probably looked like two dancers at the Muppet Show at the end of the night.

I kept saying to her, “quick don’t let me look like I’m sick”, with that she giggled for about 10 minutes, because just about everyone were looking at us in sorrow or, “gee that looks a little weird dance.”

So it was 10 days since we were told, I had already had 5 days of radiation, one chemo and waiting on one more.

Telling Sienna

We knew we had to tell Sienna sooner rather than later, she knew something was happening. So we spoke to the lovely Brave Lady who is an expert in childhood counselling and especially little darling petals like mine who his experience a hard time.

We set my room up so it was nice and comfy, and she had her dinner. Such a heartbreaking feeling knowing what we were about to tell our girl. Even trying to start the conversation. We were like two little kids about to confess to our mum about something naughty we had done.

I had mentioned the other day to her that they found some cancer on the brain and we’re just having the radiotherapy, to get rid of it.

The next day, when the Brave Man took her to school he tried to explain that mummy’s really sick. “Oh yes I know Daddy, she’s got brain cancer.” I think the Brave Man’s head exploded that very minute.

So I said to her, “Darling I was told today that the medicine is no longer working”

“She was so shocked”, even got a little embarrassed asking the next question.

“Does that mean you’re going to” …… and she couldn’t bring herself to say the word, so she stroked her fingers across her neck.

“Yes it could darling, and maybe sooner than we would want to.”

“Daddy will you get married again?”

“I’m going to marry you”

“You can’t marry your daughter… what about that lady you said you really wanted to marry.”

“Who was that”?  I asked, while I totally wanted to go to the bathroom and paint on my eyebrows, put some liner on, so he could totally see how pissed off I was that he was having these conversations with my girl. She even mentioned her name, but couldn’t quite pronounce it.

Gary sat there weary but not wanting to upset me.

“You know Dad it was Emmmm Person?”

“It was Elle McPherson”

“Oh Sienna not her”

So we reassured that we are here, no matter what, while she processes this, just like Daddy and I are doing. She can be on her own or we all sit in the bed asking questions together. But I would never allow her to cope with this on her own.

She asked her Brave Dad., “So does that mean Daddy you’ll just pick me up from school and tell me mummy’s gone?” Ouch another crack in my sad heart.

I told her we would always be together, I told her that the Doctor’s know when the time is near, and they’d be so happy if we all wanted to cuddle up together.

She asked about if I wanted to be buried in a coffin or cremated. I wished in my head so much the next question wouldn’t be, what’s a cremation.

Sienna: “So Mummy what’s the difference between a burial and a cremation?” Do I have to mention, burning, furnace, bone crushing machine?

We are not religious people but we believe in peacefully and slowly making our way to the stars once you pass away.

I wrote a poem to my two loves…. All about, I will always be around, through the breeze in the trees, the little raindrops on your cheeks and the fluttering of the leaves in our special tree.

Happy Anniversary to the Love of My Life

Nine years of marriage, adventure, laughter, discovery, and just being together. Not to mention the 5 years before.

It wasn’t until I got sick that I realised I married more than a ‘good man’, I married a Guardian Angel. A man with more human kindness and compassion that I had ever experienced.

Even though we have been together for 14 years. It has been a marriage and love that could never have been more richer, more loving and magic than you could ever imagine.

I love him so much and feel so sad that there will be a day that we won’t be sitting together enjoying our beautiful Johanna, with the warmth of the summer sun on our backs.

We had a pretty Anniversary, a dose of chemo first. That night we were visited by a very familiar looking geisha girl. She delivered platters of home made Japanese, thanks to the kind guys in the kitchen at the Pantry, who made a royal us anniversary feast.

And we all sat on the bed and had fun, tears were never far away though.

My journal entry, might be a little more often, I’d really like to share our ‘still a lovely life’ story with you, I don’t hold regret, I just hold onto all my beautiful memories and the love that surrounds us.

Despite this inconvenient illness, it is Still A Lovely Life.

 

 

 

Next week, planning, bringing birthday’s forward, and prioritising books, letters etc……

So with the help from some friends at the luxurious and magical Crown Towers in Melbourne, we created a beautiful, ‘memory maker’ for my Fairy, her junior Besty Troop and my Besty Troop. ‘The ultimate sleep over’, at the Crown Towers in the city.

We dressed up to feel the part. I spent a little more time drawing on my eyebrows so they didn’t resemble the Nike tick, wore a pair of wedges rather than my bed socks and twirled and tied my scarf so I looked more like a françaises fashionista, rather than the usual, pirate cross between a fortune teller look.

We were greeted at the entrance by a doorman, who chivalrously assisted the girls out of the car treating them like beautiful princesses. Of course, they loved every bit of it, and played the princess part perfectly.

Both girls had their cameras and by the time they had made it out of the car, across the plush welcome carpet and into the foyer they had nearly drained their batteries.  From the ‘Push Here’ sign on the revolving door button, to a group of ‘Chinese tourists standing looking up at the ceiling’. They had all photo opportunities covered.

We were ushered to the ‘Crystal Club’ like VIP’s where we were directed to check in. The girls were mesmerised by the surrounds, a huge Crystal chandelier hung in the centre of the foyer, like a gigantic shiny earing.

And just as the doors were opened to welcome us into this world of poshness, my ‘deadly wedge’ gave way and I fell to the ground, probably the large thud triggering a Tsunami in some poor little unsuspecting village in Thailand.  Fortunately I didn’t fall on my Besty Troop and crush her to death, as she tried with all heart to save me but it was useless. I was like Moto Moto, (Hippo from Madagascar) stuck like a wet mattress on the floor, with not enough strength to get myself up. Laughing seemed the only thing to do.!!

 

Finally, after that was all dealt with and we’d checked in, it was off to our room. Well the girls ran to their room, they were excited to be on the 27^th floor. And once they got in, there were……….

“I bags this bed”, “wow look at the bathroom, there’s a TV over the bath.

“And look Billi, there’s a telephone in the toilet.”

“Oh mum can we please order house service?”

“Don’t you mean Room Service?” ……

“Yes, yes, can we please order Room Service?”

But no time for Room Service. Our first stop was at Breezes, a gorgeous restaurant that looked over Melbourne, where we had a delicious lunch. I wasn’t quite used to all the walking, my head thought it could do everything, but my legs had a different idea. I felt like I had just spent three years riding a donkey across the Himalayas then all of a sudden we were off again.

We made our way to the gigantic swimming pool, the girls skipped ahead with excitement. My Besty Troop carried about 6 bags always checking on the girls ahead and on me behind. I did notice that since lunch, I struggled with my walking a bit more. I looked down and called Narelle to have a look…………….

Yep, the old ‘slip the shoes off under the restaurant table’ and blindly put them back on the wrong way, just like a 2 year old would.

Seriously, how can you cry about this…..when it’s a laugh a minute??

It was so good to hear the girls laughing, and watch them squeal with delight about this magical place. Glitz and glamour, buttons to push, doors opening for them, being posh for the day. I just loved being with my girl and felt like I was part of making her happy.

And in between the girls giggling and going off on their own, Narelle and I even had a little bit of time together, every moment is precious and we just talk.

So with the promise of a big bubble bath and some television, we were back in our room before we knew it. Whilst they fluffed and frothed amongst all the bubbles, they were out again discovering the telephone in the toilet which was unbelievable to their eyes. I must admit, I couldn’t think of anything worse than receiving a call from someone sitting on the toilet half way through their ‘occupation’, if you know what I mean. Why??

And just as they were about to dial room service from the ‘telephone toilet’, we announced it was off to Gold Class, for the movies. They were excited but I was still feeling the effects of riding a donkey for three years. Although it was beginning to feel more like a pigmy Shetland pony, and my little wobbly legs were just about on their last trot.

 

After the movie, we made our way for Sashimi and Sushi at  Koko for dinner. A restaurant with a Japanese pool and stone steps across it. My Fairy just wanted so badly to walk across, like the waitress’s.  But after we watched the strange man wringing his socks out because he’d just fallen in, she promptly changed her mind.

Had a lovely Japanese dinner with ‘my girl’, and it definately made our night when we saw the man wringing his socks out in the meditation pool after falling in.

After a big day of ‘memory making’, they were tired and their little eyes were looking a little ‘racoonish.’ The only thing getting them through dinner was the thought of room service.

I think ordering room service was their favourite thing about this whole magical night. Seems ironic, given this is exactly what happens at home when they want something, but they just call out instead of using a phone.

There was lots of conversation on the phone about, flavours, sizes, can you say that again, and “can I talk to your mummy.” But it all worked out in the end and two little buckets of ice-cream were safely and promptly delivered to our room, having two bites taken out, the girls seemed to be satisfied.

Well, that was until they found the broken plug in the bath that they insisted could be fixed by, “Room Service.”     

That night we cuddled with our girls in our King Size Beds, and gently drifted off to sleep with sweet memories of our day. I loved feeling Sienna’s toes with mine, making sure she wasn’t too far away. We held hands until we snuggled into our soft pillows and got into our favourite sleeping positions. There’s nothing like the warm feeling of falling asleep, listening to the hushed little breaths going in and out. 

The next day was the much anticipated buffet breakfast and then a morning walk.

MEMORY MAKING WITH THE BIG GIRLS

The day before results, I had ‘surprisingly and efficiently’, organised a thank you day for my beautiful troops who have been around me, protecting me, comforting me and looking after our precious little family for all this time.

I asked the troops to meet me at my house by, 10:45am, and although there was no hesitation to come, none of them knew what was in store. And I think they were a little nervous, especially when I playfully mentioned the “guru” and the “incense and bells” that had to be hung from their ears.

At 11:00am, the doorbell rang on queue, and one of the troops answered it, the courier asked for Rachel West as there was a rather large ‘on-line’ shopping delivery.

All the troops went to have a look and were relieved to not be greeted by a Guru and his brief case of coffee enemas. But a rather large, black stretch limousine, waiting to take us all on a ‘Memory Maker’.

My Dad was there to capture the moment on film, he’s so kind.

With the help from the beautiful lady, Margaret Ritter, who I met on the phone only back in 2009, when she donated to the Make Breast Cancer History Gala Evening. I had waited for so long to meet her, ‘face-to-face’, she kindly and generously offered to drive us to the winery, Domain Chandon in her amazing black and shiny stretch limousine. We talked and laughed and even had a little go on the karaoke.

 

Arriving at Domain Chandon  immediately became a wonderland of beauty, the grounds were so picturesque. We all enjoyed a beautiful lunch and looked out amongst the exquisite vineyard, we could have been anywhere in the world.

But we were together, seven troops and me. Who I love so much and feel incredibly lucky to be loved and cared for by such wonderful women. Sometimes, words just don’t come out the way you want them to, and just being together can say so much more.

What a wonderful day, and the feeling of being amongst such love is nothing you could ever imagine.

RESULTS – Progress Report

I had to think for a bit about what results I was getting that morning.  There was no major anxiety or anticipation before waiting to see my Health Stylist on results day, as we have come to get used to these appointments …. You hear the results… you talk about what it means….then you move on to the next step.

It was not a lot different that day either, although the results weren’t mind blowing.  The great changes that seemed to be happening in the Liver weren’t progressing as well and the “Japanese Golden Juice”, seemed to be slowing down. Not for a minute did I feel like giving up, I just thought… “Let’s crank it up!!”

We sat there and my Health Stylist looked at me with a very serious expression and said, “You have to start farting!” My mind was in a total swirl with what he just said. I have been told many things, and promised to do whatever it takes, but, “start farting?” It was more a matter of having the ability to stop!

But as I was still processing his comment in my mushy brain, I could hear other words such as, “getting strength back, exercising, start walking more, start fighting.”

Relieved to get that conversation cleared up, I went through my latest list of side effects, new and continuing.  I do find it difficult to say I feel unwell and mostly say I’m good when I feel like my head is about to blow off.

• Numb fingers and Hands
• Stiff neck and back
• My wobbly and tired legs, that at times can’t hold me up.
• Some strange headaches now and again that were waking me up in the night.
• Feeling nausea and a little disorientated more than usual.

My Health Stylist wrote me up for a brain scan and gave me a bonus week off chemo.

I gave my friend a hug and thanked him as usual. Always quietly thanking him on that last squeeze of my hug, for continuing to try and save me.

FIGHTING WITH A LITTLE HELP FROM MY FRIENDS

So off I  went up to the end of the street corner and back, down the local pier in St Kilda, all with a little help from my friends.

LOTS HAPPENING BEFORE START OF SCHOOL HOLIDAYS

So the last week before school holidays, and there were a few things going on, of course I would do anything not to miss anyone of them and tried my best to be there for my girl.

A brain scan was booked in for a few days after chemo. Because it was school holidays, Sienna came too. The three of us together going for a scan to see if mummy has brain cancer, what an outing. Is it right or wrong to bring your 7 year old to watch. She loved it, so interested in the buttons and the screens and all the computers. And seeing mummy’s brain, wow what other 7 year old gets to see that kind of stuff?

MEMORY MAKING WITH OUR LITTLE FAMILY

A few days later, it was an exciting evening, September 27^th!

We were taking Sienna to see Swan Lake the ballet at the Arts Centre. We dressed up in our fineries put a bit of lippy on (the girls only) and off we went to a night of Odette the princess, who was turned into a swan by an evil sorcerer’s curse.

I was still so wobbly on my feet, and felt quite nervous about walking around in crowds of people and up and down stairs. All I could focus on of was getting to our seats without me toppling over and potentially crushing someone. Or even worse, tripping over into some old Patron’s lap and being wedged in his lap, potentially dying of suffocation amongst his nether regions.

We finally made it to our seats which were great. Act I opened and our Fairy sat there with eyes as wide as saucers, the beautiful and mesmerising dancing and the spectacle of the costumes, captivated her every blink and breath.

I loved being there, I loved watching her loving being there. I loved listening to the music that my Mum and Dad would play and I would dance to.  My Dad would lift me into the air, as I would point my toes and reach for the stars. As my eyes misted up with happy memories, I realised I would have been the luckiest 18 year old around.

That night we slept with Swans in our dreams. Maybe not my Brave Man, I think he was happy to be ‘done and dusted’ with his ballet experience.

Day’s after we didn’t hear from my Health Stylist, he was to ring if there was anything wrong with my results. With no phone call we were happy that everything was ok and we carried on.

I loved our couple of weeks of ‘memory making’, it was lots of fun, a little tiring but worth every bit of it.

Arriving at our Johanna Haven………Being greeted by the prettiest rainbow

The last week of school holidays, we spent in our Johanna haven. Our poor Fairy developed a virus and was so sick all week. She cuddled up to me like a little Koala, and every night the Brave Man slept in her room to give her medication for her temperature when she would wake at 2am.

Even though she was so miserable and her temperature stayed on 39-40C degrees all week, I quietly loved being a proper mum to her. Cuddle when she needed one, ice-pole when she couldn’t have anything else, cold face washers to cool down her hot little face. And stroking her face when she couldn’t get to sleep, telling her, “Mummy’s here, I’ll make you better.”

Meanwhile I was getting more unsteady on my feet and feeling so progressively unwell and emotional. I just knew these feelings were  new and not normal. I decided not to say I was fine, and ring my Health Stylist first thing Monday morning to leave an urgent message.

That morning Sienna got ready for her first day back for the last term of school, and I sent my Health Stylist a message as soon as my Brave Man took her out the door to go to school.

We were getting the feeling that it was going to be another challenging week.

 

 

 

 

こんにちは

Konnichiwa

Hello

Well I have just had my 6th lot of the Japanese Golden Juice and it seems to be working slowly but surely. Blood tests are showing that the *Lolly Pop Markers (Tumour Markers), are coming down and the Liver function is slowly improving.  As some of you know, I am not a very keen user of the current medical terms and names for ‘everything cancer’, as they sound so doom and gloom. So I have developed my own ‘Medical Lexicon’, with more uplifting and more cheery names.

So it’s been another long break between my journal entries. The Japanese Golden Juice, (JGJ) has been relatively kind, giving me far less dramatic effects such as chronic nausea.  However, it packs a punch and tends to make me feel that I have drunk about 50 litres of sake, rubbed wasabi in my eyes and then stepped into a confusing scene from Sophia Coppola’s, Lost in Translation.  But that only tends to last for about a week, in time for my next Japanese Golden Juice infusion.

We cautiously feel happy about getting good blood results. I ask my Health Stylist if he is ecstatic but he feels that downgrading his feelings as “great” would be more appropriate. My dose of ‘JGJ’ was reduced by 20%, based on my first dose, slamming my body so hard that my good fighting cells couldn’t recover in time for my next round. So it was cancelled, I did try the tough angle, with my Health Stylist asking, “But what if I want to go ahead?” And in his ever so confident manner he said, “You’d probably bleed out and die.” I promptly dropped the little Miss Tuff act.

Over the weeks my blood tests have continued to show improvement. The levels of improvement have slowed down but are still heading in the right direction.

Whilst you haven’t heard from me, I have had a few ねばねばする (sticky) moments over the last seven weeks and some 素敵 (lovely) ones too.  I was feeling well enough to go to Sienna’s strings concert at her school assembly, I just love seeing her at school and she loves seeing her mum. It’s a double bonus for her if her Brave Dad can make it too. She had the biggest smile when she saw us and my heart melted.

Her little girlfriends who know me gave me a little wave. But the sweetest was one of the little boys who whispered to Sienna, “Gee, your Grandma looks really young.”   How sweet of him I thought, as I put my foot out in front of him as he walked passed.

It was my sister’s birthday on August 22^nd.  My fairy’s middle name, Megan,
is named after her. Even though it’s been a long time since she passed away in a car crash, I always try and tell Sienna lots about her beautiful Aunty. On her birthday we choose a star and say happy birthday and this year we wrote a little card and sent it off to the stars through my bedroom window.

 

My sticky moment was a short stay in hospital with ‘Mucositis’…. which I will re-name soon in my Medical Lexicon.

Anyway, it’s basically about 1,000 ulcers in your mouth, down your throat and your oesophagus. Feeling like you’ve been drinking a cocktail full of crushed glass, vegetable graters and then having a full pineapple with skin left on forced down your throat. Leaving you in so much pain that you suddenly are no longer able to eat. Oh and did I mention that it also feels like someone has got a wire toilet brush and scrubbed it up and down your neck.  Eventually as the pain peaks, you can no longer drink or talk either. Still, I thought to myself, “It will heal eventually and maybe there’s a bright side and I might lose a couple of my chins bringing the current chin tally down to 5.”

So I gargled my way, through 5 nights at Hotel Cabrini*, had about 5 litres of fluid and antibiotics, and anything else I couldn’t swallow the lovely nurses, would inject. Eventually I felt better and I was able to at least drink normally. It wasn’t long and I was packing my bag to come home along with the two lovely little extra chins, I now have thanks to all the fluid I’d had over the previous days. Chin Tally now 9.

Fortunately we found a drug available that I could use to prevent this happening again and it was only $10,000!  (Palafermin) What a steal let’s buy 3! I felt the best decision would be to put this money towards my ‘chinectomy’ I’m planning for after treatment.

My Besty Troop and I did a little scientific excperiment of our own, we thought if I sucked on an icy-pole while the Japanese Golden Juice was infused, would it help with detering the crushed glass cocktail ulcers like before! For a little colour and fun my BT bought some rainbow coloured icy-poles.

Ever since I haven’t had one ulcer!

Fatigue continues to wreak havoc. I have tried different tactics to stay awake, getting up early shower and get dressed and then help Sienna get ready for school. But then after they’ve gone I’ll just have a little sit on my bed, which turns into a lie down, which turns into a three hour slumber fest.

I have also tried the alarm clock just in case I keep sleeping and can’t wake myself up, and hate it that I’m so tired that I set the alarm for am instead of pm and it goes off at ¼ to one in the morning. I have even nodded off whilst my Brave Man has been mid conversation with me.

Even though I try and avoid going up and down the stairs because it uses so much energy and by the time I get to the top I feel like I’m gasping for my last breath.  I try and do some couch sitting for the afternoon, thinking this would keep me awake, but nothing will stop me, another 2 hour sleep, waking up with, ‘the crick of all cricks’….in my neck because of sleeping in a strange position.

And then the worst of all……

One morning my Brave Man had brought me up some cereal and freshly cut up orange to make sure I eat.  He’s even resorted to brining my lunch up to my bed in a little cooler-pack, again to make sure I am eating. I haven’t been interested in eating lately (which seems unbelievable since my girth is so wide I could quite literally kill a small child if I fell on it) and because I’m not hungry and my memory is poor, I forget if I’ve even eaten or not.

My appetite has been very average lately, just not excited to eat. My body is so dehydrated that I have been eating bags and bags of oranges every week and litres of yoghurt.

I’d like to be able to tell you that I’ve lost so much weight that now I’m back in my Hudson size 27 skinny jeans. But no, still in my comfy big girl pants trying to carry this pudding of a body around.

Anyway, back to………. “And then the worst of all…..”

I started with my cereal, I must have fallen off to sleep mid crunch. Well, do you know when you wake up sometimes with the feeling of “Ahhhh my mouth feels like the inside of a ‘cockie cage!’? Well after first realising that this was no ‘cockie cage’ I was feeling, after moving my feet, I was thankfully not dead, and this was not a wad of formaldehyde soaked medical gauze stuffed in my mouth. It was a spoonful of cereal that had been sitting there during, my 1 hour sleep-a-thon.  I’ll spare you the rest of the details. Let’s just say the cereal, Just Right marinated in your mouth for an hour is Just Wrong!

So I am living in self- imposed ‘lock down’, trying to avoid any germs at all. Just one little bug could be my downfall, so we are all very careful about kissing and touching.  My poor friends who visit, scrub their hands like OCD sufferers and check their children’s noses and throats and other any cranny, like they’re Indiana Jones searching for the Lost Treasure.

It feels uncomfortable asking my friends if they have any colds or anything I could catch. But I know only too well catching something means, hospital and chemo on hold. I do reassure them that anyone  is most welcome should they have head lice, as that is one thing I can’t catch.

So I continue to sleep a lot especially when I first have chemo, I’m definitely, ‘Sleeping Beauty’ without the Beauty.

One Sunday mid- morning not so long ago, I remember lying in bed for an hour as I opened and closed my eyes trying to wake up.  I listened to my Brave Man cleaning the house and my Fairy playing Bunny Hospital down stairs. She’d set up beds for each sick bunny, a CT scanner and X-ray room and even a bunny parents waiting room. She happily put on the different voices of the rabbits, diagnosing them with their various illnesses’ ranging from, a broken wrist, a puffed up tummy, twisted ankle and bunny cancer.

I just wished myself to be down there with them and was trying hard not to go back to sleep. After a shower and some fresh clothes. I found myself in the animal hospital with Dr West, who was looking after my baby rabbit daughter, Miserabella. As she took her off for an x-ray and a scan, I watched her playing pretend, I realised how my life on the ‘medical travelator’ is also her life on the ‘medical travelator.’  And just to tell you, Miserabella is totally fine, just a little tummy gas but she’s fine.

We have still been going on our trips to our little haven along the Great Ocean Road, my Brave Man and my Fairy discovering so many things on their walks.

 

Discovering our Johanna neighbours

 The fairy and her Dad went off to find some firewood to stock up for winter and they found more than they expected. In amongst the bush, they found a big Koala family. In one gum tree alone, they counted nine Koala’s.

It was the Brave man’s birthday. I love to celebrate anything and everything, Birthday’s and Christmas rate high with me.  I always have the rule that nothing can ever be labelled ‘over the top’ on these two days of the year. The more tinsel the better and the more presents you can re-gift, the better too!

Anyway, as I am momentarily ‘less mobile’, ‘all things party’ just wasn’t going to happen. And the mere thought of blowing up a balloon makes me instantly visualise an angry Scotsman using my lungs as bag pipes.

But the Brave Man was happy with his birthday dinner of lamb shanks (his favourite), a lemon tart birthday cake, also his favourite, and his present from his girls, a kit to make a Billy Cart. My fairy and her little troop made it together with the Brave Man overseeing,  on a trip to Johanna. So much fun!

 

 

We love him so much us girls, as my Fairy say’s…. “Daddy is the best chuck out the rest.”

So the next ‘memory maker’ is taking my Fairy on a magical girly adventure. We are going to Crown Towers for a night, a 5 star plush Hotel in the City. With promises of ordering ice-cream from room service, a breakfast buffet, big bubble baths while watching TV, and Mocktails before dinner.  And as part of the ‘memory maker’ my Besty Troop is coming along with her daughter and Sienna’s Besty Troop. One more sleep and she has had her suitcase packed about a week ago.

This week I go for the ‘big scan’ and the results will hopefully tell us what the ‘JGJ’ Japanese Golden Juice, has been doing.

My fairy has been asking more questions, “why is it taking so long for you to get better?” she overheard someone say there’s no cure for cancer, she asked, “If there’s no cure for cancer does that mean that there is no cure for you mummy?” As always, I say to my girl, “we are all trying to get me better, I’m trying so hard, because all I want to do is play with you and Daddy again!”

I read a little snippet of information the other day, according to both UN and WHO (not the magazine) estimates, Japan has the second highest life expectancy of any country in the world. I hope this applies to me now that I’m taking their golden juice.

See you for now, and I’ll be sure to put the alarm clock on next time so I can tell you about my results and a few other things I have been up to.

 

The majority of the beautiful photos are taken by my amazing and talented husband.

The Brave Man.

As I rubbed my hand cream onto my face, I came to realise that I had officially spent seven season’s in bed. If it wasn’t for the pretty trees I could see out of my bedroom window, I probably wouldn’t even know what season I was in. At the moment they are bare and twiggy and I know it’s winter.  Oh and I also realised that I should look properly at labels to avoid rubbing hand cream into my face.

 

So I know it’s been a while since I have written to you, my last entry was rather gloomy to say the least. Thank you for your notes of concern, I’m glad that I now have a clearer head to be able to write again. It’s certainly been a challenge with the latest chemotherapy hitting hard, the Brave Man working longer hours and my Fairy being sick and miserable for a few days. None the less, things have progressed, not in terms of my health but my overall way of thinking.  The last diagnosis no doubt brought us a heavier heart, but also brought us to the level of acceptance that has given us the freedom to lose the heavy burden of fear. We now talk about the, “What If” out loud, and have taken charge of what we can control. Whenever it is, we will still have our happy ending, it’s just the timing that might not be our choice.

 

Last you heard that my liver intruders were back. Two days later, I started on a new cycle of health nectar known as FEC. One I have been on a couple of times before that had successfully obliterated the last lot of intruders. Since March 24th, I’ve  had three cycles of this treatment over 9 weeks and spent two nights in hospital each time.

 

I have now developed, ‘chemoseniorsitis Alzheimer’s’* and found myself repeating conversations, forgetting conversations, and making up conversations I never had. The local DHL courier would deliver online shopping to the front door that I had no recollection of ordering. Friends would visit and 5 minutes after they would leave, I would sit on my bed wondering why I hadn’t seen them in such a long while.

 

And one minute I’d be writing in Sienna’s “Growing Up Mummy”, book and the next,  my head would slowly lower. I’d nod off like one of the old folks sitting side by side in the, ‘main social and activites room’ at their convalescent home.  Drifting on and off under the blinding warmth of the fluroscent lights. Not to mention the other perils of chemo. The squeaks and creaks that spontaneously pop out when I get out of a chair, or pick up something I’ve dropped. Bringing me back to times my Grandma would walk around the kitchen, being closely followed by a harmonic tune of flatulence as she whipped up a fresh batch of scones.

That’s it! I was going through, early onset ‘seniorsitis’*, and I’m only 42!

 

We spent the first few weeks after I started my new round of chemo consumed by our emotions about the prospect of not growing old together.

The Brave Man and I would just look at each other and cry as reality set in that my lovely life might come to an end. We weren’t giving up, we were just having a hard dose of reality. I was very sick and lifting my head off my pillow was an effort. My sickly liver was giving me trouble and for the first time, I felt the effects of cancer in the form of pain. My poor Brave Man would look at me helplessly, wishing he could swap places, because that’s the only thing he could think of, to make things better. My little Fairy, started to bring her bunny rabbit to school for comfort and there were more tears at night when she went to bed.

Our lovely Johanna farmhouse is our sanctury and we would drive there like the wind to get out of Melbourne.  Spending time planting forget-me-nots around the ‘special tree’. The ‘special tree’ I see from my Johanna bedroom window, it’s big and beautiful and when the different lights catch it during the day, it tells a different story each time. I have imagined in my mind that if I wasn’t here, my Fairy and Brave Man could have the ‘special tree’ as the place to go and visit, speak to me through the trees, the forget-me-nots and the cool breeze.

 

“What If,” plans were set in place. I filled my, “what If” journal with my thoughts and wishes, from songs I wanted played to the unicorn and carousel I suggested to be arranged for my Fairy and her friends at the ‘after party’.

 

My beautiful Besty Troops spent a day at my place sorting through letters, photos and all the sentimental paraphernalia that I had kept over my life. Right down to the Caulfield Cup golden entry ticket I had the day, I met the Brave Man.  There were lots of laughs, honest conversations and a few tears. But mainly a lot of love and caring.

I continued with my ‘Growing Up’ story book that I was making for Sienna. Some nights when my Fairy was supposed to be tucked up in bed, I would hear her little pitter pattering footsteps upstairs, tiptoeing into our room and checking out what I had done in her book that day. She was always filled with anticipation of when I would finally have this finished. She would ask me now and again, “what do you write when you finish?” and I always reply with, “to be continued.”

My days have been all about preparing for the, “what if” and “just in case”, but I’m not sad at all. It just makes me feel good about the lovely life I’ve had so far.

I have been doing what I do best in these situations and in between naps and nod offs, I do a smidge of online shopping. And before I knew it, I had arranged for my Fairy’s birthday presents for the next eleven years, bought the classic seventies,  ‘Where did I come from?” book, so she could understand about the facts of life when she was ready, ballet shoes for the next 2 years, along with pure cotton nighties to last her until she’s 10. Everything was coming together for the, “Just in Case”.

In the meantime, a memory box was prepared, letters have been written to her when she becomes a teenager, gets married, and has a baby. Of course none of these moments will be happening in quick succession.

All the while I think to myself, how lucky I am to be given the opportunity to have the time to do all this.

 

Three weeks ago, I was booked in for my scan. This time I wasn’t so anxious. Whilst accepting what may lay ahead was hard, it has given us more peace than we had imagined. We knew that whatever we were told, we would accept and carry on, always with the hope to prevail.

My Health Stylist told us that the chemo hadn’t worked. Although my liver lollypops* hadn’t got any worse, the word, “stabilized” was used and we would take that as a positive.

We had the……, “but wait there’s more”, convo with my Health Stylist where he told us about a new concoction that had been developed in Japan.  Not wanting to be ungracious or seen as lacking compassion, two words came to mind, “Nuclear Meltdown”.  But they were soon forgotten when I remembered that this was about my life and I would do anything that my Health Stylist suggested I do.

So this new chemo, known as eribulin, has been specifically developed for patients with breast cancer that has spread and have already had at least two treatments for this disease.

Even though eribulin has just finished trials overseas and had been approved by US and Canadian health authorities, Australia has not been so quick to approve. This means we have to pay for each treatment. Note to self…. “Cut down on the online shopping!”

But my clever Health Stylist has done some wheeling and dealing with the Australian Government and has been able to reduce the cost to us quite significantly.

So no sooner had my Healthy Stylist pressed the, “process button” on my most significant ‘online shopping order’ of all time, the ‘golden juice’ was on its way!  And we made the most of my feeling better time, whilst I was having a break from chemo.

So here we are, July 18th, back at our haven at Johanna Beach, our first lot of the new chemo done, five days ago. 

 

Looking up and having faith that we will prevail with this new lot of hope.

One hundred kisses from Sienna this morning and an, ‘over squishing boozzie squeeze’ from me, before she left for school.  I quickly study her beautiful face, with pretty blue eyes that dance when she’s happy.  The tiny caramel freckles sprinkled over her nose, the perfect bud lips, and the little gap between her teeth when she smiles. I close my eyes so that I can seal this image in my mind for later when I need to think of something to calm my busy mind and crazy beating heart.

Just to intensify the Braveman’s jetlag and anxiety for me, he decided to keep his morning appointment with his dentist.  After an unrelenting two and a half years of caring for us girls, there was time for a little maintenance of his own. His visit revealed a badly cracked tooth which was, in the kindest and gentlest possible way…. Extracted, no pulled, no yanked, no…. SEVERED!!!!  From his jaw bone, root and all.

Being the bravest of brave, he did not complain, he internalised it and ‘battled on’ as he does.

The familiarity of the day’s proceedings was quite uninteresting as we were common travellers down this road.

Drinking the pre- scan cocktail was as awful as usual and without fail always brings me back to my teenage experience with my friend’s Dad’s Blackberry Nip.  Never a good drink to start with when, ‘trying alcohol for the first time’.

I stared at my unfamiliar face in the mirror and missed the old me a lot. The make-up came out and I did my best to bring back some character to a hairless, pale canvas with colourless eyes. I laughed at myself trying to draw on eyebrows, after a 45 minute effort of dusting, shaping, darkening and lightening, I had created a look of being poised to ask an important question.

Greeted by the familiar faces of the sweet girls in Radiology, just a smile would suffice to check in. It wasn’t long until Neil bounced through the doors to come and get me. Normally we’d have polite banter as we walked along, about “the wait wasn’t long today”, or “Is it still raining outside?” But today I caught him off guard by bringing the Braveman into the actual ‘Scanatarium’* room.  (*made up). Noel took one look at my face and wasn’t about to mess with the ‘eyebrow’!   

My Braveman held my hand as Neville tightened the tourniquet around my arm searching for one of my elusive veins. I quietened myself down and Neil slid the needle into an unsuspecting vein.

I close my eyes and I see the tiny caramel freckles sprinkled on her nose.

The ‘Scanatron’ (sounds much more dramatic), started whirring and Noel and the Braveman went behind the safety screen. The Braveman got to watch from the ‘Major Scantrol Panel’.

‘Her dancing eyes.’  

The first scan was done and now for the actual contrast injection, this happens automatically, but Neil will stand over me whilst it goes through to watch out for any complications.

‘The gap in her teeth when she smiles.’

I feel the fluid going in and reaching parts of my body as they become hot and tingly. The feeling of wetting my pants is not the most favourite part, but I always know it means it’s nearly finished.

‘Her rosebud lips.’

And then it happened, a huge wave of nausea. My Fairy’s lovely image burst like a bubble in the air and I was instantly brought back into the present. I called out to, “Neil, Neville and Noel…” clearly I wasn’t on my game with name recollection. He told me to hang-on, I put my hand over my mouth.

I couldn’t hang on, but I will spare you the rest of the details. It wasn’t until later that I would understand why they you ask you not to eat before a scan.

The Braveman and I picked our Fairy up from school….. well the Braveman got her and I waited in the car. She ran like the wind when she saw me waiting for her in the front seat. I love her funny little ducky run, her rosy pink cheeks from the cold air, clutching her beret so it doesn’t fly off as she runs. It’s those visions that get you through.

My parent troops came around and took care of their Grandfairy so we could see my Health Stylist. She loves them so much as they do her. Another thing that gets you through.

The Pretty Leaves Fall

I always position myself in the waiting room so that I can watch the reflection of my Health Stylist as he comes out of his office to call me.

Sitting in front of him staring at his lovely face, he explains that I have the digestive system of an 80 year old and I have a case of, what I politely like to refer as, ‘Colonic Idle Progression*’.

“But there’s tumours in your liver again and they are affecting your liver function.” I stared at his eyes and I saw tears….. and they weren’t mine. They were from a man, now a friend, who’s been trying to save my life for so many years. I just felt guttered for him. It had come back so quickly, we had barely had a break.

We sat there in silence for what seemed like minutes but was probably only a few seconds. I looked back at the Braveman’s  forlorn little face sitting there in shock. I felt for his hand, the same hand that held mine, six years before when we were first told I had breast cancer.  The same hand that’s been holding mine ever since, I just don’t want to ever let go.

The only thing I could think of saying to my other Gary was, “I know what I want to ask, but I don’t want to know the answer.”

I just don’t think I could ever hear ‘those words’ that I have been dreading for so long. Is it important to know time, or is it what you do with your time?

Still, there’s options and I was booked in for a change of chemo on Thursday, it’s very heavy duty but we have to hope it’s going to storm through my body, blasting these uninvited and most inconvenient intruders.

That night my heart ached so hard as I could feel it break a little  more. Not for me, but for what this will do to my Braveman and my Fairy. I was so sorry, so very sorry.

I reflected on the lovely quote I was given a few weeks before by a woman I greatly admire, Lyn Swinburne.

“Our lives are like precious stones mined from the ground. Whether we let life’s experiences crush us, or polish us, depends on what we’re made of.”  Byllye Avery

April 23

So the Braveman went back to work and my fairy and I planned our week together.  Which involved pajama mornings, play dates, parks, breakfasts out, book shops and the movies, all the fun things we like doing together.  I just didn’t want to miss an opportunity with her whilst I was feeling OK.

I still have a lot of help from parents, friends and our lovely ukulele playing Wendy Woo Woo, who helps out most nights picking Sienna up from School, taking her to activities and organising dinners and lunches.

I feel sad not doing the mum things that I want to do, but Wendy is sweeter than apple pie and Sienna really loves her.

Wendy brings her pretty green ukulele and serenades us with her husky bluesy tones as she goes about doing chores and caring for our girl.

I reminisced about my own childhood memories as I watched my fairy and her sweet friends create their own childhood memories, by excitedly setting up a shop at the front of our home they called, Meekaluka Cafe. With chocolate chip cookies, little pink cakes and the tastiest home made sour lemon drink, they were open for business. The positions of order taker, server and cashier were assigned and it wasn’t long until they had sold out (all to relatives that ‘happened’ to be walking by) and the Meekaluka Cafe was promptly closed for the day after much success.

I made it to her swimming, gymnastic and tennis lessons and as I watched her freestyle to the end of the pool, climb high up the gym rope to the roof and slice the ball over the net like a pro, I couldn’t believe how far she had come in the 7 months since I was able to get there last. I also realised why the poor kid was so utterly exhausted at the end of each week. But she was so happy that I was there and so proud to show me what she could do.

She sat up straight in class when I went to hear reading, one eye on the teacher and the other on me. These treats to go and see her, really made me realise how much my little girl had grown up and how much I have missed seeing her at school, I was happy and sad at the same time.

We set off to the movies one morning, ‘cancer guilt’ kicked in so I made sure, I bought her the biggest popcorn, choc-top and water I could buy. I just don’t want her to forget these moments with her mum! Hopefully she’ll remember it for the fun and not for the massive vomit she’ll have later because of all the garbage I bought her to eat.

The movie was true Dr Zeus style entertainment for Sienna, and I loved the 3D aspect, where you could manage a ‘sneaky snooze’ under those big black Grandma glasses. Half way through the movie, my 3D slumber was interrupted by even louder bells, whistles and sirens and then a serious sounding man’s voice began to announce, “evacuate evacuate”!

With my 3D glasses still on, I grabbed my fairy’s hand which was still clenched with popcorn and we made our way out of the cinema. We came across a tsunami of white, grey and purple fluffy heads making their way out of another cinema, the scene looked even weirder through the lenses of my 3D glasses.

Rather than hang around, we quickly grabbed our ‘replacement tickets’ for next time and left the building. My fairy leaving a rather long trail of popcorn behind her as it bounced off her clothes as we made it back to the car.

We never did find out what happened that day.

New ballet shoes were bought, a haircut was had and the most favourite bookshop was meandered through. We walked down the street holding hands, doing the ‘Three Squeeze Hand Secret’ that we know means, “I Love You.”

My Braveman told us that he had to fly out to New York for meetings for a week. My little pain in my stomach that had been niggling started to niggle a little bit more. I told him about the pain and we agreed that I would see Dr Deb before he left. Trying to avoid any scans or trips back on the medical travelator, I helped Dr Deb decide that I had a bowel infection and felt happy to tell my Braveman about this diagnosis. However she still insisted that I would have a blood test and ultrasound.

After having a lovely celebratory lunch for my mum’s 70^th birthday, my Braveman flew out that night for New York. We were sad that he had to go because everything seems so much safer and protected when he’s with us.

 

My fairy was even more sad than usual that he had left, but a big glass of ice-cream and a sleepover with mummy in the big bed, seemed to fix things.

We held hands all night under the covers.

She was going back to school, my heart feels sad that she has to go back and I pine for her all day. But to get off to a fun start we went out for breakfast before school. Something my own mum would do for us as a special treat once in a while. See….. memories, creating memories.

Sienna had her ‘show and share’ at school and the topic was, “What would you like to be when you grow up”? It would be no surprise that she would have her heart set on, Ballerina. Performing grand jetes and pretty pirouettes around the house day and night, it would only be natural.

But I was touched and saddened at the same time when she said, she wanted to be a Doctor like Gary Richardson (My Health Stylist). She explained that she wanted to help people to get better. “Especially you mummy, so if you get to 80 years old and it comes back, I can look after you and make you better.”

That feeling of proudness and yet pain of her sweet innocence in this whole thing, filled my tummy with an ache. I hugged her so tight, wanting so much to tell her that everything was going to be ok, but was suddenly pushed away because I was apparently, “over squishing”. Yes my current, ‘over ample boozzie area’, can be quite suffocating for small people when given an over enthusiastic hug.

By Tuesday my niggling pain wasn’t getting better and I was terribly tired, probably more due to the fact that the Braveman’s helpful hands were not around and I was following around a kid with a bigger appointment schedule than the Prime Minister of bloody Australia. Offers always came from the kind Mum’s from school, who would take Sienna in the morning and drop her home when I couldn’t.

Secret messages and phone calls were being exchanged between New York and Melbourne with concerned Besty Troops and a worried Braveman.

Instructions were given from New York and I relented to an ultrasound and blood test, and to be sure I went, one of my Besty Troops took me, not only to my appointment, but she actually came into the examination room too. It’s just that I liked doing the, ‘normal of normal’, and it had been such a quick time between ‘normals’ before another scan was being ordered. I just wanted more ‘normal time’.

The news came back from Dr Deb that there didn’t seem to be anything unusual, but she had contacted my Health Stylist in any case to let him know.  Three more sleeps until the Braveman came home and his girls were really missing him. I had a message at home that night, that Professor Gary Richardson (My Health Stylist) wanted me to have a further cat scan and see him early next week.

My heart broke a little inside. My fairy and I ate ice-cream in bed again and watched a movie she chose, and declared me to be the “best mum in the whole world”! We fell asleep that night, whilst I was telling her most favourite stories about when I was little.

On the Saturday, my beautiful Besty Troops came over with lunch and laughter. We spent the afternoon talking about life and reminiscing about the fun we had in the ‘old days’. I had much delight in finding some old photos that we chuckled at as we saw the 80’s hairstyles, very high jeans and cheap gold rimmed glasses, that we all thought looked simply fabulous.

We talked about the challenges in life, parent’s passing, children growing up and worried husbands. But I didn’t want to talk about cancer, I just loved hearing their problems, the more they told me, the better I felt. A break from the cancer conundrum was good for the mind. I miss talking to my friends and being the ‘solver’ and not the ‘solvee’.

Home Coming
April 30^th

Finally it was home coming time. My fairy was so excited that her Dad was coming home, she ate her dinner at the speed of light, had the quickest shower in all time history and insisted on doing her own hair so she looked shiny and healthy for when her ‘Dad Hero’ walked through the door.  She sat patiently in the front room for nearly an hour watching the lights from cars turning into the street, hoping the next one would be her Dad. I love her, love for him.

I sat there too, watching her, watching for him. Every so often, my mind would wander to the ‘what if’ of the next day’s scan.  Please let it be ok.