The Chemo Chameleon!

by Rachel on June 27, 2011

I had a moment today.

Putting all my scarves in my top draw. It seems only 5 minutes ago that I ceremonially folded them all up and packed them back in their boxes to be placed in the back of a cupboard, along with my old shoulder pads and clip-on earrings from the eighties, never to see the light of day again. But here I am dragging them out again.

January 2006
 My hair is like velcro now, so short and   spikey and unfortunately attracts a lot of   foreign objects. Like when I looked in the   mirror the other day (which I routinely try to avoid these days) and saw this piece of fluff stuck to my velcro hair. It took a while to realise it was the lint out of the dryer…. Nice look glamour puss!! Needless to say, I’m very thorough checking the velcro in the morning to make sure I don’t have one of the Brave man’s socks stuck to it or something.

June 2006
So it got me thinking. I’ve had more hairstyles than hot dinners over the last 6 years, I’m not even sure who I am anymore. Even poor little Sienna is confused. Since she’s learnt to draw, she’ll often bring home drawings of me that she’s lovingly done at school. At first with long blonde hair, the next short ‘mannish’ hair and the other day it was a drawing of me wearing a scarf.
I don’t know whether to hug her for her cuteness or hug her because I wish so much she had a normal mum.

December 2006
Christmas
Unfortunately the only hair that has remained consistent like a loyal dog, is one little black hair that hangs from my chin, like Fu Manchu. It’s chemo proof, bomb proof and nuclear proof. What’s with that? It’s up to the ‘Troops’ now to be alert but not alarmed and tell me when they can see it, so I can get rid of it……this is what they do.

October 2007
The Curls!
I remember when I first had chemo back in 2006 and the chemo nurse was telling me how some women’s hair grows back like a tight perm. I remember thinking at the time, how awful the poor things, If it’s not bad enough going through cancer and losing your hair but then for it to grow back like an eighties perm, is just terrifying. I know the oldies love a good set and perm, but not me, I was 36 years old.  Not for a minute did I think it would happen to me.
December 2008
Christmas
It’s one of the biggest challenges losing your hair, eyebrows and eyelashes, looking totally unrecognisable to yourself, any glimpse of your reflection and the pit of your stomach gets a big knot in it.  You know it’s not the real you and it’s a reminder that you are really sick. I feel sorry for my Brave Man,  I’m not the girl on the outside he married, I look like that guy out of that comedy Little Britain. I’m so glad he loves me for who I am.
December 2009
Christmas
The other issue I face with being a Chemo Chameleon is all my ID’s. My driver’s licence, passport and other ID’s are all different. I must look like I am committing identity fraud with all the different looks.

Now and again I would get strange looks when I had to produce ID, but it wasn’t until I was in the Post Office one day last year that someone made a comment.

September 2010
 I was sending a parcel to a friend and  had to produce my Driver’s Licence. My Driver’s licence is nine years old and the photo is of a very blonde me, with long hair. At the time I went into the Post Office my hair had just grown back & it was very short and black. The lady behind the counter looked at my driver’s licence photo and then looked back at me and said, “I much prefer you with your long blonde hair.” I was a little taken aback, it wasn’t my fault that I looked like GI Jane, yes I’d much prefer my blonde hair too. And without thinking, I blurted out, “Yes, cancer will do that to you”. Well the poor lady, she was so apologetic and then proceeded to go through her family tree of who had had cancer in her family.




May 2011
Photo taken by my friend Rachel Devine
3 days after my first chemo for 2011
So who knows why your hair grows back in all different ways after chemo, it’s a question, I’ve never had answered. All I know, is that once my hair starts growing back it means that treatment is finished and I can move on.









 

June 2011
Lorne Beach hair falling out
I don’t think I’ll ever have bad hair days again, I’ll just be happy to have my hair back and go back to being me and my little girl can just draw the one version of me.


June 25th 2011
Me and my girl!




June 27th 2011
Picture drawn by Sienna of Mummy in her scarf













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Our little routine!

by Rachel on June 16, 2011

November 1998
Had just met the Brave Man a week before
 and didn’t realise that this boy
sitting next to me would be the love of my life.

So now that I’ve started ‘the plan’, we have a new little routine in place.

Today I see my health stylist (oncologist) and go in for my second round of chemo. I always like to dress up in my finest, pack the make-up on and pretend there’s nothing wrong.

My little voice of denial inside of me thinks, “If I look ok when I see him, then he won’t tell me any bad news.”

So with the Brave Man by my side, in we go. I immediately tell my Health Stylist how good he looks given he’s just come back from a big conference in Chicago, ask him about the family, his dog (even though he doesn’t have one) and did you happened to find a cure for cancer since we last caught up? Anything to avoid him asking me about me.

 Unfortunately, he knows me too well by now and brings the focus back to me, telling me not to avoid myself and asks how I’m doing. I figure if I tell him I’m super-dooper, he’ll believe me and won’t tell me anything bad. The Brave Man gets cross with me for talking through my ‘rose coloured backside’ and reminds me to tell the real truth. The sickness, the struggle to breathe, the abdomen and chest pain, the coughing, the swelling of my arm, and the list goes on. I’m just about as healthy as a one legged warthog!

About as a healthy as a one
legged Warthog!

Then he mentions the next scan is due soon. My heart sinks and my stomach feels like it’s been turned inside out. I go very quiet. The Brave Man takes the details in on when it will happen and what we need to do. Trying not to listen, I ask my Health Stylist if he’s sure that he doesn’t have a dog?

I normally don’t like asking questions for fear of the answers, but my little ‘brave person voice’ inside snuck out a question, I could have smacked her like a naughty child.

“What would you expect to see on my next scans?” I ask, hearing my voice & at the same time digging my fingernail into my leg trying to stop myself from finishing the question.

He says that he’s confident that the spots on my liver should be significantly reduced. That’s good enough for me and I give the Brave Man the look of, “let’s get the ‘one legged warthog’ out of here” before the little Brave person voice asks something else.
So off for the next round of ‘health nectar’.
After 4 hours in the chair, we finally make our way to my hospital bed.

My Health Nectar!

That afternoon in hospital as the chemo kicks in, I lie there tired and losing a bit of chipperness and watch my Brave Man diligently fill out my dinner menu, the standard medical history form and make phone calls organising Sienna’s pick up from school.

As I watch this amazing person, I think about the day we met and I never could have imagined how lucky I really was.

My thoughts are interrupted when he makes a funny comment about the form and we laugh so much.
I just love how much I love him and how much he makes me laugh. And I love our little routine.


 Getting some little peron’s 
 help pushing around the
 trolley
      Coming into visit me in hospital, Sienna
      brings her little friend Gem.Seems like the
     ‘up and down’bed and the remote control TV
      was more exciting than me!

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As Dolly Parton once said, “There’s a heart beneath the boobs and a brain beneath the wig”
So why am I so turned off about wearing a wig? Is it the fact that it looks soooo obvious, or is it that I’m so paranoid that I’ll go out wearing it backwards by mistake.

And I’m constantly reminded about the story I was once told about the lady on a train in Melbourne who was wearing a wig and it got stuck to the velcro on the guys jacket next to her. You can imagine what happened when he got up to get off at his stop.

Needless to say when I first got sick back in 2006, my Besty Troops took me out for some wig shopping. It was desperately sad but funny at the same time. Off we went into the city and learnt about the world of wigs. The first thing we learnt was that every wig has a name. Not short brown bob, or long blonde curl. Amongst others, there were, Romance, Hagnas, Betty Boo, Patricia and Sharon.

I chose Carol, a little blonde flicky thing, I took it home tried it on and I think it took 3-7 minutes before I plonked it in Sienna’s dress up basket. She was 1 ½ at the time, so if she was ever invited to an ‘Adams Family Party’ she could go a ‘Cousin It’.

The only other time I bought a wig was back in 2006 when the Braveman had his birthday. I was still in the middle of chemo and we were in need of a party, something positive to celebrate.
And that’s when ‘Affair’ was purchased. A wild wig, not only with a sultry name, but with a crazy auburn colour. In my chemo induced state I thought I’d look pretty raunchy. It was the first time we had been out in a long time, I was still feeling very sick but wanted to make an effort for my Braveman.

I even got a makeup artist in to draw on my eyebrows and stick some eyelashes on.

We had drinks at our house with friends and then out to a restaurant for dinner.

You know when you greet someone at the door and their smile turns into a half smile quiver and their eyes drift from yours to the floor. And you can see they’re trying so hard not to mouth the words, Hi Rach it’s great to see you looking so wig” Well I should have realised, something just wasn’t looking right.

I’M NOT A WIG PERSON!

The next day when I saw the party photos, all I could think of was two words……. “DRAG QUEEN”. And a bad one at that!

So since then, no wigs, it will have to be scarves and big sunnies.

It’s very hard to lose your hair no matter how many times it happens to you. The chemo is lethal and it takes away a lot of self-esteem and dignity as a woman. But I know it’s there to take away the other stuff and I have to keep reminding myself of that.
And during the times I’m at home just getting around in my baldness I might walk past a mirror and catch myself thinking, “Oh George Colombaris from Master Chef has come for a visit, how nice.”

So thanks Dolly for your quote, but it’s been my Boobs that have got me into trouble in the first place and I’ll leave the wig thing to you. If anyone can pull a wig off it’s you, not this mum from the burbs!

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The Ultimate Bad Hair Day

by Rachel on June 14, 2011

We had a beautiful long weekend in Lorne, fresh air, the beach and happy children always makes you feel great.

I’m tired but happy to be away for the weekend, distractions are always good for me and takes me back to the normal life I once had.

Sienna’s little friend is staying with us and I listen to them laugh at each other’s jokes and giggle about leaving bread out for the Cockies. It’s such a feeling of comfort when you know your child is happy and hear their laughing, I savour this moment.

Anyway, this morning was very fresh to say the least, the Braveman had joked with the girls that it gets so cold in the morning at Lorne that they’d need nose warmers and they thought this was the funniest thing ever.

Meanwhile I greet myself in the bathroom, still in my dressing gown and wonder why I have two very hairy shoulder pads stuck to my shoulders, then I realise……. no I hadn’t bought a new pair of funky Sass & Bide shoulder pads, this was the bad hair day I wasn’t ever looking forward to. This was my hair and it’s falling out like snow!

I try and be brave and think to myself “It’s only hair”, but it’s not just hair, it’s my hair and it’s part of me being me. I call out to the Braveman and in he comes to see my hairy shoulder pads and a bunch hanging off my lip, not the most attractive look.
As my tears well up I look at him and say “I thought I’d get used to it by now”. Like he does all so often, he looks at me with his compassionate eyes and says, “no one should get used to their hair falling out.” I just love him even more.

When it’s time to fall out, there’s no real stopping it, it falls out everywhere. I was tempted to dry it off with the hair dryer but was worried I’d blow it off all over the wall on the other side of the room. I’m not sure the Braveman’s mum (who’s known as Granny the Bravewoman), would appreciate a hairy wall in her holiday house.

So I wait for it to dry and hope like hell there’s not some big gust of wind that will blow it off like those ‘fairy wishing flowers’ Sienna blows to make a wish.

I put the call into one of my Troops and she’s on ‘high alert’ with the clippers, ready to whip and snip.

That night I’m given a number one, my poor little Troop was a bit nervous so I had to ply her with vino and she did a great job.

My fairy comes home to see the result and loves the spikey feel.

I told her that I was playing Rapunzel and I thought I heard the prince call out from the bottom of the castle, “Shave off your hair”, and once I got my hearing checked I realised he said, “throw down your hair.” She roared with laughter.

The next day after school, Sienna brings home a new drawing.

NB: If I was a 6 foot gorgeous African supermodel, of course being bald would look amazing on me, but I’m not. I’m a short dumpy bald mum from the Burb’s, so please don’t tell me that being bald suits me.

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The Chemo Cloud

by Rachel on May 30, 2011

A few days have passed since my first chemo and admittedly I feel like a piece of road kill. There’s no other way to describe how it makes me feel, but I take comfort in the thought that it’s making me better.

My lovely friend offers to take photos of my little family, she’s so magic with the lens and with a click she captures the love we have for each other. These will always be treasured. One of my favourites is my blog photo.

I spend my days in bed and look forward to my little fairy coming home from school so I can ask her what she did during the day, she’ll give me the biggest cuddle and answer with, “I can’t remember, can I have something to eat?”

Sometimes when I’m feeling a little blue, I sneak into her bed while she’s at school and snuggle in. I think about how she is also very brave and I’m proud of the compassionate and caring little girl she is becoming.
Leaving little notes on my pillow at night, coming home with drawings of mum each day and loving me no matter what I look like on the outside.

I know as a family we’ll pull through all this craziness and we’ll be dynamite. If you thought the Partidge Family were cool, wait to the West’s are back!
And who knows maybe Sienna just might be the one who cures cancer?

As I feel the chemo cloud lifting and no longer feel quite like I’ve been given 3 hours of non stop wizzy dizzies, the sky gets bluer and the sun brighter and I know I’ve nearly turned the corner.

Each day I check my pillowcase for strands of hair that might have fallen out overnight, but nothing, and I secretly hope I will be one of the lucky ones and it won’t fall out.

One of my Besty Troops is having her 40th on the weekend so I’m hoping so much that I can make it. It’s a 70’s party so I went online and bought the Braveman and I the biggest afros in the universe.
Who knows, maybe it will be my new look, although Sienna did instruct me not to wear it when I pick her up from school. I don’t understand why?

It’s about 10 days since chemo and I’m watching the Braveman doing all the washing and folding the towels. I hear myself getting grumpy with him because he hasn’t folded the towels in towel size order and the corners aren’t perfectly matched. In my grumpiness and his annoyance for me being grumpy, we know it’s a good thing because it’s a sign I’m feeling better and I’ve turned the corner! I love him so much!

I’m able to get to my Besty Troop’s 40th, albeit for 2 hours, and able to go wild with a tap of my foot on the dance floor. The Braveman was watching intently from far away with his code blue paddles hidden under his fro. It was great to celebrate with my dear friend and share her happiness.

We are happy!

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Next stop on the medical travelator

by Rachel on May 26, 2011

Next stop for the medical travelator today, is day oncology for my first dose of chemotherapy.
Always great to have a bit of chemo to start your day, or ‘health nectar’ as I like to call it. Of course I’m a little, anxious and it seems surreal that I’m back here again.

The brave man is with me. He squeezes my hand and reminds me that this is my first day of getting better again. The troops are on their way in with fresh juice, magazines and coffee. Believe it or not, but it’s quite the social gathering. There’s nothing like a bit of a chin wag with your girlfriends whilst 2 litres of lethal chemicals are being transfused into your body.

As I see the familiar faces of the oncology nurses, I get lots of hugs and kind smiles my anxiety drifts away.

The troops arrive and it’s so lovely to catch up and feel the love and support around me. I’m so caught up in conversation that I don’t even feel Nurse Jo put the needle into my chest to hook me up.

As I watch Nurse Jo getting organised, I think to myself, “Isn’t it reassuring to see her holding the IV bag, (that’s about to be transfused into my body) wearing industrial goggles, rubber gloves and a lead lined apron. This stuff is one lethal weapon!”

Speaking of the nurses in oncology, who can only be described as amazing angels. They are so kind and gentle that they even make the word suppository sound like a calming Buddhist meditation. It takes an extraordinary person to be an oncology nurse.

So I was excited to have my little god daughter come to visit me. She’s only two and with eyes as big as saucers she stares at the goings on, so much to take in with the busy nurses, sick patients and the beeping machines. She sits on my lap quiet as a mouse, cuddly like a koala and warm as a wheat pack.

As I’m getting koala cuddles, a new face comes over. A nurse I hadn’t seen before looks adoringly at Dusty, “so…….… is this your granddaughter?”

Immediately I ask myself, “have I just had the chemo injected directly into my brain and did this woman just ask me what I thought she just asked me? Do I really look that old?“

Oh god, if she thinks I look old now, imagine what she’s going to say to me when my hair falls out?? She’ll see my brave man and commend him for turning up to visit his mum!

Suffice to say, she didn’t hang around for too long when she realised her faux pas. Note to self ….. Telling someone they look old when they’re having chemo is probably not the best way to make them feel better or boost their self-esteem!

After a few hours I’m done and back on the medical travelator for the next stop…… hospital for one more night then home.

I lie in bed and wait for the ‘health nectar’ to work its magic!

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Telling Sienna

by Rachel on May 25, 2011

Just when I promised that I would grow ‘Princess Hair’ for her, I have to break the news that she’ll have to wait a little longer.

You just want to protect your child from everything bad in the world, but sometimes it’s impossible.

We’ve told her as much as she needs to know, reassurance is always the key.

Me: “So mummy has to have treatment again and her hair will fall out”

Sienna: “Ohhhh, “

Thinking….thinking….

Sienna: “What’s cancer”

Me: “It’s like a bug in your body, that makes you sick”

Sienna: “Is it the same bug the Tiffy swallowed when she did the half marathon”?

Me: “Um, no not that kind of bug”

Sienna: “Is it like the Lady Who Swallowed the Fly?”

Me: “Not that kind of bug either”

Sienna: “Why does your hair have to fall out?”

Me: “It’s just what this medicine does, but it will make mummy better”

Sienna: “Can I watch TV?”

Me thinking to myself…..

“I love normality”

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The Plan

by Rachel on May 25, 2011

So now for the plan. The hardest part is being ‘told’, once you have ‘the plan’ things start to get a little easier. My oncologist, a lovely man, not that you’d wish to have a close relationship with your Oncologist, as it can only mean one thing….. you are seeing him waaaayyy toooo much! Anyway, I like to refer to him as my ‘Health Stylist’, just doesn’t sound as scary as Oncologist plus it makes me sound groovy.

So let me introduce you to my ‘Health Stylist’, his name is Gary which of course is the same name as my ‘brave man’. The fact that they both share the same name, I feel, is a good omen. I look for anything positive these days, good luck charms, four leaf clovers, symbols of hope and signs of optimism.
Every time we go in for an appointment with my Health Stylist, I’m always armed with various good luck charms and good luck processes and procedures. And now that I have been coming for so long, I have quite the collection. Last visit I counted four bracelets for each wrist, including the one Sienna made me for Mother’s Day in ELC. Three lucky bunnies stuffed in my handbag, (handpicked by Sienna) the ‘brave man’s’ hand in mine and my lucky undies. Carrying all this, whilst not stepping on the cracks in the path and watching out for black cats, can be tricky.

It won’t be long and I’ll be turning up with a Coles trolley full of ‘lucky stuff’ and it will take me about three hours just to walk across the road. Great, now I’m developing some obsessive compulsive disorder as well as cancer, can it get any worse?

So my ‘Health Stylist’ tells me that the plan is chemo every three weeks for six months, he mentions a concoction of drugs which have longer names than some of the streets we walked down in Stockholm and about as easy to pronounce. Of course, one of the side effects is that my hair will fall out again. Ho Hum, no matter how many times it’s fallen out, I still can’t get used to the Uncle Fester look.

But he also says the words, “confident, treatable, you’ll be ok”. That’s all I want to hear, hair or no hair. I give him a hug and we get on with the plan!

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Action stations

by Rachel on May 24, 2011

I don’t know what he thought was more weird, 
 his hat or the fact I was taking his picture from
under the bed clothes?

Once your told, all hell breaks loose, but in a calm methodical way. I know that sounds strange, but things just happen and you find yourself on the medical travellator to getting better.

This time of course, everything’s far too familiar.
Had my CT scan and couldn’t believe I said hello to Noel the radiographer and asked him how his girls were. Oh my god, I know his name and I’m asking about family, what’s next, “Will you be Sienna’s fairy god father?”
Thankfully most of the hospital staff don’t recognise me with hair, so there’s not a lot of those awkward moments of, “Ohhhummm you’re back.”

Today is my liver biopsy, someone mentioned that word “mutate”. They have to make sure I have the same cancer as before in order to start on the right treatment. I don’t know what I’m more horrified about, a different cancer, a liver biopsy or the word mutate. Can’t they use nice words like, the cancer might have “rainbowed” into a different type.
The brave man is allowed to come in with me while I have the biopsy, just looking at his reassuring eyes takes the pain away, that and the brain sedative the doctor gave me.
I know I’m sounding flippant, but it’s called coping mechanism.

Action stations aren’t just limited to medical staff. Faintly I hear the soft beeps of friends texting Gary, “What can I do”, “I’ll get Sienna”, “I’m doing lunches”, “Here’s some new nighties”. (No not for Gary)The troops are coming and I feel good.

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The ‘Brave Man’

by Rachel on May 23, 2011

How does a husband tell a wife the cancer has come back a third time?
I was sitting in my hospital bed, my husband walks in with his unwaivering look of fierce protection, he pulls the chair in close to me and holds my hand. I close my eyes. I know what he’s going to say, I squeeze his hand tighter. As I watch the tears fill his eyes, I think of my baby, my little fairy who’s spent most of her six years with a sick mum. I’m too scared to open my eyes because then I know it’s real. It’s happening again. The brave man tells me it’s going to be OK and I believe him.

 

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