Chemo Brain Cake

I made a birthday cake this weekend and I’m chuffed. Because although it’s something I’ve been doing for years, these days completing such a task it’s quite the feat.

Pre cancer,  the task of deciding what to cook, shopping for the ingredients, following the recipe, and being able to read my oven and decide how to decorate it would just happen in a “click-of-the-fingers” kind of fashion.

Post chemotherapy, not so much.

So WTF has happened to my brain?

According to a study published in the journal Clinical Neurophysiology and summarised here, when some individuals undergo chemotherapy, they notice changes in their memory, concentration and the way they think.  Scientists had previously found evidence of Chemo Brain by looking at scans of the brain. In this recent study, researchers have finally been able to demonstrate that “CB” is in fact GENUINE and not “Complete Bullshit”.  Through a series of EEG tests that detects electrical activity in the brain, they monitored the brain activity of breast cancer patients while they completed a series of tasks. They discovered that the breast cancer survivors were “less likely to maintain sustained attention” compared to healthy individuals—this was true even up to three years after treatment.

It’s another example of how the effects of cancer treatment persist long after it’s over and these effects can really impact a person’s life.

God help you if you suffered from a big dose of baby brain and then had the misfortune of chemo brain as well!

So dear friends and family. It’s not that I am hard of hearing or not listening when you tell me something. It’s not that I am sleep deprived. It’s not that I am drunk. It’s not that I am not organised.  It is through having had an intense course of chemo, that my brain tends to “chronically wander” rather than engaging when it should.  This explains why post treatment, unless I write things down and keep tasks as simple as possible I get into trouble.

Take for example this cake I baked.  I wrote three versions of the same list and went to the shops. I left the lists at home.  Without a shopping list I am completely lost.  But even with a list of just a few items, I have forgotten the layout of the supermarket so I have to go up and down every aisle in case I miss something.  The process of shopping takes twice as long as it used to.  All those bright lights and signs at the supermarket. Too many decisions and distractions.

When I’m just about to complete the “list”, the friendly green grocer says something that reminds me that I have left some oranges simmering in a deep pot on the stove at home.

THE STOVE IS ON! SHIT!!! THE STOVE IS ON!!!!

So I hastily make my way home to see if my house is still intact.  Pleased with myself that the fire brigade hasn’t visited my street this morning, I commence the process of making a Chemo Brain Cake which involves reading every sentence of the recipe a thousand times.  Just one simple step looks a bit like this…

____________________________

<Get’s out all ingredients so that they are ready to go>

Mix eggs and sugar until well combined.

How many eggs?  Six eggs. Oh yeah. <Put’s eggs into bowl>

Okay, what am I mixing with the eggs?

Sugar

How much sugar.  Oh yeah 250grams of sugar?

Did I put the oven on already?

Yes the oven is on.

Right what am I doing?

Righto. Eggs, and what?

Sugar.

Okay eggs and sugar beaten together.

Okay now what?

_____________________________

This goes on and on until I slowly edge my way through. But get there I somehow do.

Thanks to my awesome friends for their recipe suggestion advice and help with this cake. I finally got there in the end, my house did not burn down, my kids were not left at the supermarket and the cake was thoroughly enjoyed at a special family occasion.

And for the record, my friend said…”OMG, that was the very BEST cake I’ve ever eaten!”

Chuffed. I. am.

“Chemo Brain” Flourless Orange Cake for Nanna with pistachios, raspberries and candied orange.

The cake recipe can be found at http://www.sbs.com.au/food/recipes/orange-and-almond-cake?cid=trending.


Breaking Down Bad

Today, I got put in a time out room.

Wham!

Just. Like. That!

Don’t worry, I wasn’t channeling my inner toddler and there was no kicking or screaming or dropping to the floor.   I was managed very discreetly with grace and finesse. One must not upset the other patients you know.

I had travelled to a gynecology appointment in a major hospital in the big smoke. I’ve been precariously teetering on the edge of despair, as I’ve not been living but merely existing through 12 months of pelvic pain of increasing severity.

The last seven months has seen…

  • Five exciting transvaginal ultrasounds (also known as dildo cam) to monitor my ovaries.
  • An elevated result for an ovarian cancer marker (which can mean quite a few things that have nothing to do with ovarian cancer).
  • Two physical pelvic exams with an onco/gynecologist who has extraordinarily gentle hands and excellent bedside manner. But this still involves WHOLE HANDS INSERTED INTO SACRED BODILY PLACES!
  • Months and months of abdominal pain, that at times feels like the onset of labour and at other times feels like my ovaries will explode from my abdomen in poltergeist fashion.
  • No ovulation. Zilch, nada, nothing! Despite having enough oestrogen in my pre menopausal state to initiate a great coral spawning on the Great Barrier Reef.
  • Fortnightly episodes of pain that is associated with internal bleeding which the docs think is either from my hemorrhaging ovaries or endometriosis being stimulated by Tamoxifen Tamoxibitch.  This brings on pain when going to the toilet, pain when sitting down, pain when coughing, or standing, or hugging my children, or trying to make their lunch, or talking with the school mums.

It is wearing. me. down.

And I’m here sitting in a hospital waiting room, AGAIN.  Reflecting on my life and how it came to be an endless train ride, stopping at all stations of overly cautious and expensive medical management.

This is what cancer treatment turned me into. Stanford Blatch. Does anyone know where I can get me a diamante or glo-mesh jacket?

How could I get cancer and be transformed so stunningly from pre cancer Lisey to Stanford Blatch from Sex In The City, a five-foot-four, bald, gay, guy who rocks a fedora or a diamante blazer?  How did this happen?

I’m fat, I’m bald, and living in pain.  Cosmopolitan cocktail anyone?

Why does it feel like my pelvis is trying to kill me, if not kill me then perpetually make me miserable and unable to function?

Did breast cancer treatment do this to me? Or would some of this have happened to me anyway?

Anyhoo, back to the waiting room today.

Where all of my hopes were pinned on finally meeting with the experienced specialist that I was referred to. Today was the day I would get some answers and a plan. There would be someone to review all of my tests, listen to me and reassure me that I would be okay and end my year long trail of despair.

So I, (aka Stanford) sat in a crowded waiting room which was comprised of 95% antenatal patients and 5% gynecological patients.  For two hours I watched an abundant stream of pregnant women waddle into their appointments. I sat reminiscing about my own pregnancies and fertility, floated deep in thought about the miracle of life and the totally amazeballs job women’s bodies do at growing and delivering babies.

Finally, after two hours of waiting amongst the bellies, I was called. I gathered my belongings and made my way across the waiting room.

The doctor I had hoped to see was not standing in front of me. I would be seeing a totally different doctor who wasn’t really qualified to help me.   He said my pain didn’t sound like any pelvic disease but surgery was necessary to try to diagnose. After fifteen minutes of discussing breast cancer, and fertility, and ovaries, and endometriosis, and pelvic adhesions, the replacement doctor offered to operate on me but recommended I return home and start Zolodex (and enter menopause). It might fix all my issues before the wait list for surgery shrinks.

I left the consult feeling like I had been dismissed. I didn’t feel I’d been understood. Was that the best advice?  I felt lost and confused.

I’m not sure I even know what I want anymore? Can I even advocate for myself? I’m not sure what to do or how to proceed. My quality of life is deteriorating. It should not be like this post treatment. It just shouldn’t. By now I’m supposed to have hair, and be moving on with my life and I’m grappling with decisions about menopause and hysterectomies. About dumping Tamoxifen in favour of other post menopausal cancer therapies and there are severe quality of life consequences in all of these BIG decisions.

Back in 2013 the craziness of cancer treatment spanned four seasons. Summer hit and I was finally finished with active treatment.  Just three months post chemo and (coincidentally?!?!) around the same time I started to take Tamoxibitch err, Tamoxifen, my ovaries decided they would start working again as some mutant one eyed deep sea monster, lurking in the shadows of my recovery. They would rear their heads at different moments and then dive deep again, but always with a menacing, shadowy presence.

In these last two years, everything that makes me a woman has been attacked. My body, my fertility, my sexuality, my looks. Bang! Bang! Bang!

Enough already!

I left the consult and returned to the waiting room.  There I sat for another hour waiting for a pre admissions nurse to meet with me and take my forms.

2. “Have you ever had surgery?” Tick the box.

            Yes, yes, yes.

3. “Please list the surgeries you have had.”

           Blah, blah, blah.

5. “Any allergies to medications?”

           Well there was this one time a nurses head turned into a granite boulder and rolled down the hospital hallway crushing theatre staff…

9. “Do you have any implants?”

           Yeah, kind of. Are they important? Or is it only dentures, pacemakers and cochlear implants that matter?

11.”Are you on any medication?”

            Let’s not speak Tamoxibitch’s name.

13. “Do you have depression?”

            No and it’s a miracle I don’t.  Really, it is a fricken miracle! 

*this is not actually how I answered the pre admissions form. Would have been fun though.

It was back in this waiting room, with a new batch of pregnant ladies around me and whilst I completed my questionnaire that it happened.

Tears.

Trickling down my cheeks.

I scoured the immediate surrounds for a box of tissues, there were none. I had to use my hands to wipe the tears away.  I’ll also admit to using my sleeves to wipe away some snot.  Not a box of tissues in sight!

I cried for what had been taken away from me in the last two years.

I cried because I’m sick of waiting in hospitals for doctors.

I’m tired of retelling the story with each new doctor I meet.

I’m tired of hospital cafeteria coffee.

Tired of pain and illness.

It’s no secret that my husband and I were trying for number three when I was diagnosed with breast cancer. And I remember that awful moment at diagnosis when I thought I was actually pregnant. How in the hell could I deal with being pregnant and having breast cancer at the same time? I shudder to think about the “what ifs” of that scenario.  I never felt such a surge of relief as the one I experienced when my period finally came in the days after diagnosis.

When this whole fiasco began, the sole focus was on getting through it. It was clear to me that this would be the end of adding to our family. Having a hormone positive cancer would mean another pregnancy would expose me to elevated levels of oestrogen and put me at greater risk of disease progression. Even though the science doesn’t actually know if this is fact. It is a very complex thing.

With a grade three cancer, we just dived right into treatment. The decision was made not to have Zolodex to protect my ovaries.  I had two kids, I was in my late thirties. There wouldn’t be a need to undergo IVF before chemo. I think I was sure.

But that doesn’t stop me grieving. It doesn’t stop me getting emotional in aisle five at the supermarket when I walk past the teeny tiny Bonds singlets or the baby wash.

And although I am incredibly happy when I hear of friends who are having babies there is grief still. And this grief is not just about breast cancer.

I think it comes from another place and time, I guess.

From the time I survived an ectopic pregnancy between the births of the two miraculous children I have. This ectopic was diagnosed at 12 weeks after a perfect storm of medical system diagnostic failures. Several rounds of poor imaging which missed it, combined with some sleepy doctors who didn’t arrange the right tests for me that would have picked it up weeks earlier.

As it turned out, I had 1.5 litres of blood in my abdominal cavity. Slowly rupturing over weeks and weeks and weeks.

“Ectopics are notoriously difficult to find,” they said. This, despite having several late stage ultrasounds that (apparently) showed everything (uterus, tubes and ovaries) was normal.

My doctor and I wrote a letter of complaint for what had transpired.

I was told the doctor who wrote my ultrasound imaging reports at the centre was moved on. Moved on to where, I wondered?

After the emergency surgery to remove my fallopian tube and a twelve-week foetal mass, I was sent to recover in the maternity ward.  I remember coming to and hearing the sound of a crying newborn somewhere across the hall. I managed to pull the crying into my dream state, and there, I gave birth to a healthy baby girl.

When I finally did wake up, it was to the sound of a breakfast trolley being wheeled up the hall and a tray being delivered. I was empty. There was no baby for me. Just a sore abdomen with some new scars and one less body part. I was terrified by the threat to my future fertility.

For weeks after that, friends saw my swollen abdomen at the shops and congratulated me on my pregnancy.

Women have these “events” all the time in their reproductive years. These private losses with their private grief (as do their partners) and they soldier on silently. The last 12 months were supposed to be about regaining my health (and hair) and moving on, soldiering on in silence as all those brave women do.

And I wouldn’t even be writing about this now, if I hadn’t fallen into Cancerland and blogland a few years back.

But I guess these “events” fill us up over time.  And it all overflows from me now in the waiting room of this crowded antenatal clinic.

Thankfully, a you beaut admissions nurse came and invited me into her room, and instead of just taking my surgical forms, she gave me a chance to express how I felt. She listened to my grief and my confusion about how to proceed.  She arranged for a more senior doctor to be paged for me to see.  I was then taken to wait for her in a time out room private, quieter room as to not scare the other patients. I was given a cup of tea and my own box of tissues.  My very own box!

The time out room

The time out room – aptly named by my friend Marina who happened to call my phone at this precise moment of my solitary confinement.

The most amazing surgeon and doctor I have yet to meet on this journey entered the time out room.  This doctor was the splitting image of Claudia Karvin, the Australian actor.  I’m not sure, when Claudia gave up acting to become such an outstanding gynecologist. But here she is sitting in front of me!

Dr Claudia read my file notes and reviewed all of my tests.  She looked me in the eyes. She listened. She empathised. In contrast to the previous advice I had received, she advised me that if she were my mum or sister she would get me to have laparoscopic surgery first before making any decisions about menopause.  Switching my ovaries off so soon would hide the conditions I have so that I might never be diagnosed and treated properly.

But I’m stuck asking the question is this a result of chemo and Tamoxifen, or would all of these issues be occurring anyway from my previous ectopic? It’s really hard to know. Perhaps this might have happened to me anyway even without cancer treatment?

It may be that Tamoxifen is not for me and Zolodex may be necessary after all in the months to come. Zolodex would switch my ovaries off to prepare me for a hysterectomy down the track. Hormone positive breast cancer patients cannot have (HRT) hormone replacement therapy. So menopause would be brutal.  And it’s really about weighing up quality of life issues and carefully balancing the opinions of my oncologist to optimise my chance of keeping cancer away.

So I am scheduled for surgery within the next eleven weeks.  Dr Claudia will use keyhole surgery and a camera to look for signs of Endometriosis, Adenomyosis, or pelvic adhesions, and the general state of my mutant Tamoxifen effected ovaries.  She will fix what can be fixed.

This will then allow my trusted oncologist to make a more informed decision about hormone approaches to take with me going forward.

Despite sitting at this hospital for five hours, it ended well and my sanity has been restored.

Dr Claudia was so engaging and so supremely knowledgeable that I didn’t even feel the need to lower my gaze and look at her footwear.

It’s been a while since I experienced a crush like this.

Dr Claudia was happy to pose for this shot.

Dr Claudia was happy to pose for this shot.


Cutting My Losses

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Cutting my losses

It’s a very strange feeling to be over 16 months out from chemotherapy and yet be back to square one with the hair where it all began to fall out in April 2013 from FEC – D chemotherapy.  Punk Chick and JRF helped me treat the hair loss as a celebration of sorts, a path to wellness. “Piece of cake!” I said, since it wasn’t going to be permanent.

In retrospect, what a genius idea it was to document that process for the SHITTY TITTIE CHEMO CUT CHALLENGE.  None of us had any inkling that so much of my hair would be killed off permanently by my life saving chemotherapy.

Just yesterday, I had the pleasure of lunch with the radiant, rainbow coloured, hairdresser Punk Chick and my dear sisterlike friend Kenny. They agreed my head could do with a shave as there wasn’t a lot of other options holding out for me in haircut land.  So this had to be. A clean slate. Starting afresh, moving on, and all that.

My recent attempts at hairstyling. With deepest apologies.

My recent attempts at hairstyling. With deepest apologies.

As it stands, this must be about Shitty Tittie Chemo Cut Fourteen, and hopefully one day very soon, I won’t think of this as a chemo cut anymore but just as “my cut”.  The association between this and chemo is very strong. But so was the constant reminder of cancer from looking like I had the hair of the Three Stooges.
(Yes, all of them together) And many people still thought I was still having active treatment anyway.

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The family that shaves together stays together!


I’ll continue ingesting Minoxidil and Spironolactone through the summer and then I think I’ll just forget about it. The hair specialist says the hair I have is likely to fall out once the meds stop.  But I have so much to be thankful for and it’s time to direct my energies to more important things.  You know, like things that actually matter.

So for now I’ll run with the slogan ,  “the family that shaves together stays together”.  Or something like it.


This is us. This is me.

Twenty three months ago I was diagnosed with breast cancer.  Around the same time, 650kms away from me lived a woman roughly my age, married and raising two young children, who was also just diagnosed with breast cancer. We met in an online community for young women with cancer, a group that has connected me with women that will be lifelong friends.

Marina is one of them.

We had the same chemotherapy regimen and she would read my blog to see what laid ahead for her because I was a week further along.  Despite going through exactly what I was going through, incredibly, when I struggled to get out of bed, Marina posted to me little gift packages with the sweetest cards. When I started to burn from radiation, we texted photos of our chests to each other and she shared what she had learnt from treatment. When my hair never grew back, she sent me her beautiful silk hair scarves (pictured) that she wasn’t using anymore. Later on, she brought me her wig when she visited me in my hometown.

This is us in my home town.

This is us in my home town.

Despite us both having aggressive, nodal positive breast cancer, we are positive for still being here, and now inextricably linked by our shared experience and friendship. Marina is such a brave woman and she has taught me a lot about myself.

Earlier in the year, Marina jumped on an extraordinary opportunity to tell her story through Canon’s “Shine a Light” promotion. Several months after we had completed our treatment, the Australian journalist Lisa Wilkinson chose Marina as her subject to photograph as a symbol of what matters to her. Shining a light on breast cancer was what mattered to her, and she wanted to capture an image of an incredibly strong survivor.

In the video below, Marina articulates the message that people see her as she is now. She doesn’t want to shy away from how breast cancer and a double mastectomy has physically transformed her.  Here, Marina is coming out of the other side of her breast cancer.  As if to say, “this is me, I’m happy with who I am, take it or leave it”. Bravery in spades!

A month ago, I had the pleasure of flying to Marina’s city. She wanted to enter an image of me in the National Photographic Portrait Prize (2015) in Canberra because she finds my story compelling.

This year the competition received the biggest number of entries in its history. Sadly, Marina’s images didn’t make the top two percent of thousands of submissions and although disappointed she didn’t make the cut, we wait with anticipation to see the final images selected when it is exhibited next year.

What is clear though, is Marina’s passion for photography and her incredible talent for it will go far. Marina turned to photography earlier this year as a positive focus in her life after the horrors of last year, and she has achieved so much in such a short time.

What was of interest in my story to Marina, was the cruel irony in me creating the Shitty Tittie Chemo Cut Challenge which can be viewed here, virtually celebrating the loss of my hair to chemotherapy with such positivity.  

And yet here I am fifteen months later, overweight and menopausal, wearing my wedding ring on my necklace because It doesn’t fit my lymphedema swelling in my hand from surgery. I am still without eyebrows, and if you zoom in you can see the facial hair I have from the hair drugs I take.  Let us not forget that ghastly hair!

But it’s not about the hair to me.  It’s about the other things that it represents; the loss of health, youth, fertility, breast sensation, beauty, intimacy, womanliness, femininity.  I think Marina has captured the essence of all of that so well. It can be seen in the tension in my eyes and forehead, in the anger with the wig. She HAS really nailed it. My story.

So, this is me. Take it or leave it.

TAKE WHAT YOU WANT AND PAY FOR IT: Shitty Tittie Chemo Cuts #1

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Artist’s statement: The image title is derived from a Spanish proverb which is particularly pertinent to Lisa’s story. I met her in an online support community for young women with breast cancer. She had had long, thick, blonde hair for 37 years before chemotherapy commenced. Though grateful to be in remission, she has paid dearly; her hair and eyebrows have not regrown. Lisa’s suffering emerges from her desire for the return of her hair, not in the longing for her breasts that have been lost to cancer.

KEEP YOUR HAIR ON: Shitty Tittie Chemo Cuts #3

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Artist’s statement: I met Lisa in an online support community for young women with cancer. When she wept after being told the loss of her long, luscious blonde hair and her eyebrows after chemotherapy was permanent, her hair specialist suggested she should be grateful ‘for her children’s sake’. This image depicts Lisa’s deep anger at this lack of empathy and her dissatisfaction with the solutions suggested to her – wigs, hats and scarves do not console her for the loss of her femininity.


When I look at Marina’s images I get choked up in the same way Marina did when Lisa Wilkinson showed her her images for the first time. There is grief and loss captured here, but there is also acceptance of self.  

I can’t thank Marina enough for asking me to be involved in this project.

Thank you also to our gorgeous friend Candy for her assistance with the titles and words. I would never have reached that 100 word limit on my own!

Links


http://www.canon.com.au/en-AU/Personal/imageSpectrum/SHINE#/

http://www.portrait.gov.au/exhibitions/national-photographic-portrait-prize-2015


Chemoversary Edition

This week saw the passing of three hundred and sixty five days since I completed my Fec-D chemotherapy regimen.

Yes. It’s my “Chemoversary”!   And tonight I’m gonna party like it’s 1999.

No, no, no, I won’t be doing that!   Instead, I will, on this splendid Sunday evening, present to you a bathroom selfie titled “Shitty Tittie Chemo Cut Thirteen – The Chemoversary Edition.”

With around 3-6% percent of women who have the drug Taxotere (Docetaxol) going on to have poor hair regrowth post chemo, and with doctors stumped about what the mechanism is that leads to thinning and baldness in some patients, I’m guessing this makes me pretty spesh and unique.

The illustrious “Chemoversary” bathroom selfie. Pensive. Nostalgic. Sometimes saddened but often amused (In a shaking my head in disbelief kind of way).

But there is more to life than having long, thick hair.

For example, wiping hairs out of your face on windy days is such a pain.  So is getting a long hair in your mouth while you are eating.  That stuff one can do without.   Who needs to waste time purchasing hair accessories?  Who really wants the risk of getting their hair caught in power tools?  That is dangerous!    Or braiding or platting hair.  Pffft!   Or tying it back with scrunchies. So 1980’s anyway. Those things are all so, so overrated!  And quite frankly, pony tails belong on ponies.  There I said it!

There is also much, much more to life than supporting the hair dressers of the good land in which you live. (Sorry Punk Chick – It was my dream to visit you every couple of months for a new do to make up for my abmissal hair dressing tally from the 1970’s to 2013). But in 369 days, and after a bit of fuzz trimming, this is where we are at. I ain’t going to be helping you pay your bills any time soon!

Thank you to all the people who felt sorry for me. It truly helps to know you hold some sort of nostalgia for my hair loss too.  Thank you also to the people who finally conceded defeat and stopped telling me it was early days and would grow back normally with more time.

To get a little nostalgic for my lost hair you can see what it started out like prior to chemo and finished up as in the video here… 

Huge thanks to my girlfriends Candy, Marina and Angie who sent me or offered to send me their wigs from across Australia.  An incredibly real version of Lady Diana and Ab Fab Patsy arrived at my front door via Australia Post.  I’ll share some pics of these at some stage.  I have embraced these wigs a few times in my own house with the blinds pulled down.  I even ventured out in public in the company of trusting girlfriends, when late one night we went out for dinner in town on one of the coldest and quietest nights of the week.  At this stage, they still feel a little like wearing a dead marsupial on my head.  But I might persist.  Might being the operative word.

For anyone who ever finds themselves in this situation of hair not returning properly post chemotherapy, there are women world-wide who will share their stories and offer support and advice. Click here to be taken to the resource “Ahead of Our Time” from a group called the Taxotears.  Permanant hair loss can be one of the hardest psychological issues to deal with post cancer treatment.

Thankfully, I’m getting to the stage where I’m starting not to care so much.  But it has taken many months to get here and I’m not shedding Taxotears anymore.


Chair Rhymes With Hair

“Wow, I can’t wait to see what your hair will grow back like” someone said. “I bet you it will be thick and curly. My girlfriend’s cousin had think curls.”

“My uncle’s wife had dark curly hair after her chemo” someone else said.

“A woman that comes to our craft group had cancer, and her hair regrew in so, so thick it was like wool!” Yes, that was said by someone too.

As well as about three thousand other examples of  post chemo hair growth observations, and about five thousand “Just wait and see, it will grow back soon I am sure of it!”

Six months after chemo, time would tell, by then most people have their hair back!

We rolled on through the loss of my hair in March 2013 from FEC -D chemotherapy, treated it like a celebration. A celebration to saying goodbye to cancer and moving on.  I created the Shitty Tittie Chemo Cut Reveal Challenge. Eleven different hairstyles with Punk Chick to make up for my abysmal life hairdressing tally before getting cancer at thirty seven. I even made a video. See…

The hair loss was easy to experience because it wasn’t permanent.   Seems now it is.  And that reality is now dawning on me.

In the months after the year of treatment finished I threw myself into triathlon, running, cancer fundraising, and walks. I was part of a team that raised nearly $71,000 for Peter Mac (which I will add a blog about shortly). I also walked in The Cancer Council’s Relay for Life, and ran in the Mothers Day Classic.  So it’s fair to say I’m totally pinked out for a while.

Fourteen months ago, I had long straight thick blonde hair, and pretty much for most of the thirty seven years prior to that.

Today, I don’t.  Today, I’m sitting in a hair loss clinic in the big smoke.

There are some white Eames replica style chairs in this second floor medical office and I am invited to sit by a doctor who clearly has never had any issue with hair loss.

The white chair beside me has one lone, thick, dark and very long hair on the chair. Just one.

We discuss my history of hair and the details of my treatment for breast cancer. What was the extent of my shedding prior to breast cancer?  Prior to chemo?  Was my shower plug hole filled with hair or just some strands? Parents, yes, they had excellent follicular coverage on their heads. Yes, my Grandparents all had thick hair, although my maternal grandmother’s hair was thin at 79.  Yes, my older brothers both now have receding hairlines and male patterned baldness.  So does my husband. (Just thought I’d put that in.  It really has no relevance!)

I am shown a picture that documents the degrees of shedding with varies sized hair clumps in each box of the table.  Mmmmm tasty!

“How is the hair on other parts of your body?” asked the hairy doctor.

“Well, eyebrows haven’t returned, eyelashes haven’t grown in. Leg hair and arm hair is okay, a bit thinner than before. Pubic hair is thinner.  Nose air, hasn’t returned.  I have a A LOT more facial hair now. You know those ones that grow a few inches in twenty four hours?  Yeah those.  And of course, my head has developed male patterned baldness or androgenic alopecia, which according to Google is hair loss that occurs due to an underlying susceptibility of hair follicles to shrink due to the role of androgens.

The hairy doctor taps away on a wonky keyboard entering all of this data into my electronic file. This incessant clunking of the iMac keyboard perched precariously on a mouse pad, half on and half off goes on forever.  Why not just stop and straighten it?

Then, out of nowhere,  tears begin to gush from my eyes.

The hairy doctor stands up from the white replica Eames chair, comes around to the front of the desk and takes my hand. I am told “Be happy for your children, be happy for your children.”

“It’s only hair”

But it’s not ONLY hair!

After a year and a half, this is the thing that gets to me.  It’s not the mastectomies, the ongoing pain, the weight gain, the menopausal symptoms, the loss of sexual function and intimacy, the ruptured tissue explander, the damaged lung, the supposedly benign lesions on my liver that will be watched.  The seeming ability to age twenty years in one.  It’s not even the cancer or the loss of my expectation of my healthy life and my healthy future.

This hair loss, my hair loss, ten months after finishing chemotherapy, is symbolic of all of these things.  Collectively.

So I compose myself and look sideways over at the artwork on the crisp white walls. There I find no distraction. For the artwork is an rather accurate representation and of my shiny thin scalp and my receding hairline.  Surely, all of the follicular themed artwork that adorns the walls of this practise is taking the mickey?  Lithographic prints of landscapes, detailing hills and depicting deforestation. Barren. Sparse.  Just like my post treatment head.

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Not a Italian streetscape oil painting or watercolour of sailing boats in sight. Artist, not known. My crying eyes could not read the name.

Halfway through the appointment I am asked to move and sit on the chair with the long solitary hair strand.

My head is photographed from different angles.  At the end of the consult I am sent to the blood collection room. My results will be discussed in a month. These tests are done to ascertain if there is any underlying cause of hair loss, not related to chemotherapy or genetics.

But the wobbly keyboard. The follicular styled artwork. The single hair on the chair.  The tears just keep flowing throughout the consult and I am offered a box of tissues to quell the year of tears and emotion.

The hairy doctor leaves the room and gets the Professor.  I’m a little too difficult to manage.  Minutes later, the face of hairy hope enters.

The Good Professor says that with some people, their hair never grows back post chemo, and they just don’t understand what the mechanisms of this are. It is really just luck of the draw.

“But there are many things we can do” he adds.

Medications can be taken long term, not to regrow the hair that has gone,  but to slow the rate of shedding going forward.   So let me get this straight!  These medications won’t work at regrowing hair on my head, but as a side effect, they will add it to my face and body.   Pleeeeaaaase no!

As for those expensive lotions and potions, useless too.

There are hair transplants.  At this point, the horror of the catchphrase of the “Advanced Hair, Yeah Yeah! Ashley and Martin television add flickers in my head.

There are wigs, so post consult and blood collection, I am shown a small wig display of cheap synthetic wigs as a starting point.

The wig room

The wig room

The wig option seems to be the most enticing now,  after I ridiculed the prospect of them last year at the LGFB workshop I went to and wrote about here. 

When I finally leave the consult room I notice the long, solitary hair is no longer on the white Eames chair. It must be stuck to my backside.

On the train I ask myself the question, WTF am I spending lots of money seeing a hair specialist to be told it’s only hair?  I thought a hair specialist would understand that it is not ONLY hair to their patients. I mull over the expensive treatment options. I am not sure how to proceed. Does it even matter anymore?

As my train leaves the city and stops at one of the last suburban stations, my face lights up when I see my friend boarding my carriage. I really, really needed to see him today.  He boards the train and fights off other passengers who want the seat next to me.  We embrace. We have a long chat as we travel to his home in the county. He makes me a delicious meal and we talk about hair,  chairs and being grateful.

I am cancer free at the moment, so why don’t I just focus on that? I should be grateful.

Just. Be. Grateful.

 


Waiting

January the 18th was an awesome day for so many reasons. Twelve months on (and ten months of breast cancer treatment between), I went back and completed my second sprint distance triathlon.  The first was done a week after diagnosis and marked the beginnings of me entering the fray of the disease blog genre when I published this post.

Three hundred and sixty five days ago I was filled with the terror of cancer and what was to lay ahead for me.  When I made my way into the river for the triathlon start, all of the cancer related anxiety disappeared.  I checked out of Cancerland and tuned into the sights and sounds around me in the immediate moment.  It was sunset, there were hundreds of heads and arms thrashing about ahead of me so I waited at the back of the swim pack to compose myself. There were large rivergums on the banks and the sun dappled through their branches, there were sulphur crested cockatoos and galahs screeching at each from the treetops.  Through my goggles I could just make out the Port of Echuca Wharf in the distance.

I recall the exhilaration of commencing movement through the tea coloured water, of seeing air bubbles emerge from my mouth, stick to my face and be pushed away with the momentum of swimming.  Of seeing arms and legs thrashing and churning through the water.  The thrill of turning the large meander bend in the river and swimming within metres of paddles steamers.  Of being pushed along by the current of the ancient river towards something great.  The sensation of fine river sediments squishing between toes as I stood to make my way up the hill to the bike transition.  I was alive and the Dread Dragon from the previous week had finally taken a nap and didn’t return for a couple of days. My family and friends were there to encourage and support me.  I wondered if I would ever do anything like it ever again.   I would have to wait a long time to see.

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Photo from echucatriclub.com

Two days later, the Dread Dragon returned and breathed fireballs at everything that mattered to me in my life. Struggling to sleep and eat from the fear of the unknown, the long road ahead of cancer treatment ate away at me.   Mr Cool took me off to my local hospital, anorexic from my short dalliance with the anti-depressant medication my doctor had tried to help me with a week earlier, nauseated and with heart palpitations from the sheer anxiety and terror of being a newbie to the world of cancer. The waiting for results had began.

After finishing ten months of treatment and giving my radiation burns time to heal I decided to return to this event.  In November,  once treatment was complete, I took off like a rocket and tried to train as I once had, six times a week.  But it was too soon and too much for my chemo and surgically depleted hemoglobin.  I was falling into bed at 7:30pm and was unable to wake in the mornings. So I dropped the training back to three sessions a week and that seemed to be enough to help lift my treatment fatigue.  I almost gave up on the idea of returning to the same triathlon. For weeks it just seemed unachievable and unrealistic.

But in mid December I decided to have another go at reaching the goal and I started training more frequently again.  I wasn’t waiting any longer.  My goal was just to go back and finish it again, 700 metres swim, 20 km’s on the bike and a 5 km run and feel comfortable in myself through the process.

I’m glad I didn’t give up on this idea.  I’m glad I didn’t wait.

This time, there was much less fear about doing the actual triathlon even though I had a lot less fitness.  Having completed it before helped, but there was something about what I have been through in 2013 has made me a bit tougher with respect to challenges.  A bit more of a go getter.  Some people suggested I should wait.  Wait till my body had recovered more.  But there is no time to waste.  Why should I wait to be ready to exercise?  To train?  What was I supposed to wait for?  What was I fearful of?  Getting better?  Getting past cancer?  Getting on with living?

I’ve put off many things in my life thinking there would be a more appropriate time down the track to start working towards something.  I’ve made loads of excuses.  I sat and waited.  The years rolled on by, and I was still waiting.  But I’ve learnt this year that the best time to start is NOW.  Not when I think I look more respectable in lycra or am fitter, or have faster times or feel more comfortable while running. But to just jump in and have a go.  Just drop the fears and the inhibitions that hold us back.  I’m not going to be the Mum who sits on the side of the pool anymore and watches my kids.  I am what I am. In all of my puffy, wobbly, bald, post treatment glory.

While waiting in a pre race toilet queue, I got talking to a lady who asked me if I had done the race before. My thin short hair still screams cancer to some people and after she glanced up at my scalp she paused uncomfortably.  I told her my story and she proceeded to show me her open heart surgery scar from ten months earlier. Surgeons removed what was thought to be cancer on her aortic valve. And there we were waiting in a pre race toilet queue about to do a sprint distance triathlon. Both of us with an appreciation for our lives and making the most of things.  Waiting for the loo.  But not waiting for the things that were important to us.

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What incredible friends and family I have! Photo Credit to Bevan Lemon.

Then, while waiting on the grass for the pre race briefing, I spotted a couple walking past the park. They had waited for the right moment to approach me.  I bawled like a baby on recognising high school friends Mel from the Blog I GOT THE GOOD CANCER and ‘Bevan Lemon’  that drove a 700km round trip to surprise me.  This gesture mean’t so much to me and I will be forever be grateful to them for doing that.  Even more incredible was that Mel had just finished 6 months of chemo and here she was, in the northern part of the state on a 39 degree day cheering me on (and she still has better head coverage than me!) and all while waiting to see if her cancer was in remission or not.

When Mr Cool and I went to leave our children with their grandparents to walk to the start of the swim, my oldest son got upset.  This was partly because he saw my reaction to Mel and Bevan’s arrival.  But it was also about him remembering the details of this previous year vividly.

He remembers the state his Mum was in last time I did a triathlon and it was when his life changed immeasurably.  Shortly after that triathlon his Mum went away to hospital many times, she came home with hard breasts with scars and spent long durations in bed and there was a bag of blood attached to her and she kept going back to hospital all the time to see doctors.  She couldn’t hug him like she used to because she was in too much pain and she couldn’t lift her arm anymore. Then her hair all fell out and she was too sick to care for him and his brother, and people kept arriving at his home with meals and cards and flowers.  He had waited a long time for “his” Mum to be “his” Mum again.  And now we were back in the place where in his mind, it all began.

After reassuring him that everything was okay and that I was very happy and excited, he agreed to cheer for us and I gave him our camera and asked him to take some photos.  He played with his brother and they watched and waited for their parents to come into view as the race progressed.

With all of the excitement of surprises from sneaky friends and unsettled kids,  Mr Cool and I hurriedly made our way to the start and while walking with a friend the tears started flowing at the feeling of being back here.  I had waited a long time to get back here, to this moment.

We were late getting to the start line and it was like a comedy of errors with Mr Cool and I trying to get our wetsuits on as the starter called five minutes and a few hundred people gathered in the water below us.

Seven months after chemo my regrowth nicely resembles Harold Bishop! Way to go me!

Seven months after chemo my regrowth nicely resembles Harold Bishop! Way to go me!

Still conscious of my post chemo Harold Bishop hairdo, (a character from the Australian TV Soap Neighbours) and the complexities of easing the new hot flush me into tight lycra and a wetsuit that fitted me much better pre treatment, I got a quick kiss from Mr Cool and ran down and jumped into the river at the back of the pack and immediately started the swim.

I’m not a fan of menopausal hot flushes underneath a winter wetsuit and swim cap. Half way along I had to stop to tug on the neck of my wetsuit to let some cool water in.  Then I resumed swimming.  When I reached the river exit I fell over getting out of the water.  I was then unable to get the wetsuit down over my much broader chest and my arms were much more tired from the swim this year.  I walked through transition and wasted 5 minutes just trying to work out how I would GET THE DAMN WETSUIT OFF!   Riding a bike in a wetsuit?  Now there would be a challenge.  But I took my time and as the transition area emptied itself I was able to pry the wetsuit off my elbows and make my way out onto the bike course.

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Not waiting. But doing it.

On the bike the wind picked up and I was at the very back of the bike field pushing on my own through the wind. Despite there being very hot and windy conditions, I rode the 20km’s with a big wide smile.  As I pedalled along I reflected on what had occurred in 2013.  My body felt more tired with each lap but I felt comfortable, and I was okay with being last.  I was just thankful to be there, and so grateful to all of the people that supported us in 2013.

Then out of nowhere a woman rode up along side me.  After some chatting about the heat and the wind and some introductions, it turned out it was her very first triathlon.   She was intending to enter the event as a team, and wait till later on to enter as an individual. Down the track when she would have developed more fitness and discovered if she in fact liked triathlon or not.  But when she went to sign up she discovered her ‘”friend” had already entered her as an individual to complete the whole thing.  So on just 18 days of training she turned up and completed the race.  What a legend!  And that made two of us who were not waiting.

My incredible partner raced the swim and bike legs in the lead pack and then chose to stop and wait forty eight minutes for me at the start of his run leg to run alongside and finish with me. In his mind, I would not come last, as he would cross the line after me.

Yesterday, I surprised even myself. My second sprint distance triathlon achieved, twenty minutes slower than last year and my proudest achievement yet.  But most importantly I was again reminded of what an amazing network of friends and family I have around me and in choosing to do this triathlon, I was able to give my sons the image of me running across the finish line, ecstatic and with their Dad in tow.  I’m glad they didn’t have to wait a second longer to experience this.

Now if only I didn’t have to wait for some more hair!

Mr Cool gave up an age group win and stopped and waited for me so we could finish together, with Mr two chasing us up the finish chute.

Mr Cool waited 48 minutes to let me finish before him with our Mr Two chasing us up the finish chute.