October is
Breast Cancer Awareness Month
Irony of Ironies
And then I was diagnosed with breast cancer....
The 18th
October was probably the day. A year ago today, my life changed and I embarked
on a journey – oh, how I dislike using ‘cancer’ and ‘journey’ in the same
sentence. In most cases, the word " journey" signifies to travel
or to take a trip to some place, a holiday perhaps. I believed going on a journey is something we intentionally
chose, not something that is forced upon us, but I’ve learnt lots !
A “Journey” - passage or
progress from one stage to another – so yes, I’m on a journey – a wholehearted journey
that has enabled my biggest personal growth, emotionally and spiritually . Nel corpo e
nell'anima.
I sorted out who really cared - the fakes, the “I can’t be bothered” the
‘I lost your number” brigade (really?) and the absolute champions, family and
true friends. People I had only known for months gave me support and love
whilst people I had known for a lifetime seemed to have fallen from the face of
the earth and I still ask myself why but in this process, I met some amazing
people - in the chemo ward, in the radiation ward and even in the waiting
rooms.
There were also other significant occurrences in ‘that’ October knocked me over.
I am now getting back on track, , shakily, but with a certain resolve that was
once non-existant.
On Thursday 4th
October, Alex departed for his much deserved post university round world
journey… 22 countries in 22 weeks, so I believe!. I was so very happy for him
but of course I knew I was going to miss him incredibly. Bon Voyage my
beautiful boy. Find out what makes the soul sing and do that….
In the early hours of the same morning,
we lost a dear friend,
2 months
shy of her 30th Birthday.
Wednesday 10th October, - The funeral – the sun shone in that
Camellia Garden whilst Stevie Wonders “You are the sunshine of my life” came
through the speakers. Her presence certainly was very warming.
Greatly missed
and always remembered. Farewell Nat.
On that same day, hours later, a piece of paper was handed to me by my
doctor. Request Mammogram and Ultrasound of the Axilla it said.
I'm spinning, how quick the sun can drop away
And now my bitter hands cradle broken glass of what was everything
All the pictures have all been washed in black, tattooed everything
Thursday 11th October – 6am phone call – Dad has been moved
to hospital from the nursing home –calm Mum down – rush through peak hour
traffic – phone calls to my sister and to work. It was just another day we had
all become accustomed to in the past 7 years
On Monday 15th October. 6am-
the Angels came that day, and took my Dad far far away. No more pain
Papa – Sleep peacefully . Mum, your beloved partner needs time with you now, to
say her goodbyes so I will leave you both to go and make some necessary phone
calls. Michael at work, Elizabeth in New York and Laura and Alex in Paris.
Another necessary phone call was to organise the relinquishing of ‘that’ piece of paper that said “Request Mammogram and Ultrasound’ . I sat at
a bus shelter outside the hospital, lonely, alone and shaking. The voices on
the other end at Alfred Imaging, Five Dock, didn’t care, they didn’t know that
Dad’s body was still warm, that I had delivered Nonno’s death message to my
children in far away lands and that I was petrified.
Hot phone to ear, hanging, hanging – I do like classical music but at
that moment I think I could have thrown my perfectly good IPhone under the bus
that was approaching. Finally the nonchalant voice on the other end came to my
rescue, or more likely, the IPhones’ rescue. Please report for your Mammogram
and Ultrasound on Thursday 18th October at 9am. That day…Shit, Laura
and Alex are flying in that morning for the funeral. Such a sad reason but I
would be so happy to see my children again – I needed some deep tissue hugs big
time. So, I just dusted myself off, put on a splash of lip gloss and went back
inside to say my final goodbye to Dad. I am just so good at ‘putting it on’ –
damn me!
Thursday 18th October - So that was the day, well not
officially, but for me it was THAT day.
Ironically, this is also a day that I had remembered for a few years now – pre 2012- its Saint Luca’s feast day. A strange mention
in this context I imagine, but I picked up on the irony of this immediately as
the sun dawned. I have known for all this time that this saint, as the name
implies, brings light along with serenity, harmony, compassion and most
importantly, courage. I like the last option the best.
Courage is not the absence of fear, but the
realization that there is something more important than fear.
That realization came on this day.
On this day, I put the uncaring voices on the phone
to faces, strangers, going through their scripted dialogue… undress, waist up,
white gown, technician won’t be long…. What a blur! The mammogram technician
was friendly and chatty, although I did think that she was taking an awful lot duplicates…
and kept disappearing for what seemed like ages in between shots. The ultrasound tech was a serious looking
young man, Arthur was his name – he didn’t tell me, I just saw it written on
the ultrasound screen and somehow I knew I wouldn’t forget the name. I was
grateful that Arthur was a little more introverted than the mammogram lady, whose
name I didn’t get or if I did, I don’t recall. He didn’t say anything but what
he did do was go and call someone else to ultrasound my underarm..again and
again. A bit of whispering going on .. hushed tones are never good in these circumstances.
Finally, the doctor that was called in started asking me many questions… The
floor fell away and I cried!!
I don’t know if that was before or after she asked me to
come back later that afternoon for a biopsy…which I refused. My children were
back in town and I wanted to be with them. So, the doctor assumes that the
following day will be booked - wrong
again, sorry Doctor, it’s my dad’s funeral tomorrow and I really can’t miss
that now can I? It really wasn’t sarcastic sounding as that, she patted me on
the shoulder and smiled and in essence it was a relief that I could postpone
the inevitable for just a few more days – to mourn my father and to spend some
time with Alex and Laura before they flew right out again.
In the early hours of the next morning, Friday 19th
October, the day my Dad was being buried, I had the most vivid dream I can
recall. I was atop a beautiful mountain in some far away land even though it
looked very familiar and I couldn’t find my way back down!. All I could do was
look up at the warm sun and ask WHY?
Back in the real world, Dad’s service was beautiful. The
releasing of the white doves was poignant – Release me, the song, kept coming
into my head….
“Oh dear dad
Can you see me now
I am myself
Like you somehow
I'll wait up in the dark
For you to speak to me"
A weekend of grief ensued. Only a couple of people knew
what was going on with me. It was super important to get Alex back on that
plane to resume his adventure – that was paramount to me.
So it’s now Monday 22nd October – Biopsy time.
Scene is set in a cold darkened room, a
big light hovering over, 3 technicians and one doctor, all in white coats and one
big frightening ugly needle. Thankfully my dear friend Robyn was sitting on a
chair next to me, making idle conversation so that I wouldn’t hear what they
were all saying. I told them I didn’t want an unfamiliar doctor reading me the
‘you have cancer’ riot act , so could they please not talk, they could just charade
between themselves. Robbie knew..I knew..we all knew. What is still very vivid
in my mind is the sound. The sound of whatever it is that cuts a sample of the
tissue. I jumped and squealed at one
point – unlike me really but sure enough, they hit some nerve. So much for
being anesthetised.
Tuesday 23rd October – YAY, a day to celebrate
– Happy 26th Birthday my beautiful Laura. Forever the optimist –
Hearing the dulcet tone of your voice was magical today. I’ll cross my fingers
too!
For the following week my days and nights were ………..Nightmares
– Insomnia – Rapid Heart Beat – Night Sweats – Brain Overload……
I had the time from then to the following Monday to digest
the fact that I knew 99% it was going to be a certain diagnosis . So by the
time the actual results came in, I had gone through my grieving stages and was
ready to accept the diagnosis and figure out how to fix it.
During that week, I focused on the words "fight" and
"warrior", and I was worried that I'm NOT those things. From the
moment I accessed the techs on that day 18th October, I was thinking "fix it" and
"treat it". That's not ME fighting, that's the doctors doing their
jobs for me.
Sunday 28th October – Happy Birthday Dad – I
hope you’re celebrating with the angels. In one more sleep … the results are
in.
Monday 29th October – a beautiful day in
Sydney. The expression on my Doctors face didn’t tell me, it just confirmed
what I already knew. Please help me figure out how we are going to get through
this…please.
I bring this up because that night and in the hours that
followed, in New York, 285 lives were lost. Read on.
Brace yourself… the much dreaded phone calls had to be
made… at least Michael was here with me, his bear hugs were oh so
comforting. Laura in Melbourne and
Elizabeth in New York… who indeed needed to be bracing herself. Hurricane
Sandy, the worst ever, was about to hit New York in a matter of hours. And all
I wanted was to be there with her, hugging and protecting her. Mama Bear’s
instincts kick in, no matter what and some things we will never forget – I’ll
now remember Hurricane Sandy’s anniversary forever!
Next, Alex was en-route from Austria to Italy. I think he
may have been in a backpackers in Vienna when he got the call and NO you are
not coming home.
God, I hated making those calls.
October , 2012 , you sucked big time. And so, with the
violence of a door slamming shut, my life changed completely and we now begin –
the journey, so to speak.
I went straight into the cog wheels of the system – It is
now Friday 2nd November, and as my ‘new’ definition of Journey is - passage or progress from one stage
to another, I began the next stage.
I recall most of that day but
mostly how frightened I was. In my fear, it registered that my surgeon was
talking slowly and very carefully. It’s a bad cancer that had legs to walk to
your lymph nodes - its aggressive – we will treat it aggressively – and you
WILL respond!- I think I smiled at this point, Michael was squeezing my hand.
Doctor, I don’t want the bad cancer, I want the good cancer! But first we had
to answer a question: Had the cancer already spread? The left breast?, the
chest?, the stomach? I sat in the Imaging waiting room with Michael on one side
of me and Lucy pacing the floor whilst I just shook.
Is
there a light at the end of the tunnel? – Absolutely!. My ‘other areas’ images
were clear.YAY! Further mammogram results are in, and the winner is........
.....the
left breast.
Ding ding ding! My left girl is free and clear of cancer, so now, whatever happens, I get to have a mismatched set. Actually, there’re already mismatched!
Asymmetry is interesting - just ask Picasso
Ding ding ding! My left girl is free and clear of cancer, so now, whatever happens, I get to have a mismatched set. Actually, there’re already mismatched!
Asymmetry is interesting - just ask Picasso
Actually it should be a double YAY here. – My ‘team’, Doctor and Oncologist are
believers in breast conservation. If my cancer was located in the same quadrant of
the breast it would be possible that a lumpectomy would be done.
Now its time to meet my Oncologist – and what a legend she is! She drew little pictures
and explained what treatment was aiming at. Also, I was a prime candidate for a
‘wonder’ drug for HER2+ breast cancer – Herceptin. Lots of paperwork had to be
done and she would apply to the Government as it is a frightfully expensive
treatment. She also confirmed that
radiation and a lumpectomy have the same statistical cure rate as mastectomy…
Triple YAY!!
You
can begin chemotherapy next week!
Many people sail through this next stage. I did not. I likened
chemotherapy to an atomic bomb going off within you or like a balloon that is
so overblown it will bust with the next breath, but it hangs on and on!
My
catch-cry has been – I am staying positive. Good for me hey?...A positive
attitude will not change the course of this disease, nor will it cure me. It's
medical science that cures cancer, not attitude. In any case, I just needed
to focus on when this part of the journey – this stage, progression, would be
over.
And it was and everything post
chemotherapy became a walk in the park. Chemotherapy sucks big time, but cancer sucks
even more!
A particularly bad day was 2 weeks after my 1st dose of
chemo.
I knew I would lose my hair and it’s supposed to fall out between the 10th
and 17th day after the 1st chemo, with the most common
being the 14th day. It’s Saturday 24th November and right on
schedule (how did they know?).
Now if you happen to be reading this, just a little hint – Please
refrain from telling a woman ‘it’s only hair, it will grow back”. I doubt
anyone would say that if they experienced running their fingers through their
hair and a handful just comes out and this is after seeing the tangled mess of
long bedroom hair on a pillowcase. Now I have to feel and LOOK sick to get
healthy – go figure.
Lots of tears, lots of phone calls. I needed to hear my children’s
voices. Laura, as always, your sweetness warms me to the core. – Thank God for
Viber – Elizabeth had travelled from New York to Barcelona for the weekend to
meet up and celebrate Alex’s birthday – so that’s only 1 phone call… a few
funny picture sent via Viber made me giggle then and still do now….
It didn’t take me long to work out that Bad
hair days are bad enough. No hair days just plain suck., It also doesn’t help
having a built in wardrobe with mirrored doors at the foot of my bed and to
wake up to. Instantly I catch my reflection and I don't recognize the person
staring back at me. I don't want to be her.
I'll want to be the woman with the hard earned, well fought for head of long
hair.
This is what happened in the course of just 1 week.
Christmas Eve, 2012. A hot, hot day. Very
Emotional and best left in the archives of times forgotten.
In the words of a George Harrison song –
All things must pass
It’s
not always going to be this grey
All things must pass
All things must pass away
None of life’s strings can last
So, I must be on my way
And face another day
All things must pass
All things must pass away
None of life’s strings can last
So, I must be on my way
And face another day
The
best way to deal with sadness is to try and live in the moment. I agree
wholeheartedly that ‘living’ in the past can be depressing and thinking of the
future can make you anxious, so thinking of today is my challenge as 2012
becomes 2013.
Welcome
home Elizabeth. A much needed tonic and the best possible way to begin 2013.
Love,
loves, loved – 3 of 4 of my children under one roof – I felt blessed.
10
days spent just hanging out. Precious time.
Then…………………
A sad farewell – until next time Blossom.
January,
2013 started with joy (under the circumstances) but quickly turned into the
month from hell and almost overtook October, 2012.
The
Triage nurse saw the danger signs immediately and within 15 minutes of arriving
at the hospital Emergency, I was plugged up with drips and heart monitors. I
had Febrile Neutropenia. In other words, my white blood cells were dangerously
low. IV antibiotics to the rescue!...
I
don’t relish telling the ‘dark side’ and TMI can be off putting. Suffice to
say, on Friday 18th January, the hottest day in Sydney’s history,
(48C)and day of the Big Day Out was the worst I felt..EVER!
This
was to be the pattern for the next 2 rounds of Chemo. Yuck!
I
also learnt in January that I am allergic to the sticky bandages they put on
skin. Red rashes and infections were added to the list of unwellness!. I also
became vein-less. Not a single suitable vein could be found on my arms and
feet!. What to do?
Meet
my new friend Porta…. I had a porta-cath inserted.It’s
a small medical appliance that is installed beneath the skin. A catheter
connects the port to a vein. No more digging around my veins thank goodness.
Finally, my last chemo was on 22nd
February and this round was doubled up with my first dose of Herceptin – Almost
6 hours sitting on the chemo lounge .. so much fluid, so much poison, so many steroids
– I felt like I was going to explode!
As
March approached my spirits lifted. Alex came home on Sunday 10th
March- so much joy.
And
No, Alex I am not permanently crying and drying my nose even though it may seem
like that – they are just a few of the side effects – along with almost
permanent heartburn, dead feet and fingers,(neuropathy) throat and ear infections and … and… and
Hey I don't
want to whine but life seems to be a bit of a struggle just now. It's funny
because through all the 6 sessions of Chemo that I've been through, it appears
the most challenging time is right now--the end of Chemo.
You'd think not but
maybe it's the convergence of the mental, emotional, physical challenges of
cancer all coming together in their crab-like way to make life difficult to
cope with. Physically I have been beaten with toxic chemicals; emotionally I'm
dealing with the possibility of recurrence and mentally I’m wacked.
Cancer
makes you tired. Chemo makes you tired. Together they make a tiredness bomb,
only one too tired to go off, so it just sort of lays there, fizzling. There is
no sleep I can get, no nap I can take, no rest I can do that will refresh me.
I am exhausted, all the time. My walks around the block have now
increased to walks around 2, sometimes 3 blocks so I’m trying hard. I also stop
and take photos of things I see en-route.
Even
in that fog, I felt lucky though - 6 weeks of chemo recovery before the next
phase or progression… otherwise known as – Surgery. And boy, did I need this respite even though
I was still receiving my targeted therapy of Herceptin which also has its list
of side effects but nothing will ever
compare to chemo.
Surgery Day.. Wednesday 1st May, 2013. Heart
thumping, knees week, eyes glazed over. In one more sleep I will be rid of the
nasties that invaded my body. At the time it was difficult to see the humour
but in retrospect one thing that now makes me giggle is the hook wire procedure
I had done that morning prior to going into surgery. This
procedure ensures greater accuracy for the lumpectomy. The surgeon uses the
wire as a guide to the tissue that needs to be removed. Where’s the humour? – I
had a hook embedded in my breast and a foot long wire hanging out of my shirt. Kind
of like a fish on a line except my breast certainly was no prize.
Into the OR I go… ‘Ok Rose, start counting
backwards from 10”…. 10, 9, 8, ………
Late afternoon – Its over!. Friendly
smiling faces surround my bed.
There is hardly anything I recall in the
days that follow that stick in my mind. The surgery went brilliantly and even
though all my right lymph nodes were removed, I was determined to move my arm
within hours of surgery and as a prize, the range of movement I now have is
almost 100%. Of course Yoga so soon after surgery, (less than 1 week) certainly
helped, thanks to my awesome yoga instructor, Kath.
Healing begins but not quite yet – another part
of the journey comes first. Another stage, another progression – Radiation.
I begin on
Thursday 30th May, but before then, I meet with Radiation Oncologist
and she explains that on my first appointment I will be getting 6 tattoo markings
so that there is precision each and every time. Then I will be having 33 daily radiation treatments to the
lymph nodes from beneath my collarbone, under the armpit all the way to my
sternum and of course my breast. Thank goodness I have the weekends off!
The radiation to me was a piece of cake. The
treatment for me at least, was about 5 minutes of being nuked and about 15
minutes in total. It doesn’t hurt at all. You may feel a bit tired towards the
end of all of your sessions...for me, it was accumulative. Pretty straight
forward and easy. Until the skin started falling off! So much burning, so so sore and all I wanted to do was cry.
It’s now 3 months post treatment – in a sense
as I still have targeted therapy every 3 weeks and will finish this in January,
2014!.
Life is now different, I am now different and my future is different.
**************************************************
Today, 18th October, 2013 I am
sitting in the air-conditioned XPT bound for Melbourne to see my Laura. We are going to hang out and then take a drive along the Great Ocean Road.
It’s been a grueling 12 months and cancer, as
I’ve come to fast discover, is as much if not more mental as it is physical,
consistently testing the body and the spirit. Survivors maintain their spirit,
but how easy is it to lose that grasp, to let the optimism slip.
You
don't heal, you have a "New Normal."
The
fear and shock I felt did pass. One year ago today, I felt them over power
me. It didn't seem like those feelings would ever go away, as it feels
like every nerve ending in your body is made out of high voltage wire. I
had a full year of IV needles,cutting, burning and poisoning.
I saw the cycle of
the seasons through the windows of the oncology ward.
The
worst part of a cancer diagnosis is the uncertainty, and the worst part of the
uncertainty is at the beginning. Am I facing an illness that can
take my life?. How would I feel, how would
my family and friends will deal with it? l had/have many sleepless nights
in an attempt to try to know what will happen to me - to see into the future.
Only
2 days ago, I attended a Survivor’s Clinic with Mary Mair at the hospital where
the Clinical Physiologist assured us that yes, it is normal to have FCR (Fear
of Cancer Returning) and that most of us will come to a crossroad at this stage
of our journey. That's exactly how I am feeling at the moment. Even though I am still having treatment every 3 weeks with
Herceptin, I am feeling vulnerable. Life will most likely never be as I knew it
before my diagnosis and it won’t be the same as when I was having treatment as
you are so heavily focused on the next appointment, the next dose and the next
bout of feeling unwell.
So what strategies will I put into place? What will my
toolbox hold?
I’m not sure and but at some point though, I
know I will have to come to terms with the fact that knowing the future is
impossible, and living with the day I have is all I can do. I strive to
find peace in that.
The
land is scarred but the soul survives.
My
medical team including the wonderful chemo nurses, staff, breast care nurses,
Lorraine and Cole and volunteers at Concord Hospital and Royal Prince Alfred
Hospital have been nothing short of amazing. These are the true heroes and to
them I am forever indebted.
Dr
Laurence Gluch - Specialist Breast Surgeon
Dr
Annabel Goodwin - Medical Oncologist & Geneticist
Dr Susan Carroll – Radiation Oncologist
Professor Mathew Peters - Head of Thoracic and Respiratory Medicine (He has been my Wonderwall.... and saw to it that I dodged many major bullets)
Professor Mathew Peters - Head of Thoracic and Respiratory Medicine (He has been my Wonderwall.... and saw to it that I dodged many major bullets)
My
children, Elizabeth, Laura, Michael and Alex have always been and will always
continue to be my inspiration. Thank you for being patient when my chemo-brain
set in. Lucy and Mary have been my guardian angels. I can’t thank them enough
for their support and love. And to my
family and friends that have been there, thank you too. The surprise visits to
the hospital and to home have been so appreciated. You know who you are!
PS. I admire all the young kids who put those crazy, and sometimes unflattering, shots of themselves on Facebook. The silly, zany ones which show their imperfect teeth and great senses of humour. They don't mind showing the world how they really appear, and I always have. The desire to appear perfect in a photo is a hard one to break, having been drummed into us repeatedly beginning with kindergarten school picture day - but today's kids break the rule routinely.
Still,
I don't think I'll ever be comfortable with my image.
With my friend Sam xx..
She inspires me.
And Luca.... thank you for not giving up on me... I know I am not the woman you first met those years ago but you see me through the soul and not through your eyes... a profound love... xxx
