Goose bumps and Rachel Platten

There are moments in life that are goose bump moments.  I’m sure you know the ones that I mean: you listen to a song, or a story, or read a quote 🙂 or even watch a movie and in that particular moment of your life, it appears that those words were meant just for you.

Well, Friday morning culminated in a string of goose bump moments for me.

But like all good goose bump moments, there is a back story.  And this back story started a month or so ago when I was contacted by a manager of one of our city’s Malls.  She wanted to host a breast cancer survivor’s breakfast during the month of October and needed help getting in touch with a few survivors, around 30 in fact!  Well, our little group of volunteers put our heads together and started contacting a number of patients we had visited in hospital over the last year or two in order to invite them to a free breakfast, just to celebrate being a survivor 🙂

So on Friday morning we arrived at the designated coffee shop and thus began the most incredible morning of goose bump moments for me.  As the ladies started walking through the door I soon began to realise that this little gathering was not something particularly “little” for many of these women.  I had been so busy arranging, phoning and confirming numbers that I hadn’t actually stopped to consider the significance of a morning like this.  One lady confessed that this was her first public acknowledgement of her diagnosis , five years after her surgery and treatment!  And I figured out quite quickly that apparently I was not the only one who has a fear of acknowledging my survivorship for fear of “jinxing the whole thing” – a fact that felt particularly good to share and even giggle (nervously) about!

So over the next two hours personal testimonies were shared over cups of coffee and yummy breakfasts. What struck me was the particular dynamics of those 30 + survivors: all representatives of various cultures, ages, professions and social standing.  And the differences didn’t stop there, there were ladies at various stages of treatment too – some only a few months post surgery, some still having chemo, some still completing radiation, some many years down the line, and one starting the whole process again after another diagnosis.  But of far more importance were the similarities they shared: these were mothers, wives, sisters, grandmothers, aunts and girlfriends who realised that they were most certainly not alone and that they each had a unique story to tell.

Looking around that room I recognised many faces.  Women I had personally visited in hospital, (and despite the initial recognition), I was completely astounded by their transformation.  When I had last seen these women, a day or two post surgery, they were facing some of their most dark and vulnerable days.  Still trying to catch up with the reality and enormity of the situation they found themselves in – waiting fearfully for test results and treatment plans.  However, in this room, in this particular place in time, most of these very same women were laughing, sharing stories, showing off eyebrow tattoos and the like, and dispensing advice to the “new recruits”.  And I can almost guarantee that a lot more healing was done, all in the most humbling and empowering way.

Real goose bump stuff!

So while driving home, listening to the radio and reflecting on the morning…….another goose bump moment (and my only quote for today), thanks to Rachel Platten……..

“Hands, put your empty hands in mine
And scars—show me all the scars you hide
And hey, if your wings are broken
Please take mine so yours can open, too
‘Cause I’m gonna stand by you

Oh, tears make kaleidoscopes in your eyes
And hurt, I know you’re hurting, but so am I
And, love, if your wings are broken
Borrow mine ’til yours can open, too
‘Cause I’m gonna stand by you

Even if we’re breaking down, we can find a way to break through
Even if we can’t find heaven, I’ll walk through Hell with you
Love, you’re not alone, ’cause I’m gonna stand by you
Even if we can’t find heaven, I’m gonna stand by you
Even if we can’t find heaven, I’ll walk through Hell with you
Love, you’re not alone, ’cause I’m gonna stand by you

Yeah, you’re all I never knew I needed
And the heart—sometimes it’s unclear why it’s beating
And, love, if your wings are broken
We can brave through those emotions, too
‘Cause I’m gonna stand by you

Oh, truth—I guess truth is what you believe in
And faith—I think faith is having a reason
And I know now, love, if your wings are broken
Borrow mine ’til yours can open, too
‘Cause I’m gonna stand by you

Even if we’re breaking down, we can find a way to break through
Even if we can’t find heaven, I’ll walk through Hell with you
Love, you’re not alone, ’cause I’m gonna stand by you
Even if we can’t find heaven, I’m gonna stand by you
Even if we can’t find heaven, I’ll walk through Hell with you
Love, you’re not alone, ’cause I’m gonna stand by you

I’ll be your eyes ’til yours can shine
And I’ll be your arms, I’ll be your steady satellite
And when you can’t rise, well, I’ll crawl with you on hands and knees
‘Cause I… I’m gonna stand by you

Even if we’re breaking down, we can find a way to break through, come on
Even if we can’t find heaven, I’ll walk through Hell with you
Love, you’re not alone, ’cause I’m gonna stand by you
Even if we can’t find heaven, I’m gonna stand by you
Even if we can’t find heaven, I’ll walk through Hell with you
Love, you’re not alone, ’cause I’m gonna stand by you
Love, you’re not alone
Oh, I’m gonna stand by you
Even if we can’t find heaven, heaven, heaven
Yeah, I’m gonna stand by you”

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Cancerversary x4

Four years ago today, life as I knew it, stopped.

Well that sounds a trifle dramatic, you may say!

But looking back to this day four years ago, that’s exactly how it was for me.   Plans for the future, both long term and short, simply stopped.

I remember the days following surgery of being in a fog of sorts, quite possibly drug induced 🙂 Life existed in a simple, sterile vacuum and revolved around medication times, Pete’s visits, emptying of drains, Pete’s visits, waiting for the results of the lymph node biopsy, dreading dressing changes and Pete’s visits.

Life outside my hospital bed appeared to be a foreign concept.  Logically I understood that people were going about their lives as they had the day before and the days before that.  But for me, lying in that hospital bed, I could not picture my life in its previous context .  I suppose realistically it’s like suffering any kind of significant loss or grief… it seemed unfathomable that life outside the situation I found myself in, could continue.

But it does, and it did, and I had the pain and scars to prove it.

So this morning waking up with the dawn of another Cancerversary, I wanted life again to just stop.

Just for a moment.

To completely take in the enormity of the day, the enormity of what exactly four years of life really means.  Especially for those who I have known that have not been as fortunate, or for those still fighting for another day, and especially in light of last week’s  school bus tragedy.  For all the noise and the busyness of life to stop and to simply remember to be grateful.

#hopeandlove

So last week there was some not so great news for my friend Fynn.

I have not posted much about Fynn for a while because in the same way I battle to talk about being a survivor, I honestly felt that I didn’t want to jinx anything for this incredible young man.  I have closely read his mom’s posts and observed photos of a family cautiously navigating their new life post treatment. It has been heart warming to “see” Fynn blossom under their love and with his unstoppable determination.

But now my friend Fynn and his family need all the strength, love, prayers and healing thoughts sent their way as they embark on another scary chapter in their lives

This is the update from his mom.  Please read it and then keep them all in your hearts.

20 July 2017

And just like that everything changes….again. I thought I would follow Brad Abbott‘s post from this morning up with something a bit softer.

Facts first. Fynn has a relapse tumour, 3×3 cm growing in the original tumour cavity. It is right at the back of his brain, far away from the REALLY important bits, like the brain stem. It is well defined, and looks to be easily removable, with low risk. Well, you know, when the brain is involved, as low risk as can be! Fynn is clinically well and has no symptoms from this tumour. It was found 2 weeks ago on a routine scan, his first 6 month one. To say it took us all by surprise is not a lie. I include the oncologist in this, he was shocked and lost for words. Typically Medulloblastoma relapses in the first 24 months, give or take, post diagnosis. For it to relapse at 4+ years post is unusual. Statistics don’t matter, though,and right now we have no choice but to board the bus to the circus with some really scary clowns, yep those clown doctors included, and buckle up for the ride.

First step is surgery. Docs believe they can remove the complete tumour. Next step – testing for occult cells in CSF, the fluid in the brain and spinal canal. There is no obvious spread seen on the scan, but those sucker cells like to fly incognito. Then we make plans from there. Relapse medullo always comes with a terminal tag, but this is not inevitable. We have a situation that needs to be dealt with now, and we have to make some decisions about further chemo and radiation, or other, and Fynn still has a lot of time here to cause chaos. Any further treatment decisions are not on the table right now.

On Monday we will go up to Starship, the NZ Medical Mothership of all things kid related. We have the surgery. We were relieved to hear they have set aside about 3 hours for this, just felt better to hear than about 9 hours, which extended into more. Expected stay in hospital 3-5 days, then next steps. So that is clinical facts out the way. Now life facts.

We found out 2 weeks ago, but elected not to tell Fynn and Kady. This seems so very unfair. Just as Fynn was starting to fit in and find his place in the world again, make some friends, have genuine fun, and be truly happy again…THIS. So we made the call to have some fun. The pics are a teeny snapshot of that. I took a week off from work and we packed it in, luckily school holidays coincided. Comments on photos. I have been back at work this week, and it has been good for me. When I am busy my mind cannot go to dark places. We have raged and cried, cried and raged, catastrophised, planned, drunk a lot of coffee, and now we choose HOPE.

We choose to face death head on and dare to defy it. We have discussed this openly with Fynn and Kady. The reality is that death comes for us all. In this situation we get a heads up, and NO, it is not as we planned, and who knows how it turns out, but we get a gift, a wake up, a call to make the most of it. The good, the bad, the plain rotten, the beautiful…you get the idea. Until this moment I have not truly known how much I have changed and grown over the last 4 years. Strangely, I appreciate the change. Hell yes, I would not have chosen this path, but, it has been given to us and we have no choice but to own it, and to have no regrets. For the first time I get to truly own the tag, Mumma Bear, that is bandied about a lot on kid cancer wards. Up until now I did not really get that. Yes, we have had time to process this news. No, it is not news we wanted.

Fact, we have got this, whatever it is. Today I have read countless messages and comments and emails from all our dear family, whanau, friends, communities, etc from around the world. I feel so loved and supported. In know a lot of you may be confused by this post. Maybe you expect me to be more sad, or down. I will remind you of my deep and dark humour on which I rely for carry me through my days.

Right now, we are choosing HOPE and LOVE. We will love while we can and make choices and plans with hope as our star.

 

NYE 2016

So another year is in the dying stages of its current revolution around the sun, and the new year is slowly emerging, fresh and promising on the horizon.  And so it is not uncommon for many of us to begin reflecting on what was, and most often, of what wasn’t, the last 365 days of our lives.

For some, it appears, this year cannot end soon enough. And from posts I have read on Facebook this week, it appears to be the general consensus of many of my FB friends.  Understandably so.

Some have lost a spouse or a parent, a cherished pet, nursed sick children, battled disease both physically and mentally, had career crises or fought demons this year that others knew nothing about.

And seriously 2016, George Michael???!!!!

So while reading through all the posts of facebookers throwing shade at the year that was, I am once again reminded of one simple word, “perspective”.

Believe me, I know just how hard it can be to find something to be grateful for.  Often it can be downright impossible.  Sometimes it’s the realization that no matter how bad, things actually could be worse!  And sometimes it’s simply acknowledging the fact that you’re around to see in another year.

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Simply Grateful

So yesterday I was officially declared “cancer free” for the 3rd year in a row by the Dent Doctor.  ***smiley face, smiley face, smiley face, and then some more smiley faces***

And just like that, I have another significant cancerversary under my (ever increasing!) belt.

I have been inundated over the last two months with Facebook memories – aren’t they a wonderful invention – a big round of applause to the Facebook developers – some fun and not so fun trips down the memory highway!

Well, September and October brought a string of pics and posts about surgeries and chemo starts, and for most part they were quite a shock.  And not for the reasons you may think. I actually wasn’t (that) traumatised by the memories they invoked.  Nope.  Mostly, I was completely shocked by the fact that both Pete and I, had by some strange turn of events, forgotten the actual second, minute and even more bizarrely, the day of each one of those events.  Something I had previously assumed would be burnt into our psyches FOREVER!

So therefore yesterday’s routine 6th month check up to the Dent Doc should equally have been handled with exactly the same attention to detail.   (After all there wasn’t anything I was particularly concerned about). And it was, for the most part.  Right up until I went for my bloods on Tuesday, and until I went to sleep on Wednesday night, and until I walked into the cancer centre, and until I waited while he took an emergency call regarding a patient receiving palliative care, or while I waited for him to announce the results of his examination and my blood tests.  Yes, up until then, I was good…

And it was all good!  ***smiley face, smiley face and then some more smiley faces***

So this morning I woke up with a renewed understanding of one simple word….grateful.

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Bionic Boobs: The Advantages

So you would think that there are not many advantages to having bionic boobs, right?

Well, you would be wrong: No worrying about saggy boobs, even if I lived to be 100!  There’s also the fact that I can flex them like a professional muscle man… umm person, thanks to them lying directly underneath my pecs… and then there’s …..umm, well okay, that’s pretty much all I can think of right now…

So despite all these (two) cool benefits, the one thing I thought would really work for me  – seeing as at the moment  I wasn’t planning a professional muscle building career or perhaps living to see 100 – was the fact that 2 x bionic boobs meant NO mammograms…. for life… like never, ever!   A serious bonus all you ladies having your regular mammograms would attest to – am I right???

Weeeell apparently not, as I find myself booked in for… you guessed it… a mammogram next week!

The last time I saw the Dent Doc, he wanted me to have a CT scan to check that there were not tumours lurking in any organs.  And I can say, very happily, that block was ticked!  He also wanted me to have a specific scan concentrating only on my chest area to make sure that there were no signs of a recurrence of the cancer.  Now you may ask why on earth would I ever need to worry about that –I don’t have any “real” boobs after all.  Well, to get technical for a moment, apparently no matter how carefully my surgeon may have been at removing ALL of my breast tissue, there would still undoubtedly be remnants left somewhere, which in turn equals possible sites for a recurrence. He explained to me that all the research he had done indicated that yearly chest MRI scans were the best way of detecting this possibility.

So long story short:  My medical aid will not approve a chest MRI unless the results of a mammogram and ultra sound are inconclusive.   I actually laughed at the Medical aid rep who told me that.  Like duh lady…I have no boobs, so how would you propose I squash these bionic puppies flat in a mammogram thingy machine in order to possibly see anything of significance, without doing serious damage!

Well apparently the joke’s on me.

Dr B says that they will be absolutely fine, no chance of rupturing.  She said she’s been assured that you could drive over them and they would not spring a leak!  I’m a bit nervous of Pete finding that one out as I’m sure he would be tempted to try!

So another positive to add to the growing list of bionic boob advantages:  if the end of the world comes, apparently cockroaches would not be the only things to survive!

And now that I’ve been re-assured of not popping these suckers, I worry more about the discomfort level of having pec muscles squished in the mammogram thingy machine …oh yes, and from the sounds of it, being responsible for them actually damaging the mammogram thingy machine!

EiSH!

“My breasts are so low now I can have a mammogram and a pedicure at the same time”. Joan Rivers

“On a personal note: I have contracted an outstanding case of breast cancer, from which I intend to recover. I don’t need get-well cards, but I would like the beloved women readers to do something for me: Go. Get. The. Damn. Mammogram. Done.” Molly Ivins

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