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”

Advertisements

#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.

 

Cancerversaries

So as I mentioned in my previous blog, this month is a month of anniversaries or perhaps more accurately, cancerversaries. Two years since my diagnosis, two years since my surgery and more significantly – two years of being cancer free.

And since we’re making note of significant dates… this week concluded my 3 month check-ups with the Dent Doctor!

Which heralds a new chapter in life post breast cancer… **cue the scary music**
”THE SIX MONTH CHECK UP!”

Well, actually there is no real significant or physically difference to the previous chapter **cue the scary music**
“THE THREE MONTH CHECK UP”.

For most people, this is viewed as a VERY good thing, and let’s face it, there really is no logical reason to look at it in any other way –
• I only have to stress about having bloods taken every six months
• I only have to go to the Cancer Centre every six months
• I only have to see the Dent Doctor every six months for my examinations
• It means that I have been cancer free for TWO YEARS
• It means well, I have been CANCER FREE FOR TWO YEARS!

END OF STORY – Right?

But in fear of sounding like a serious Debbie Downer, there is also the other side of the coin –
• My bloods are only being monitored twice a year
• I only get to see the Dent Doctor for a full examination twice a year
• A LOT of scary things can happen in my body without me or anyone else knowing, in that time

So, I thought if this was going to be my last examination before being set out to fend for myself for the next six months, I was going to make the most of it!

I mentioned some lower back pain that I had been experiencing, not particularly unusual for me, I have always had a weak lower back, hence my years and years of pilates! But cancer has a way of making you doubt everything you have ever known about your body.

I also mentioned that I had made a chiropractor appointment for the next day as I had been experiencing some (more than normal) tightness between my shoulder blades, which turned into a bit of a spasm in my chest when I lifted my arm to get a mug out of the cupboard that morning.

I expected him to laugh and say that I was clearly pushing for another excuse for a massage! But he listened carefully to my lungs and breathing and did a thorough check up of my lymph nodes and abdomen. He concluded that everything looked in order and agreed with me that it was probably muscular. And while I was getting dressed, planning my next massage, he picked up his phone and booked an ECG.

HUH hang on a minute?

What happened to the massage prescription?

He said he honestly did NOT think it wasn’t anything to be worried about, but because the pain was in the vicinity of some very important organs such as my heart and lungs, he felt it would be best to be safe and rule out pulmonary embolisms and the like.

GULP

OK

GOOD IDEA

So there I lay at the Cancer Centre while the sister hooked me up with some sticky patches to some very scary looking electrical thingies!

Long story short: I am very happy to report that all was well with my heart and lungs! AND the chiropractor sorted out the spasm the very next day!

But to be honest, the whole experience kinda rattled me a little…..six months sure feels like a VERY long time!

Six months 1

Cancerversary 2Cancerversary1

Cancerversary 3