#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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Familiar visits

So today I found myself in a familiar place, doing familiar things with familiar people. You would think that all that familiar-ness would bring some sort of comfort, a sense of security even. But some days there are exceptions. And today highlighted one of those exceptions.

But hang on, I’m getting a little ahead of myself here. Today’s trip actually had its beginnings last week with the first of my six monthly visits with the Dent Doctor.

I have always thought that “a visit” is such an odd term to describe any sojourn to a doctor’s office. After all, “a visit” to me conjures up visions of tea and scones, chats about holidays, curve T.V’s (it’s a long story!) and having good laughs with familiar people in familiar settings. Bizarrely enough, that WAS a pretty good description of last week’s visit with the Dent doctor! Ok, so maybe it was a shared cup of hot chocolate with Pete in the waiting room, and maybe there were no actual scones and just maybe it included me having to removing my shirt at one point… But the rest was particularly spot on – including the discussion about the curve TV (long story!) 🙂

So how was I doing six months after my last visit to the Cancer centre?

Very well apparently!

My bloods looked good and nothing sinister appeared to be lurking anywhere obvious. And despite appearing to be particularly brave about this visit, the audible expelling of a breath I hadn’t even realised I had been holding, totally gave me away!

So with everything looking good on the surface the Dent Doctor wanted to make sure things were looking just as good on the inside too.

Which brings this particular story back to today… Sitting in a familiar place, seeing familiar faces and tasting the familiar flavour of the pre-CT-scan orange “jungle juice”.

What was also pretty familiar was the all too familiar dread of having to wait for results.

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I wanted to get that sense of peace and even boredom that comes with long familiarity. Debbie Reynolds
“The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown”
― H.P. Lovecraft, Supernatural Horror in Literature

 

“I don’t desire a change of scenery or exotic experiences. My heart yearns for familiarity, stability, the comfort of home — and my sanity depends on it.”
― Dean Koontz

 

“The world doesn’t change in front of your eyes, it changes behind your back.”
― Terry Hayes, I Am Pilgrim

Thigh rubs

So this morning I set off on my now VERY familiar walking trail, lamenting the whole way just how much I detest the way my thighs rub together when I move, and just how much I hate it that my tummy and bum jiggle with every step. Cursing my non-existent metabolism and just generally grumbling about all menopausal-body-related suckiness!!

I have been desperately trying to follow a healthy eating plan for two months (almost three!) now and all I seem to have lost in all that time is my will to live!

So there I was, me and my thighs, marching along and YIP – feeling pretty sorry for ourselves. Willing the fat to friction itself off to a timely death and drop from my legs with every step, actually picturing it sizzling behind me on the hot pavement – I’m all into visualisations at the moment! When about ¾ of the way home I saw an old gentleman walking very slowly towards me, back bowed and feet shuffling along the uneven concrete. I moved to the left to allow him to pass and traverse the path of least resistance (I tell you I know every nook and cranny of this route!). I smiled politely at him as I breezed past and almost stopped in my tracks when I heard his softly spoken words, they certainly shut up the self-loathing conversation going on in my head … “ah, to have those legs again, enjoy them my dear”.

So yes, THANK YOU Universe for the slap upside the head! #get over yourself # be grateful #enjoy every moment # rubbing thighs keep you warm in winter

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“If you had a person in your life treating you the way you treat yourself, you would have gotten rid of them a long time ago…” Cheri Huber,

 

“The way you think about yourself determines your reality. You are not being hurt by the way people think about you. Many of those people are a reflection of how you think about yourself.”
― Shannon L. Alder

 

“Fat’ is usually the first insult a girl throws at another girl when she wants to hurt her.

I mean, is ‘fat’ really the worst thing a human being can be? Is ‘fat’ worse than ‘vindictive’, ‘jealous’, ‘shallow’, ‘vain’, ‘boring’ or ‘cruel’? Not to me; but then, you might retort, what do I know about the pressure to be skinny? I’m not in the business of being judged on my looks, what with being a writer and earning my living by using my brain…

I went to the British Book Awards that evening. After the award ceremony I bumped into a woman I hadn’t seen for nearly three years. The first thing she said to me? ‘You’ve lost a lot of weight since the last time I saw you!’

‘Well,’ I said, slightly nonplussed, ‘the last time you saw me I’d just had a baby.’

What I felt like saying was, ‘I’ve produced my third child and my sixth novel since I last saw you. Aren’t either of those things more important, more interesting, than my size?’ But no – my waist looked smaller! Forget the kid and the book: finally, something to celebrate!

I’ve got two daughters who will have to make their way in this skinny-obsessed world, and it worries me, because I don’t want them to be empty-headed, self-obsessed, emaciated clones; I’d rather they were independent, interesting, idealistic, kind, opinionated, original, funny – a thousand things, before ‘thin’. And frankly, I’d rather they didn’t give a gust of stinking chihuahua flatulence whether the woman standing next to them has fleshier knees than they do. Let my girls be Hermiones, rather than Pansy Parkinsons.”
― J.K. Rowling