Tag Archives: treatment

Transplant Athlete High Performance Camp – the inspiration, hurt & fun….

21 Mar

Picture this – a sweltering Gold Coast afternoon, 25 individuals who have been to the brink and not only recovered – but are thriving examples of what organ and tissue donation, and a health focused life can be.

Last weekend, a very special event occurred and I was lucky enough to be part of it.  As a first timer, my experience was no doubt different to those who have been there before, but I want to share with you some of the highlights.

In a strange twist of fate, I ended up emceeing the media conference and launch of the 2018 Australian Transplant Games, at the Super Sports Centre, Runaway Bay. This launch also marked the start of our 3-day High Performance Training Camp.  The Queensland Government is a major supporter of the Transplant Games, to be held here on the Gold Coast September 30-October 6.  Health Minister, The Hon. Dr Steven Miles spoke of how this event would increase awareness and hopefully an upward swing in organ and tissue donation.

Following the official proceedings, we split into our respective sports and hit the track or pool.  That first session under the guidance of Coach Stephen Howell was the most alive I have felt in years.  Although I’ve been back in the water for a while, the challenge and absolute thrill of having a go really got my heart pumping! I sucked in some big breaths with each lap and as I smashed the wall at either end of the pool, I looked around and thought about my fellow transplant athletes.  While my body and its organs, is now running on someone else’s stem cells, some of them had someone else’s heart or lungs helping them reach the end of the pool.  Whoa…….   I said some silent, but powerful thanks to our donors, their families and our medical teams.  The emotions were running high, but while there was a little rest between sets, there wasn’t too much time to lose focus.  While Steve pushed us hard, he also had us laughing.  Like when he nicknamed young Logan ‘donkey’, as a term of endearment. Steve explained that when he saw real potential in a swimmer he’d ride them like the last donkey in town.  Nuff said.

We enjoyed team meals in the dining hall, surrounded by international athletes in town preparing for the upcoming Commonwealth Games (including the Indian basketballers like ‘One in a Billion’ Satnam Singh! who graciously posed for a pic and hilariously high-fived/low-fived me when we passed between our rooms and training sessions:-).  The vibe was sensational.  The conversation covered everything from heartbreaking transplant wait-list experiences, to inspirational tales of recovery and determination to really live (like they say, ‘no-one lives like the dying’).  I wished I could bottle this.  Not just for my darker moments, but for anyone who might find themselves needing a little light at the end of the proverbial tunnel.

My ‘body scans’ went from analysing the pain, its severity and what medication I could take to try and control it, to how my muscles were feeling having worked harder than they had in a long, long time. I doubted whether I could keep up, but despite the hurt and exhaustion, was set on living up to the hashtag I started using during my transplant #stillkickin. In this case, I literally was still kicking!!

We were imbued with knowledge from experts during Strength and Conditioning (Adsy Gordon), Nutrition (Travis Ronaldson) and Sports Psychology (Craig Pearman) sessions. A lot of us struggle with fatigue just getting through the day, so this lecture format side of things was at times, quite tiring.  The information though – so beneficial.

A key point of discussion was Internal and External motivation.  A room full of people who have survived, and are thriving after transplant, perhaps don’t need to be taught about internal motivation.  Without it, we all may have rolled over, given up, quit.  It’s that beautiful combination of internal and external motivation that has created success.  I heard so many stories of athletes not wanting to let their family, donor family or Dr’s down.  It’s a powerful mix.

Speaking of power…we were gifted a very special insight into world class competitive swimming, with visionary of the sport, Bill Sweetenham.  As a mad-keen young swimmer I watched some of his pupils including Tracey Wickham, power to glory on the Olympic stage.  Bill’s name is synonymous with some of the most successful international teams in history.  I was shaking like a leaf when I entered the ‘Elite Room’ and reached out to shake the hand of greatness.  There he sat, in an empty room, just his big hat and dark sunnies and a bucketload of stories to share. I could listen for the rest of my days, but we soon found our way to the pool deck.  Holy hell.  I was so bloody nervous to strip down to my togs and hop in, I had to go and tell him I was terrified!  All of a sudden my head had forgotten how to swim.  As Bill took a seat laneside, we all slowly settled into our groove.  Before too long, he had us all lined up, hanging onto the side of the pool listening intently to little tweaks we could each make.  Teenage transplant recipient Claudia was given the somewhat unenviable task of jumping out to demonstrate getting full reach from a stroke.  Whilst manipulating body position in that way, in front of all of us may have been daunting – Claude handled it like a pro, and I winked at her Mum Anna saying “she’ll never forget this.”  None of us will.

Bill generously shared more stories with us (as we recovered from a session in the ice baths – another first for some of us!), he detailed the importance of balance and fun.  What a way to cap off an unbelievable afternoon!

Some participants opted to sleep in on the final morning (totally cool given the workload and long days), while others managed a final hit out.  I’m happy to say that although my body was screaming with pain – it was great pain – and I was in the water by 6 am.  The mental chatter was strong, but there was no way I was missing this last opportunity.  Apart from Coach Stephen giving us drills we could test, then take away, he’d also built enough confidence in our group to critique each other.  The kindness and positive feedback was palpable.  How all of us will grow as a result.  I am so excited for the Games!

I grew up swimming, enjoyed training and loved to compete. I can’t say I ever had fun in the water though.  That said, it is my ‘happy place’. I can float on my back for hours.  Having been hooked up to machines to keep me alive, I revel in the freedom. The cold rush as I dive in, the swoosh of the water passing my ears, the exhilaration I feel powering along the black line and the absolutely life-affirming satisfaction at hitting the wall.  Fun though?  Nope, not really.  Until the other day.  The last few minutes of our swim session, Coach Steve suggested a Michael Phelps drill for vertical kick training (you’ve gotta watch this!).  Ahhhh, yeah, right.  Well, getting out into the middle of a lane, dropping till your feet are flat on the bottom, then squatting, pushing up, streamlining and butterfly kicking up out of the water like a rocket is unreal!  Such an incredible feeling.  And yes, I had FUN!

The reality of organ and tissue donation is very simple – people that were once terminally ill, are now here.

CEO of Transplant Australia, Chris Thomas provided this example at the launch of the Games and start of the High Performance Camp, going around the group asking ‘years since transplant?’ In a staggering display, we added up the numbers and we, those of us gathered who had been granted this precious gift, have so far enjoyed an additional 266 years of life.  That is a whole lotta birthdays, anniversaries, children and other milestones that may not have been.

Although the post-transplant life is very much filled with medical appointments, medication and a multitude of side-effects, it is life.  Life that, if not for our donors, we could not sustain.  I feel strongly it is my duty to honour my anonymous donor and my team, by looking after this body post-transplant, and live the best life I possibly can.  Thank you, may never be enough.

I encourage anyone reading this, who hasn’t had the conversation about organ and tissue donation with their loved ones, to please do so.  Your decision can and will save lives.

Make the decision count – donatelife.gov.au

 

 

Huge thanks to Nick Farley for some of the above images.  Check out the rest of the HPC via his Insta farleyphotographix

 

 

 

 

Stormy Skies

10 Apr

It’s one of those stormy and unpredictable nights on the Gold Coast, eerie almost.  Perhaps a reflection of my life at the moment as I consider that just as quickly as they roll in, storms fizzle out.  Maybe the thunder and lightning are even Mother Nature’s way of reminding me that powerful, violent fury can and does end, often leaving a beautiful, fresh glow.

I do hope that’s the case with my current situation.

I must point out that I’m not caught up in a terrible bind, I’m just playing with words.  However I do feel like I’ve been at the centre of my own ‘storm’ for a while now and quite frankly, I’d like it to pass.

In trying to bring about an end to a sort of stalemate with my marriage, I’ve decided to collect my two gorgeous girls and take up a room at my Mum’s place (okay – a room & bathroom + parts of her sewing room, kitchen, living, outside area….)  Paul will move elsewhere and we will rent out the apartment for the time being.

Those of you who know me know how ‘house proud’ I am.  More than that though, I truly adore living in this apartment. It’s in a great area, safe, quiet, in an amazing building, with brilliant design.  It’s also a tad luxurious.  This place is special for other reasons too.  I think of it as kind of like an elegant NYC Brownstone – but white!  The entry is through a glamorous lobby and we were lucky enough to secure one of the terrace apartments on the ground floor – so not only is there plenty of room for the girls, but there’s also direct street access.  I can walk across the road to acres of parkland, the riverfront and the ‘magical tree’ I’m so drawn to, or pop over to the banks of the private lake.  I also have a few neighbours I count as friends, who have become a big part of my life.  It’s stunning in design, yet understated in its feel.  The kitchen is just perfect for entertaining (which again, if you know me – you’ll know I love nothing more than having a house full of people to feed and clink glasses with), the bathrooms are fully tiled with beautiful travertine and I’ve decorated accordingly – continuing the earthiness with timber, leather and steel.  We’ve added a really nice black granite circle of life water feature and the timber arbour is playing host to a very healthy wisteria.  I am yet to see it flower in full bloom.

Elegant.  Sophisticated.  Home.

For the eight and-a-half months I was in Brisbane last year, I dreamed about this place. Every single day I willed myself stronger so I could return home.  I can ‘make home’ anywhere, really.  But this little apartment, well, it just feels good.  I love everything about it.  It’s the only home little Phoenix has known, where Lila loves to bail up the delivery guys and where my darling Ch’i took her final breath.

As much as I love this place, I’m not too naive to pin all my hopes on returning. I of course hope I will, but as we all know – a lot can happen in a short space of time.  We’ll just have to wait and see.

There’s heartache and disbelief to deal with first.  The reality has certainly been overwhelming these last few days, as I’ve moved some things to Mum’s, sold others and sent the rest to storage.

The emotions are running high.  It’s devastating to be honest – but I need to try and keep everything in check.  Seriously, the drama of three lots of cancer plus a bone marrow transplant isn’t enough? The destruction of my career, my marriage…and now this.  I’ve had a gut full to be honest.  What I could really do with is a break! This period I am certain, is meant to be THE most amazing, happy time of my life – as I should be celebrating the fact that I HAVE A LIFE! Courtesy of a lot of hard work by a great many people and of course, the generosity of my incredible donor. Instead, there’s more major upheaval as Paul leaves and blames the ‘cancer bubble’.

Well, fuck you cancer.  I don’t need to be around those who can’t deal with you.

Fuck you cancer, I am a grateful soul.

FUCK you cancer, I wake up happy.

 

Back in Black

5 Apr

Not in an Amy Winehouse kinda way..

But….Congratulations dear Donor, Dr’s and nurses – the numbers are good.

For the first time in over two years, my pathology report is not red line after red line.  My all important counts have recovered to the point that I’m in the ‘normal’ or ‘safe’ range for most readings.  This is a huge improvement and actually came as quite a shock because I’d been feeling so dreadful in the lead-up to today.

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Although I didn’t get to see Dr Kennedy today – I’m certain he would have used the words becoming ‘stable’ to describe these latest results.  Nurse Kylie and I think so anyway!

5 C

30 May

I could write a book on this experience (and one day I just might), for now – I’m exhausted, but needing to try and ‘collate’ the four and-a-half months I’ve had in Ward 5C getting ready for and having my unrelated anonymous donor Bone Marrow Transplant.

The chemotherapy regime I’ve been on this time in preparation for transplant is FLAG: FLudarabine, High-dose Cytarabine (Ara-C) and Granulocyte colony-stimulating factor (G-CSF).

There’s been some horrible experiences and some hilarious.

I’ve had fluid on my lungs, pneumonia, and felt like I was drowning in my own body.  I’ve needed breathing assistance, suffered the humiliation of incontinence and worn an adult nappy.  I was moved to ‘Room 1’ which is pretty much the last stop before people check out – permanently.  Those nights the ICU Doctors came to see me.  I didn’t want to be moved to ICU, I felt safe in 5C, they were experts at looking after transplant patients.  It was certainly a challenging time.

There have been no less than five occasions where one of my treating team has stood at the side of my bed and delicately explained that I ‘might not make it through the next 24-hours’, so if I needed to say anything important, now was the time to have those conversations.  Thankfully, I’d prepared Mum and Paul for this likelihood and they were comfortably aware of my ‘final wishes’.

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Some of the drugs made me hallucinate. I was watching lavender grow from the ceiling and seeing faces in the bare white painted walls. I was talking to people who weren’t there. I was texting Mum saying I know she’s in the corridor outside taking about me and to just get her gown and mask on and come in.  Mum was at work – on the Gold Coast!

Who knows what I was saying to the Drs and nurses during this time.

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I did have a bit of respite a couple of times, staying in a unit nearby where I got to sleep uninterrupted (no obs or beeping machines), and eat what I wanted – which unlinke my pre-chemo diet was really unhealthy – chips, pre-prepared frozen meals etc.

Before too long though I was headed back to hospital.  A few times I woke in the early hours with spontaneous vomiting and a dangerously high fever.  Going through the Emergency Department was necessary – but so exhausting.  They had to take blood from my line, as well as two peripheral sites which means more needle sticks.  I’m trying to avoid any unecessary processes on my arms, as I’ve had lymph nodes removed from both sides as part of my breast cancer treatment and am therefore at greater risk of developing lymphodema – an irreversible, painful swelling of the arm.  So, I have my blood pressure taken on my leg and try to avoid those extra needle sticks when I can.

Not a fan of confrontation, I struggled with some of the side effects of certain medication.  Some made me quite agitated and I found myself fighting with people. Most of the time I caught myself and was able to stop, but there was one particularly awful exchange with my beautiful nurse Lettie.  We’re friends now, but when she found me crawling on the floor looking under the bed for my little dogs Ch’i and Lila things turned ugly very quickly.  I was crazy out of my mind on Ketamine (I can not believe people take this as a ‘party drug’!) and didn’t like her telling me to go back to bed, that she’d spoken to Paul and the girls were okay.  It was a little white lie that didn’t work.  I got right up in her face and told her as much.  Paul almost got a phone call at 3am!  It took the amazing Pete to resolve the impasse.  Boy was I pissed though.

Then there was the ‘incident’ with my central line.  Again, I blame the drugs.  I’m convinced I tried to get out of bed to go to the loo and tripped over the pole, accidentally getting caught up in all the tubes and dislodging the central line as I fell to the floor.  Others argue I ripped it out of my neck/chest, then as I bled, tried to stem the flow and clean myself up by using rolls of paper towel!  I honestly do not know.  What I do know is my nurse Tash yelled quite loudly as she entered the room ‘ Kate! it’s a fucking blood bath in here!!’.  It was, not only was I bleeding a lot (especially with extremely low platelets), I’d also snapped the food line, so there was stinky, sticky white glue-like fluid mixed in with the blood all over the floor.  There was so much it had spread through to the bathroom and when Tash and another nurse Ness started the clean-up we could hear their shoes squelching through the mess!  After making sure I was okay, Tash sat me on the end of the bed and told me not to move.  She tells the story much better.  This one will go down in history.  Dr Katherine came to remove part of the line still hanging from my chest.  I had surgery the following day to insert another line.

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Breaking down

Sweets Syndrome, Mucositis and central line yanked, then properly removed.

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Some of the complications I’ve experienced include CMV, Sweets Syndrome, Graft Versus Host Disease (GVHD) of my skin and gut and cataract.  More detail on them some other time.  Namaste.

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BONE MARROW/STEM CELL TRANSPLANT UNIT

22 Jul

First visit to the Bone Marrow/Stem Cell Transplant Unit at the Royal Brisbane Women’s Hospital (about an hour from home on the Gold Coast) was a rude shock.  The sight of multiple, massive waiting rooms full of sick people smacked me in the face like an icy breeze and I wanted to run.  It’s not been so long since I was one of those people and I’d hoped my time as such was done.

I’d been referred to Associate Professor Dr Glen Kennedy.  Luckily for me, a man I could be very direct with and enjoyed an instant rapport. He understood my ‘need to know’ and that taking the softly softly approach was not necessary – a great start given we’re talking about life and death.

I was not surprised when he delivered statistics giving me a survival time frame of somewhere between 3-9 years if my MDS was left untreated.  Learning how quickly this disease could progress to Acute Myeloid Leukaemia was troubling and my gut instinct was quietly screaming ‘pay attention Kate, this may be the path you’re headed along’.  I chose to keep that to myself.

The consultation finished with some wise words and a very strong take home message from Dr K – ‘You will see a transplant in your lifetime Kate, you won’t survive without one.’

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Script I wish I wasn’t writing

14 Jun

KC MDS IMAGE

I’m feeling….?

28 Jun

Okay, so I have worked in the ‘traditional’ media for the bulk of my adult life.

Earlier tonight I posted an update on social media – Instagram/Twitter/Facebook (InstaTwitFace:-) regarding the next surgery….

The amount of ‘likes/shares’ have made me sit up straight…Seriously?!

I’m pretty pleased to be at this point!!

Thank you………..KCx

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Link

Tamoxifen…..

21 Jun

Another bit of ‘not so light’ reading on Tamoxifen.  Although there’s a bit in here, there’s a lot that’s not.

I’ve written about it before.

I’m still not used to this drug. Don’t know that I ever will be.

http://www.webmd.com/breast-cancer/tamoxifen-for-breast-cancer-treatment-and-prevention?ecd=wnl_brc_061113&ctr=wnl-brc-061113_ld-stry_1&mb=

 

 

+ another 3 = 8

29 Feb
No, I never thought I’d be writing about the 6th, 7th and 8th operation on my ‘breasts’ (& ovaries…).  Here I am.
Thankfully – it’s all happening very quickly this time around.
As I get ready to start six rounds of FEC chemotherapy and then six weeks of radiotherapy, here’s a re-cap of some of what’s happened since I saw Dr D, January 17th (just six weeks ago.)

Operation # 7

1 Feb

The trauma of having a Sentinel Node Biopsy (for the first time) will never leave me.  I congratulated myself for having made it through that dreadful experience by reassuring myself that I would never have to experience the procedure again.

WRONG!

Same hospital, same doctor, same nurse, same bloody room……..same feelings of utter dread, disbelief and indescribable, unbelievably excruciating pain.

I politely asked if Paul could be in the room with me.  When the answer came back as being ‘no, for everyone’s safety…..’ blah, blah.  I turned into a pain in the arse patient, firmly, defiantly demanding his presence.

To further complicate things, they also had to perform a ‘hook wire’ procedure, where they use ultrasound to guide a wire directly into the tumour, so it’s easy for the surgeon to identify in theatre.

I sobbed so hard, taking a breath in hurt.

Some things are similar this time around, but the gravity of the situation is different.

I left the rooms where the procedures were done and gingerly headed for the room I would stay in after surgery.  I was met by two of the key figures in the recovery from my previous surgeries.  Nurses Margaret and Andy (Andrea) both told me they didn’t know what to say.

I was just happy to see their familiar faces.

My sister also came.  With her baby Harrison.

Everything is different……

Escape…to Gwinganna.

26 Apr
I’ve been dreading doing the whole ‘this time last year’ thing. I hope that in time the vivid recollections I’m currently able to make about my diagnosis (to the point of remembering the exact time, what I was wearing) will fade.
For now, I just wanted to get out of the house, away from the situation I found myself in this time 12 months ago.
An escape to a health retreat couldn’t have been more perfect if I’d deliberately set out to organise it. But I hadn’t you see.
In a lovely turn of events, I’ve been gifted a delightful weekend at Gwinganna, courtesy of a special woman who was at an event I spoke at last year.  You just never know who’s in the audience and what they might take from what you have to say. This lady who works at Gwinganna very kindly gifted me a stay at this magnificent retreat, saying ‘by  sharing your experience you will help others, I’m choosing to give something to you because I can.’ Wow……
Spectacular setting (within an hour from home), beautiful caring staff, incredible organic, healthy, nourishing food, clean fresh air, peace and quiet…a truly lovely way to take stock of how dramatically my life has changed in the past 12 months and to prepare for the next surgery.

Art with Heart

20 Oct
Lori is one special woman.
Apart from the fact that she’s supremely talented as an artist – our boobs and the rotten cancer that’s invaded them, has brought us together…
(Ohhh – did I mention she’s a bit of an Elvis fan?!)