Tag Archives: Cancer

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!

..before you go!

21 Feb

As keen as I am to get home later today, I knew it would be foolish to rush.  One of the benefits of not pushing, is that final checks revealed my haemaglobin has dropped since the surgery (as was expected.)

So, I was able to have a last minute blood transfusion to ‘top me up’. Thank you again you wonderful donors out there, still a year post transplant- my health is being improved by your generosity!

The ‘To-do’ list at Discharge includes a final physiotherapy session on the ward, confirming future appointments with Orthopaedic specialist at ‘complicated fractures clinic’ and of course with my BMT Consultant.

I must say I’m looking forward to a big bowl of green Asian veg, with sesame oil and soy sauce. The hospital fare wasn’t really doing it for me and I found myself humming ‘….hospital food’s gettin me dooooo-owwnnn’ ah la David Gray.

Tell me you don’t find this ‘Moroccan style chicken’ appetising?
(I promise, in that ahhhhh, slop, there is  one piece of chicken! Look closer. It’s down there on the bottom right of the plate!)

Final step was to change the dressing on my surgical wound. Nurse Jaynne – who’s heading for a career in the ADF, did a great job getting this scar across my thigh and butt looking clean and ready to go home.

Puppy cuddles await…

21 Feb

There’s nothing like home. Sure, you can think instantly of the creature comforts such as your own bed, a nice lounge, the ability to be able to grab something from the fridge when you like etc. but for me – the things I’ve missed most are of course my puppies; Ch’i, Lila and Phoenix Hope.
Paul is doing a great job looking after them, but we both are so grateful to our darling friend Krissy, who is again going above and beyond. This crazy, loveable lady goes to visit our girls everyday. She hangs out with them, cuddles, plays and just keeps them company. A beautiful extension of our friendship is how seriously she takes her role of ‘Godmother’ to the girls.

This is a special pic, as Krissy really doesn’t like having her photo taken.

…and not to be left out, my little brother Skype’s in to see I’m ‘following Drs’ orders’.  Crack in’ day in Adelaide – look at the colour of that sky!

THR – done.

20 Feb

Once again, I don’t fit into the ‘typical’ profile of a patient requiring this latest treatment – a Total Hip Replacement (THR).  Nothing I can do about it, but a little more detailed planning for my various medical teams.
Clearly the Bone Marrow Transplant team, led by Dr Kennedy are my ‘go-to’ guys (& girls). This Avascular Necrosis of the hip and THR is being handled by Orthopaedics though, so there’s a whole new team and dynamic to consider. Let’s just say it’s been interesting….

The Australian Pain Management Service (APMS) is heavily involved! As is the Physiotherapy team. Include the nurses and you’ll understand I’m never lonely – hospital is a very busy place and I see a lot of people! (Usually right when the heavy drugs are kicking in and I can’t string two words together!)

Thankfully today I had a fun visit from one of my ‘besties’, from way back in high school days. She’s seen me indulge in too many champagne’s so is pretty understanding. Today though, Jen; a very capable mother-of-two, took over bathing duties for me! As she gently washed my back, I giggled so hard I was sure I was going to fall through the seatless toilet/shower chair I was perched on! Not your average hospital visit🙈

Thankfully my drain hasn’t been collecting that much blood, so it’s coming out! One less tube….

And this my friends, is my new left hip!

Incredible isn’t it?

This x-ray also shows a deterioration of the bone in my right hip, in line with the early stage Avascular Necrosis reported in the MRI a few weeks back.

Everybody shufflin!

20 Feb

Day One and I’m proudly ON MY FEET WALKING! (Okay shufflin’ – but I’m fully weight-bearing with the slight aid of a rollator. UNREAL!


Mum had just arrived – how cool!

Dr Halliday earlier confirmed operation went well and that it would be only be a short stay in hospital.

When I asked about doing the other side he replied, “I’m not going to hack into your right hip, it really doesn’t look that bad. I don’t know why you’ve got this pain.”

Well, I thought we’d been over the fact that crumbling bone might have something to do with it, but he now seems unconvinced!

He told me that when the cartilage was peeled back, it revealed a mass of crumbling, almost powdery bone-like substance and that the deteriorated bone had basically been ‘encapsulated’ within that cartilage.  There’s no saying that’s not already happening to the other side.

That’s the report from the initial MRI, we’ll see how I recover from this THR and whether there’s been any progression of disease in the right side.

 

Can SO do this..

19 Feb

This is hard core. I’m trying to recall some of the conversations and incidents pertaining to my care and the expected success of this surgery on my left hip (keeping in mind the right will have to be done soon).

Whilst ‘mechanically’, it’s pretty standard, the finer details in planning and taking necessary precautions have involved a lot of people with expertise in several key areas. It’s not solely an ‘Orthopaedic job’ nor is it ‘Haematology’, however big decisions to make this as safe as possible require specialists from both fields.

Apart from my Coke ‘splash’ yesterday, the team set-up a platelet transfusion for me to cover two hours of surgery time + an additional bag. (They have to be agitated, so I willingly took on the role of ‘chief agitator’😜, while I would otherwise have been just laying around watching someone else do it.)

It was a big bag too – 340mls.

  

The Anaesthetic and pain relief was a bit tricky for the team to fine-tune, given my allergies (I can rattle them off quickly now – Codeine, Tramal, Endone, Ketamine and Erythromicin!!)

In Pre-Op, my surgeon said he wasn’t worried about fixing my hip, but was concious of my ‘overall poor health’. A seemingly simple little issue could become a life-threatening emergency for me very quickly. Still, my hips are dead/dying and the left one is broken – this has to be done. Happily, my neutrophils are good and the infection risk is being handled as well as humanly possible.

Food (with GVHD considerations), fluid, oxygen are other elements being taken into account.

My drug-affected recollection is that I tried to smile the whole way through, even when sliding across onto the operating table. It was very noisy when I drifted off to sleep; metallic banging of instruments, people buzzing around and the Anaesthetist holding my hand firmly.  We had discussed doing a nerve block in both hips, so I could enjoy 8-10 hours of reduced pain. The surgeon had agreed and I said thank you before 💤💤

   

NASTY – but alive and I’m in one piece. Those were my initial thoughts on waking.

Navigating my way through the next crucial 24-48 hours is not going to be fun, but I have always found that by being observant, focused and actively involved in my health care, things can be easier.

The nurses here in Orthopaedics don’t know me as well as the guys and gals in the BMT unit. It took a bit of persuading to make them see I was ready to get up on the day of my surgery…hey, if an 80 yr-old can do it, I can do it!

WOW….. Breath-taking. I remain still, politely ignoring others in the room while I allow myself to soak-in the beauty and power. This simple sequence, which has today led to me being on my own two feet (relatively pain free), is awesome.  Life is….awesome.

   

Morpheine with Coke chaser = surgery delay!

18 Feb

Oral morpheine, my go-to pain relief at present, tastes pretty awful.  This morning at the unsociable hour of 4am, I decided to wash it down with a mouthful of Coke.

Dumb idea.

As the lovely Nurse Zach and delightful Dr Tom prepared me for surgery, with blood tests and platelet transfusion etc. they casually asked about the last time I ate or drank. I confessed to my post-transplant sweet tooth gulp of the ‘black aspirin’ that followed the morpheine and other meds, and they just glared at each other.

Although I was safely within the 5am cutoff time for fasting, Coke wasn’t water or black coffee or cordial which were all permitted beverages. Their faces told me I was in trouble…So much trouble the Anaesthetist came and changed the surgical list. I’d been bumped from position of first cab off the rank. 

Now, I sit, I wait. I am grumpy, with a dehydration-related blinding headache.  Don’t suppose they’d give me a can of Coke? A sip?

   

  

   

Home – but not as I know it.

18 Feb

….And not for too long.

I know this is only a short stay, under two weeks to enjoy the comforts of home and my gorgeous girls Ch’i, Lila and Phoenix Hope (any excuse for more puppy pics!)

  

After assessment by Physio and Occupational Therapists, I’m out of hospital with crutches, rather than a wheelchair, rollator or walker.

Good thing hadn’t planned anything else in the time back on the Coast, as I have been unexpectedly sick.  Unwell to the point where I actually packed my bag for hospital expecting to be re-admitted.  I didn’t feel sick, but all of a sudden was violently ill, repeatedly – for no obvious reason. I had one 24-hour period that is a complete blur of tumbling out of bed to the bathroom, having a ‘few moments’, before crawling back to bed in such a state I could barely believe it. I was heaving nothing, unable to keep a tiny bit of water or electrolytes down (let alone all the medication I have to take) and shaking uncontrollably. Completely exhausted, I willed the day and night to end, so I could catch my breath!

Which brings me to breathing. Ohh such a simple, critical and beautiful life-sustaining act.  Countless times, people have asked how I keep getting back up for the next round of ‘misfortune’ I’ve been dealt. To be completely honest with you, more often than not it comes down to just breathing my way through.  My daily yoga practice (sadly somewhat altered and less-energetic of late) is my most effective coping strategy (okay – that and a slightly warped sense of humour!) How do I not get completely overwhelmed, lose my cool, or drop my bundle?  By choosing to be ‘mindful’ at every opportunity. The term ‘mindfulness’ is quite en vogue, but it’s really just a modern way of describing a behaviour that through the ages and practices such as yoga, Tai Chi and meditation, can be put simply as ‘focusing on the moment’. All sounds a bit ‘new age’ to some, but it’s historical roots can’t be denied. I’m so grateful for my Nana’s influence here.  As very young children she taught us (and thousands of others who attended her yoga classes), to breathe, focus our thoughts, be calm in the decision making process and….breathe.  My deep affinity with this learned behaviour is something that I have continued to seek out in adult life through readings, classes and courses. It is most definitely a skill, an incredibly valuable one that has helped me navigate some pretty tough challenges. Don’t get me wrong – the odd meltdown still occurs, but is usually rather mild and short-lived.

This ‘hip drama’ has pushed me almost to my limit. I can’t quite put my finger on why though. Perhaps it’s a combination of the timing around my 1st birthday (on which all I wanted to do was celebrate being alive!) and the break-up of my marriage, the physical incapacity, loss of recently regained independence, turmoil of major surgery and all that entails (twice over!)…..not to gloss over the PAIN. My goodness, the intense bone-crushing pain, the searing nerve pain, the all-over hurt my body is experiencing is unrelenting. I’m on a cocktail of pain relief medication courtesy of the Palliative Care and Pain Management experts. Keeping on top of it is so tiring and the drugs are not without their own side-effects. As Pink once sang “……morpheine is making me itch!”

Soon, I’ll have a new left hip, made from a combination of steel, ceramic and plastic.  Soon after that surgery, the team will do it all again for my right side.

Time to get back on my feet. 

But ‘I’m’ the patient.

5 Feb

9pm tonight, almost exactly 48 hours after that horrible experience with my ‘roomie’, Boom! Another.

A voice from behind the curtain demands “nurse get me a sleeping tablet – you’re keeping me awake!”  “I’m sorry, what can I help you with?” She asks.

“You, because of you I can’t sleep, you’re in here socialising!” She spat.  The nurse replied “Ahhh, well no.  It’s part of patient care to develop relationships and yes, we have been chatting.” When challenged again, the nurse pointed out it wasn’t that late and it wasn’t unreasonable…also that the patient still had her TV on.  “Yes – and it’s LOUD!” She bit back, “to drown out you and Kate.”

What?! She knew my name and used it?!

“Excuse me”, I said “after the other night, this is intolerable.”

She exclaimed at the top of her voice, “but I’M the patient!”

I took a deep breath, but couldn’t help myself, eventually saying “I guess I could politely point out that I am too”.  As the nurse reminded us that we had to share the room, I painfully shuffled my butt to the edge of the bed to lean over and reach my new crutches. I went to leave and for the first time saw the lady behind the curtain.  I was in complete disbelief that someone could be so unwell, yet find the energy to be so aggressive. As our nurse left, the nurse in charge promptly entered to try and break it up. In a frustrated hobble to the door, I thought to myself, you lady are a seriously nasty piece of work.

Over the past few days I have learned that sadly, her condition is terminal. I am acutely aware of the range of emotions she may be experiencing, fear the one I have overheard her talking about the most. It makes me upset that she appears to be leading such a miserable existence and that her final weeks or months are scarred by this sort of outburst.

As the nurse in charge tried to calm the situation, the woman piped up at me again “You have influence in here…” What?! I said “I beg your pardon?”  She raised her voice even louder, “Ohhh don’t say what, I know what I need to say and I’ll do it in the morning….”

This was bullshit.  I was out.  Unsteady on my feet, I gently swung my broken hip forward and put one leg, then one crutch in front of the other and went to the patient lounge.

Deep in thought over the awful confrontation, and trying to reason that everyone deals with stress differently, I burst into tears when the nurse in charge came in to make sure I was okay. I was shaking.

As I apologised, saying I felt sorry for the nurse looking after us and that I should have left the room without saying anything, the nurse in charge told me she was glad I stuck up for myself. She consoled me with a tub of lime jelly and shared with me some horror stories of abuse and violence from other times in her nursing career. Truly shocking. I now know why there are signs in health care facilities all over saying things like ‘zero tolerance’.

I realised I couldn’t sleep in the lounge and was not looking forward to lying on the other side of the curtain to someone I’m so repelled by. I imagine it might be like being on school camp and having to share a tent or dorm with the class bully.

News travels fast and the rest of the nurses on duty were on it. Many asking if I was alright as my crutches and I slowly clunked our way back to the room.

As I sit here typing away, I’m not so concerned about the tap-tap-tap of my fingers on the keyboard. The smart-arse part of me is tempted to turn the TV on, and crank the volume!

‘Looks okay’.

3 Feb

Test results are a big deal, especially when they can show definitively whether there is ‘active Leukaemia’ in a person who’s had a Bone Marrow Transplant to get rid of the potentially deadly cells.

The first signs I had something really wrong (following my Breast Cancers), were; bone pain, unexplained bruising and fatigue.  Below are some shots of my bruised bod over just the last few days.  You can argue the bruising is caused by low platelets, high-dose steroids or Heparin (it’s to thin the blood and reduce the chance of DVT, I’ve been having it injected into my belly since being laid-up with these troublesome hips).

My most recent Bone Marrow Aspirate/Biopsy was performed last week and it’s been a real effort to keep things under control.  It’s a pretty standard test, but it does take the lab a while to process the information gained from taking some bone marrow from the top of the hipbone.

A new Dr I hadn’t seen before had the pleasure of delivering some good news last night – telling me casually that it ‘looks okay’.  

……….I guess there’s nothing more to say really. 

    
  

Sharing it around.

31 Jan

Writing about my experiences is an interesting experience in itself.  The majority of people are very encouraging (many suggesting over the years that ‘there’s a book in it’).

Sharing bits and pieces on social media is one thing, but the blog is a little more detailed and the prospect of a book – much more so.  On occassion I receive some lovely feedback, which really does warm my heart and spur me on to write or share more.  Whilst marking my ‘1st Birthday’ last week, a complete stranger took the time to send the message below.  It made me stop and really think about just how many are involved in keeping people like me going.  I was pretty chuffed that by sharing on Insta, this person could feel my gratitude and saw fit to reach out.  I can’t tell you how many hundred times I’ve walked along the corridor, past the lab in which my donor stem cells were processed.  The scientists and people working there just as important to my survival as the awesome team of Doctors, Nurses and Allied Healh staff.

 
To all, another great big, heartfelt thank you for your work.  And thank you to my friends and family who helped celebrate this one year milestone in a variety of ways – including cards, delicious doughnuts, beautiful natural body care treats and the old favourite – cup of ice!  I wasn’t expecting to be back in hospital, but you guys have made it a more pleasant time. 

   

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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Work up

28 Oct

The latest results aren’t overly fantastic, in fact they’re pretty shit.  It appears my MDS is progressing quickly.  There’s every chance (and it’s my ‘gut feel’), that it has already ‘transformed’ into AML, but the only way of telling that is through another Bone Marrow Biopsy, which will be done later this week as part of the ‘work-up’ for my transplant.

My work-up includes preparation for full body radiation as well as things like getting a baseline reading for my heart and lung function, a check of my skin (and removal of anything suspicious – luckily I only had one little spot on my back which had to come out), eyes and dental health etc.  you know, before every part of my body is affected by the transplant process which includes some heavy-duty chemotherapy.

There was something like 18 appointments in three full-on days!

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Food, wine and good times..

20 Oct

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 I’ve just had the most amazing few days in Melbourne with two of my dearest family friends, Lina and Ian and their boys Charlie and Josh.

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Although I was physically running on empty – this was my last hit out/trip away before treatment.  We shared some beautiful time together talking about life and enjoying the most fabulous food and wine.

My cousin-in-law/friend/creative collaborator Jodie arrived so we could attend the Jean Paul Gaultier exhibition, which just completely satisfied every element of creative design, garment construction and was just all ’round extraordinary!

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We were on cloud nine and although had paid to go to a formal ‘Q&A’ with the man himself (which was nice enough), we busted our way into a VIP event and were treated to second row seats, a more candid designer and many laughs. It topped off a truly wonderful experience.

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Paul arrived and Lina and Ian’s amazing hospitality continued for us and Jodie – gourmet delicacies, spectacular wine and seriously great conversations.  We talked about our journalism and news histories as well as personal/family memories – not only has Lina known me since I was born – she was one of the first people to hold me as a baby.  We also touched on what’s happened health-wise since we last spent time together, almost in disbelief.

I was caught off guard at airport when tears came from nowhere – my love and gratitude for friends such as Lina and Ian was completely overwhelming.  As was the realisiation that this may be the last time like this.

On the flight home, I was seated at the opposite end of the plane from Paul.  I found myself next to a fascinating man – who just turned out to be an Orthopaedic Surgeon (along with fellow JPG exhibition atendee and fine furniture/interior design lover), so we had great energetic conversation about being in isolation, the power of the mind, yoga and meditation, music, keeping connected, all of that.  Despite having asked to be seated next to Paul if it was possible, I really enjoyed this connection with Dr Steve and was very happy chatting with this new friend.  I was in the middle seat and at some stage mentioned Pink Polar and the man sitting to my other side happened to be a vet and also knew all about Geoff and the Boobsled crossing Antarctica.  We shared lots of laughs between the three of us.  It was the quickest flight home courtesy of this cool seating arrangement!

Spending time just savouring the friends, family and being open to new acquaintances in my life – courtesy of this hand, is a positive I hadn’t predicted.  Although not pleased about the difficult weeks and months ahead I have to face this reality.  No escape is what reinforces the meaning of ‘reality’.

Life is all about ‘climbing the highest peaks and navigating the deepest valleys…’

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ROLLER COASTER OF THIS REALITY

12 Aug

So I’m back on the roller coaster of fortnightly monitoring through blood tests. I’m gaining a whole new education as I learn about blood cancer and the definitive factors which will impact upon my care – the importance of numbers of red blood cells, white blood cells, platelets etc.

Through how I was feeling physically, the fatigue, the shortness of breath, the extreme bruising plus this new understanding of regular blood tests – I could tell things were sliding and quickly.

My last appointment with Dr Kennedy backed this up.  I’d shown a marked decline in the last 2.5 months of records and he felt we should be aiming for transplant prior to Christmas. WHOAH…….. This was a shock for my family and I.  It appears I was a whole lot sicker than any of us realised.

He indicated if there was anything I desperately wanted to do, that it was a good idea to do it now, as it’d be a while before I was well enough. My first question was to ask if we could wait until after Christmas as my little brother David was getting married and it would be odd for the family if I wasn’t there.  The answer was ‘on this current trajectory Kate, you probably can’t hold on’.

Next – I asked if I could squeese a trip to New York in, in between my fortnightly bloods.  The answer was an emphatic yes!  So long as I went soon. Dr K said it was the best medical advice he could give and that I should experience the Empire State building at night.

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

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