Let's ALL poke a tongue for Mum

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Let's ALL poke a tongue for Mum Mum was admitted to Hospital for tonsillitis 2/4/15. Routine blood tests revealed she has (ALL) Acute Lymphoblastic Leukaemia. Join her road to recovery

As part of my recovery this page has been set up so I can blog my journey for myself, my family and my friends and for anyone else who would like to follow and support myself and my family as we travel this long road to recovery. My life was just starting to settle, I had a great job as a Nurse in a Prison that I was hoping to make a difference. My children were happy and succeeding and happy and

making big plans. Then admission to hospital for tonsillitis revealed that I had leukaemia. All of our lives changed in that moment..... please join me on my road to recovery, I will be very open and honest with my words and images that I will share....... hopefully this can give other an insight in the life of a normal family that has been given this challenge to deal with. And lets ALL poke a tongue at this Leukaemia together.

Happy New Year everyone✨️ I'm excited to share that my goal this year is to finally dive into writing my book—well, at l...
01/01/2025

Happy New Year everyone✨️ I'm excited to share that my goal this year is to finally dive into writing my book—well, at least give it a good try! Here’s the preface, a little sneak peek into my story and a few pics of the year that has passed 🌊💜🥂

This book isn't just a memoir; it's a raw, unfiltered outpouring of a woman's heart facing the unthinkable. It's the story of a mother, a sister, a daughter, a friend, a nurse – and a cancer patient. It's a story born out of the chaos of a life turned upside down in a single, devastating moment. I wrote this not as an expert, nor as someone seeking pity, but as a fellow traveler on this difficult path, offering my hand to those who find themselves lost in the same treacherous terrain. This isn’t a meticulously crafted narrative with carefully chosen words; it's a collection of my diary entries, scrawled in the quiet moments between chemo sessions, in the wee hours of the night when sleep eluded me, and while wrestling with the uncertainty of what lay ahead, finding brief moments of calm amidst the chaos.These words are a mosaic of emotions – the terrifying fear, the complete exhaustion, the overwhelming grief, but also, and perhaps surprisingly to some, the joy, the laughter, and the moments of hope that peeked through the darkness. I wanted to capture the truth, the whole truth, in all its messy, unpredictable glory. I wanted to lay bare the vulnerabilities, the fears, the insecurities, and the struggles that are often swept under the rug in a culture obsessed with positivity. I believe in positivity, but I also believe in honesty. And honesty, I've found, is a powerful antidote to fear. I hope that by sharing my story, both the dark and the light, I can offer a measure of comfort, understanding, and ultimately, hope to others who are facing their own battles.

Hi everyone 👋 it's been a while since I have posted & I have so much to update you all on, but today, this post is dedic...
07/02/2024

Hi everyone 👋 it's been a while since I have posted & I have so much to update you all on, but today, this post is dedicated to Peppa 🐕

If you have followed this blog from the beginning, you will know that after I was diagnosed, we had to make the hard decision to find a home for my beautiful dog Peppa. She was adopted by the most beautiful family, and they gave her an amazing life on a farm.

We can not thank you enough, Sally and Jeff, for taking her into your family and loving her ❤️

RIP Peppa 💔

Today is the very FIRST ever awareness day to recognize those living with Graft-versus-host disease, or GVHD.  Many of y...
16/02/2023

Today is the very FIRST ever awareness day to recognize those living with Graft-versus-host disease, or GVHD.

Many of you may not know this, but I live with this disease everyday.

It is a condition that happens after a blood stem cell transplant. Donor cells (the graft) that a person (the host) has received attack that person’s organs and/or tissues. The donor cells do this because they mistake the host’s organs and/or tissues as a threat.

Seven months after my transplant GVHD reared its ugly head and it was one of the worst things I had ever experienced, it was so painful and uncomfortable and many times I wished that I was dead. My mouth was covered in ulcers and blisters, even swallowing hurt, the itch and burning of my skin was intolerable. After a high dose and a year on steriods we did manage to get it under control,

I am one of the lucky ones as my pain and symptom's are now minimal, I have learnt to live with this disease and I could honestly say I would not know what it would be like to live without any pain. The pain reminds me that I am alive and that life is short - so get out there and live it to the fullest 💜💜💜

Bone Marrow Transplant August 2015
GVHD started April 2016 (photos attached)

Today, seven years ago is a day that is etched in my memory forever 💜  That day my world was turned upside down when we ...
02/04/2022

Today, seven years ago is a day that is etched in my memory forever 💜 That day my world was turned upside down when we were told that I may not survive the next few weeks. I had no idea what was waiting for me over the next couple of years and to be honest, if I did have any incling, I am sure I would have hid my head under my blankets and said that I am not strong enough to fight.
..but here I am today sitting outside our new home today thinking how freaking lucky am I!! I have just spent a week with my daughter whom I hadnt seen for over two years due to the pandemic. I just celebrated my 50th birthday with all my family and friends and we had a humdinger of a party 💃💃 Bloody hell I even survived the pandemic!!!

I have filled my life and world with love, friendships, happiness, adventure, new challenges and fun since that frightful day in 2015 and I have never looked back (except I do still miss my dog Peppa) 😘

There is a saying in the Cancer world...that this is your "new normal" but for me nothing in my life has ever been normal and I don't want it to be either, I want it to be whimsical!!! (yes Paul had to google that for me) 🤣🤣

I would like to say thank you to everyone who has been a part of my life, be it good be it bad, be it unruly, be it inappropriate, be it crazy, be it happy or sad and even the sensible ones 😉

Take a moment, close your eyes, take a deep breath and as you exhale, smile and feel how wonderful it is to be surround by life 💜💜💜

During the last five years, I have been privileged to talk and meet others who are about to embark on the unknown path o...
31/10/2021

During the last five years, I have been privileged to talk and meet others who are about to embark on the unknown path of a stem cell transplant. I do not at all pose to be an expert on the clinical and medical side of a transplant, I leave that up to the experts. But I do have a pretty good insight into the physical and emotional rollercoaster that it is.

Last year I was introduced to the fabulous Fiona, it was not her first encounter with Cancer, she had conquered it already once or twice. I remember the day we met, she welcomed me into her home, I was introduced to her gorgeous two young boys and her husband, they were seated around the dinner table. Fiona and I retreated into the living room, where we sat crossed legged on the couch, our words just started, it was like we were just two long lost friends, we giggled, we cried (lots), we shared our fears, our pain, our hopes, and our dreams. That is the beauty, she never lost hope.

Fiona, you left this world this morning, you now can rest 💜💜
I just wanted to somehow tell you, I was privileged you let me into your life, when I look up to the sky at night and see that bright star, I will think of you. Keep shining like that star that you are🌟🌟 It was an absolute honor 💜💜💜 Rest in Peace Fi xx

Disclaimer: DO NOT read this if think COVID is a conspiracy (political or otherwise) but DO READ this if you are a tad h...
24/10/2021

Disclaimer: DO NOT read this if think COVID is a conspiracy (political or otherwise) but DO READ this if you are a tad hesitant about the vaccine. Also, please refrain from any political, negative or anti-vax comments, this is my post, and I would be grateful that is respected.

Exactly 2,397 days ago I was told I had an aggressive form of Leukaemia. I had a small window to decide to treat or not to treat. Without treatment I would have been dead within weeks, with chemotherapy I had a chance. I knew the decision of chemo was going to make me feel very unwell, loose my hair and my dignity, with the possibility it may not be successful, and I could lose my life.

Vividly etched in my memory is my first round of chemo, I felt physically ill with just the thought of having this cytotoxic drug injected into my veins. I also knew that I had a choice, I could choose to die (which trust you me it would have been the easier choice) or I could choose to trust in our medical professionals, our Doctors, Nurses and Scientists and start on chemo.

And today, (more than 6 years later) right at this moment in time, I am here and alive. I have danced at my children’s’ 21st, I have moved towns, I was able to sit with my dad and say goodbye while holding his hand, I have made new friends and I have started my own business.

WHY and HOW did I make that decision to inject a known cytotoxic drug into my veins? I trusted my doctors and nurses. I also had a very selfish reason; I didn’t want to die! But my biggest motivation was my children. They were too young to lose their Mum, they were too young to experience grief. Death for me would have been easy but not for my children.

So, my question is, if you had a chance at life or cure, or to protect your loved ones with medical intervention, Would you? I know most people in their lifetime will ask for help from our Medical Professionals and will benefit from the advances in treatments and technology. We travel, and do not question the travel vaccines that are needed, we get cancer, we have chemo, we have an infection, we take antibiotics, we have a headache so take a Panadol.

Yes, I am a Nurse and I trust in my profession, I believe it is my duty of care to protect my friends, my family, my community, and our country. I am proud that I have taken “two” for the team.

Try to think of the vaccine as your coach and you are preparing your body to represent your country in the biggest game ever! The day arrives and you execute what the coach has taught you and win the BIG GAME! If we work as a team, we can win and we will all be cheering for each other in the stadium!!

I get that this is hard, my business is suffering, I miss my Mum, my sister and my daughter, but I also don't want to see our health system overloaded, our ICU's full and my colleagues exhausted. And I do not give a flying toss about politics (red, green, blue, white or purple) and who is running our country, I just care about our people ❤

Please trust in our medical professionals.

Love to everyone and stay safe xx

Kia Kaha

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