Welcome to LyndseyLand

Where does one start when sharing their journey with terminal cancer? Is there even a start, a moment where it all began? Or is it just a jumble of moments that somehow ended up landing me here, epically broken and dying.

Let’s begin with introductions.

This is me.

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Nope actually I lie. That was me. The old Lyndsey, before I was diagnosed on the 8th August 2014 with Stage IV Breast Cancer. Stage IV, Metastatic Breast Cancer to be precise. For those of you that don’t know, once that small seemingly harmless word ‘metastatic’ is thrown in there, things become terminally bad. Basically, it means the cancer has spread through my blood to my liver and mostly likely other places that the CT’s can’t find yet.

This is me now.

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This is Ben, my husband and own personal Superman. We have been madly in love for 8 years now and just celebrated 3 years of marriage on the 4th August. He is the best person to ever walk the face of the earth. More on him another day though.

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This is Nyah. Our beautiful, intelligent, kind, confident little princess. We celebrated her 6th birthday in July, and the loss of her very first baby tooth 3 days later. She is my miracle and the very best thing in my life.

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This is my Dad, Peter; Mum, Lynda; Brother, Drew; Sister in-Law, Amy; Niece, Chloe; and my new, little, squishy Nephew, Nate. They have all played a huge part in my journey. Cancer doesn’t just affect the patient, it’s a whole family affair. Sometimes I feel lucky that its not me having to watch and help my loved one slowly fade. I couldn’t possibly imagine how hard it is for them to face normal life and their own heartache and pain, all the while supporting me (which I will readily admit is not easy). They sure do a bang-up job.

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So that’s us, the Clarks. We live in a teensy house that I adore and have four fur babies; Bunny (Sissy Pie), Peppa Pig, Princess Twilight Sparkle and Noelle. We live everyday with big love for each other.

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Pre-Cancer, we were a pretty normal family. Ben and I both worked full time which allowed us to live comfortably and give Nyah everything she needed (and wanted!).  Life was good – great actually.  We were two of those rare people that felt like we had everything reasonably together. And then, all of a sudden, we didn’t.

You could say that my journey with cancer started with anxiety. Around Christmas 2013 I began to have weird dreams about cancer, more particularly, my Dad getting cancer. It began to get so regular and real that it made me really anxious. One night, my 2 best friends (Kirra and Krystal) and I were snuggled in bed having a mummy moment while our girls played. I admitted that I was battling with these thoughts and scenarios that kept popping up more and more, and was considering seeing my GP for some meds to help. I remember saying, “Someone I know has cancer. Someone close to me”. True story.

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In June 2014, we went on cruise to New Caledonia with Kirra, her husband Ben, and their daughter and Nyah’s best friend, Indi. We had such a wonderful time but towards the end of the cruise I started to feel yucky. Thinking it was sea sickness, I didn’t worry too much about it. When we got home though, I couldn’t seem to shake the mystery illness. It was hard for me to leave my bed and soon progressed to intense stomach pain that took me to hospital. I ended up being in and out of hospital for almost a month and never returned to work. The doctors assumed my illness was some sort of infectious disease that I picked up on one of the islands, and that as soon as the pain meds kicked in and I felt better they’d declared me cured and send me home. Often I’d return hours later even worse. I had lots of different diagnoses over those few weeks including pneumonia and an infected spleen. It wasn’t until my second CT scan that things took a turn for the worse. They found some suspicious looking ‘lesions’ in my liver and investigated them further through a liver biopsy. This will forever be the worst experience of my life. They couldn’t knock me out because I was too sick to have the anesthetic. I had to lay there whilst they inserted a mammoth needle through my back, into my liver and then cut off 2 sections. Trust me, it was even worse than it sounds. I spent my second wedding anniversary in hospital and only just made it to Nyah’s 5th Birthday and party by discharging myself. Within the month I lost the ability to eat, walk, toilet and shower independently, and be a mum. I was pretty much a vegetable. Those that know how fiercely independent I am will understand when I say I will never, EVER, be able to take away the memory and shame of my husband having to wipe my ass. Ever.

I don’t remember much about the night I got told I had cancer. My whole family was there visiting, but I was dosed up and in pain. I remember the doctor coming in, then getting the most intense feeling of fear. So much so that I turned to my Mum and asked her to hold my hand. Somehow part of me knew it was bad. The initial diagnosis was Secondary Liver Cancer with no real clue as to where the primary cancer lie. Liver failure, lung collapse, pneumonia, fevers and lots more were added to the growing list of problems I was facing. Everyone tells me that we didn’t find out it was terminal cancer that night, but I don’t actually remember there being a time when I felt hope. Like I said, I knew from the start it was bad. I remember being devastated that my brother had been there to hear the news, and wanting to protect him from the pain and hurt.

The next day, my Oncologist, who worked at another local hospital, came to see me and offered me chemotherapy treatment. She has since told me that she was the only one in the team of doctors at both hospitals that was willing to give me a chance and offer me treatment. I was just too sick. Whilst I understand the need to not waste resources and hospital space, it’s scary to think how many people have lost out on precious time because that time was deemed too expensive or a waste. I’m not sure why she decided I was different, but I thank God everyday that she did. I owe her my life.

I was transferred to her hospital that night in a very bad way. I had turned a beautiful shade of yellow as my liver continued to fail. Mum stayed with me so Ben could spend a rare night with Nyah, and he and Dad didn’t expect that they would return to find me in the land of living. That night though, after deciding to go ahead with treatment, I started steroids which had an immediate effect. I remember the look of shock on both of their faces as they arrived in the morning to find me sitting up, semi-coherent. I was even able to eat some real food!

Over the next few days I had battery of tests. I remember breaking completely at one point and screaming over and over as they again pressed and prodded my balloon of a stomach. Not one of my finest moments, but petrified doesn’t even begin to explain how scary it was to go in and out of these huge machines, hold my breath with a collapsed lung, and simply lay flat with the pain. Valium quickly became my best friend. Sometime in this period, the doctors confirmed it was terminal cancer and that it most likely originated in the breast. Such anger I remember feeling upon hearing this. How could I have breast cancer? I did everything right! I breastfed my daughter for 13 months, checked my jugs regularly, and never did drugs. The only small things you could say I did wrong, if you were being picky, were; I carried my phone in my bra everyday, consumed lots of artificial sugar in the form of diet drinks, and am over weight, yo yo-ing my whole life. My Oncologist is pretty sure though that I’m just a freak of nature. One of those rare cases that happens to someone on the news, not to you or someone you know. We will never know why, which is awful because I so desperately want to know why so that I can stop Nyah from meeting the same end. What’s scary is that they are pretty sure I have had it for quite some time. It makes you really wonder what hope any of us girls have in battling this silent killer or ever finding a cure, if the first you know of it, you’re already almost dead. I struggle everyday with the thought that somewhere in the world, right now, there is a Mum hearing the exact same news that I heard, facing the thought of leaving her baby, and that I am utterly powerless to fix it. I wish I could be enough and it ended with me.

I stayed for about 3 weeks in hospital. Between Ben and my Mum, I never spent a single second alone, even when I was moved out on to the ward. I think the nurses quickly realised there was no point asking Ben to leave, even though he technically wasn’t allowed to stay on the ward. His big bum wasn’t going anywhere. I started the chemotherapy in little baby doses and things continued to slowly improve, though I was still struggling with walking, showering, toileting, etc – basically being a human.

I remember one pivotal night a lovely nurse gave me a verbal kick up the butt. She knew a friend of mine and talked to me about how important it was to not give up and that I still had control over how this bastard of a disease was going to take me. I hadn’t given up. That word has never and will never been in my vocabulary, but I think I had resigned myself to the fact that I was going to die pretty soon and was just waiting. Her encouragement and support gave me some drive, and the next day I got up. I began to use the walker, tried harder to eat more and regain some independence. Each day I got stronger and needed less breakthrough pain medication, had more energy, ate more and was rejoining the land of the living. I remember the day they suggested I might be able to go home. Everyone went into overdrive. Dad and Mum blew into the hospital like a hurricane making plans and then dashing around to set up a hospital bed and equipment at their house. We decided it would be best if we lived with them so that they could help with Nyah, I would never have to be alone, and Ben could continue to work. The feeling of going home after such a long time in hospital, and never thinking I’d sit in a car or see my fur babies again, was indescribable. That night Nyah and I fell asleep snuggled on the lounge, and though we weren’t able to share a bed, Ben and I were close.

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A couple of nights after I came home, Ben took Nyah out on a ‘daddy daughter date’, and I had my first panic attack. I remember falling asleep and having terrible dreams about what life was going to be like for Nyah and Ben once I was gone. I remember pleading with my Mum and Dad to help me find more time so that I could make it okay, then watching them fall apart at not being able to take it away. Valium was still my best friend at this stage. That and my amazing husband and friends who I’m sure made the effort to stay awake all night, just so I had someone to talk to at 3am when I was falling apart. Night time was beyond hard, when all in the world except my brain was quiet.

After a few days of being home, Ben took me back to our house to grab a few things. It was the weirdest experience. In all the chaos, he hadn’t been back to tidy or organise and everything was frozen in time. We still had Nyah’s birthday gifts and party goodies on the lounge. It was almost as if she could walk in the door and everything be normal again. The sadness hit both of us like a ton of bricks; how much we had lost and how nothing would ever be the same again. We tidied, organised and packed, and didn’t go back for a long time.

Over the next few weeks I continued to improve. It seemed like chemotherapy was actually working pretty well for me, and soon I was able to walk short distances without the walker, shower and dress myself, and even toilet independently. I remember sobbing with joy the day I was finally able to wipe my own butt. It was a pretty big deal. We were still working on a time frame of weeks but I was starting to hope that I’d make Christmas. My Oncologist was always very honest with me, letting me know that things could change in a heartbeat, and that I’d already defied all the odds. I remember thinking, “just let me have one more Christmas”, my favourite holiday. I really obsessed over the little things I was going to miss, like the loss of Nyah’s first tooth, Nyah riding without training wheels, her first day at school, receiving Mother’s Day stall gifts – all these little details that make up a life. And then somehow it was Christmas, and then her first day of school, my Birthday and then even better her birthday. I have seen her lose her first tooth, had the most incredible Mother’s Day (she brought me the most useless but treasured gift from her school stall), met many new little lives I thought I’d never know, including my new baby nephew, and made memories on many small holidays. I’ve seen amazing shows, movies and TV series I thought I’d miss, and because of my amazing husband, family and friends, pretty much ticked everything off my bucket list. We were even able to move back to our house and I started to drive short distances again. Somehow I made it and am now chasing that second ‘last’ Christmas. These days, we live and count every second and moment in an effort to capture and appreciate everything. It sounds fun, but really it sucks. I forget what it feels like to just enjoy and live in a moment. I’m always thinking about getting a photo, writing it down, or whether or not it will be the last. I’ll take it though. A thousand times over.

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Throughout my time in hospital, Nyah was an absolute superstar. She was shipped from pillar-to-post every day thanks to my amazing friends and family who stepped up and did everything they possibly could to keep her life ‘normal’, trying to fill my place. She was loved so big at preschool, by my Mum and Dad, Brother and Sister-in-law and friends. Kirra even went out and brought Nyah a whole wardrobe for her house, so that Nyah could stay whenever she needed. Every night, Nyah would make the trek up to the hospital to see me bringing with her big smiles and love (although it could easily be said her biggest motivator was the custards and jelly she knew I kept for her). We tried to spend quality time together in those moments, crafting, reading, talking; but it was never enough for me. I was and still am a shell of the mother I was, that I prided myself in being, and that I loved being more than anything else in the world. Some nights, I couldn’t even stay awake long enough to say goodbye. I will never forget the day Ben and I sat her down and explained to her what was going on, and that soon I would be going to heaven. She knew exactly what it meant. Oh god did she know. My heart broke into a thousand shatters at the sheer thought of a little 5 year old heart having to face such a loss. As her mummy, my most important job is to protect her, yet here I am causing her the worst pain one could ever imagine. I can never protect her from this, and these thoughts are something that still bring me to my knees every single day.

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Fast forward almost a year and I’m still here. None of us really know how. I think I’ve started to become a bit of a pain in the backside for my Oncologist. She has had to change up my chemo a few times, but  has nothing to base her levels and amounts on because no one else has made it this far. I’m now on my fourth type of chemotherapy, and a few months ago she gave me permission to hope for a year. Hearing those words come out of her mouth was amazing yet exhausting. I’m so proud to think that I’ve managed to swap the word ‘days’ for ‘who actually knows?’. It’s exhausting though, because living with terminal cancer is hard work. Everyday my body seems to break down more. I struggle daily with fatigue, pain and swelling, high blood pressure, and now diabetes (which has been triggered by long term steroid use). I don’t know what its like anymore to get a full nights sleep and actually feel energised, or not have some part of my body hurt. I’m going to toot my own horn a bit and agree with my hubby who likes to say I make this “shit look easy”.  Although I no longer work, and need a daily nap, I still function pretty much like a normal person – getting Nyah to and from school, busy with lots through the day, cooking dinner most nights, etc. You will rarely find me standing still or resting unless I’m forced to. I try hard to not let cancer take any more of my life than what it has, which I can assure you is a lot. Sometimes though, I feel like I’m not strong enough. But then I remember who is watching, and that it’s all for her. Nyah deserves to have a proper mum and I’m determined to give her that for as long as I can. I’m not the biggest fan of the word fighter because what does that then mean when I go? Does that mean I wasn’t strong enough or didn’t fight enough? – because I can assure you that will never be the case.

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So there you go dear reader, a hugely long first blog with so much more to share. I don’t promise it will always be well written, or even worth reading for that matter, but what I can promise you is that I will be honest, and maybe change the way you offer support to someone you know with cancer. Or maybe you have cancer yourself and can relate. Sometimes it’s nice to know you’re not alone.   

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With hope,

Lynds xo

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43 thoughts on “Welcome to LyndseyLand

    • My heart and prayers go out to you, can I please suggest you to look up a lady on you tube called kat kerr and watch her I am sure it will bring you all some comfort and what she speaks of its true as I’ve seen some of the things myself before i even heard her God bless you. ♡

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  1. You are beyond amazing and more than an inspiration to me and so many others. Always thinking of you – sending love & strength and prayers xxx

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  2. Such an honest and heartfelt post. Along with your list of amazing achievements, caring wife, beautiful mother, and thoughtful friend, you should add amazing writer to the list. Keep writing. x

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  3. Lynds, I think of you often, very often and go to reach out to you but I never know how to adequately express the impact you have had on my life. How do you thank someone who inspires you to be a better person, a better wife and most importantly a better mother. You inspire me to be in the present moment, to be grateful, to appreciate life, to not sweat the small stuff and to live life to the fullest. Lyndsey you have left an impression so significant that it had not only changed me for the better, but my family and generations to come. And I KNOW that I am only one of a large number of people who feel the same way. By being you, you have made the world a better place. WHAT A LEGACY.
    Be proud.
    Stand tall.
    Stay strong.
    We love you.
    Xxx

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  4. words can’t describe how proud your family and friends must feel. Your a special lady with lots of
    love around you.
    Thank you for sharing your journey with us xxx

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  5. Stay strong, your strength is so inspiring, it’s nice to have a small insite to what is happening for you and how it’s all taking place. So glad to hear you’ve been given an unknown timeframe I can’t imagine what that feels like xx your daughter is very lucky to have you 😊

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  6. This was so hard to read, with a little girl of my own I couldn’t even begin to imagine your pain there alone, you truly are an inspiration Lyndsey and are so blessed to have such wonderful support, sending you all my strength to get you through each day, much love from Christina and Georgia ❤

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  7. It is hard 2 sum up your journey thus far in a single word. I will however reflect on a fundraising night that I had the privilege of attending when a community got 2getha and dug deep. That my friend was truly inspirational and showed how much you have touched the lives of others in such a beautiful & very special way. I wish you well in your journey moving 4wd. Biggest hugs positive thoughts & love Cathie 💜💜💜

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  8. I put down my trashy romance that I religiously read with my morning coffee and read a long awaited real life romance filled with love tragedy and 2 heroes. I cried, laughed and gushed over the love you and Ben have. I know it is sometimes hard to share but there is a strength in your words that I have no doubt has helped someone with their own personal struggles. Looking forward to your next post xx Megan.

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    • Beautifully written lyndsey I’ve only ever known you to be a strong and determined person right from a little girl . Whenever I see you my face lights up because your smile is infectious 😊 I love your blog thank you because it does help others understand I too have had breast cancer and that Surreal feeling that’s haunts you and takes away apart of you you’ll never get back . I know I’m stronger for it but you lyndsey you are just so beautiful, amazing, inspirational and I’m so honored to have you in my life xx

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  9. Absolutely beautiful reading just like you. You are such an incredible inspiration to everyone out there and I am sure your story will reach and inspire many others on this same heartfelt journey. Thank you for coming into our lives years ago when you did…to have touched the hearts of all our family with your love, friendship & kindness. I love you, Ben & Nyah and think of you always Xxx

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  10. Awesome story of shear will and determination.I lost a good mate to cancer after diagnosis he lived for 3months and I wish the very best for you and your family.Just reminds me how bad things are and how the little things in life are so imprtant.best of luck

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  11. You are just amazing Lyndsey! You are the bravest person I know and I am so glad to call u a friend and that you get more time with your family especially nyah! U brought me to tears with this blog and you are so insperational. Love you xx

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  12. Thank-you for sharing your journey Lyndsey. I felt incredible sadness, a strong strong spirit, oodles of love and overcoming hope. Xxxx

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  13. Your strength and determination is amazing! An amazing story. Hoping you continue to defy he odds and share many more months with your family.

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  14. Heart- wrenching and beautiful – I cried so much my contact lens fell out. No comment could possibly do justice to your story and the courage with which you are living and sharing your life. You are a remarkable and inspiring lady. There are no words that can come close to the depths of emotions reading your post has stirred in me x

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  15. Lyndsey, your first post was so touching it brough me to tears more than once. You are so strong to be keeping it together as much as you have been. I had no idea the awful things you’ve gone through since your diagnosis. I’m praying for you and sending all of my love and strength and positive thoughts your way. Thank you for sharing your journey so honestly, I’m sure your writing is going to help a lot of people. Xoxo

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  16. Lyndsey your smile radiates positivity and you have faced this challenge with such dignity and strength.
    I think of you always. Xox

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  17. You are amazing. To let us into your private world of pain so you can inspire others. You are my hero and someone who I look up to. You are so much stronger than you know. I wish you and your family love, hope and prays. Keep up the good work.

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  18. Your amazing young women and i am alighted to have u in my life as an amazing friend. I know this journey u are on right now is tough but my darling lynds u are not alone please know that, ee are all behind u with this battle. You have amazes yourself, your doctor and all of us how far u have come. All these extra special occassions u are still here to see are just a miracle and fabulous. Your fight, courage, your strength just amazes me everyday. People take life for granted and you just fill yours and our with happiness with that amazing smile that shines everytime we meet. Lyndsey we love you and are so proud of u keep fighting darling we are here to fight with u. Love u xxx

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  19. Lyndsey….
    My gosh, i am in tears.
    I often think of you, and now that i am a mummy, i think how hard it must be to live knowing that you must leave Nyah one day. I cannot even begin to fathom the weight of that. How you manage to stand so tall and strong, and fight so hard is beyond me, and so truly inspirational.
    You really are one of the most amazing people i know, and you are leaving an astounding legacy for your little princess. She must be so proud of you, along with the rest of your family.
    Big love xx

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  20. I’ve been humbled and left full of admiration from your tale. I’ve been in a pretty bad way medically speaking but life is getting better everyday. I had a pretty bad car accident almost 21 years ago, I actually stopped breathing for over 8 minutes, it was thought I’d never walk again & to this day have several silent, invisible disabilities. The truth is you’ve humbled me & I wish to return the turn you did me. In the weeks of my coma I was spiritually in a good place. I felt comfortable, content & secure like a babe does in a mother’s arms. I’m hesitant to put a religious slant on this because religion is a deeply personal thing and there’s a whole variety of beliefs. Just know this then, mortal life isn’t the end when it expires. Mortality is but a cocoon and we are caterpillars to become butterfly’s. I’m telling you this not for yourself to take comfort from, but so that you may have assurance that your loved youngun will ultimately find security, love, comfort & warmth.
    I’ve already died once and I’m in no hurry to do it again but because of my experience I’m not afraid of death and look forward to one day feeling that security & comfort that experienced. One day we’ll all be butterfly’s together.

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  21. Wow Lyndsey that was absolutely beautiful and so touching! I can’t even imagine how hard this must be for Ben Nyah and yourself!
    You are most definitely the most beautiful and strongest person I know!

    Sending hope love and best wishes!
    Keep fighting xx xx

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  22. Thank you for reminding us everyday not to take things for granted, the little things that are sometimes forgotten become so important when thinking of you.
    Your strength is an inspiration to Nat & I everyday, and we truely thank you for that.
    Love to you and your beautiful family. Xxx

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  23. Beautifully written Lynds and yes you made me cry again. You make me wonder if my Mum had these thoughts too. Love you to the moon and back.
    Kaz xxx

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  24. There are no words…. I can only imagine…
    My sister in-law past away from cancer a year ago… She was a beautiful mother who left life way to early. Her son has just turned four.
    Thank you for sharing your story with the world.
    Xxx

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  25. I’ve been tuned into your story through my wife Rebecca. I just noticed the link to this page through her Facebook, I had no idea the journey I was about to get myself into when I began to read.
    I’m a man who doesn’t cry! But was uncontrollable and had to try to compose myself a few times to try and read on.
    I feel so inspired live my children and wife so much more and treasure our time and experiences as though every moment is a gift.
    Suddenly fights with my wife don’t seem very important.
    Today is a new day. Thankyou so much for your story.

    Luke

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  26. I read somewhere that ” Life is not measured by how many breaths we take, but by the moments that take our breath away” Your raw writing has just taken mine!
    As Christopher Robin said to Pooh.. ” you are braver that you believe, stronger than you seem and smarter than you think”
    Lyndsey, you are one special lady. Sending you all our hope and positiveness. x

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  27. Absolutely amazing, I don’t think I have ever read something that is as honest, touching, heart wrenching and moving as your story. Thank you so much for sharing your life, you are a beautiful woman, person and most important a Mother. Thank you again for allowing me to be a small part of your life, you are truly an inspiration to everyone xoxo
    Luv Beth

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