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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.