An anniversary with a difference

Yesterday was my 9-year-cancer-versary.

The irony is not lost on me that my diagnosis came on the 13th… unlucky for some right? But at the time I remember it being something of a relief after being in hospital for a day and night with only the clothes I was stood in, a phone with no battery and no idea what was going on before being told at about 1 in the morning that “it’s serious, it could be something like leukaemia, lymphoma or HIV” by a less than helpful doctor with a below par bedside manner.

9 years isn’t exactly a major mile stone is it? But it feels it as at the time I had just started my fourth and final honours year at uni and my all important and exciting 21st birthday was looming, and this time, it’s my 30th birthday approaching.

Looking back now, I realise a lot of my twenties were tainted and affected by this, probably more than I realised. A time when I shouldn’t have had a care or worry, I had far too many. I’ve always said that having cancer in many ways made me better, stronger. To borrow a phrase from my dear friend Corrie (who also overcame it recently – I know, we’re a rather unfortunate bunch) I’m a “thriver, not a survivor”… but still. It left some ugly scars. Maybe some that I didn’t even recognise till years later. Until now when I look back at behaviours (some destructive) and the shit show of emotions that I had no idea what to do with. Maybe this clarity comes with time and emotional maturity?

At times I have felt like I was robbed. I no longer looked the same, I was devastated. I still joke now that I peaked at 20. I joke, but it’s also a bit of a kick in the gut. Vain? Yeah, perhaps… But it felt important. And so, a lot of my 20’s has been spent readjusting to a new me. Shaped first with cancer and chemotherapy and central lines and steroids and immunotherapy then secondly with pregnancy and babies. The former can feel unfair, But at least the latter is easier to reconcile in my head.

Robbed of time – Long months spent in hospital full time (7 in total) when my friends were able to carry of with their studies and travels and life. But then also diving head first back into ‘normality’ (or at least some semblance of a new normal) once i was released following cure. Real life is tougher than it seemed. All the emotions. All the fear and trauma of what had gone but also what might come back. None of which were dealt with, just packed away in a little overflowing box. Only now looking back, I realise I struggled. The ‘semi-woke’, or maybe just maturer, person in me today recognises that I could probably have benefitted from some help back then and there would have been no shame in that. But ‘throwing myself back in and hoping for the best’ seemed like the best way to cope at 21.

Time has helped. Maturity, and emotional maturity, has helped. A sense of new perspective has helped. I no longer have the same dread looming over my life. For a long time, I had a (somewhat secret) fear of relapsing, a fear of something else cropping up, because of course the cruel irony is that cancer treatment often causes… well, more cancer (that’s great isn’t it?). Sleepless nights spent dangerously scrolling the internet looking at survival rates beyond 1 year, beyond 5 years, the fact that the little cocktail of chemo drugs while saving your life can screw your heart up and shave some years off your old age (if you make it that far in the first place… ) of course, this was mostly kept to myself though because no one likes a hypochondriac Debbie Downer, do they? Over time I have become more able and equipped to rationalise these feelings to find ways of dealing with them and in the past few years, find ways to stop myself projecting them onto my children. AML is caused by a chromosomal mutation, but it’s not genetic. But often, that doesn’t stem the flow of worry after worry… but I’m getting there! Nowadays, I’m less likely to google every damn symptom… When I get a cold. I’m not constantly poised, ready for my body to betray me. I’ve found a sense of peace, which was at first, in the years following treatment, forced, but now just natural.

Most scars have healed. I’m able to look at cancer again. I didn’t want to for a very long time. I can look at other peoples stories, struggles, tragedy and scars now. That’s new. For a very long time, it was still too close and I needed to protect myself. But maybe that was healthy or just necessary.

Cancer has not defined me, but it has changed me in lots of small ways, and I can still see some of those are for the better.

A quick google (lol, as if I actually had to google… it’s not like I’ve not googled it approx 7800 times over the past nine years) tells me the AML survival rate post 5 years averages out at about 20% well, 👋🏽, here I am… and you know what? Some days, just some, cancer doesn’t even enter my head at all anymore (If you’re in the throws of something similar now you might not believe it to be possible. I didn’t)

And so, I’ll be moving into my 3rd decade (and tenth year post cancer diagnosis) feeling like I’ve reclaimed myself. I’ve let go of the resentment I’ve felt for my body and my lost time. Cancer will always be part of me, and the memories will always be there alongside the knowledge that treatment can ultimately be “life limiting”, but I’m not as scared.

So I suppose, in some ways, this does feel like a milestone. Most of all, I’m the happiest I’ve ever been… and man, I’m beyond grateful for life. ✌🏼

Well done making it this far, I don’t half harp on…

Lou x

Time: An Instagram Filter for Life?

Forth Trimester
Ft: Fourth Trimester Magazine

Sugarcoating Life

Last March I wrote a blog post about my experience of overcoming cancer in 2011 and my feelings towards it now when I look back. Well, recently I’ve been thinking even more about it.

However, this time I’ve been trying to remember the true reality of my situation. I can’t help but think that time somehow filters the truth, the harder aspects of an experience. Hindsight sugarcoats what was a truly terrifying time of my life.

I can only liken it to how we look back on our days with our first newborn. We remember all the love, sleepy cuddles and (in my case) the box sets, maybe over time we filter out the memories from the nights where we just couldn’t get that little baby to stop crying and settle. The 3am’s when we’d have a wee cry ourselves – purely from exhaustion… Time is basically like Instagram’s Valencia filter.

Do we do this in all aspects of our lives? Maybe it’s ultimately for the best? It enables us to move on, retain our fond memories and maintain a positive outlook. What is it they say? – what doesn’t kill you makes you stronger? However, I wonder if it’s sometimes worth reminding ourselves of the hard days to give ourselves some perspective, and after all, we survived them, didn’t we?

The Good, The Bad & The Ugly

I’ve been thinking about how we help people that are currently in the throws of those hard days. As my friend so eloquently put it the other day – “those that are wading through treacle” – whether it be parenthood or something else – and thinking about the advice I offer them.

I have talked about the positive outlook I tried to adopt throughout my cancer treatment (I’d say “journey”, but I still kinda hate that word), but it’s not completely realistic, is it? Of course now, years down the line, I say things like “the whole experience really changed me for the better” but, in reality, life would have been a hell of a lot easier if it hadn’t happened. At the time, that positive outlook wasn’t always sustainable – it didn’t stop me worrying and feeling truly terrified of what lay ahead, whether it be weeks, months or years down the line… or in the darkest times, wondering if I’d even have years.

The people around you in your time of need always mean well, but let’s face it, there ain’t a manual. No-one knows what to say, and most of the time I didn’t know what I wanted them to say anyway. It was the blind leading the blind and unchartered territory for everyone involved.

And so, everyone meant well when they gave positive affirmations like –

“you just have to stay positive”

“knowledge is power, now you know what you’re facing, you’ll beat it”

“you’re going to be ok”

“stay strong”

… And 90% of the time that’s exactly what I needed to hear, to reinforce some positivity. However, it was not always what I needed.

Ft: Fourth Trimester Magazine

Sharing The Burden

Sometimes we need to just be sad and allow those scary feelings to creep in – and share them. Let someone else pick up even just a small piece of that burden, after all, you’re living with that as a reality. It’s the least they can do!

Same in parenthood, isn’t it? You know when things are tough that they’ll get better – “this too shall pass” and all that – but sometimes you just want to have a moan and a cry about it, and it doesn’t make you less than the next mother. Doesn’t make you less of a parent or a Negative Nancy. We’re all human.

It’s just made me think – Next time someone shares with me the experience that’s getting them down, or a struggle that they face, I will bite my tongue and fight the urge to offer a positive affirmation in the first instance. Instead, I’ll encourage them to offload some of their mental burden onto me. Tell them it’s ok not to be ok. I truly believe in the power of a positive mental attitude. I know it helped me to deal with my situation and brought me through the other side knowing that I can deal with most things life might throw at me in the future… BUT, no one can harness that positivity 24 hours a day, 100% of the time. And that’s ok.

Lou x

That Time I Had Cancer

Your life is your story. Write well. Edit Often. 

In September 2010 I started back at uni ready to smash my 4th and final Honours year at the University of Glasgow. It kicked off the same as the years usually did, with lots of nights out, visits to The Arches and jugs of Vodka Red Bull…

A few weeks before my diagnosis

The fun however was to be cut short a few weeks into term when, after a spate of infections, breathlessness and flu like symptoms, I was diagnosed with Acute Myeloid Leukaemia (alongside a rather nasty dose of pneumonia). It was a Wednesday, and by Friday I had been moved to the Beatson West of Scotland Cancer Centre in Glasgow to start treatment the following Monday.

Overnight, I went from trying to pick a dissertation topic at University to being told there was a very real possibility I could die. Funnily enough, that turns your world upside down!

I remember in those first few hours of being told why I was so unwell and the treatment I would have to endure one thing rang loud in my 20 year old head – Would this mean I won’t be able to have a family? At 20 this was not something high on my agenda. Robin and I had barely been together 9 months and that relationship had been long distance as I studied in Glasgow and he was training on the South coast, but still, I knew it was something that I wanted in the future and the thought of having that choice taken away from me was such a shock. My chemotherapy was scheduled to start 5 days after my diagnosis so having eggs frozen was not an option, I didn’t have that long, my blood was useless and even a minor infection could have been fatal.

For the first few days I allowed myself to panic, to cry, to be sad, to be scared. For the hypothetical kids I may have one day had, the final year of university that I was missing and at the even darker points – the life I might lose. Then I started fresh – there was work to be done!

As someone who had never spent even a night in hospital, or had blood taken, or any real medical procedure this was all very alien to me. Being poked and prodded to within an inch of my life before having a Hickman Line fitted (a central line inserted near your collarbone and threaded into a large vein above your heart under local anesthetic). I wrote down questions, I made notes of the answers, I read every piece of literature I had and I equipped myself with as much knowledge as possible as my first round of Chemo commenced… This was followed by one of the greater milestones in a ‘cancer journey’ (eye-roll at the use of using the word journey) – the hair loss. I prepared by cutting my hair short and then when the clumps started to block the drain of my hospital room en suite I took the plunge and got it shaved off by one of my many lovely nurses. It was done and dusted and no where near as bad or emotional as I had expected. Looking back, I think I was quite shy about my wee bald noggin. I wish that I had more pictures + documented it. I may have had one or two, but due to new laptops, new phones and the lack of the wonderful Cloud… I have no idea where/if they exist. If I had them now I would flaunt them proudly because they would be a reminder of a strength in my character that I didn’t know was there.

My wig courtesy of the TCT – not sure what’s happening with my face…

As a permanent in-patient basically living on a Teenage Cancer Trust ward (they’re amazing by the way – if you ever see them fundraising and have a spare quid – chuck it in the bucket) there was ample opportunity to mope, but early on I realised that that wasn’t an option for me. Kinda like when you have a bad hangover and you feel 100 times better after a shower, I tried to keep my days as normal as I could by getting up and ready and slapping some makeup on. I would say I tried to keep active, but by that I just mean I didn’t lie in bed, instead I would watch endless episodes of 24 (to this day, that boxset is one of the best gifts Robin has ever bought me) in the TCT lounge. I actively worked to maintain a positive attitude and developed ways of coping, while focusing on the present – all of which, I’ve since found out are related to Mindfulness (I didn’t realise at the time it was a ‘thing’).

Each of my 4 rounds of chemo wiped out my immune system entirely and I was susceptible to anything and everything (Cue the time they thought I had chicken pox and was put into isolation on an infectious diseases ward – spoiler alert, it was just a spot. Or the time I had swine flu. Oh, or that time I got sepsis…) But with each I felt positive that I would achieve and maintain remission. My friends were such a massive support and visited all the time, this was a stark contrast to a young girl that I shared a room with toward the end of my treatment, and it definitely made me realise how lucky I was. Not to mention Robin, who was there every step of th way to watch ’24’ with me!

And finally, after –

  • 6 Months
  • 184 Nights (probably at least 170 of those actually in hospital)
  • 4 Rounds of Chemotherapy
  • 1 Drug Trial
  • 4 Wigs
  • 10 Bone Marrow Extractions
  • 2 Hickman lines
  • 70+ Units of A- Blood (I did try to keep track… until I lost count)
  • Countless Units of Platelets
  • 3 ‘Roommates’
  • 1 Christmas
  • 1 Birthday (my 21st)
  • 8 Seasons of ’24’

… I was released back into my natural habitat. I had a new confidence in myself and my capabilities and realised, as cliché as it sounds, that life really is too short. Sure, it would have been cool to not have had to go through 8 months of grueling treatment to find that out, but nevertheless, it changed me in so many ways. I am also glad that it happened when it did. It happened at a time when I had no responsibilities or financial obligations. I could focus entirely on myself and getting better. I would like to think if it had happened at any other time there would have been the same outcome, but I don’t know for sure. The thought of going through it again now terrifies me.

The strength that I gained from the experience I used once again when I became a Mum. On the days when I struggle to find any self-love and nothing seems to be going right (and there have been many) I remember how much my body has been battered before managing to create and grow a little human and the positive attitude that had got me through it mentally. All 3 chemotherapy drugs I was given carried “moderate to high risk of infertility” so I know we are very lucky to have Oscar. I hope we will be as lucky again, but who knows. For now I’ll just be thankful I’m here…

Ko Phi Phi Don, Thailand 🇹🇭