I THOUGHT I knew what rock bottom felt like.
In the five years since I was diagnosed with stage 4 bowel cancer I thought I’d seen my lowest point, the darkest of times.
I’ve had countless moments where I’ve questioned: ‘Can I do this anymore? How do I even breathe today, how do I carry on?’
But hindsight is a funny thing, and looking back now I find it hard to believe I thought those moments were hard.
Of course, at the time I believed each moment was my rock bottom.
I was blindsided when I was first told I had incurable cancer, and I had no idea how to cope after waking up from my first operation.
I had never really had to face surgery before, and could not understand how anyone can function or mentally get through it.
I never believed life could get worse than the moment when I had to tell my very young children that mummy had cancer.
I struggled to see that anything was worse than the countless chemo reactions, hideous side effects and emergency crash teams saving me.
Feeling like I just couldn’t go on has become something of a permanent state of being.
But in all my five years of living with incurable cancer, I’ve never felt like it wasn’t all worth it.
I’d always remind myself that while I felt like I couldn’t go on, that as hard as it was, I had options.
I still had a fire burning in my belly, a little voice in my head telling me: ‘Deborah, dig deep’.
I told myself that if I was lucky enough to be granted another day when treasured cancer pals were having theirs whipped away, in their name I would carry on.
But recently, I hit a new low – a new rock bottom.
How can things get worse than this?
Maybe I’ll look back at this rock bottom in months to come and wonder how I ever thought it was the lowest of the low.
But, to be honest, I am not too sure how things can possibly get much harder – physically or mentally.
For the first time in five years I felt it just wasn’t worth it.
I felt like the mental and physical trauma of cancer treatment, desperately trying to fight a body that is clearly trying to kill itself, was just too much.
For more than just a fleeting second I felt something I’ve never felt before, I felt like I wanted to die.
I questioned whether what I was experiencing was worse than the thought of death?
And as I lay in my hospital bed, having had my life saved by a team of incredible trauma medics, following a horrific internal bleed, and enduring three weeks of operation after operation, I knew I was thankful.
I was shocked at how I was still alive.
And yet, I kept having fleeting moments where I simply could not see a pathway through.
Was my life going to be all about sustaining a dying body? Could it ever be brought back to life?
If I did get another go at this, was it simply a matter of time before I had to watch my own demise once again?
Would I ever have a life worth living again?
When you are stuck in a hospital bed staring at the same four walls for days on end, your mind runs away with you.
It ends up being the small things that crack you – the daily cannula that breaks, the fact that the pain is so unbearable you would rather be knocked out.
I lay there facing the mental torture of being desperate to see my kids but longing for them never to see me in that state.
It felt like my dignity was gone.
I remember having the strength to stand up with help and sit in front of the bathroom sink to clean my teeth.
I sobbed because I didn’t have the strength to hold the toothbrush.
I looked in the mirror and all I could see was the reflection of an exhausted person, emaciated and dead behind the eyes.
It didn’t look like me.
It was a shell of a person, a skeleton, that resembled a girl I once knew, sitting there with a hospital wristband on.
How could I go from someone who six months ago was vibrant, full of life, loving life and making the most of every day to a frail shell of a person who might crack at any second?
I was broken.
There were moments when I wished I had died as a result of my medical emergency – even writing that brings tears to my eyes and I am flooded with guilt.
Lying in that hospital bed I wanted my mum to take me home to die.
I wanted out, I wanted to rip out all the tubes and get into my own bed to say my goodbyes from the comfort of my own home.
I wanted to close my eyes forever.
I didn’t know how I would ever find a will to live again. I cracked.
One morning, I remember my oncologist and his team came to see me to discuss my discharge and next steps.
I burst into tears, they were saying good things but I just couldn’t fathom how I could do it.
My body was failing, my mind was failing and I just wanted to close my eyes and never wake up.
I was so tired of fighting, of trying and failing – I just couldn’t do it anymore.
The team crowded around me and just held my hand.
My oncologist reminded me that I am only human and that what I was going through was really hard.
It wasn’t just in my head, it actually was hard and I was doing OK.
I was discharged a few days later, when it was medically safe, because I had to live my life again even if it was from my sofa.
I had to remember why life was worth living.
Last weekend, when we hit 50 days of 2022, I realised I have spent 35 of them in hospital and the other 15 mostly asleep on my sofa.
I am fully aware that it might sound good by some people’s benchmark, but for me I need to know what life beyond my sofa looks like.
Spark of hope
It’s seeing those seedlings of a life that might be possible, that stokes the fire within me again.
My aim for this year was to be back on treatment, whatever it looked like.
After a series of setbacks, I was hoping my body would play ball long enough to get back on chemo.
But, as my medical team always reminds me, it’s a balance weighing up the risk versus the benefits.
That is, the risk of chemo and treatment actually shortening my life – say if it causes another bout of sepsis or my liver can’t process it – versus not having treatment and letting my cancer grow.
It wouldn’t matter if I had all the money in the world, and access to the newest groundbreaking drug on the market.
If my body can’t mechanically process treatment then I have no options.
I’ve faced a constant battle between my cancer and the side effects – colitis and a massive internal bleed get an A* for trying.
My odds have been thin, but last week they started to improve.
I started on treatment again, it’s what’s called a ‘re-challenge’.
It means I’m back on a drug combination that has previously worked for me, one that did stop working after a while.
In theory it can work again, but I don’t know what the odds are and there is little data. So once again, I am a living scientific experiment.
Has it been tough so far? Yes!
I’ve been in hospital everyday to get antibiotics into me and I’ve had another operation to repair the varices in my oesophagus that bled.
I’ve endured a really painful skin flare up that left me in floods of tears, I’m shattered.
And yet, once again I can feel that little glimmer of spark in my belly, burning.
Perhaps it’s getting back onto treatment – a milestone I’ve aimed for, for six months and one I didn’t think I’d reach.
Do I still feel like I can’t take it anymore? Hell no!
Is it all worth it? I bloody hope so.
Maybe it’s down to the rebellious hope I hold onto, and maybe all I needed was a tiny spark to reignite that hope.
I’ve had a hideous start to 2022, but now I am hoping life will glimmer through that dark cloud to remind me of the beauty of it all.
Just another day? I’ll take that, thank you very much.
It’s my biggest dream right now.
