I’VE completely lost count.
Almost four years after being diagnosed with stage 4 cancer I have had countless operations, scans, chemo sessions and drug treatments.
What I do know is that as of last Thursday, I’m 17 tumours down and counting.
By now I should be used to it, but regardless of how many times I turn up at The Royal Marsden, it never gets any easier.
Each time is as terrifying as the last. I worry I won’t wake up, I convince myself something will go wrong and I won’t see my kids grow up.
This time was even harder, not least because of Covid.
I had hoped to get through the pandemic without needing an operation and I was doing alright until a few weeks ago.
While I can celebrate the highs, I have come to learn the next low is always just around the corner.
For the last 16 months I have been on some game-changing drugs that have put my aggressive and incurable cancer to sleep.
I’m already living in a future I never imagined I would see, I’m alive when I should be dead.
When I was diagnosed with a rare form of bowel cancer, known as a BRAF mutation, on paper I probably had about a year to live, if that.
So, I am beyond grateful to still be here.
'FREE OF THE BEAST'
Having said that, my cancer doesn’t make it easy. It refuses to play ball and this year was no different.
I’ve been really lucky and had lots of positive scans, and twice I have heard those magic words: “No evidence of active disease”.
In layman's terms it means I was cancer “free” on two blissful occasions.
Yet, while technically on paper I was free of the beast, I know there are always small cancer cells lurking deep inside my body just waiting to wake up.
Those cells have popped up as tumours in my bowel, lungs, liver and nodes, and each time my wonderful team of doctors think we’ve cleared one organ of cancer, something else crops up.
CELEBRATE THE HIGHS
So while I can celebrate the highs, I have come to learn the next low is always just around the corner.
And that’s where I found myself last week, at the bottom of yet another mountain I wish I didn’t have to climb, facing yet another operation.
Though terrified, I was acutely aware how lucky I was to even get the chance to have the operation.
The fact I have been ‘stable’ for so long meant I got that chance.
Too often cancer patients are told their tumours are inoperable – I’ve heard it before and it’s not a good place to be.
It sends me in a downward spiral, consumed by the fear that my cancer is in there running riot, while my surgeons are powerless to stop it.
During the first national lockdown I had four active nodes that were blasted with some radiotherapy.
And with that I was back to having ‘no evidence of active disease’. Win.
GLIMMER OF HOPE
But just before receiving my latest scan results a week or so ago, I said to my oncologist that I’ve never had two disease-free scans in a row.
I never let go of the tiny glimmer of hope, but of course my suspicions were right.
There was one small active node in my chest, near my heart – so on the sliding scale, it was manageable, but a challenge nonetheless.
This time I was offered a keyhole op to remove the offending node and surrounding tissue in my chest.
I grabbed the opportunity with two hands, despite facing it all during another lockdown and with the added complications Covid brings.
Straight away I could feel the fear reawakening deep inside me. What if I don’t wake up? What if something goes wrong? What if I don’t see the kids grow up?
Then I had to face the added fear that Covid brings.
I had to move out of the home I share with my husband Seb and our two kids, Hugo and Eloise straight away, and stay with my parents.
At this stage I hadn’t even told the kids I needed an operation.
I had to make sure I was Covid-free before going into hospital, and living with my kids was too big a risk, given they’re basically walking snot bags.
I knew it would be awful being away from them, and it has been, but they are why this operation was so important.
They are my life force, the reason I refuse to leave any stone unturned when it comes to fighting my cancer.
So even if it meant weeks away from them, when I got the call I knew what I had to do – for all of us.
I also recognised how lucky I was to get the chance to have an operation during a global pandemic.
Hundreds of thousands of cancer patients have missed treatment, millions have missed screening appointments, and the collateral damage on patients like me is going to be catastrophic.
But feeling lucky doesn’t make it any less scary.
I had to go into hospital on my own, and I wasn’t allowed to see anyone in my haze of post-operative drugs when I felt anxious, couldn’t sleep and was beside myself in pain.
Lying in ICU recovering, it was hard to remind myself of the bigger picture, of how lucky I am.
I had countless drains coming out of me, I was in agony and surrounded by machines beeping constantly.
It was mentally very difficult, I had no one to sit beside me and hold my hand, no one to tell me it was all going to be ok.
Thank goodness for the incredible team at The Royal Marsden, the nurses, doctors and all the staff who were there to pull me though.
It’s thanks to them that I’ve emerged from yet another potentially life-saving operation like a disheveled moth (butterfly would be far too generous).
I am so grateful to see the other side, albeit the painful part, and arguably for me the most important part of the whole thing – my recovery.
In order to get the tumour, my surgeon had to deflate both my lungs and insert all sorts of tubes and drains.
It was a success and he is confident that we’ve managed to remove all the visible signs of active cancer.
I should be on cloud nine, and I am (partly thanks to the pain medication). But, my biggest fear is now playing out as we speak.
It’s easy to think given it was a success that I’m cancer ‘free’ again.
But, my reality is I will never be cured, my cancer will never go away – I will always live with it, for as long as it lets me.
Being stable is the best a patient like me can hope for – and that means being on treatment.
I can and I must rebuild my body – and it means pulling myself off the sofa each day for a short walk to get my battered lungs moving again
For the last 16 months the only thing keeping me alive is my drugs.
It’s pretty simple, without the drugs I’d be riddled in no time at all.
But here’s the catch. In order to have the operation last Thursday, we had to gamble.
We had to stop my drugs so I could have the surgery.
So now, I am in a race to recover and fast. Because every day that I am still not on my drugs, there’s a chance my cancer is growing again.
The longer the break in treatment, the more dangerous it could be.
SUMMIT OF THE MOUNTAIN
So just as it looks like I’ve reached the summit of my latest mountain, I face my next challenge.
I can and I must rebuild my body – and it means pulling myself off the sofa each day for a short walk to get my battered lungs moving again.
I need to get back to a place where it’s safe for me to start my treatment again.
Thankfully, I have my family beside me every step of the way.
While I am still separated from my kids, I have been so lucky to spend this time with my parents.
We’ve always been close, but to sit around a dinner table just the three of us and talk to each other about my childhood, my grandparents and our past has given me more strength than I realised.
My kids are robust, I think it’s probably been harder for me being away.
I could get angry again that Covid is robbing me of more precious time with my children.
But it could be this operation that gives us just that – more time.
When I first met my surgeon Simon Jordan just after being diagnosed, I was finding it hard to get my head around it all.
The woman he met then is very different to the one he has just operated on.
Knowing it was Simon that was going to operate on me again, in the hope of giving me more time, was a huge reassurance. It took me back to where it all started.
Everything has changed, and yet so much remains the same.
My family are everything to me, they are the constant throughout all of this. They have picked me up again and again, without fail and often without me asking.
I’m not sure how I would put one foot in front of the other without them.
So, it’s for them that I will go to hell and back again if it means I get to live more days, weeks and months by their side.
I treasure all the little things these days, from a dance with Eloise to a run with my son, making Christmas wreaths with my mum and enjoying a bottle of wine with my husband.
Cancer taught me that, and Covid has only served to reinforce it.
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