Living with stage 4 cancer means I live in constant fear of dying – my tips to cope

THERE'S nothing scarier than dying.

Or so I thought, before getting cancer. It turns out living with that death sentence is pretty terrifying too.

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Since being diagnosed with stage 4 bowel cancer, two-and-a-half years ago my levels of anxiety have gone through the roof.

My outlook on life drastically changed, I was forced to live for now and make the most of every moment.

But with that came a whole new level of fear.

I live in a constant state of fear now.

I'm scared my treatment will stop working, I'm terrified new tumours will pop up somewhere new, but most of all, I'm beside myself at the thought of not seeing my kids grow up.

Constant state of fear

Some days I'm better at ignoring it than others.

But on those days where I can't help but be consumed by my fears, it can be hard not to just run and hide.

The summer started with a treatment break, only four weeks but a month is a long time in my world.

The novelty of not having to go to hospital meant I was free. Or at least I felt free.

Faced with that, I've had an overwhelming urge to run away.

Cancer comes on holiday

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I made a conscious decision to take time off from new work projects, to spend time with my kids and try to escape my cancer.

Problem is, cancer doesn't just disappear when you go on holiday - it comes with.

Believe me, I've tried really hard to pack my fears away but they just keep popping back up.

When it comes to cancer, it's a roller coaster of scans, fear, heartbreak, fear, treatment, fear, side effects... the list goes on.

Day-to-day I've learned to park my crippling anxiety and plough on anyway, smiling.

Because this is my life, it's the only chance I get and I want to make damn sure that I make the most of it.

I'm no expert, but I've picked up a few coping mechanisms along the way, while navigating my way through the mess in my own way.

So here's my top tips to face your fears, and live with cancer:

1. 'Scanxiety'

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In the working world, you're only as good as your last big deal, performance or target.

When it comes to cancer, you're only as good as your last scan.

I will never get over my 'scanixety', and I don't think I'm alone.

People will tell you not to fear scans, that you can't change the outcome.

I’m scared my treatment will stop working, I’m terrified new tumours will pop up somewhere new, but most of all, I’m beside myself at the thought of not seeing my kids grow up

But, in my experience that's rubbish. How is it possible to not fear something that could predict if you'll be alive next year?

Scans are the windows I live between. Some have the luxury of a six-month window, others a six-week one.

All I know is I limit the time I worry.

As soon as the fear creeps in, I have a word with myself and remind myself, 'You were scanned last week, that pain can't be another tumour already'.

Another tip is give yourself the green light to worry, say the day before a scan - let yourself feel the fear.

Waiting for your results, you have to be superhuman to not worry. It's normal to go off the rails a bit, so let yourself.

Celebrate a positive scan, go for a glass of wine to toast a stable scan.

I always prepare myself for bad news, I'm not really sure if it's the best strategy but I tell myself, 'I've had bad news before, I can deal with it again'.

Remember that, and remember to take it one step at a time. One day at a time. One scan at a time.

2. Side effects

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Every pain, every niggle and new weird feeling - I convince myself it's more cancer.

I spent three days of my holiday a few weeks ago convinced I had a tumour blocking my bowel.

In my head it was growing fast and was going to explode and I was going to die. Google told me so.

In fact, it was just a bout of constipation. Regular constipation that everyone gets.

It's easy to forget you can also get regular illnesses, harmless ones too. Not everything is cancer.

I still get regular aches, I get car sick and just feel tired sometimes.

While it's probably normal, it can be scary.

My way of dealing with this particular fear is just to see my doctor, get worrying side effects or pains checked out. Put your mind at rest at the earliest opportunity.

Plus, catch anything sinister early and chances are it can be dealt with, so don't delay!

3. The 3am fear of 'what if'?

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This will never go away.

As soon as my head touches the pillow the fear sets in, it's hard sleeping when you know the stats say you should be dead, or will be soon.

Is there even time for sleeping if life is running away with me that quickly?

My 3am cancer worries tend to go a bit like:

• Will my cancer come back?
• Will I be alive next month, next year?
• What if I'm told I'm going to die soon?
• What if there is nothing more that can be done?
• Will my kids cope?
• Why won't my cancer stop growing?

I'm scared, I'm always scared. These questions constantly run through my head.

But, I have learned I have to let them play out.

I have played out the 'what if I die?' question a million times over.

I play these questions out to their worst possible end, usually me dying. Then I park it, at least until the next wave of worry surfaces.

But talking through each one helps, I'd recommend seeing a specialist counsellor, or opening up to your mates in the pub.

Getting it all out in the open can really help.

I've told all my friends what I want them to do if I'm not here anymore, and it was pretty liberating.

And by doing so, I managed to relieve some of my fears.

4. Heartbreak

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Death is part of life, but sadly with so many friends with cancer it feels a daily part of my life.

This summer I've lost more friends to this disease, most of them young people.

It's tragic and it's not fair and it's heartbreaking.

In the last few weeks I’ve sent four goodbye messages to people I’ve met, who were diagnosed after me and have died before me- all younger than me.

I try and live my life in a 'F*** you cancer' bubble, pretending and hoping that I'm immune from what on paper is my fate.

But with every friend I lose, I am just reminded of my reality.

People die, they shouldn't die so soon, but they do.

My heart goes out to all those families who have lost loved ones to cancer.

Each time I've said goodbye to a friend, I am thrown into a terrifying spiral of fear worrying it's me next.

But every time, I take a breath and remind myself how lucky I am to be in the here and now.

I vow to live my life to the full, in their memory and tell myself regularly life is too short.

My coping mechanisms

My ways of coping are pretty simple, really... run, exercise, breathe, drink wine, and laugh.

I remind myself that anything could happen and that I'm probably more capable and stronger than I realise.

I hope.

I don't take things too seriously.

I accept that having a sh*t day, or ten is normal.

I go easy on myself and acknowledge that life is hard.

I've learned to be resilient, and I've learned to draw energy from those who live for today too.

Hold on to hope

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Is there any hope? The answer is 'YES'... there is generally always hope.

You will tend to hear the heartbreak before any celebrations. The bad before the good news.

I'm on drugs that weren't around when I was first diagnosed.

That gives me hope that if I can kick the can further so to speak, when these stop working as they probably will do, there might be something else on the market to keep me alive.

People are living for longer than ever with cancer.

And while we don't have a universal cure, we do have cures for lots of types of cancer.

More people will live ten years after diagnosis and survival rates have doubled in the last 40 years.

There are people who smash the dire stats.

My tip to you? Go out of your way to seek out examples of people thriving while living with cancer.

I was struggling on my new drugs recently, then I met Jody Jones.

She's a fellow young bowel cancer patient - another stage 4er.

And she happens to be my current inspiration to get moving, after swimming the Channel 20 months after being diagnosed.

THINGS CANCER MADE ME SAY

INSPIRATIONAL

A look at the life of the late Deborah James

HER ROCK

Find out about Deborah James' husband Sebastien Bowen

MUM’S PRIDE

Dame Deborah James' mum defied her advice & read final emotional book chapters

MUM'S GRIEF

Heartbreaking moment Deborah told me she loved me and had no regrets, says mum

She's had seven ops, 21 rounds of chemo and is now on the same drugs as me.

I’m beyond inspired. Yes, for most of us that's unrealistic.

But I need to see stories like Jodie.

Of people being told they can’t - and then doing it anyway.

Of people giving to big fat fingers to cancer.

Surround yourself by this - it carries you through the dark times.

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