I’m a cancer ‘Inbetweener’ and it’s a mind f*** learning how to live when you should be dead.

I USED to think all cancer patients died.

That's probably because most did.

 When I was born - 38 years ago - nearly everyone diagnosed with cancer died

When I was born - 38 years ago - nearly everyone diagnosed with cancer diedCredit: Deborah James Instagram

When I was born - 38 years ago - people only lived for about a year, on average, after being diagnosed.

The reality is they would have just about had time to come to terms with their diagnosis, while realising they had very few options. That's no way to live.

Over the past 40 years, survival rates have doubled.

That's thanks to research, and advances in different techniques - as well as gaining a better understanding just how cancer works.

Cancer isn't the death sentence it once was

These days, people do survive cancer - not everyone, but around half of those diagnosed will.

We see more and more people who came, saw and conquered - then moved on with their life.

Then, at the other end of the spectrum, are those people who do still die from the disease.

While cancer does catch up with them, unlike 40 years ago, they do tend to get more time before that inevitable happens.

Enter... the 'Inbetweeners'

Now, with this tide change - which is only a good thing - it means a new group has emerged.

The 'Inbetweeners' or 'Unmanageables' - people like me who, ten years ago wouldn't still be alive.

We are the ones who have - bar a miracle - medically, 'incurable' cancer.

We aren't dying, we're very much living. But we are living with cancer.

I go about my daily life, albeit a bit different to most, with cancer in tow.

 But these days thanks to incredible people like my team at The Royal Marsden cancer isn't the death sentence it once was

But these days thanks to incredible people like my team at The Royal Marsden cancer isn't the death sentence it once wasCredit: ©2019 Guilhem Baker Under licence to the Sun

Everywhere I go, everything I do, it's there like a monster on my shoulder.

I am part of this new cancer generation, which the charity Macmillan estimated this week numbers about 130,000 in the UK.

I live in a limbo state, where my disease is - by medical standards - under control.

Is it eradicated? Nope. Growing rapidly? I really hope not.

I, with the help of my incredible medical team, have to take each day as it comes.

Frankly, having been diagnosed with stage 4 bowel cancer nearly three years ago, I am already pushing my luck.

I know what will happen in the end, it's one of the only things I can be sure of.

What's life like as an 'Inbetweener'?

 I am one of a new generation of cancer patients, the 'Inbetweeners' - I am living with incurable cancer

I am one of a new generation of cancer patients, the 'Inbetweeners' - I am living with incurable cancerCredit: Deborah James

The truth is, this state of limbo is tough - mentally and physically.

I might be 'smashing' my doctor's predictions out of the park, but the truth is no one really knows how long I can stay 'stable' before the sh*t really starts hitting the fan.

I am still on treatment, which like for thousands others, means daily drugs that come with nasty side effects.

One minute I think I'm dying, while the next I am learning to live. I mourn my future, but before long I am planning the next holiday.

Anew group of cancer patients has emerged... the ‘Inbetweeners’ or ‘Unmanageables’ – people like me who, ten years ago wouldn’t still be alive

It's a huge challenge for everyone in my position - a challenge that simply is not being catered for, Macmillan warn.

Their new report is the first of its kind to look at the issue - and they estimate the needs of more than 77 per cent of "incurable" cancer patients aren't being met.

I get this, all of it. I am one of these people.

Don't get me wrong, I am treated at The Royal Marsden, one of the best cancer hospitals there is.

And I am pretty vocal when it comes to what I need.

But, half the battle is understanding and knowing what that is. Sometimes, it's not always clear.

Physical and mental challenges

 Life as an 'Inbetweener' is tough - mentally and physically, with treatment, side effects, anxiety and fear taking over

Life as an 'Inbetweener' is tough - mentally and physically, with treatment, side effects, anxiety and fear taking overCredit: Deborah James

Pain management is key. The long-term side effects of scar tissue from operations and the barrage of drugs is complex - and it changes with each new treatment.

If I live another five years we don't actually know what the impact of the drugs I am currently taking will be.

My biggest challenge - as an 'Inbetweener' is my mental struggles.

From trouble sleeping to depression and anxiety, it turns out I am not alone.

Macmillan's report shows that us 'Inbetweeners' are more likely to also be living with a mental health problem.

It's no surprise - it's a head f***. Am I living? Am I dying?

 The cancer charity Macmillan warns there are lots of people like me, and we need support - to navigate our lives with this disease in tow

The cancer charity Macmillan warns there are lots of people like me, and we need support - to navigate our lives with this disease in towCredit: Deborah James

My mood changes with the wind, one minute I am living for now. The next, I am crippled with anxiety over not being able to plan for my future.

I talk about my fears but the longer I live, the more it feels like I have to lose.

With each day I realise just how lucky I am to be living with cancer, so naturally I get greedy and want more and more time.

There's no text book or guidelines to help us 'Inbetweeners' learn to manage our lives with cancer.

There was no need for it, not back when most people died from the disease.

It was simple back then, you died - or you got on with life, having kicked cancer's arse.

But things have changed and now it's time the cancer system changed too.

These days, we need to know how to plan for, and have the resource to support people living with cancer.

Our numbers are only going to - hopefully - continue to get bigger and bigger.

With more advanced treatments, more people will live.

Now we need to make sure they can life a good quality life, with cancer.

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