Throat spasms and gasping for breath, I’d forgotten how hard chemo is but I’m lucky to have it
WITHOUT it, chances are I won’t live to see Christmas. But, chemo is hard, really hard. I don’t want to sound like I’m complaining, I’m trying hard not to, but after four-and-a-half years of cancer treatment you’d think I’d be a pro. Head down, sleeves rolled up, all my ‘chemo coping tools’ in the box […]
WITHOUT it, chances are I won’t live to see Christmas.
But, chemo is hard, really hard.
I don’t want to sound like I’m complaining, I’m trying hard not to, but after four-and-a-half years of cancer treatment you’d think I’d be a pro.
Head down, sleeves rolled up, all my ‘chemo coping tools’ in the box and cracking on.
But it’s far from plain sailing.
I know what I should do, and I’m trying to listen to my body, sleep a lot, take it easy and be kind to myself.
I even managed, with a hell of a lot of cancer and Covid admin, to get away on holiday.
But, as all cancer patients will know, that doesn’t stop the nasty side effects from jumping in the suitcase too.
It’s been three years since I have had chemo, having been on targeted drug therapy instead.
That was until my liver started to fail, and the drugs stopped working.
A stent operation to stop the liver failure, and a bout of sepsis later, and it’s back to chemo I go.
But this time I feel like I’ve hit a new rock bottom, my broken, wobbly body is struggling more than ever before (even if my holiday glow hides it pretty well).
Side effects will hit me for the next few weeks
It feels different this time – harder.
Covid has made it impossible for me to lean on my usual chemo coping mechanisms.
I used to take a friend with me, that can’t happen now.
I used to do something fun the night before, but my zapped immune system means crowded places are still no go zones for me.
So it’s just me, being pumped full of toxic drugs that wipe out my good, and bad cells too.
I have to wear a portable chemo pump for the next three days at home, while I balance the sickness and general grim feeling while taking steroids and various other medicines.
And then comes the wave of side effects that hit for the next few weeks.
The chemo I am on is called FOLFOXIRi, and one of the main side effects is an allergy to cold.
By cold, I mean anything that’s under 16C.
My throat spasms, rendering me unable to breathe which while only temporary is terrifying.
Ice is the enemy until day five post chemo, when an orange ice lolly literally feels like the best thing in the whole wide world.
But at the same time, I start to lose feeling in my hands and feet and my balance tends to go.
Cancer keeps throwing curve balls
This cycle, like last time, I battle with stomach cramps and the deep, visceral bone aches from the injections I take to boost my bone marrow to avoid becoming neutropenic, where you have no ability to fight any infections (not ideal in this Covid world).
And then there is the curve ball stuff.
The 40C temperature, the night sweats, the hanging by your phone wondering if you need to call the Macmillan team to say I’m worried about X, Y or Z.
Even while I have been on holiday in France, my family had to help monitor me while my body refused to play ball, with temperature spikes and pain.
There were lots of emails to and from my hospital team, and we agreed I should go to the nearest hospital to check I wasn’t septic again.
I weighed up if I should just sack off what could be my last ever holiday and get back to the UK, while frantically hoping my body will fall into line with the help of some antibiotics, steroids and lots of sleep.
Meanwhile, life goes on. I have two kids desperate for a normal life.
And yet, I am plagued by the 3am terrors where I hit a new rock bottom and sob that I can’t go on.
I struggle to recognise my body as my own, and it’s heartbreaking.
I crave normality, whatever that is now. All I do know is this isn’t it.
And then I find some days I wake up to a new day without the stomach cramps, aches and pain and I feel full of hope again.
As much as I don’t want to drag myself back home this weekend, and just want to keep running away, I feel incredibly grateful that on Monday I get to go back into hospital to start this chemo cycle all over again.
It’s miserable and really tough, but I get to do it and I have a team bending over backwards to help me.
I know I am one of the very, very lucky cancer patients.
Medics up and down the country and doing everything they can to help clear the backlog of cancer patients who missed treatment due to Covid.
But the real big C will be catastrophic if cancer services are not given even a fraction of the amount and resources directed at fighting Covid.
Cancer survival chances are at risk
We can’t forget that more people die of cancer on average each year, than died of Covid.
Not that it’s a competition, but for the first time ever cancer survival chances are at risk of going backwards.
When one in two of us will be diagnosed with cancer in our lifetime, it’s simply not acceptable in this day and age.
Data from Cancer Research UK this week has highlighted the true impact Covid has had on cancer treatment.
It shows one in three cancer patients due to start treatment during the pandemic reported it had been delayed, cancelled or changed as a result.
It’s a pretty powerful reality check when I am feeling rough and like I can’t go on.
There are still tens of thousands of people left undiagnosed, waiting for tests and yet more disruption means this is far from over.
The research also shows how cancer patients feel their care has deteriorated since Covid hit.
The most common ways include having to go to treatment alone, having check ups cancelled and hospital appointments postponed, as well as receiving less support from dedicated groups and clinical nurse specialists (through no fault of their own).
Cancer is stressful and painful enough, without all this to face too.
So, while I might want to throw my toys out the pram at times because frankly I am human and this sh*t is hard, I know how lucky I am.
I get the chance to make sure no stone is left unturned, no roadblocks are in the way of me trying to live as long as I can, even if it means dragging me kicking and screaming into that chair.
We need to give those heroes on the front line the proper backing to cope with the backlog.
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They need the funding so that when I – and thousands of others – need a hospital bed, we can get one.
But this all requires investment. Big C style investment.
I just hope Sajid Javid is listening to the thousands of people who feel like they’re battling the forgotten C right now.
Time is running out for too many of us.