Part 17: Don’t stop thinking about tomorrow part 2

What I remember clearly, is how badly I needed a wee. I was lying as still as I could, holding my breath as directed by the electronic voice of the CT scanner as it buzzed and whirred around me, trying not to wet myself. As instructed, I’d already drunk two pints of water slowly over the 45 minutes before leaving my house, followed by another on arrival.

To my dismay, despite having left in plenty of time, we had met road closures and been forced to drive right back through town and out again in order to approach the hospital from a different angle which took an inordinate amount of time.

Then, I head to the completely wrong part of the hospital, having not read the instructions on my letter properly. Which is just like me.

Finally I arrive, nearly twenty minutes late, breathless and busting, to a withering look from the receptionist as she phones through to radiology.

‘Can you still see Susannah Close?’ she enquires unenthusiastically.

‘Please no!’ I beg quietly, my fingers crossed. You can’t send me away. You can’t make me wait any more.

‘Go through,’ she sighs eventually, nodding me in the direction of the waiting room. ‘And make sure you drink more water.’

I feel suitably chastised as I force yet more liquid into my very full bladder.

Eventually I am lying prostrate, with metaphorically crossed legs, reading the screen on the CT scanner above my head: 6818867 Close 37 F.

A hospital number. A surname, An age. A gender.

I feel surprisingly empty as I stare at my existence, cut down to its most baseline points: A hospital number. A surname. An age. A gender.

A statistic.

A box to be ticked off.

It feels as though my whole life this past year has been just a series of boxes to tick off.

Colonoscopy. Tick.

CT and PET scans. Tick. Tick.

Surgery. Tick.

8 cycles of aggressive chemo. Tick Tick Tick Tick Tick Tick Tick Tick.

Blood test after blood test after blood test. Tick. Tick. Bloody Tick.

And now…post treatment scan.

And then what? I wonder. What box will I be next?

‘All done love,’ the radiologist croons as she lowers me and my bladder down to earth again. ‘Now I can’t even begin tell you how long the results will take,’ she continues as she carefully removes the cannula form my arm. ‘With everything the way it is at the moment things are taking a lot longer than normal.’

So I head home to wait. Via the nearest loo.

My pre-surgery PET scan results, months before Covid-19 had even started seeping in to our daily consciousness, had taken 5 working days to get to my medical team, and then what seemed like years for more MDT meetings and decisions and surgery dates to be made before they got to me. I lost count how many phone calls I made and messages I left during that horrible anxiety-inducing period: pleading into emotionless answering machines:

‘Please? I’m feeling quite anxious.’

This time 5 working days pass and I hear nothing.

I hold off for another 3 before phoning my specialist nurse: ‘please leave your hospital number, name and phone number and we will phone you on our return.’

My count gets to 10 working days and still nothing.

I phone again. ‘You have phoned the colorectal specialist nurse team. Our working hours are…’

I barely leave my phone for a second yet still miss the return call: ‘Your scan isn’t back yet. I’ve put a note in my diary but if you don’t hear from me by next Thursday give me a chase then. No need to phone me back’.

The following Thursday comes around slowly and as the morning turns into afternoon with still no word, I cave in, phone my nurse and leave yet another message.

I haven’t really been able to focus on anything for days and find myself wandering about the house aimlessly. The night before, Steve and I had talked about how ‘this time tomorrow I could know if I still have cancer or not’ with something stuck between trepidation and excitement in our voices.

Eventually we give up waiting and go to Morrisons.

I am still in the veg aisle when my phone rings. The words ‘Oncology Nurse’ flash across the screen and I hesitate before answering. Do I want to hear this here?

Steve has returned with an armful of meat and dairy and listens anxiously…worried I guess about how I will react, here, in this most public of places.

He needn’t have worried. My scans have been misplaced or overlooked or lost in the ether or a combination of all of the above. But at least they have now been flagged as urgent.

And so I face yet another weekend of ‘scanxiety’, as it’s known within cancer circles.

And my anxiety is indeed rising with each day that ticks past. I am having nightmares every through the night, every night, waking regularly and finding it harder and harder to get up in the morning.

Anxiety dreams have been linked to Cancer-related post traumatic stress (PTS) and cancer-related PTS is linked to the trauma of a cancer diagnosis and treatment. Symptoms sometimes do not appear for months or even years afterwards and more often than not, only kick in post treatment.

Now I’m not suggesting that I am suffering from this, but I am also not going to hide the fact that there have been things that I experienced during my treatment that I found incredibly traumatic: the surgery itself and the strange out-of-body hospital stay that followed, in which I was scared, forgotten about and out of it, incredibly nauseous and in a lot of pain – which also included the incident where my cannula burst and I was left for what felt like hours on a busy, understaffed and over-worked ward, watching my arm swell to twice it’s normal size whilst I waited helplessly for assistance; the mortifyingly embarrassing, terrifying and excruciating day when my post-surgery, impacted bowel came to a head; the infection to my wound that developed as a result of being given no after care support, advice or guidance; my very first oxaliplatin infusion where the pain in my vein became so unbearable (and remained so for weeks afterwards) I didn’t think I could continue – leading to the insertion of my life saving PIC line; the days of severe nausea and diarrhea during my first few cycles that left me unable to move or even think muttering ‘I can’t do this!’ into Steve’s shoulder; my first experience of eye and throat spasms caused by my chemo; the severe reaction brought on by my final oxaliplatin infusion where I ended up shitting myself in front of strangers…and then there was the waiting for results…always so much bloody waiting.

Even now, certain smells and flavours, or even just the thought of certain smells and flavours, send me back to my chemo chair or lying prone on my sofa or remind me of any number of other traumatic experiences I had thought I’d forgotten. My stomach churns and my throat sticks, just as it had during my infusions and after. I will never drink hot squash again and even the thought of peppermint and liquorice tea makes nausea rise through my body, my mouth becoming salty. Just last night we were trying to remember how we’d spent new year’s: oh that’s right, vomiting or passed out, unable to move or sit up, following a reaction to the pain medication I was given during my post-surgery infection.

I refuse to hide those experiences away, because that’s perhaps were the danger may lie: having to pretend you’re ok because you feel a pressure to be so is a dangerous place to be – no matter what your trauma, or the source of your grief. If you don’t talk about this trauma and process it, your body and mind will find other, more destructive ways to let the feelings out – depression, drug and alcohol abuse, relationship break downs…the evidence is telling.

During my treatment, I found myself getting irrationally angry over the most stupid things. And angry angry. Angry that made me swear and bang and stomp and throw things and make stupid noises like ‘rraaarrraagahhh!!!!’ Sometimes, I’m afraid, the stress of cancer has made me not such a nice person to live with.

At first I didn’t realise that this anger was a sign that I wasn’t coping so well; I thought it was justifiable. But it was never justifiable! The instinct is – the instinct to be angry is a very natural and normal human emotion: it’s part of our fight or flight mechanism. And cancer does make us angry. It definitely made me angry. And the waiting made me even more angry. But I was also becoming angry at everyday things; I found myself losing my temper because I felt the kitchen was in a state, or because I couldn’t get the clothes drying rack through a door easily, or do up my own shoe laces or buttons, or get my bank card out of my purse. And strangely, I found that after my treatment finished I felt the most angry! It was a while, though, before I was able to link my behaviour to my cancer clearly. According to ‘The Cancer Survivor’s Handbook’, this is because although cancer is no longer an immediate threat, ‘it…still feel(s) close by’. But now you are no longer doing anything active to combat it. Thoughts and fears of cancer recurrence are normal – I’m only human after all. And it is normal to still be struggling with the physical and emotional after effects that often take years to resolve. As mentioned, I get particularly angry at my own hands, fingers and feet that can struggle to carry out everyday tasks thanks to the neuropathy – a long-lasting chemo side effect.

I have been feeling a bit lost – and I guess, because I can’t run away, I keep getting angry instead. My ‘fight’ has kicked in.

And, as the days of waiting for my scan results turned into weeks, the anger only got worse.

Now, I know all the strategies: the breathing and visualization exercises – but I am not yet so good at recognising that I am even getting angry until the moment of the explosion – I feel immediately remorseful and embarrassed and….stupid…but by then it’s too late.

By now, though, I am struggling to look forwards, becoming increasingly convinced that my treatment hasn’t worked. My blood results are back and I am declared safe to return to work, but can barely concentrate on anything. My anxiety dreams are getting even worse and as a result I am finding it even harder than I was to get going in the morning. Often I’m still in my pyjamas at 11, unable to face the day beyond running: after having struggled with motivation for it through treatment, I have suddenly found myself compelled to it: it seems the only positive thing I can face. But after I run, I can’t find the motivation to shower or change from my sweaty gear.

I find myself getting frustrated again too, by things people say to try and make me feel better – in a similar way to those awful days waiting for my initial diagnosis. I particularly struggle when people suggest that the long wait for my results must mean that they are positive – ‘surely if they weren’t, they would have been fast tracked?’ Forgetting, I guess, that I have been here before. I talked this over with a friend, whose husband is playing the same waiting game as I:

‘I’ve learnt that it doesn’t mean anything…it just means that they’re busy’ she wrote in a message.

I struggle on through my fourth weekend of waiting and phone up first thing on Monday and leave a message. I hear nothing.

I get through all of Tuesday without a word until my phone rings, the same familiar number flashing on my screen, towards the end of my tutoring session when I am unable to answer it. I ring back as soon as I can but am met, as usual by the answering machine.

I sigh. I am not suprised.

On Wedenesday I run: a threshold speed session. I run some of my quickest sustained times since training for the Cambridge Half, nearly a year and a half ago. And it helps.

‘I can’t possibly still have cancer’ I tell myself hopefully. ‘I couldn’t do this if I still had cancer’.

I get home and pick up the dog for a cool down walk.

‘Your nurse phoned’ comes through from Steve via Wattsapp.

I phone her back but no one answers.

And finally at about 11am my phone rings again.

‘Hello?’ I answer, expectantly.

And that is that. Despite all my catastrophizing, and strange symptoms and unexplained bleeding, my results are clear.

‘No Evidence of Recurrance’, is what is actually said. ‘It’s a bit like getting exam results!’ my nurse giggles.

And it feels strange. I sit there for a while, a little numb. I don’t feel the immediate elation I had tried to visualise. I don’t cry. I feel a bit teary but no tears actually come.

Eventually I gather myself up and wander upstairs to tell Steve – we cuddle.

‘Yay!’ he exclaims, delighted. ‘Now you can’t blame everything on cancer’. I have been known to blame more than the odd guff on it: ‘It’s not my fault!’ I’d cry. ‘I’ve got cancer’.

And as the day unravels I start telling people. By message. For some reason I can’t face actually talking to anyone, because I’m not sure what I would say, or if I would react in the right way – the way I would be expected to.

The messages quickly flood in: the well wishes and enthusiasm. And I wanted to share that same level of elation and excitement. But I just couldn’t. Because it was still too raw. It still is too raw.

I know that the treatment has worked, my body has responded and I am truly grateful for that. If it hadn’t, we’d be in a pretty scary place – a scarier place I think, than even I, with all my catastrophizing, would have been prepared for. And I am also excited that I can now think about my future again – even though this also petrifies me. But I cannot help but worry about what happens later down the track, when my toxicity levels return to normal and the chemo leaves my system completely. The fact that the cancer just might come back will always be a thing. Even after a year or two years or three years. Or ten. It will always be there.

According to Cancer Research UK, just under 65% of people with stage 3 bowel cancer will survive beyond 5 years. My statistics are reduced, slightly, due to the grade of my cancer and the high number of involved lymph nodes, but I also know that these odds could be a lot worse. But then, they could also be a lot better, you know, if I was like other fit and healthy 37 year olds.

And I do feel happy now – please don’t get me wrong. I am so unbelievably happy to be cancer free. I am unbelievably happy, that right now, I am not facing further surgery or treatment. But I will never be free from the worry and fear that one day, it will return.

I am also slightly scared about returning to ‘normal’ life, as I’ve written about before. Annoyingly this has not diminished and probably won’t for some time yet. And being met by everyone’s enthusiasm at my current cancer free-state has surprisingly led to even more anxiety.

I genuinely thought that my anxiety dreams would go away overnight. They haven’t. If anything they’ve intensified. Because I started to panic. I started to panic that now, I will be expected to just crack on, as though the trauma of this past year hasn’t happened. Now that I am ‘fixed’.

The thing is, I don’t feel fixed. I feel bruised and sore and scared. I am aware that my body is still recovering from the chemo and this will take some time yet. And the thought of having to be somewhere by a certain time, in proper clothes, every day, makes me want to vomit.

So please, be gentle with me. Understand that my excitement at being cancer free may be quieter than you would imagine it to be. Understand that I have been protected and isolated and coming out of this world where I put me and my physical and mental health at the forefront of every move I make, will take time.

Cancer steals so very much from you; it steals the faith you had in your own body and it takes over who you are; nearly every decision or action you take is dictated by it. At least that’s what it feels like. Learning to exist without and beyond that will take time too – and it may always play a part.

In the meantime, does anyone want any peppermint and liquorice tea? I have a couple of boxes going spare.