Part 16: The Windmills of Your Mind

The seemingly never ending impact of cancer, fear of recurrence and emerging from 'Cancer Land'.

Our lives move in circles don’t they? Wheel’s within wheels say… we have family circles, family friend circles, your parent’s friends circles, very close friend circles – often varied and numerous, linked to different parts of our lives (horses, music, sport, close colleagues, school, university), circles made up of the family of close friends, work circles, hobby circles – for me my running club, fellow musicians I’ve gigged with, my yoga class – neighbourhood circles, wider friendship group circles made up of friends of friends in your closer friend circles but friends none the less circles and even social media circles.

Sometimes the circles interlace and connect like a venn diagram; other times they exist entirely independently from the rest of your social machine. But whatever shapes they make, however many times they interconnect or diverge, we are all one little cog in each of them - an important part, and undoubtedly, each circle would be slightly different – and weaker in some way at least – if any of the cogs that make it work are removed: the whole system is interrupted, halted, stalled, re-directed. And disruption in just one of your circles has a knock on impact on the others – like a pile up on a motorway.

The message came through at about midday that day, just as I was getting ready to drive in to work to collect my new lap top – step one in preparing to return to life outside of ‘Cancer Land’ (as I have just recently started thinking of it, thanks to my discussion with Nicole Harlow in Episode 7 of her wonderful podcast ‘The Cancer Files’ which you can listen to here).

I’m still on a Whattsapp group with some of my dearest colleagues (one of my circles), and although I’ve been pretty quiet this year it’s nice to still feel included and be able to keep up in some way with the day to day outside of ‘Cancer Land’.

On this particular day someone shared a screen shot of an email, informing us that one of our colleagues, Ismail, had passed away.

‘We all knew he was unwell but this news was unexpected’ it read.

Ismail had been diagnosed with stomach cancer just after I had received my own diagnosis, although I guess he had started medical explorations around the same time as I had, perhaps even earlier. As far as I knew, his cancer had not been thought to be terminal. Despite this, less than a year later, he was dead.

Ismail was a kind and gentle man, who sacrificed a lot to support and care for his family. He was quiet in the office, but always showed an interest in what we were up to – he especially liked to hear about my running escapades - and brought back strange and intriguing sweets and things to eat from his yearly travels to new and faraway lands. I liked him. He was a cog in one of my circles; not a driving force perhaps but definitely part of what made it turn.

I quickly logged on to my work email, something I had not done since my diagnosis, and read for myself the email in its entirety.

And I cried. In a way that I have struggled to do very often throughout my experience: huge heaving sobs, broken breath, crying that hurts physically.

I felt guilty immediately for those tears, those sobs – because they were not just sobs for Ismail and for his family, but they were for me too. And somehow that felt self-indulgent, selfish. Because I was, after all, still here, when Ismail was not. Is not.

I cried so hard that Steve came running downstairs, shouting:

‘I hear a wobble!’ grabbing me too him as he would several times over the next few days because the tears wouldn’t stop; the tiniest thing would bring them back afresh.

That particular day he phoned his boss and explained he would have to take me in to work, that he was worried about me driving. And he was right: the tears and sobs accompanied us unwillingly as we motored along the desolate Acle Straight towards the sea, rain lashing our windscreen, tormenting the tears scarring my wet cheeks, and then again, as we left the college and the yellow air ambulance hovered above us.

‘Somebody’s hurt’ I wailed.

And ‘Oh no’ I sobbed again as we eked our way home through the traffic, circumnavigating the road accident, the air ambulance still circling precariously.

And later in the shower, or attempting to read on the sofa, or walking the dog, or cooking, or hoovering, or even just looking out the window, my sobbing and broken breath would hail another ‘I hear a wobble’ and Steve would bound down the stairs to give me a hug.

I think about Ismail a lot, even now that my tears have steadied. I wonder how happy he had been in those years before his death. He seemed to live for his family, and not for himself – but maybe that’s too simplistic a way of looking at it. I suspect his family was the catalyst for everything that he did, the reason why he drove between Great Yarmouth and Yorkshire every Friday and Sunday, working away from his home, sacrificing his own wants to support his daughter and her future career – I suspect that knowing he was helping her achieve and progress is probably what did make him happy.

I wonder if he enjoyed his job, or if it was just a means to an end at that point – finding joy in other ways and areas of his life. I wonder if he had any regrets. And I wish I had taken more time to talk to him about his life and his family: I wish I understood his raison d’etre better. I wish I hadn’t taken time for granted.

I wonder too, at what point he knew the end was nearing. At what point did his diagnosis become terminal? When did things change? How much time did he have to prepare?

Ismail is the third person that I knew personally, in less than a year, to die of cancer – the third person that I had laughed and joked and swapped stories with; the third cog in a circle I moved within; the third of my circles that has been hit as a whole by, has been changed by and has had to process, the effect of cancer.

To me, Ismail’s death is not just heart breaking because he is gone, changing the shape of one of my work circles and leaving a family on the cusp of the next stage of their adventures – they will now have to navigate each milestone to come without him: the graduations, celebrations and weddings, the births and lives of grandchildren, the futures that he had worked so hard to secure – but to me his death also amplifies how quickly everything can change when cancer is involved. How you can be barrelling through your scheduled treatment, ticking off the cycles, putting one foot in front of the other, taking on each day and everything it throws at you valiantly, and find yourself somewhere completely different. And there is seemingly no rhyme or reason to it – I know of people with incurable cancer who have been in remission for 10 years – found NED (no evidence of disease). And I know of others who were diagnosed at stage 2, chemo only a mere precaution, to be stage 4 less than a year later – their cancer jumping from highly curable to incurable in no time at all – I don’t know what Ismail’s initial diagnosis was (I was already off work by that time), but as I said, I do not believe that he had been handed a death sentence.

Fear of recurrence is very real. It is something I live with and face every day and probably always will. But Ismail’s death made this fear come alive in completely new and terrifying ways.

Slowly I tried to focus again on moving forward into my post-treatment future – emerging from ’Cancer Land’ and reconnecting with more and more of my circles. As part of this process I started reaching out to make contact with colleagues in readiness for returning to teaching…only to discover, by accident, that alongside losing my A Level and Level 3 classes (which I have written about in a previous blog), I had been timetabled out of my Access Literature course too.

I had already made peace with the loss of the other courses – these were mostly enrolment number dependent, so although I was sad to lose them, it was out of my control. In light of this, I had already applied for a reduction in hours, hoping that a shorter working week, alongside the knowledge that I would end it with my Access students (the only class I thought I was likely to teach all week that actually wanted to be in my classroom), would mean I could cope with a timetable dominated by 16-19 GCSE re-sits.

However, unbeknown to me or even my line manager, whilst I was on sick leave I had been timetabled out of this course too: a course that I had taught successfully for the last 3 years or so, that I could probably teach blindfolded if I had to…or in my sleep…or any other clichéd metaphor you can think of. And this decision, made without my knowledge, hit me really hard.

Whether they meant to or not, this action made me I feel pushed out, worthless: like people saw me as a liability and as unreliable. And then in turn I felt like a commodity that was being timetabled into places where I would do ‘the least amount of damage’. It made me feel far less an important cog to the function of these circles than before I had cancer.

Now, I am sure that this was never anyone’s intention, however it happens a lot to cancer survivors. I have listened to story after story of people’s struggles to return to work whilst being made to feel that they are no longer capable – but I naively didn’t think it would happen to me.

And in turn I felt really trapped; I wanted to fight back with every ounce of my being; I wanted to scream and shout about how unfair this felt – I wanted everyone else to imagine how it was to have spent a year with cancer, only to return to a career that has gone backwards not forwards; I wanted them to imagine how it would feel if their reward for getting through a year of surgery and chemo was to have all the things you enjoyed about your job taken away from you, and replaced by only things that you had previously been struggling with.

I have written in the past about how, just before my diagnosis, I had started working at the sixth form college and was excited about making positive changes to a career that I had lost some motivation for. Prior to that change, apart from my Access Literature class, I was teaching a timetable of 16-19 year old GCSE English re-sits – teaching young people a subject they have been forced to retake (and not for the first time for many) can be incredibly challenging. Many learners, understandably, really resent having to retake a subject they do not wish to, a subject that they find hard and therefore don’t enjoy, and often, a subject that makes them feel inadequate – especially if they have failed it several times already. More often than not, the teacher takes the brunt of the anger that being in this situation awakens. So after several years of this, I felt impelled to do something about the way I was feeling: I applied for the job at the 6th form.

Now don’t get me wrong, I am not saying my job was awful or impossible…I had just had enough. Many other teachers would feel differently and I am in awe of them. But me? I just wasn’t enjoying it anymore: my patience was gone, my motivation was gone, my passion was gone. And as I have explained before, I had begun to wish my life away: I’d count down the minutes till the end of each lesson, the hours till the end of each day, the days to the weekend, the weeks till the next half term, the months to the end of another academic year.

Since starting at the sixth form college however, although it still featured GCSE re-sits, it also had more variety, and most importantly, involved teaching far more students who had chosen to be in my classroom than ever before. And although this brought with it new challenges, I had stopped counting the minutes, hours, days, weeks and months.

Now, having lived a year with cancer, I cannot allow myself to return to a situation where I am left wishing my life away again, because more than ever I know just how short and precious it is.

This all meant that losing my Access and facing a full re-sit timetable felt an impossible task to return to. And as I have already said, I felt really hurt. I felt that all of a sudden, any trust or belief people had had in me before cancer, was gone. And if this was the case, subconscious or not, I knew it was wrong.

But how could I fight back? I didn’t have my scan results yet – at point of writing I still have no idea if I am cancer free or not. And neither can I guarantee that I won’t get sick again – what if I kicked up a fuss, started shouting and got all my courses back just to find I needed more treatment? More time off? Was unable to teach those courses after all?

Eventually my application to reduce my working hours to 4 days a week was countered by an offer of 3 days. I was unsure that I could afford such a huge drop in income (I will in fact be worse off than when I was on sick leave), but neither could I face the alternative.

I was left to think things through before making a decision; I remember trying to get off the phone that day as quickly as I could…before I cried.

And then almost simultaneously, Chadwick Boseman died, and I got to the end of Ibrahim Kendi’s book ‘How to be an Anti-Racist’ to find that he too had bowel cancer. Both, like me, were in their 30s and both very fit –alongside avoiding alcohol, Kendi even followed a plant based diet. Boseman, again like me, was diagnosed at stage 3 and in his case progressed to stage 4. Kendi was stage 4 at diagnosis.

Left: Chadwick Boeman. Right: Ibram Kendi X

So on top of the death of my colleague, my fears and worries about returning to work, the over-riding feeling of inadequacy that this brought and my worries about my emotional stability, it felt that at every turn, I was also having my fears of recurrence magnified.

And, unsurprisingly, no one wants to explore fears about recurrence and death with you, even though you really need to. I definitely need to.

I think I was, by this stage in danger of becoming a little depressed. I wrote in my last post how shocked I was to find that finishing treatment had not left me feeling the elation I had expected, and since then life has just kept throwing new challenges at me. I was struggling to shift that heavy feeling in my chest – summoning a smile to Steve’s attempts to cheer me up felt exhausting some days; getting out for a run or cycle felt impossible.

Luckily, during all of this we were also preparing for a long promised holiday which offered some distraction – originally a planned trip home to Australia that was thwarted by my cancer diagnosis and treatment schedule morphed into a motorcycling holiday around southern France. This was, in turn, cancelled by Covid, so we eventually booked a socially distanced week away in the Lake District, made possible by a kind gift from my dear uncles.

And it was glorious. For the first time since my diagnosis nearly a year ago, I was given some space from the worry: being physically somewhere different and far away helped me find distance emotionally from my realities.

We spent lazy mornings: me reading and drinking tea, Steve languishing in his beloved lie-ins. We climbed mountains, and explored single lane, dry-stone walled roads that wound their way across to the West Lakes and back again. We rode downhill tracks and uphill climbs on our Mountain Bikes. We ate gelato in Keswick and home-made sandwiches in our car to escape the rain that did not dull our mood, returning each night to our cosy Air BnB in the middle of nowhere to cook nice food, eat cheese, play cards and be together. We even had a night in a posh hotel with a bath so big and luxurious it could fit not just both of us but probably an entire rugby team as well; we woke to morning views of lush green valleys and never ending, cloudless blue skies from the comfort of our (very large) bed.

And I didn’t think about cancer, money or work. I was able to just exist and live for the moment, spending time with my love and in nature.

Towards the end of the trip though, having just completed the Barfe Mountain Climb, we were met by some bad news – the husband of a dear friend found out that his cancer had returned, and spread. Diagnosed just before lockdown, he had survived a successful operation but the next stage of his treatment had been deferred. Caught early, as it was pre-covid, things should have been straightforward, but six months later, without that treatment, his cancer had not only returned making another operation inevitable, but this time it had spread requiring, at the very least, chemo as well.

My heart broke for them both and my tears fell again, but for them this time, not me, knowing what lies ahead – the frustrations of the waiting and the uncertainty of early diagnosis came back in a moment. I remembered sitting in hospital gowns in washed-out waiting rooms, twiddling my thumbs, readying for tests, not knowing what will be found; I remember the buzz and whizz of CT and PET scanners as they trace across your body, tracking cancerous cells; I remember the feeling of not really being present but also very present all at the same time. And with this news came the realisation that a fourth circle I was connected to, had joined the list that had been effected by cancer this year alone.

It’s such a strange place, early diagnosis – somewhere I would never wish anyone visit. I hope that I can be there for them and I hope I say the right things. I hope they feel that they can feel all the emotions freely and not put on a brave face. But mostly I just hope that he, and they, will be alright.

So this news, and knowing that despite my best efforts to forget, I would soon have to face up to what lay ahead on our return home, meant that by the time our final day in The Lakes arrived I could feel myself getting grumpy – I knew I had to tackle the work quandary and make a decision about hours and I really didn’t want to. I wanted to stay right where I was – far from reality.

But this was not possible. I needed to think about my finances and look for alternative ways to supplement our income in a less stressful way. I needed take some positive steps to redirect my future and regain some control.

I had scheduled a meeting with work for my return and I was feeling nervous about it. The day before I'd felt flat and listless even though I'd tried to be productive: I’d crunched numbers and estimated what my take home pay would be from a variety of hour combinations; I’d investigated some volunteering opportunities and applied for some tutoring work; I’d even signed up for a new course starting in January; I’d updated my budget spreadsheet and worked out how much worse off I would be, and although it will be doable, I was (am) still scared about how it will change our lives, yet another reminder of the lasting and varied costs of cancer.

Despite this fear, I signed in to the meeting, determined for change and accepted the reduction to 3 days from the 4 I had applied for. In return my managers had tried their best to build a kind timetable, including some adult GCSE classes (generally more compliant and enthusiastic than 16-19) and on-line tutoring, with the possibility of some Access hours again in January. The majority of my lost hours came from the sixth form though and I am sad about that, but I am mostly glad that I will not face a full timetable of classes made up of learners who had been enrolled against their will (so to speak).

I plan to use the extra space in my week to moves towards a new future. Reduced hours offers me freedom to return to study later on when I am more settled, or build my skills in other areas so that when I have my scan results I can make proactive choices that will lead to a new life where I never return to counting down minutes again.

I ended the meeting feeling positive: a plan was in place and I was feeling Ok about it. The meeting also put paid my fears that I was being side-lined and looked at as a liability – it made me realise that I was valued, I was an important cog and that my managers were trying hard to help me regain some confidence as best they could. Or at least I hope they were!

In the meantime I was tasked with chasing up clearance to return to work form my oncology team who sent me for a blood test to check my immunity.

Sadly the test came back showing that although increasing, my neutrophils and white blood cell counts were keeping me in the ‘highly vulnerable to Covid’ category, making my return to face-to-face teaching unfeasible at the moment after all.

Another set back, and another month before I can make another attempt to emerge from ‘Cancer Land’ - another reminder of the toll chemo and cancer has taken on me, physically, mentally, practically and financially.

But I am feeling ok about it because it actually gives me a little more time, allows me to slow my re-emergence down and tip my toe into ‘Life After Cancer Land’ more carefully…I am, also feeling ok about it because I have been reading ‘The Cancer Survivor’s Companion’ by Doctor Frances Goodhart and Lucy Atkins.

Not all of it is relevant to me, and in fact a lot of the practical advice it offers (meditation, exercise, writing down your negative thoughts etc) I already do, but it did finally gave another voice to a lot of the fears I have. And it helped me feel better about them.

It voiced in black and white why the threat of cancer still feels very real: ‘You don’t feel the same certainty about life any more. Your future seems unknown and, perhaps at times, very scary indeed…after months…of struggle, your coping skills are probably at a low ebb. Basically you’re exhausted’.

Suddenly it felt ok to feel all the things I have been feeling and that my fears of returning to work – mostly that I won’t be able to cope, that I will cry the moment I face any conflict…or worse: tell a student to F off…or just walk out – were ok, were understandable. It reminded me that ‘the focus of (my) life ha(d) changed completely – and change isn’t often easy to handle’. It told me that it was ok to worry, and that even though ‘virtually every cancer survivor goes through this, ’it’s a lonely place to be’.

It explained that it is ok to have thoughts about recurrence and your death, and I read gratefully, that avoiding those thoughts is actually not ok: ignoring them didn’t make them go away, it made them destructive. I realised that having them didn’t make me self-indulgent or fatalistic – they actually made me human. ‘It’s completely natural to fear the worst’ every time you have a ‘twinge of pain somewhere’, the book told me. ‘You’ve had to face unexplained symptoms before. You have tried to reassure yourself then, and look what happened: cancer’. I could have written it myself.

It also explored the pressures of expectations – for me, returning to work and bouncing back I guess. But it also helped me see that getting through cancer treatment is the ‘mental equivalent of running a marathon’. ‘It feels like my mind’s just stopped. It’s drained, empty, it’s just checked out’ David, a prostate cancer survivor explains - and straight away I understood how he felt.

It gave me permission to grieve what I have lost, rather than bow to the internal and external pressure to feel elated that I have finished treatment and lucky that I am still alive. And it made me feel ok about thinking about my cancer coming back and the realities of facing my own death – that rather than allowing myself to be talked out of doing so, I should go there, because only through going to those places, can I take control of them.

So I chose not to continue to panic inwardly about those twinges and new and returning symptoms I was having; instead, I mentioned them to my clinical team and had my scan brought forward – just to be sure. And rather than playing out fictional appointments with my oncologist I explored the practicalities of my cancer coming back: what it would mean, the financial impact, how it would impact my job and my health and mind if I had to face further treatment.

Being given the freedom to do this - being told that it was ok – helped.

It made me realise that even if my scan results are bad, I will be able to cope; that just like last time, my friends and family will rally: all the cogs in all my circles will turn for me; I will manage another operation – this time with greater knowledge and the support of my amazing physiotherapist and fitness instructor who I now think of as a friend (an important cog) - I will take on further chemo one step at a time and keep up with my fitness regime just as I did last time; I will research any new treatments offered so that I can take them on too with some confidence and I will tighten my belt to weather any further financial challenges that may join us for the ride. Not thinking about it, not talking about it, makes the future too uncertain, too scary, too unknown.

And so I will have my scan this afternoon and await the subsequent results; I will await the green light to return to work. I will also await permission to start living my new life, knowing that even though they may have changed and some cogs are no longer there, I still have all my circles, still made up of some very dear cogs, and enriched because even though Ismail, John and Debs may not be here in body, they're spirit remains in the jokes, memories, experiences and stories we have shared with them: ‘like a circle in a spiral, like a wheel within a wheel, never ending or beginning on an ever spinning reel’.

I also have a new puppy!