What’s really been going on

Lockdown wasn’t easy for any of us, and I’m sure everyone has a story to share of the challenges they’ve faced. This, then, is my story.

Some of you will know bits of it, and many of you will have guessed that there has been more going on than I’ve felt able to let on. I’ve always felt it important to be able to share my story as part of the process of making talking about mental health and how we are feeling normal, but some things need to be faced before they can be shared. These words are my recollection of a time when I was often driven by emotion and not logic. I’ve tried to ensure that the story is accurate- but this is the reality as I understood it then and understood it now.

It all began over Christmas in 2020. Like most people Lizzie and I were still being very cautious at this point – and had also just moved house – so decided early on we wouldn’t visit family for Christmas and instead would use the break to focus on redecorating. We went from nut roast to stripping wallpaper, and had so much to do we went a bit off the grid.

Like many people, I started 2021 hoping that this would be the start of a new, better, year. But it quickly became clear that wasn’t going to be the case. Early in January I got a slightly worrying message from my dad:

Just so you know, I was admitted to hospital on Sunday with kidney stones (?). I came home last evening. Not quite right yet but at least the excruciating pain is improved. I’m to be followed up as an outpatient somewhen. I’ll keep you posted. No cause for worrying, just a bit of a trial.”

When we spoke Dad shared the full story – over the festive break he’d started noticing some blood in his pee, and had then started experiencing significant pain in his kidney. The sort of thing that is probably nothing, but needs to be looked at to sort out the pain, and to rule out the potential of something more serious.

The results of the first tests was inconclusive. Probably nothing, but it would be worth having a look inside just to be safe. So, in early February, dad had some exploratory surgery to try and work out what was going on. This surgery went well, and the feedback from the surgeon seemed to indicate that it wasn’t something to be particularly worried about, but that we’d have to wait for the histology for a definitive answer, just to be safe.

That answer came in March, but it wasn’t one we wanted.

Dad had cancer.

Dad had serious cancer.

Dad had serious cancer that needed immediate surgery.

As I write with the benefit of hindsight, it seems like this was the inevitable result, and like this happened all at once. But at the time we all hoped – no, more than that – we believed – that this was a kidney stone. As the first three months of the year ticked over this was a background to my normality – a “I’m sure it will all be fine” that fitted into all the normal day to day worries we face. So when the news came – when I heard the C word – I was completely and utterly stumped.

A picture of dad and I smiling and looking into each others eyes when I was a toddler
Like father, like son

Many of you will know that for nearly twenty years the part of my life that has caused the most pain is that my mum has multiple sclerosis – a horrible, degenerative neurological condition which has slowly stolen her independence – and continues to do so. I’ve written about this in MS and me. This has meant that the focus of my care and fundraising has been my mum – and so the idea of my Dad being unwell just wasn’t something I’d thought about. My parents divorced when I was about 8 years old, and so since then I’ve had two worlds – one with mum, and one with dad. The world in which one of my parents was unwell was the world of my mum, and so it seemed natural that the world I shared with dad was the world in which I had an inevitably healthy parent. So this sudden reminder of the fragility of life was unbelievable. I started crying at unexpected times, breaking down every time my brain chose to show me a memory of weekends spent watching Formula 1 and eating baked bean pizzas, or of camping trips to car jumble sales, or a shared cycle trip into Cornwall back when I was *gestures at about my current hip height* yay high. I started to struggle to focus at work, my attention drawn to a world I had thought unshakeable.

Towards the end of March dad was booked in for surgery to remove one of his kidneys that had cancer in the lining, and the hope was that removing this would remove the cancer. We wouldn’t know until after the surgery, but the hope was that this had been caught in time. We crossed our fingers, set up a family and friends whatsapp group to share the message, and hoped.

The surgery went well, but shortly afterwards the wound “unzipped”, leaving a large open wound. The best way to deal with this was to cover this with a dressing that was changed regularly. As this was just before Easter, rather than being done at the local Doctor’s surgery dad had to go and visit hospital when the dressing needed changing – which was both more stressful and created more opportunities to come into contact with Covid. So our focus wasn’t on the long term prognosis, it was on the short term recovery – with dad experiencing significant pain coupled with an inability to sleep as he had to get up to pee regularly though the night.

As dad started to recover, the country started to come out of lockdown. It was now nearly a year since I’d last seen dad, and both of us were desperate to have a chance to be together in real life. We started making plans for a visit. I would hire a car and drive down to reduce any chance of picking up and transmitting Covid. To be extra safe, I’d self isolate for 7 days before travelling, and take all the food I would need with me so I could avoid coming into contact with people in the services. We set a date, booked a car, and even booked an Airbnb for a second trip down later in the summer, resurrecting a pre-Covid tradition of having a father and son weekend away together once a year.

A week before I was due to travel down, there was an update. The cancer hadn’t gone. It had already spread beyond the kidney which had been removed. The cancer was more serious than we thought, and the prognosis for this type of cancer was a 50% survival rate after two years. The best hope was immediate chemotherapy, which might increase life expectancy to 70% after two years.

I would attempt to write how I felt hearing this news, but any words I put down will only ever be a shallow representation of how I truly felt. This was the first time I’d been told the potential impact, and it meant that I had to immediately shift my focus from “when dad is better” to “make the most of what time we have”. Even now, typing these words… the pain I felt and feel is bringing me to tears.

Bad news had become worse news, and every one of the hundreds of miles between a son and his father was a barrier to the simple need to be in the same space – to hug, to smile, to laugh, to love, to cry – to share.

And so the final piece of news was the unwanted cherry on a cake full of crap. As our need to be together was at it’s greatest, the advice of the nurses was clear – as the chemotherapy would strip dad’s immune system of all natural protection, he shouldn’t have any visitors. The visit would have to be cancelled for at least 3 months, probably much longer.

Dad and I together at the SS Great Britain in Bristol in 2019 – one of the last times we saw each other before lockdown

If I’m honest, chemotherapy seemed to pass in a blur. Faced with the fragility of existence, I started to speaking to dad more and more often, using video calls to try and provide emotional support whilst filling my own need for contact. It was clear that the chemotherapy was taking a toll, but I think both of us felt a need to project some normality in a time of abnormality.

Eventually the months passed, the chemotherapy passed, and the requirement to remain isolated passed. The first weekend that dad felt well enough for a visit I hired a car and headed down south. I think both of us were worried about how this would feel after over a year apart – what words do you say in this situation? In the months since, we’ve found a rhythm for regular visits, trying to find a place of normality. The good news is that for now all the signs are that the cancer is in remission. The bad news is that everything I’ve heard says that it isn’t a case of if it comes back, but when. Maybe we’ll be lucky, but it does feel feel a bit like living on borrowed time.

For me, one of the key questions last year was – what is 2022 going to hold? It wouldn’t feel right to head off to America if there was any risk of dad needing treatment – it would just feel wrong to be an ocean away if there were any complications. I remember distinctly the phone call where I asked, somewhat tentatively, how dad would feel about me heading off to America. Dad’s view was that you have to take advantage of the time you get on this planet, and so the ride was on.

In many ways the ride is inspired by my dad and his adventures – one of the things I feel lucky for in my life is inspiration and support for the idea of pushing your boundaries and doing things that are out of the ordinary. Whether it was overnight car trials in a vintage Austin 7, or supporting me to cycle the length of the UK, my dad has always been one of my biggest cheerleaders. On top of that he has also inspired me with his own adventures – most notably a drive the length of the American continent, from New York to Alaska to Tierra del Fuego – which took place ten years ago. So it’s great to know that I’ve got his support as I head off on my bike ride across America. Of course there is a part of me that is worried that something might go wrong whilst I’m out there, but one of the lessons I’ve learnt from my dad is that you have to assert the power of your own existence – because you never know when life is bringing you lemons.

Afterward

During this difficult time, I found solace in a couple of unexpected places. The first was a new watch – the first I’ve bought since I was about 9 years old. I wanted something to help remind me to make the most of every minute of every day, and found exactly what I was looking for in the Slow Watch. Essentially, it’s a little sundial on your arm – it has a 24 hour clock face and only has an hour hand. You can still tell the time fairly accurately, but given that we live in a world where I’m surrounded by screens that have the time correct to the second I don’t need anything more precise on my wrist. Whenever I look at it, I’m reminded of where I am in the day, and the importance of valuing the time I have.

A picture of my slow watch
It’s about 7.15 – but more importantly, it’s time to start thinking about winding down for the day

Secondly, shortly after dad’s diagnosis, I purchased three bits of art from Nightwhale Designs, an artist who specialises in handcrafted messages of positivity. The three I have are all quotes, painted on a galactic background, which reminds me of one of my favourite book series (Wayfarer, by Becky Chambers). The first reads “just because you carry it so well, doesn’t mean it’s not heavy“. The second reads “you can do anything, my love, but not everything“. And the third, based on an old religious quote which appears on my grandparents grave, reads “all shall be well, and all shall be well, and all manner of things shall be well”. Each one of these is a message that means a lot to me personally, and helps keep me grounded. I live in a world where I am constantly helping and supporting other people, and sometimes I need to be reminded that it’s OK to take a bit of time for myself. In particular, as I prepare for this ride, it’s easy for me to focus on all the things I want to do for other people – raising money for charity, and raising awareness of mental health – and to forget that this ride is a part of my own mental health recovery, and that it’s OK for me to make decisions based on what I want, and not what other people want.

The third and final purchase is a book called “The Choice”, by Edith Egar, which I bought as a present for dad but did that thing where I read the books I got for other people. It is an incredible book – one of a very few that have changed how I see the world. Edith survived Auschwitz, and in the first part of the book she describes how that happened – making it clear that it was a series of random events that allowed her to survive when so many people didn’t. She then describes her life afterwards – how she moved to America, and then after raising children took night college and then University to study psychology, eventually becoming a clinical psychologist. And then she applies what she has learnt in her training to her own life. The book is full of quotes that helped me shift my perspective on the pain I’m experiencing, and I’d like to share a couple here – for both my benefit and yours:

“Our painful experiences aren’t a liability—they’re a gift. They give us perspective and meaning, an opportunity to find our unique purpose and our strength.”

“We cannot choose to have a life free of hurt. But we can choose to be free, to escape the past, no matter what befalls us, and to embrace the possible.”

“You can live to avenge the past, or you can live to enrich the present.”

“There is no hierarchy of suffering. There’s nothing that makes my pain worse or better than yours.”

“Perfectionism is the belief that something is broken – you. So you dress up your brokenness with degrees, achievements, accolades, pieces of paper, none of which can fix what you think you are fixing.”

Edith Egar, The Choice: Embrace the Possible

So, that’s a little insight into what’s been going on for me over the last year, and what is going through my mind with one month to go before I finally set off on this bike ride. I’d like to leave you with one final thought, based on how Egar’s writing has impacted me.

As I reflect on the pain I’ve faced over the last year since my dad was diagnosed with cancer – on the pain I have felt since I had a mental health breakdown in 2017 – and on the pain I’ve experienced over the last 15 years since my mum was diagnosed with MS – I want to thank everyone who has been by my side, and supported me with unconditional love, for which I am eternally grateful, and which I will endeavour to repay each and every day.

But I also want to say – I want to scream and shout from the top of slated rooftops and rocky mountains – through eyes that leak and tears that drip even as I type this – that I am not defined or limited by that pain. I am making a choice. I am making a conscious decision to take that pain and turn it into something positive. I accept that to be human is to be vulnerable – to love, to lose, and to live with the knowledge that our time on this planet is finite. I strive to make the most out of my time on this planet. I believe it is better to try to chase your dreams knowing that you might fail than to let that potential failure stop you trying in the first place. I embrace the possible with arms wide open. I will focus not on what has been, but what will be. And, ultimately, I will take my pain and use it to make something beautiful – to make the world a better place.

I am not limited by my story – I take each and every part of it – the good, the bad, and the ugly – and I treat it as a gift.

I am not defined by the pain I have experienced, but by what I choose to do with that pain.


2 thoughts on “What’s really been going on

  1. Antony – thank you so much for your raw sensitivity and vulnerability – they are great strengths and it’s very inspiring what you’re doing.

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