My C Journey

7 minute read time.

My name is Andy, I am 45 years old, and I have f***ing prostate cancer.

Somewhere in the fog of doubt, worry, and the attempt to carry on with life as normal, I am here, floundering and trying to make sense of it all. It’s been nearly four months since my diagnosis and I am not entirely sure how I am supposed to feel. I am (not) fine. I am (not) healthy. I am (not) happy. The use of parentheses is my attempt to try and convey the weird limbo of living with and accepting cancer. It is like being in two simultaneous states of being. Perhaps cancer is the Shroedinger’s cat of the illness world; you are simultaneously both fine and not fine, healthy and not healthy, happy and not happy. Either way… something odd is definitely happening regardless of the cat…

To use the accepted parlance, I am near the start of my cancer journey. The four months have passed quickly, and that initial moment - the morning of the 30th June - will become an unwelcome but unavoidable addition to my small collection of memorable dates.

I may as well begin at the start, so it was in Autumn 2022 when I first ‘noticed that something was wrong’. As innocuous as I imagine these starts are for many cancer patients, mine was just an increased need to urinate in the day and at night. Not a massive problem, but one that was worth my checking out. My GP asked me to monitor it - so I did, and after no improvement I had a blood test to check my PSA level. This stands for prostate specific antigen, and is a marker for the body’s release of a protein which can indicate problems with the prostate. Inconveniently, one’s PSA can be raised for a number of reasons and does so naturally with age, and whilst my reading of around 20 was high (anything over 4, depending on age, should be investigated), the thinking was that it might be due to an infection. Cue further, more rigorous tests in the early Spring of 2023. Now it is fair to say that I was relatively complacent during this period. The rigorous test involved a ‘digital inspection’ and a referral to the urology department at the hospital where another digital inspection ensued. I joked flippantly to friends that although I had lived in Brighton for ages, my arse had had more male attention in these past few weeks than in the past 20 years. Yes, I was very complacent… but this was justifiable. The diagnosis was that my ‘grossly enlarged’ prostate (gross? Thanks!) was probably acute prostatitis and required a course of antibiotics. I was comparatively young and had ‘no risk factors for prostate cancer’.

I returned home, satisfied and keen to get on with my life. Mmmm. Well, the antibiotics had no effect on my symptoms, and a later PSA test threw back a reading of 90. This clearly triggered more urgent action, as I was booked to have an MRI scan a week or so later. It was now early June, and in hindsight, I should perhaps have been more concerned, but I think a certain level of denial had kicked in. I’m too young for cancer, it could be a serious infection, it could be anything. So that brings us to that unwelcome date - the 30th June.

From what I recall now, my dominant reaction to the news that day was numbness. Shock, numbness, and a vague sense of disbelief. Oh ok, so this is really happening. I had just booked a couple of hours off work, naively maybe, so needed to return straight away. I was clearly numb and shocked as I nearly dropped my motorbike in the hospital car park, because I tried to drive away having forgotten to remove the disc lock first. The twenty minute drive back to the school I work at was awful - I could just about concentrate, but my mind was whirring, and my emotions were churning, and as the tears slowly filled my eyes I pulled over in someone’s drive in the countryside. Five minutes. Pull yourself together. You need to get back to school, finish the day, and get home. Needless to say, this was incredibly difficult. The phone call to my wife was heart-wrenching, as were the conversations with close colleagues. The lessons were ok as I could distract myself. But later, at home, breaking the news to parents and the implications of what my earlier meeting now meant ensured that the new sickening reality was dawning. 

The inevitable what ifs and whys emerged as I discussed what had happened with my wife. What if the doctor had referred me sooner? Why did they say I had no risk factors? Why didn’t they book an MRI scan sooner? It all seems irrelevant now, but at the time, our anger was very real. I believe that the honest answers to those questions are simply down to statistics and shitty luck. I could easily have been suffering from an acute infection - prostatitis - and I was unlikely to have cancer, given the data. I have no idea what the chances were: 1 in 50, 1 in 10, maybe even 1 in 4? My parents are both healthy and there is no family history of cancer. I had been leading a healthy lifestyle, not smoking and exercising regularly. Ce la vie. 

To return to the present day; I’ve been on hormone therapy since the initial diagnosis, and I started chemotherapy in late September. I seem to be responding well, and am feeling fine so far. To reference Dr. Kubler Ross’ stages of grief: I have certainly passed the anger and denial stages, and I may have flirted with bargaining, but didn’t have much in the way of chips. I don’t think I’m depressed, so that should leave me at acceptance. And here we are; I am (not) fine. I am (not) healthy. I am (not) happy. 

Actually, I want to scrap the last one. Because I am happy. In fact, I can honestly say that I have never felt less alone. The love, support, kindness and just the small gestures of especially my wife but also my family, friends and colleagues has been humbling. Even the kids at my school now know, and just the slight change of nuance in the ‘how are you doing, Sir?’ makes me smile and feel glad. I am doing ok.

Thinking about all this has reminded me of something written by the brilliant, late American writer David Foster Wallace. He used the example I am thinking of twice in his work; once in the novel ‘Infinite Jest’, where an old timer at an AA meeting gives advice on living with addiction to a younger man, and once for his commencement speech to graduates of Kenyon College where he wanted to impart some thoughts about how they might live their lives. Here it is:

There are these two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says “Morning, boys. How’s the water?” And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes “What the hell is water?”

The meaning I take from Wallace’s illustrative story is this: living with cancer can be overwhelming. Overwhelming for your mind to process. Overwhelming in terms of doubts and fears and questions. Overwhelming for your loved ones. It is a funny truism that in life, when the big things happen to us and around us, we can forget about the small things. But I am finding that the small things that we often ignore or take for granted can give us solace and joy. Of course, spending quality time with the people we love and cherish is of keen importance, but let’s face it - the majority of our waking lives is spent in these seemingly insignificant times between the bigger stuff, and we get to choose what we want to focus our attention on. Memories of happy times. Walking along or looking outside and noticing the birds and animals. Really savouring a cup of coffee. Listening to music. Feeling the fresh air on your face. These things are water. Spending time writing and reading short messages to friends and family. Hugging your loved ones. Stroking your pet. Wearing comfortable clothes. Being polite to people. Being nice.

These things have taken on more importance to me, have been invested with more meaning. Perhaps they could for us all?

Anonymous
  • This is a great read. Thank you. There is so much of your experience and thoughts about having cancer (or another cat version of me that I am observing having cancer!) that resonate with me. And we share a cancer 'birth' day, I was diagnosed on 30th June 2023, after a month of tests having found a lump on my leg. Different cancer though, read my blogs if you want the skinny. The thing that I most want to agree with you about is how great other people are; I am getting through my 'journey' (not a fan of this term!) because my family and friends have been amazing (as have several of my school colleagues, another match!)  I am in a really bad place with my treatment at the moment and its the great people that I know that our lifting me right now. I appreciate them and I tell them. And I appreciate you writing and sharing this, thank you biker (I would say yet another match but my bikes don't have engines and I don't get to wear cool leathers!) Good luck my friend, keep the rubber on the tarmac!

  • Thanks! I've just read some of your posts, it's great that you keep such a dry humour despite all the crap. How are you managing with work? Still trucking on with it? I also have a non-engined bike which I love riding on the South Downs but it's current out of commission and needs TLC to get it back in nick. All the best with your treatment; I'll keep my fingers crossed for you.

  • PS I don't do the leather thing (at least not on my motorbike...)

  • Hi Brighton Biker

    It's strange, isn't it, that it's possible to admit to being happy whilst having cancer? And feeling well.... I am both for most of the time. At first, the cancer diagnosis filled my whole attention 24/7. Now, nearly 2 years on, I don't think about it much, and try to focus on other things. It's only when I'm waiting to have tests, or scans, that I think about it more.

    I have been fortunate in that I don't get any pain from my cancer, and the side effects I've had from the treatment have been serious, but not debilitating. When I read other peoples' posts, I am in awe of how resilient and strong they are! 

    I wish you well with your cancer experience ( avoiding the J word!) and hope your treatments are successful! Keep on keeping on...

    Candysmum

  • An excellent read and very true