THE NEW NORMAL #36 – THE TWIST

Well, here we are then. You locked down? We’re locked down. Mad isn’t it? Not as mad as the people who think ‘social distancing’ means air kissing or only having two pints before the pubs shut down but, still, it’s a wild time to be alive, right? I mean, our grand children and great grand children will read about this period in modern history the way we read about the plague or the second world war. Nevertheless, as long as folk have enough frozen pizzas and toilet roll, we should be alright, shouldn’t we?

Now, the original title for this entry was ‘The Other C Word’ as I was going to focus on the issues of having cancer during the coronavirus outbreak but events have somewhat overtaken me on that front. You see, I had my latest scan two weeks ago and I got the results on Tuesday over the phone which, well, they weren’t good. This is the bit in the movie of my life where you think everything is going OK but then a twist comes along to throw you for a loop and the hero (that’s me) crumples to the floor in disbelief.

It seems the four sessions of immunotherapy did little or nothing to the cancer on my pancreas which has now grown instead of diminishing as had been the not unrealistic hope. This basically means that the immunotherapy currently on offer via the NHS or any other mainstream medical route is of no use to me. The options, therefore, would normally be either chemo or clinical trials but, with the current lock down in place neither of those is massively practical nor likely in the short term. The prognosis, then, is months. ‘Months’. Funny how that can seem like an absolute age or the blink of an eye depending on the context. “I’ve been practicing the yo-yo for months” compares much more favourably to “I only have months to live”.

The weird thing is that whoever has to deliver this news over the phone almost always has to ask, “do you have any questions?” at the end of the call which is such an absurdly crazy thing to ask in that situation. I want to ask “How many months? Why? What did I do wrong? Why do I deserve this? How do I tell my wife and my stepchildren? How do I look my 5 year old boy who I adore with every fibre of my being in the eye and tell him that although I look fine, there is a strong chance that I will have to go in to hospital one day soon and I will never, ever come home?”. But you don’t, do you? You just say, “Not at the moment”. I even thanked her for the call. Christ I’m English.

Since getting the news on Tuesday (nearly four years to the day since I got my original diagnosis, timing fans) we have been through a range of emotions, almost entirely negative. I say ‘almost entirely’ because through all of the bitterness, the biting anger, the depths of despair and the overwhelming tide of sadness there has been love. I don’t mind admitting that I have sobbed uncontrollably at the idea of leaving my little boy without a daddy (that word alone breaks me), I have hugged my wife so hard and close through the fear of leaving her behind to pick up all the pieces and I have slumped to the floor in a hopeless heap after expending the energy taken to tell my family over the phone that I might not make it to Christmas. But, through all of that, I have felt love washing over me like a healing tide. Every message, thought, kind word and act of generosity has been truly appreciated and felt. 

Right now, I have made an appointment to finalise my will over the phone and I have started to think about how I want to leave things for my family but that doesn’t mean I’ve given up. There are outside hopes of getting on to a Clinical Trial at London’s Royal Marsden hospital or Christie’s in Manchester – Derriford hospital in Plymouth have stopped all trials at the current time due to the coronavirus – and failing that I will go down the chemotherapy route which works better for those that have already had immunotherapy but it’s a nasty treatment that isn’t great for quality of life. Beyond that we’re into miracle territory and I feel like I’ve probably had my fair share of those already in life so who knows.

There’s not much else to say other than that I am, as a friend said, ‘the luckiest unlucky fucker’ in the world as I have the perfect excuse to stay at home with my family in the sunshine. Making memories and getting things in order is the name of the game right now but I will do my best to document things as I go, for the sake of history and my son’s understanding of things when he’s older. I’ve been trying to think of how to describe where I stand at the moment and it comes down to two feelings; firstly, I find myself looking in to the future and seeing myself fade out of events like the family photograph in Back to the Future – school sports days, standing on the side lines of football matches, first pints, graduations, weddings, grandchildren. I can see them happening as clear as I day, but my presence is just a misty eye and a remembrance rather than anything more tangible. Secondly, I have this sense that the as yet unwritten roadmap of my life is being folded up before I’ve had the chance to complete the journey or at least see where the finish line was supposed to be and that feels deeply unfair. Partly because I had so much journey left to go and partly because I’ve always loved maps.

The bottom line, however, is this; I have lost count of the number of times my son has said “Daddy, look at this” or “Daddy, can you help me?” in the last few days but every time it feels like someone is killing a part of me, knowing that one day in the not too distant future he will forget that I’m not there any more and call out like this only to be met with silence. Deafening, tragic silence that will become his new normal and I hate myself for being the person who will make that his reality which, in turn, drowns me in guilt and so the loop goes on. Each day gets a little less disorientating and confusing but, then again, the current normality of living two weeks into a coronavirus lockdown is not much comfort. So, it’s a race against time – will coronavirus block me from accessing any new treatments or will I hang on long enough to get some help to prolong what now appears to be inevitable. There’s the twist in the movie for you but the end is not yet written so hold on, it’s going to be a bumpy ride to the end credits.

THE NEW NORMAL #35 – BUSY DOING NOTHING

Welcome back sports fans, the bases are loaded and we’re entering the fourth quarter with everything to play for. I feel like that’s something that might realistically be said by an American sports reporter but I’m not sure which sport. Maybe swimming. Anyway, the point is, today was the fourth and final round of treatment which is worth commentating on in either an American accent or any other. Much as with the other treatments, it was a case of wrapping up, turning up and sitting up straight in the waiting room. This was followed by the slight variation of being put in a private room for a change – I think they’ve twigged that I’m listening to all the conversations around me so they’re protecting the other patients now. Oh, and a reclining chair that had been placed too close to the wall causing me to travel half way across the room when I pressed the recline button.

The big difference with number four is the context. In the last three weeks, another c word has been dominating the world as coronavirus or Covid-19 has become the most talked about thing on the planet. Now, I don’t want you thinking I’ve turned in to a panic buying survivalist with bunker tendencies and normally I’d be keeping tabs on things but generally keeping my distance. The difference in 2020 is that, thanks to the other c word (no, not that one) I am now one of the higher risk people in the world (statistically speaking) and so I approached the hospital with a little more trepidation than normal. In fact, I donned a full Lycra one-piece, free-climbed up the outside of the hospital and then abseiled down the inside of one of the incinerator chimneys just to avoid the cluster of coughing people gathered between the entrance and Warrens bakery. This is, of course, utter nonsense (anyone who has seen the footage of me attempting to use a rope swing in Mexico will know I lack the upper body strength for starters) but I did take the most English of precautions – I subtly raised my scarf up over my mouth and nose. Take that, pandemic. 

Three different hand sanitisers and a flight of stairs later, I was set up in my special room being visited by my key worker with the results of my latest blood test. It seems my recently overactive thyroid has burnt itself out and is now, well, underactive – as my friend Adam would say, this is very on-brand for Roland Monger. An underactive thyroid basically means a further dip in energy (great), putting on weight (double-great) and an increasingly messed-up metabolism (you get the pattern). There is a pill for this, of course, but that takes my daily prescription up to 6 pills, four injections and four tiny but VERY sharp finger stabbings to test my blood as well as a hug from my wife (don’t tell her that’s not on the doctor’s prescription, she doesn’t suspect a thing). Anyway, for now I get to have 6 weeks without treatment to give my body a chance to recalibrate but during that time I’ll have a CT scan just to see what’s occurring and how my cancer has reacted to my immune system which now resembles the Rock, I presume.

Aside from all the physical shenanigans, I wanted to address something else with this blog entry something that has been playing on my mind a little. I get a lot of great comments from people on reading my meanderings, lots of support and plenty of superlatives like ‘brave’, ‘positive’ and ‘inspirational’ which is all lovely but it is only part of the story. You see, there are days, most days in fact, when I feel sorry for myself, a bit angry at my situation, desperately sad for my little boy or just plain depressed. Some of this is down to the thyroid issue, some of it is because of the treatment and some of it is just mental health stuff caused by having cancer but all of it weighs heavily on my mind throughout everything I do.

For example, in and around all the appointments and consultations I still have to go to Lidl sometimes to pick up toilet roll, today I went to B&M to get one of those giant bags of tea (like, 1000 bags not one massive tea bag, I’m not mad) and two weeks ago I spent a thrilling half hour in Clarks buying school shoes (again, for school children, not for me – still not mad). For large parts of those mundane activities, my life is no different to how it was pre-diagnosis but there are moments – unexpected instances – where everything stops for a few seconds and I get this wave of, well, that’s the thing; I don’t know what to call it. In my head, it’s pre-grief of my own death which gets triggered by literally any story, film or song where the father has left or died, any time I see any milestone father’n’son artefacts (bike, football, shaving equipment, pint – it’s a minefield out there people) or any point that sends my mind off on a tangent to ‘what if I wasn’t here for this’ world (like Disney World but just without Mickey Mouse for some inexplicable reason). “But Roland”, I hear you cry, “what do you do to quiet these voices in your head?”. Well, I keep busy. Hella busy.

I’m not doing your standard anti-cancer stuff though, oh no. No marathons or taking up triathlons for me, that’s far too passé. No, instead I’m trying to be an attentive husband, play an active roll in raising four kids and do up a crumbling house. I’m getting as close as I can to working a full-time job, my other blog  (Listen With Monger, check it out) just sauntered past the half a million clicks mark and just this week I recorded the first episode of my first podcast with a good friend – it’s about funerals but in no way as bleak as that sounds. Throw in keeping up with friends, family and a semi-professional career in playing Xbox football and, well, there is no rest for the cancerous. This, however, is not a healthy thing so it bothers me when people say I’m inspiring them or a positive influence – I take the compliment, sure, but really I’m just coping in the only way I know how. Stay busy, don’t stop to think too much about what might or might not happen and keep distracting yourself with new shiny things like that TV series you never got to watch or the thrill of selling old junk on eBay. Oooh, a penny….

So, my advice for this entry would be to look within for your own inspiration and your own coping mechanisms. What works for one will be wholly inappropriate for another and what keeps me distracted from my own self would be the very idea of hell to a marathon runner. I have had to learn, however, that my body is not overly happy with what my brain wants to do to keep distracted so I’ve been ‘resting’ which is just THE WORST. The plan now, therefore, is to spend three weeks getting back to zero, take all the meds and then I’ve got three weeks to be actually properly active before bloody ‘rest’ comes back on the agenda again. Still, I know what I’ll be watching when I rest as I have taken the advice of my podcast buddy and started watching the excellent ‘Inside No. 9’ which is just fabulous albeit slightly unsettling when you watch three episodes and then leave your ward to realise you’ve been in private room number 9 the whole time. I’ll be back when I’ve had a scan but for now I’m off to have a cry in B&Q because of a bucket or something.