THE NEW NORMAL #47 – ALL THE FUN OF THE FAIR

Throughout my ‘cancer journey’ there have been numerous references to normally fun activities which, when put together, make up something of a depressing fun fair. There’s the emotional rollercoaster, the medical merry go round, the diagnosis coconut shy and the helter skelter of mental health for starters and that doesn’t even account for the house of horrors that is the inside of my body these days (or the hall of mirrors that is the outside of my body for that matter). The last few weeks have seen a few new exciting rides added to the fair so join the queue, collect your tokens and prepare to be inappropriately touched by the carnival folk as they check that you are safely secured in to the ride.

First of all we had the Cortisol Cascades; a ride that lowers you slowly and gradually into a state of extreme lethargy and painful joints along with a dislike for food and an inability to keep food inside you. Stepping off the analogy wagon for a moment, this was a bit of a serious moment and quite a significant turning point. Essentially, the immunotherapy has really started to work through the gears and, while that means that my tumour is now taking a serious battering, so are some of my more well meaning bodily functions. One such function is that of my adrenalin glands which, unbeknownst to me, have been kindly producing cortisol for me every day of my life and we need cortisol to help us balance hormone levels and deal with stress as well as having enough energy to cope with the day. A blood test showed that my morning cortisol levels were at 10% of where they should be which, considering the levels go down during the day, sort of explained why I was struggling to muster any energy, enthusiasm or appetite. It was a bit like turning up to the starting tape of the London Marathon after a 3-day bender with Dylan Moran, Oliver Reed and Amy Winehouse and wondering why you could barely walk, let alone run.

Fortunately for me and my adrenal glands, I still live in a country with a National Health Service (for now) and once my GP and Oncologist spotted this anomaly in my blood sample, they prescribed me some new drugs which did just the trick. I genuinely felt like an inflatable Santa on 1st December who, having spent the year deflated and useless in the cupboard under the stairs, was now immediately fully inflated and smiling maniacally at passers by while Christmas songs played (odd for July but these are odd times we live in). I felt better than I had done in months with my appetite back, energy to spare and neither food nor booze made me nauseous anymore so there was much rejoicing and we purchased a paddling pool to mark the occasion.

The next ride to be added was one of those kiddy rides where you get in a small black cab and get taken at a snail’s pace through the imaginary and geographically incorrect streets of London. For the second time in 2020, my long suffering wife and I had to go to London because the medical facilities in Devon and Cornwall weren’t quite what I needed and so it was that we found ourselves flying up the A303, waving at Stone Henge and lamenting the loss of the Lucozade sign to find ourselves sitting in a park in West London. Here, we had the most socially distanced of catch ups with a couple of friends – all of us glad to see a different face or two since being under lockdown rules – before heading for bed after a small drive further North and negotiating my uncle’s disastrous plumbing in his vacant flat.

The following morning we took a whistlestop tour of my old stomping grounds (Camden, Holloway Road, Islington) on our way to Guy’s Hospital where I found myself going from driving my car to being naked apart from pants in just under 20 minutes – this was legitimate as part of preparing for procedure, I didn’t just rock up and strip naked like some errant country bumpkin unaware of social etiquette. The reason for my visit was the pesky nodules on my lungs didn’t seem to be going anywhere so they wanted to sneak a needle in via my back, take a little sample and then sneak out, all guided by the live scan of my body provided by the CT scanner and with me under local anaesthetic – this is known as a CT guided biopsy.

The plan was to get in at 8.00am, strip naked and get cannulised (so far so good), before the usual spiel from the surgeons who like to go in to a lot of details to both scare and impress you in equal measure – they must be a nightmare on first dates but the flashy car and “I’m a surgeon” line probably makes up for it. By the point I was lying face down wearing nothing but pants and a face mask (I know, a strong look for date night, right?) and being fed into the all too familiar giant Polo there were at least 8 people milling about me from nurses and radiologists to anaesthetists and surgeons – all of them wearing lead aprons to protect them from the radiation that’s about to spin around me. It’s disconcerting enough for me, a 40-year-old adult of sorts, but I can’t imagine what this experience is like for someone elderly and frail or a small child who can barely say anaesthetist let alone spell it. No amount of banter or kind words makes this feel any less brutal as they place stickers on your back to mark out the area where they want to insert the exploratory needle.

Then comes the waiting. For fifteen minutes that felt like fifty I lay, face down, the only sound I could hear was my own breathing, I didn’t move and after a while I thought they might have forgotten about me. Then there was the sound of a door opening and everyone coming back into the room which didn’t feel like it was what I should have been expecting so my heart sank a little. Then the surgeon told me something that I hadn’t even thought about hoping for; the nodules on my lung had shrunk. In the last scan they were around 1cm long but now there were less than 4mm long and that means two things; firstly, the nodules were too small to take a biopsy and, secondly, shrinking is not something that cancer just does on it’s own.

I was in a bit of a daze as I’m not accustomed to news this good but, as I was detangled and ushered out of the CT scan room, I was essentially told that there was no evidence of malignancy on my lung and, therefore, there is nothing stopping the surgery on my pancreas from going ahead as soon as the surgeons are ready and available. That’s it. No waiting for scan or biopsy results, no rare problems that seemingly apply only to me and no ifs, buts or maybes. I was discharged quicker than you can say ‘thanks for not sticking a needle through my back and into my lungs’ and then we drove happily back to Cornwall eating leftover pizza and generally just feeling a little bit lucky.

I have to be careful though, I’ve learned that. This good news was like winning on the claw machine and getting some small cuddly toy but all that does is qualify us for a go on the rifle range with the big money prizes are. The fact that the cancer hasn’t spread is fantastic, don’t get me wrong, but there is still a grumpy old tumour clinging on to my pancreas and that’s the end game here. I’m also acutely aware that for every bit of good news and good fortune that gets handed out in this cancer game there is just as much if not more bad luck being handed out to other people. I guess, in that way, we’re having a ride on the dodgems right now. For every nifty bit of steering and narrow avoidance there’s someone on the other side of the track getting absolutely battered by some dick in a wispy moustache and a beanie (the beanie has cancer written on the front). For now, I have one more round of treatment to go and then we wait for a surgery date which will, I’m sure, bring a whole new world of fun to write about.

THE NEW NORMAL #46 – FORTY, NOT OUT

When my wife turned forty I, like the loving husband I am, pointed out that she was half-way to eighty. She was, quite understandably, annoyed with me but then I took her to a fairground and we went to a tapas restaurant so all was forgiven….eventually. Yesterday I reached the ‘halfway to eighty’ (these words were handed back to me like the ultimate regifting) point and even my step daughter uttered the words “you made it”, such was the palpable relief in our house as we all sang happy birthday. Twice. And washed our hands. In all seriousness though, it’s a major milestone for me that, four months on from being told that I have months to live I’m still here and having a big ass slice of birthday cake – 8 more months and I’m up to a year and I think (I think) that means I will have beat the system. I could be wrong though.

For anyone curious, I got 40 Smurfs from my sister, my parents bought me the Beano annual from 1988 and my wife got me a bottle of Mad Dog 20/20 which any teen from the 90s will have distressing memories of – clearly they want me to regress but I’m not sure which age to regress to. The best present, however, came just under a week early with an unexpected call from the London team which had a slightly different take on the last set of scan results. A number of radiologists had taken a look at the latest snapshot of my insides and all agreed that my tumour had in fact not grown at all (very good news) but that they still couldn’t work out what the nodules on my lungs are. If the lung nodules had grown then they would be confident in it being cancer and if they had diminished then the safe money would be on some inflammation.

Unfortunately, my nodules are in the ‘mystery box’ category so we’ve won another trip to London so that they can take a biopsy of my mystery nodules and finally work out what the hell they are. There are two ways they can do this, the first being to give me a general anaesthetic and cut me open to whip out a sample. Believe it or not, the preferred option (which I’m booked in for) is to pass me half way through a CT scanner and then, using that image, the surgeon will use keyhole technology to remove a sample from the nodules. Oh, and did I mention that I will be entirely awake during this? Well I will be and, frankly, I’m a little bit on the nervous side of proceedings. Both procedures carry the risk of puncturing a lung which would then require it to be drained and pumped back up again but the doctors seem pretty chilled about this so I’ll take my lead from them on that front.

The other strange birthday gift I got was flu-like symptoms all wrapped up in pretty bow. It turns out that some of the side effects of Nivomulab (i.e. the immunotherapy drug) are that you develop incredibly achy joints, the kind of fatigue that makes you tired just thinking about getting up and, to cap it all, daily bouts of extreme nausea with flurries of vomiting. Now, on the down side there’s aching, fatigue and vomiting (I’ve just told you all that, keep up) but on the upside I have been told by two separate doctors that this is a very good sign. Not because they’re sadistic or just don’t like me but because this is an indicator that the immunotherapy is starting to have the desired effect of kicking my immune system in to action. This goes some way to explaining the lack of tumour growth and adds another glimmer of hope but it also means my next treatment has been put back a week to make sure I’m fit enough to receive the Nivomulab.

All of the above means I’ve been feeling pretty elderly recently but I haven’t yet slumped in to feeling sorry for myself. I have, instead, been feeling pretty sorry for my wife who has now added physical therapist, motivator and nap-waker to her long list of jobs while I just shuffle around saying ‘sorry’ a lot and focus on just staying alive as best I can. One of our frequent bed time exchanges is my wife telling me that she hates that I have to go through this and I always come back with the fact that I hate that she has to watch me. It is the only thing worse than having cancer, watching someone you love go through every twist, turn, low and moderate high with all the little grunts, sighs and gasps for air along the way. I can only ever liken it to watching my wife go through pregnancy and giving birth but at least we got something good at the end of that and it only went on for nine months.

I have managed a bit of home schooling and this morning there was a moderately energetic game of frisbee golf on the Wii but beyond that I am not good for much. It has made me panic slightly that this is now as good as it gets and I will never feel any better than I do right now but I have been assured that this is very much not the case so that gives me something to look forward to. If this does turn out to be ‘it’ though then I look forward to sitting outside the front of my house and predicting the weather due to how painful my joints are whilst gently rocking in my chair and lazily plucking a banjo.

I am glad to be 40, it’s another milestone and I’m really rather glad to be growing older because, well, what’s the alternative for everyone apart from Benjamin Button, Dorian Gray and Paul Rudd? Next up is my little boy’s 6th birthday in October and then Christmas – I do like to have things to look forward to so that I have something to keep going for and with music venues, cinemas and theatres still out of bounds there’s not much of my usual fun to get excited about. Still, within the next 9 months I might finally get to tackle that bucket list as another birthday gift I was generously given was a ride for two in a hot air balloon so I just need to convince my wife to come with me and muster enough energy to climb in to the basket.