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.

One thought on “THE NEW NORMAL #46 – FORTY, NOT OUT

  1. Incredibly proud of you. Living every minute. We’re praying that you will have more time, to make more memories, to soak up the love around you. Keep strong, you have an army of virtual supporters. Xxx

    Liked by 1 person

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