The business end of life (on steroids)

Caution: I'm writing this post while on steroids.

I scribbled the bulk of it on my phone between 11pm and 1am last night as said steroids kept me awake. I'm growing to appreciate the dexamethasone tablets which I was fully loaded with during chemo at hospital yesterday and will carry on taking, a decreasing dose each day, until Thursday morning. As well as protecting my immune system while now on my chemo pump at home, these steroids somehow sharpen and distract my mind at the same time - so I feel wired but also get a break from the mulling over which can lead me down dead-end mental wormholes. As the steroids wear off on Thursday, my mind and body will begin their weekend shut-down before I gradually pick up again from Monday onwards.

The steroids also keep my teenage acne rash at bay for a week or so. This has been the worse side affect during the summer; my skin probably irritated by the sun and the fact I've not rested as much due to our school-break high jinks, including much-needed time with our family and friends in Derbyshire for five days and a slightly quieter two nights away with Lisa in Stratford-upon-Avon. Last week was a bonus week off chemo to enable me to sync my monthly bone-strengthening injections with my fortnightly infusions. Although I did enjoy a couple of social outings (see below) and managed a four-mile run (my longest since treatment started), I spent a lot of the week catching up on sleep. Apparently, the cumulative effect of chemo can lead to increasing tiredness after a few months and I feel like I'm experiencing this - the need for daily naps now more important, especially if we're busy in the evening.

My eighth cycle of chemo at Burton Hospital yesterday means, amazingly, I'm now two-thirds through my first six-months of treatment, made up of 12 cycles. I'll have another scan as these approach an end and then find out whether I'll carry straight on with another three months, or have a break. Either way, if the drugs continue to do their stuff, it looks like I could be having chemo for Chrismas (yes, it is too soon for cold turkey jokes...).

Yesterday, I arrived at hospital at 9am but didn't start treatment until noon as I had to have my blood tests re-done as some of my blood levels were slightly low last week. The ward's GP also checked out my big toes which are red and sore around the nails, in case of infection. Thankfully, I was given the thumbs (toes) up to carry on with the chemo. My treatment includes four different infusions via my PICC line plus the bone injection (into my stomach), which altogether usually takes the best part of five hours. My frequent toilets trips, attached to the wheeled trolley holding the drip bags, led me to remark to the nurse: "I'm sure I'm just peeing this straight back out!".

My bonus week also enabled Lisa and myself to head to Moseley Folk Festival in Birmingham on Sunday to see one of my favourite US bands, Wilco. The Proclaimers were also supposed to be there but were replaced by Billy Bragg due to illness. After taking 30 minutes to find somewhere to park (Lisa finally spotting a restaurant with a pay and display!), we walked into the heaving, picturesque Moseley Park, which isn't routinely open to the public. My toes were sore and I just needed to sit down with a drink. Thankfully, there were seats in Speaker's Corner and we listened to broadcaster and author Robin Ince give a funny, moving and breathless (he was recently diagnosied with ADHD) talk on the Weapons Of Empathy. By the time Billy Bragg emerged at 7pm, we'd found a spot to laze near the main stage and I was feeling more relaxed. I've never seen Bragg before but was won over by his no-nonsense songs, and his wonderful pedal steel player. Finishing with the stirring 'New England', which the late Kirsty MacColl turned into a hit, empathy was again a key strand.

The last time I saw Wilco in Manchester in 2004, their frontman Jeff Tweedy was in a tetchy mood, in the throes of painkiller addiction. On Sunday he was in laid-back and wry form - keen to entertain, engaging at least one heckler with spicy banter. His band veered between the folky rock of their last album, Cruel Country, and more menacing material from their early 2000's career peaks, Yankee Hotel Foxtrot and A Ghost Is Born. Warm melodies one minute were interspersed with screels of feedback the next on songs like 'Handshake Drugs' and 'A Shot In The Arm'. I've not seen a group of middle-aged men so energised on stage for a long time, and the crowd loved it. The icing on the cake was a finale of Woody Guthrie's 'California Stars' where Wilco were joined by Bragg (all pictured below) who recorded his first Guthrie cover album Mermaid Avenue with them 25 years ago. It was one of the best shows I've seen for years and was everything I wanted (despite stubbing my big toe on the way back to the car), so thanks Lisa for encouraging me to go, even if I woke up in a daze for chemo the next morning.

One of my favourite Wilco songs 'War On War' (which they sadly didn't play on Sunday) paraphrases Jesus: "You have to lose, you have to lose, you have to learn how to die, if you wanna, wanna be alive."

Jesus puts it this way in Matthew's gospel: "Whoever wants to be my disciple must deny themselves and take up their cross and follow me. For whoever wants to save their life will lose it, but whoever loses their life for me will find it."

Learning how to die, to lose my life, feels like a nagging refrain in my mind at the moment. It’s still hard to come to terms with my diagnosis. I increasingly feel like we've been catapulted into the ‘business end’ of life, having to think about things like pensions and funeral plans that we could’ve put off for another decade or two pre-diagnosis. I was increasingly aware of my mortality as I entered my forties but in a vague, it’ll all be ok, type of way. Now it’s staring at me in the mirror and I’m rushed into playing developmental catch-up. I can’t explain how having 20 or 30 years of our expected future suddenly compressed like a cubed car at a breaker’s yard feels. I can’t explain because I don’t get it - I’m not old or wise enough to understand. This ongoing bewilderment and grief remains harder than the cancer treatment, for now at least.

I’m still having back and forths with God about how it would’ve been easier (and more humane) to have my cancer discovered while it remained curable. I sense God doesn’t mind me poking and prodding in an accusing way. He just soaks it up like a relaxed sponge (is there any other type of sponge?) and invites me to rest on her lap, as the ancient Psalmist says, “my soul like a weaned child with its mother.” I also regularly ponder Jesus - my welcome go-to when I need a human/divine example of deep suffering and real, unsentimental love that resonates - a respite from the mental games of theological Twister.

I don't know how to learn how to die, as Wilco/Jesus urge. What does it even mean? What if I don’t want to learn how to die yet, or ever? Isn’t that the point of heaven - a future to focus on, to (spiritually) bypass the reality of death now? So someone at my funeral can preach: “It’s alright, he’s gone home to heaven and is at peace now.” Bollocks to that. I want to live now, not when I’m dead (I realise this sentence doesn’t make sense on many levels!).

While I don’t feel ready to ‘lose’ my life yet, maybe I can ‘loose’ it instead (as I alluded to in a previous post). That extra ‘o’ makes it easier, more do-able. The challenge is to hold my life, dreams and hopes more loosely as I trust that, somehow, there’s a bigger picture in all of this that I may only see in the rear-view mirror. Maybe even a sense of an 'eternal life' that's already activated and sustaining me, as Jesus also suggests.

In cricket, skilled batters learn how to play the ball with ‘soft hands’ to avoid getting out. This means they hold the bat less tightly so the hard ball dribbles rather than flies off the bat when they are in defensive mode, lessening their chances of being caught out. I’m slowly learning to hold my relationships, my responsibilities, my future, less tightly - with softer hands (which is ironic as I’ve never had to use so much moisturiser on my hands due to my chemo-induced dry skin).

It’s a very slow process but I’m finding, also maybe ironically, that as I hold things more loosely I’m appreciating them more deeply. Things like watching Reuben score his first goal for Chasetown Colts Under-16s on Sunday morning, or having a lovely barbecue with my parents and siblings, then two days later sitting around a fire pit long into the night with close friends talking about the past few months. These things dig deeper than they did before. Their impression lingers longer and I savour them because I know they are finite (or a hint of the eternal?).

Maybe it’s also a good sign that I cry more easily these days. It took me a while to get singing at the festival because, every time I mouthed a line, I then had to pause to keep the tears back. They weren’t even poignant or sad words - just the ones I knew. I can also cry reading a poem, looking at a photo, watching a charity advert on telly, finding out someone wants to run, walk or cycle to raise money to fight cancer on my behalf, or just hearing something sad or funny. Lisa used to be the only person I knew who could produce tears on demand as a party trick, but I reckon I could run her close now. My waterworks increasingly remind me of one of my friends and mentors, Paul W, who cries often, sometimes mid-conversation. It’s disarming and beautiful when he does - a holy, gracious pause. I think it’s a pointer that my heart is getting softer not harder, that I’m becoming more human, more empathetic. I think that’s maybe what Jesus (who also cried - and I imagine - laughed a lot) was on about when he talked positively about losing and dying.

I was possibly damp-eyed when I wrote the words below after three and a half pints with three of my best friends at The Star last week. I typed it as I walked home bathed in street-lamp mist (pictured above), surrounded by the late-night suburban silence:

I’m finally enjoying life. Finally letting go. Finally entering in. Finally. Fully.

It was a fleeting feeling (no doubt alcohol enhanced) but, for the 30 seconds it took me to thumb it into my phone, it was real, I hope.

While a chunk of my years on this earth may be deleted by this disease, I will soak up these fleeting moments, these glimmers of life. I will soften my grip. I will hold more loosely. I will wait AND see.

And, in the meantime, I'll enjoy the steroids.