Two wings and a phantom fringe

I'm four chemo tablets into today and feeling pretty good, considering.

The sun is spilling between the part-closed curtains into the spare room, my 'Fall' playlist is swirling out of a blue-tooth speaker, and the only side affects I currently feel are a warm wooziness in my head and lead-lined heaviness in my body.

It's been an interesting six weeks since I hopped back aboard the chemo train following an 18-month break. Overall, this treatment - which includes ten days of Lonsurf chemo pills at home plus two Bevacusimab infusions in hospital per cycle - has felt less severe than my previous steroid-enhanced chemo encounters.

This, for the first fortnight at least, reinforced my initial mental approach that a treatment cycle would work around my life, rather than my life working around it. But slowly, as various side affects have gathered momentum, I've had to accept that chemo is the necessary day-to-day dominating factor again. Emotionally, I've been warding off this return to Treatment Land - wanting to eke out the semblance of normality that my time off chemo afforded. But clenching against treatment, rather than giving into it and working with it, only drains already-depleted energy resources.

The side effects deserve their own I Spy book, often disappearing as quickly as they emerge. I've had a few of the standard ones: cold sores, croaky voice, recurrent nausea, nose bleeds, tingling in my hands and feet plus a week of alternating constipation and diarrhoea (what a combo!). The most annoying one, linked to the nausea, is losing my appetite for certain food or drink. I usually get through a box of mince pies a week at this time of year, but the last box took over a month to finish, and I stopped wanting Cadbury's chocolate just after Lisa returned home with a bag full of family-size slabs.

There have been a couple of classic side effects that I forgot about too. These include the return of my phantom fringe, where I have a sensation of what feels like hair on my forehead (think Lloyd Christmas in Dumb & Dumber). At least chemo has a sense of humour.

I was due to start my second monthly cycle the week before last but, after three hours of waiting, was turned away from hospital because my white blood cell levels were too low for chemo to be safe. I'd been neutropenic (the technical term for low white cells) before but didn't expect it so soon into this new chemo regime. It could have been a hangover from my old treatment, my oncologist explained.

I was prescribed with three days worth of white blood cell boosting injections to administer at home. These were taken with anti-histamines to prevent the bone pain that can result from the injections - drugs to ward off side affects from the drugs I'm taking for my side affects!

But all of this worked. My neutrophil levels soared from 0.5 to 9.4 (normal range is between 2 and 7.5) which meant I was able to start my second cycle of treatment this Monday, a week later than planned.

Despite all of this to-ing and fro-ing, resting and readjusting, regular life has not totally disappeared. I had been hoping to run 600 miles this year (after managing 500 in 2024) but, with treatment resuming I'll probably fall just short. However, the morning of my first chemo infusion coincided with the opening of the new Greenway between Burntwood and Lichfield. This old rail track has been transformed by volunteers, and the local council, into a four-mile walk (and run) way.

Almost two years ago, I wrote about how the metal fence that then blocked this track to Lichfield near our home felt like a metaphor for my limited horizons. Plans announced in December 2023 to open the path offered hope, but I wasn't sure if I'd live long enough to experience the new route. To be able to run through the now-open fence (pictured below) and along the Greenway to Lichfield in the morning drizzle, a few hours before I set off to hospital to re-start treatment, felt like a divine nudge of reassurance.

Even though my runs have slowed in both frequency and speed since treatment started, it was encouraging to feature in a recent Refugee Action ad in the Big Issue. The charity used my 2024 fund-raising run to encourage people to Race For Refugees this year, including a picture of me bouncing across a different railway track (I survived!) at Chasewater during a marathon in my pre-cancer days.

Other highlights of the past month or so have included traveling to storm-soaked Manchester for a BC Camplight (plus Badly Drawn Boy) gig with Macy, her boyfriend Charlie and his parents Tracie and Steve, who kindly drove me there and back. We also had a surprise visit from Lisa's sister and husband, Joanne and Lloyd, who were up from London, and witnessed Rosie successfully negotiate her first Ofsted inspection. It was fantastic as well to spend an evening in Derby with Lisa for our friend Helen's surprise 40th (pictured with Helen and her husband John below). At the party we connected with one of Helen's friends who is over five years into treatment for incurable cancer. Speaking to her, and her partner, was nourishment for the soul.

I've also managed to continue my weekly freelance work and managed a few Oxfam vinyl-pricing shifts. Though, I'm not sure whether I'll soon regret buying the Christmas record from Oxfam below, at the insistence of Lisa and the girls.

One bonus of being neutropenic (I've only just stopped humming 'this Pete is/this Pete is/this Pete is neutropenic' to the tune of 1989 dance hit 'This Beat Is Technotronic'), and therefore having an extra recovery week, was being able to attend a retreat day in Lichfield for Candied Appeal, a new Community Interest Company set up by our friend Lindsey. You can find out more about Candied Appeal's aim to celebrate life's goodness while being good to ourselves, our communities and our planet on its website.

Originally, Lindsey had suggested we lead the retreat, called Reaching For Hope, together. I had to pull out when chemo started but was, in the end, able to attend in the afternoon after a morning trip to the hospital for a blood test.

There, I briefly shared the 12th-century wisdom of German nun Hildegard of Bingen who said that we are meant to fly with two wings of awareness. One wing is life's kindness, beauty and blessedness, and the other is its pain, struggle and suffering. If we try to live with only one of these, she says, we are like an eagle attempting to fly with one wing.

In hindsight, 2025 had felt like we were beginning to find some equilibrium between these wings, making space for both grief and hope. The necessity to return to treatment - possibly indefinitely - has tipped the balance back towards grief as I wait for a new sense of hope to emerge. It's a period where I'm having to re-learn my own advice from a blog post called You Can't Hurry Hope, written near the start of our cancer journey.

As we wait for this new equilibrium, I feel less of a soaring eagle and more like one of the cabbage white butterflies I witnessed fluttering inefficiently through a local field this summer. This butterfly bumbling is captured wonderfully in a poem by Robert Graves:

The butterfly, the cabbage white, (His honest idiocy of flight)

Will never now, it is too late,

Master the art of flying straight,

Yet has —who knows so well as I? —

A just sense of how not to fly:

He lurches here and here by guess

And God and hope and hopelessness.

Even the aerobatic swift

Has not his flying-crooked gift.

Robert Graves, "Flying Crooked" (1931)

I love Graves' idea that our truest gifts and opportunities come not through perfection or polished effort but as we "fly crooked" - not quite sure where we're heading, or how we're getting there, yet still pushing on.

Anyone who has seen two (or more) butterflies 'travel' through the air together knows what an even more chaotic and beautiful effort this is. However lopsided we feel and whatever is going on in the world around us, it's a reminder to stay within touching distance of each other, sharing both the grief and hope of the journey, worrying a bit less about the destination.