Head in the clouds

Yesterday was chemo cycle 21. I was in and out of hospital in what felt like a flash; just over three hours, which may be a new record.

I sat next to the young nurse I mentioned before, who is also managing being a mum to a young baby while on maternity leave. She reported that her tumour had reduced significantly and the chemo is hopefully gearing her up for surgery in a few months. On the way out of hospital it was lovely to bump into a neighbour we have known for years whose husband had surgery for bowel cancer last year, and is on the road to recovery. I've also been texting back-and-forth with my former chemo partner P, who had major surgery to remove a secondary tumour in his liver last Thursday and is now slowly regaining strength in hospital.

These three encounters were all encouraging. I don't say this through gritted teeth, despite sometimes wishing that I could have surgery to move things on. We're on different paths, or in different races. They are running the steeplechase with an end in sight, but many hurdles and water jumps to negotiate. I'm sat on the trackside on a treadmill or running on the spot, going through the motions to keep in shape. In most ways, at least at the start, our activities are similar, but then they morph into different events with different trajectories. At least I'm not having to negotiate the sudden physical and emotional trauma of serious surgery and the months of readjustment that follows with stomas etc. And there's no reason why I can't cheer the others on from the sidelines. This actually does me good and gives me a sense of vicarious hope, similiar (though not really!) to watching Reuben play football when my creaking, knackered knees don't let me take to the pitch anymore.

I'm in a bit of a chemo fog today after two hours' sleep last night due to the steroids. I'm not sure I've got anything profound to share, partly because of the fog and because things are bit monotonous at the moment, which I'm not complaining about.

So, as with my last post, I'll recall a few memorable (to me at least) things that have happened since that entry.

The last three weeks saw our house turned into an Amazon warehouse, as Lisa described it, as we've replaced three of the kids' beds and Lisa and Nick (Rosie's boyfriend) redecorated Rosie's room. That they managed to surprise Rosie by doing this in a single day while she was at work amazed, but didn't surprise, me. Lisa has past form in these DIY feats. The upturned house, with furniture displaced and packaging everywhere, did test me a bit (despite me making a few escapist trips to the tip to dispose of cardboard). This was hardest on my last chemo slump weekend, a fortnight ago. During these three or four days as my immune system bottoms out, my mind also seems to shrink and my capacity for humour and patience wanes, which means I crave predictability and some space. It felt like a sofa-based survival challenge. I knew Lisa was aware of this - although we didn't chat about it until the end of the weekend - and I take it as a small victory that I didn't lose it, instead repeatedly chanting in my head a new phrase I've learnt from a poem by Dorothy Hunt: "Peace is this moment without judgement."

I was feeling more with it last weekend. It was lovely to go out for a family meal (kids pictured above) at Ego in Cannock to celebrate Dan's new permanent performance analyst job with Wolves FC. It was also great on Sunday to mark Mother's Day with laughter and a few tears. I think my walk with cancer has made me appreciate my mum, Lisa and other female family and friends more than ever before. Without hugely over-generalising, I feel the support I've had from women has often met me at the deepest point - there's an intuitiveness to pain and an unspoken care that us men (often lost in our minds) don't display as easily or naturally. Maybe that's why all the chemo nurses who've treated me are women too.

Talking of which, I managed three short-ish runs last week. At the end of the first one on Wednesday (always the hardest as it's the first jog after chemo week, when my energy is still slowly returning), I was hunched over a street sign on a junction, getting my breath back. Before I knew it, a small pink car had pulled up alongside me and its driver wound down her window to check if I was ok. I reassured her I was fine and she drove on. I think we were both slightly embarassed but it was lovely to be asked.

My brother-in-law Brookln (or Dekker as he's known by night) played a sold-out show in London village at the start of March to launch his third LP Future Ghosts. It was during chemo week so I couldn't make it down, but Nick did and it was great to see a wooden sign Nick had painstakingly crafted with his brother hanging from the back of the stage. The massive moniker, shaped like the hat Brookln dons when performing, has now hitch-hiked to Europe for the next leg of Dekker's tour.

Other highlights since I last posted have mostly revolved around food, which my nerve-end tinglings and chemo often leave me struggling to taste. But I really enjoyed a juicy clementine as I walked in the sun around Chasewater the other day and some home-made chocolate cookies by our friend Leah at a church house group meeting. I'm also munching my way through some miso-enhanced white raspberry chocolate, made especially for chemo patients, from my friend Jay. It's the small, sweet things, that work, although the one random thing guaranteed to perk my palette up is old-school pub pork crunch which is filling up half of our crisps' shelf. Apologies to our veggie friends...

Oh, and I was presented with a medal for my work over the past six-plus years by the Bishop of Lichfield last week! Which was lovely.

(picture by Simon Jones, Diocese of Lichfield)

I mentioned earlier that things have become a bit more monotonous and settled, which overall is good. I do often feel like I'm walking in a cloud at times, not sure where it's leading. My relationship with God has an ongoing 'push-pull' quality. But I feel less pressure to fix this; just living in the tension of not understanding, rather than trying to work everything out, or solve the mystery of why I've got incurable cancer. Sometimes I feel lost, sometimes found. Sometimes I feel abandoned, other times lovingly embraced. Usually all in the same day!

As I mulled this over before beginning to type, I was reminded of a famous prayer by mystic monk Thomas Merton:

"My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore will I trust you always, though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.”

(from Thoughts In Solitude - hat tip Kent Dobson)