Enjoy the silence

After September's burst of three posts in as many weeks, I've hesitated to put fingers to keyboard for a bit.

I think it's partly due to a fear that I'll begin boring people and, after over five months of treatment, there are only so many new experiences to share.

But it's probably moreso the fact that the last few weeks have had their difficulties. I've sensed the need to give myself time to process stuff in-house before I try and make sense of it in front of you lot. As I sank into a weekend bath, I was drawn to a podcast by Kent Dobson on how we navigate tensions between our external (or 'public') and private lives. Dobson wisely asks the question: "What do I need to hold silently, long enough so it can do its work?"

This has been a recurring theme since my diagnosis in April. What information do we hold tight and keep within our family? And who, in our extended family and close friendship circles, needs to be told about developments with my treatment or condition before it appears on this blog? How much is actually TMI when it comes to my body or mental state and, for my own sake, needs to be kept to myself?

There are no right or wrong answers to these questions and my tendency, against my natural instincts at times, has been to be as candid as possible as a) it could help other people facing a similar situation, and b) it's actually healthy for me to be real, even vulnerable, and means I don't have to repeat everything verbally when I see people!

So, the reason for the pause. In my last blog post I typed: "I feel I've got into a decent rhythm with chemo, but I still know the nature of the beast means things could change at any point."

Don't get me wrong. The wheels haven't fallen off (even the spare on Rosie's car is still hanging in there). But my ninth fortnightly chemo cycle didn't end up as straightforward as the couple before it. The main issue was that, after my treatment, I began to develop some testicular pain which lingered for three or four days. This may be linked to the cancer which has spread to my left seminal vesicle. While not excruciating, it was bad enough to wake me at night and knock my already erratic sleeping patterns sideways. By the time it eased (thanks Naproxen), it then felt like my chemo-induced acne came back with a vengeance (maybe not helped by my tiredness).

The main thing that unsettled me was that I've not experienced this type of pain in this area of my body for any extended period since before my diagnosis. There was something about being transported back to my pre-cancer (or, more accurately, pre-awareness-I-had-cancer) days, during which I was wrestling with a variety of symptoms but couldn't pin down the cause, that disturbed me afresh. What was my undiagnosed cancer up to then? What is my diagnosed cancer up to now?

Anyway, I discussed this with the oncology nurse at my fortnightly Wednesday appointment two weeks ago. She consulted the registrar who referred me for an extra CT scan (ahead of the 'staging' scan I'm due in a few weeks to discover where things are up to generally after 12 cycles) to check it out. This scan took place at Burton hospital this afternoon and I should have my results soon. I'm glad to say the pain hasn't returned in this, my tenth (tenth!!), chemo cycle. I was just thankful to be taken seriously by the oncology team after the struggles with trying to get to the root of similar symptoms pre-diagnosis.

It's strange how I was only able to understand and process the emotions above after the pain ended. It took a few days for these emotions to pass through me so that I could realise why I was so unsettled.

This type of delayed emotional reaction happened again last Friday after I bumped into an older man who lives nearby as I left the house for a quick morning walk. I was aware he had recently been ill but hadn't spoken to him for several months. I asked: 'What's been happening with you?" and he proceeded to tell me that, since we last spoke, he'd been diagnosed with rectal cancer (like me), had surgery to remove the tumour and was now on the (not altogether easy) road to recovery. After telling him about my recent journey, we parted and I wandered towards the local fields. I felt really pleased that his early stage cancer had been located and dealt with so decisively.

As the morning went on, I became aware of a heaviness in my heart that I couldn't initially fathom. Eventually, I realised it was the grief trying to get out. I was suddently aware of the fork in the road between our two stories. One road features early diagnosis, intervention and the hope of a continued 'normal' life. The other road winds on for a bit and then....stops. I found myself longing for those early days where it seemed my cancer could be removed and life could resume as normal, maybe accompanied by a stoma (colostomy bag). The thought of surgery petrified me then, but I'd swap this for that now in a heartbeat.

This heaviness continued as I went downstairs post-nap a few hours later to stir the butternut squash stew I'd started in the slow cooker. Lisa, working from home in the kitchen, asked me if I was ok. I began to relay my feelings to her before faltering. We held each other and it seemed the grief was beginning to leave my body. After the fortnight I'd had, as the day went on I realised I'd needed to work this grief and emotional pain out. It felt like a gentle and welcome release - a lightness and peace that increased as Friday went on, and into the weekend.

Returning to the slow cooker theme, Dobson explains that: "We need to be careful to not make a story too quickly." It takes time to realise that the tomb where grief lives, he says, can also be the womb where new life and a deeper sense of hope start.

Despite the lingering grief, there is also a sense of new, previously unexplored, life that is gradually rising up. As usual, this is experienced mostly in the mundane details of the everyday. Like the fact that, following my pelvic pain, I was able to run five miles - all the way to Chasewater (pictured below), around it, and back - a few days later. I had to stop for a breather on a bench after three miles, which meant I slowly overtook the same bunch of walking pensioners (and a friendly poodle) not once but twice along the lake's south shore. But this was the furthest I'd run during chemo and, for a while at least, I felt lifted and physically 'normal' again.

I also managed to review the new Sufjan Stevens' album Javelin for For Folk's Sake website. Stevens is an acquired taste, but Javelin is a triumphant record which manages to deal with loss and struggle in beautiful and inventive ways - so it was good to spend a few days marinading in it. I'm also loving Haruki Murakami's What I Talk About When I Talk About Running, a gift from my sister. Through this very readable book, the Japanese novelist has re-energised my desire to run and write with his punchy prose and astute reflections on the relationship between the two disciplines.

And then there are our mad cats Winnie and Wilbur. They may dislike each other, but they seem to have a second sense for when we need their individual attention. Winnie (pictured in a typical pose below) is usually pretty withholding but for no reason clambered onto my lap on at least one occasion when I was feeling low. The heavy warmth of her slight body made me stop what I was thinking about and just appreciate the stillness. Obviously, I'm only including this story so I can share a cat photo ;)

I read a quote last week from US author Marcie Alvis Walker who, talking about the black church of her youth, said: "Before we could offer songs of praise and appreciation, or feast, or fellowship, we had to remind one another of all the reasons we were so very, very grateful in the first place. And we had to allow a time to weep for all that had been taken and was still being taken."

A time to weep. A time to process. These are sometimes necessary, rather than negative. When we acknowledge, hold and sit with the reality and brokenness in front of us - in our own lives and the world - we can then begin to put things back together and build anew.

Dobson desribes this space as one where"we're pregnant with possibility but uncertain of any guarantee....I’ve left but I haven’t arrived. Where I’m arriving is still unknown."

Exactly six months since my diagnosis, things aren't any easier to understand but life does feel a bit easier to accept and 'live in', one day at a time. Navigating this is tough and I've still got my stabilisers on in terms of learning to cycle through it, knowing a gust of wind (like some unexpected pain) can easily knock me to the pavement. But life is do-able, we're more aware of what it means to feel 'alive' and more open to new experiences, the love of others and future possibilities, however they turn up on our doorstep, however long things take to quietly process.