Matches and dispatches

It feels like a lot of mileage has been covered - literally and metaphorically - since my last post almost three weeks ago.

Since then, I've been to London's Royal Marsden Hospital twice to explore potential clinical trials. I was referred there by my oncologist after my last 'line' of chemotherapy was halted in May because of the damage it was doing to the nerve endings in my hands and feet. Clinical trials are usually reserved for those who have exhausted all conventional lines of treatment, so myself and Lisa entered these explorations (I've also been talking to The Christie hospital in Manchester about trials) with mixed feelings.

I never realised how far away South London is - at least by public transport. The 90-minute train journey from Lichfield to London Euston was matched by the second leg: a Tube to London Victoria, followed by an over-ground train to Sutton, and a 20-minute walk to the Royal Marsden, which is, strictly speaking, in Surrey. Trying to do this in time to make a 10.15am hospital appointment was no mean feat.

The initial visit, on a Friday, we just about made in time. On arriving at the Marsden it was like we'd entered a brave new word. The swanky entrance to the hospital's recently-built Oak Cancer Centre (pictured below) felt more like a hotel lobby than a hospital waiting room. Our visit was a preliminary appointment to talk through what clinical trials might look like, and for blood tests. I also had my first ever ECG test to see how my heart was beating. This was pleasant enough until the nurse removed the electrodes' sticky pads - along with most of my chest and arm hair - at the end. It was a long day with a lot of waiting around.

We spoke to both a research fellow and a consultant who promised to be in touch after discussing me at their next weekly case meeting. Sure enough, the following Tuesday tea-time, I had a call explaining that there were no suitable trials at present. However, two days later, another doctor called me to say there now was a new potential trial match. For me to be enrolled, I needed to go back to London to physically sign my consent by the following Wednesday.

I'd already decided that I was going to say 'yes' to anything that was offered and started planning my return journey to London. This time, I was making the trip without Lisa, so opted to travel down a day early and stay overnight with Lisa's sister and brother-in-law, Joanne and Lloyd, at their house in Barking, East London. It was great to catch up with them on their home turf.

The trial was for a new immunotherapy drug that hasn't been tested on humans. I would be taking part in tests to work out the appropriate dosage of the drug and to discover its impact, if any, on cancer tumours. It would mean traveling to London every week for the foreseeable future, to take the drug but also to monitor any adverse side affects due to the risk of the treatment potentially turning the immune system against organs like the pancreas and kidneys.

The main condition, other than general fitness, to go on the trial was that my cancer was progressive (getting worse) and that previous treatment was no longer effective. And there was the catch. Before I arrived to sign my consent for the trial, the Marsden's experts had studied my previous scans which, overall, showed my cancer was stable and not progressing. As I hadn't been scanned since May, they quickly arranged fresh CT and MRI scans for me, to check if this was still the case.

So, after arriving at the hospital at 9.30am, fighting sleep on the padded waiting room seats following an hour so on the Tube and train from Barking, I signed my consent. I then had my first ever full-body MRI scan (where my nerves were slightly eased by BBC 6Music on the headphones), swiftly followed by a CT scan. That fun-packed morning was followed by sandwiches and blood tests for HIV and hepatitis before I began my walk back to Sutton train station at 3:15pm.

At 5.20pm, as I perched between passengers on the packed London-Lichfield train, the Marsden called with that day's scan results. These showed that my cancer remained stable and hadn't progressed at all since my previous scan two months before. Which meant I would not be able to join the clinical trial. The door remained open for me to return for trials in the future, I was told. To be fair, they seemed genuinely happy for me that my static cancer meant I couldn't take part this time.

I sat on the train knowing that, deep down, I was thankful for the news. But, at that point, I felt flat, exhausted and, to be honest, a bit disappointed. I guess it's human nature that the new and shiny always tugs at our desires more than than the normal and mundane. I've always loved traveling to and around London and the Marsden felt like the opportunity for a fresh adventure, even if I would be going there as a guinea pig for a new drug which would, likely, have taken its toll on my physical and mental health due to the side effects. I'd got a (almost definitely unrealistic) picture in my head of weekly trips to London where I could spend time browsing through the city's record shops, meeting old friends and taking runs along the Thames - all around hospital visits. It's amazing where the mind travels when you feed it a bit of hope!

I felt ungrateful for being disappointed. But learning to name and mourn, rather than being embarrassed of or trying to bury, these small disappointments along the cancer journey is key to keeping going, and keeping growing. As Gruff Rhys (leader of Welsh indie icons Super Furry Animals) sings on his latest solo LP which is spinning as I type: "Sadness sets me free."

Of course, over the last few days this sadness has been supplanted by a deep, quietly joyful, sense of relief and appreciation that my cancer has not grown at all recently - despite the fact I haven't had any chemotherapy since the end of May. I don't need to convince myself that this really is wonderful news. Furthermore, to reflect that my cancer has progressed very little, if at all, since my diagnosis 15 months ago is brilliant (why do I still feel like I'm tempting fate as I write this?!).

During my at-times grueling 12 months of chemo treatment before these clinical trial talks, I've often yearned for a prolonged break to allow me to feel 'normal' again, and enjoy normal things. A few weeks ago, when I stopped worrying so much about the potential consequences of not being on treatment, it dawned on me that this was that break. It's weird to reflect that the break wasn't planned but was due to the fact the chemo's side affects on my hands and feet were getting serious. Good coming out of the seeming bad.

So, it was great to be able to enjoy my once-a-year all-day drinking with Dan and his brilliant mates and their dads as we went to the England v West Indies Test match at Edgbaston on Saturday (Dan and me in the infamous Hollies Stand pictured above). And, as I slowly build up my running distances and speed, as I stay up (slightly) later with my near-nocturnal wife and kids, as my previously tender and swollen 'chemo' big toe no longer hurts when I pull my socks on.... I am thankful.

I'm more thankful because I know that, while this feels like a return to normal, it won't necessarily be the norm in a few weeks time. Still waiting to hear back from the Christie hospital about their trials, I anticipate a similar outcome as with the Marsden. Which will probably mean I'm back on chemo treatment at Burton hospital before the summer is out. Which is okay. It's a quiet relief to know that not being ready for trials at the moment also means that I'm not in the last-chance saloon in terms of treatment options.

In the midst of all this, I've returned to the sometimes thorny issue of my trust in God and God's goodness. This gently surfaced as I listened to a daily meditation yesterday morning on the passage in John's Gospel where an upset Martha confronts Jesus about her brother Lazarus' sudden death, saying: 'Lord, if you had been here, my brother would not have died.' (John 11: 20).

I think I'm understanding that expressing a sense of disappointment with God, as Martha does here, is not a denial of trust. Instead, it's a way of returning to a deeper trust, a deeper openness, with fewer guarantees or answers. A trust (or 'faith') that is tattered and frayed but is somehow more robust because of its survival. Despite the risks, trust is a sign of strength not weakness. Maybe God has always been in the trust-recovery business, and I'm a work in progress. A work in progress who is currently enjoying the reality of my illness not progressing, slowly re-learning to trust, whatever comes next.