The ebb and flow of 'progression'

It's been quite a week, including getting my latest scan results and my next treatment plan, plus running my first 10k since chemo started.

Things kicked off on Monday with an 8:45am 'emergency' dentist appointment due to a bit of tooth/filling coming away. It was rescheduled from last Friday after the surgery flooded.

My last check-up was in April, just before I started chemotherapy, and I didn't know whether to laugh or cry on Monday when the friendly dentist asked: 'Have there been any changes to your medication since your last appointment?'. There was zero chance of me reeling off all of my drips, pills and creams which, including the chemo drugs, easily run into double figures at the moment - especially as it was not long after sunrise and my brain was only just functioning after a brisk walk to the surgery.

Because of my bone-strengthening injections (which I think affect the density of my teeth), the chemo sister told me, when I rang for advice, that I shouldn't have any drilling or other invasive work without consulting my oncologist. Thankfully, because there was no tooth decay or pain, the dentist advised me to prioritise my chemo and get the new filling/crown when I was ready. So, it was a quick patch-up with the promise of more to come after a dental x-ray in a few weeks.

The walk home with my new temporary filling was surprisingly pleasant, the hazy sun shining through the trees; playing-field grass and spider webs shimmering with dew (pictured below). Once I get used to the fact that summer is over, I always love this time of year.

The changing seasons are marked by the music coming from the bathroom as I type this - Slade's 'Merry Xmas Everybody'. Yes, Rosie's Christmas playlist is back on rotation as she has a shower. It is October after all, and Maria Carey and co have already been playing in her car for a week. You can set your watch to this seasonal ritual in our household, even if I'm not reaching for Chris Rea or Jona Lewie myself just yet.

The rest of Monday saw me spend time with friends and colleagues in Lichfield, including lunch and mince pies (it's never too soon!) in the pub (see Simon, Simon, Lindsey and me below), before picking up the new Teenage Fanclub album from Stylus Records. By the time I got home just after 3pm I was exhausted and needed a nap.

Tuesday was another early start with an 8.15am appointment at the ambulatory clinic in Burntwood. This is a fortnightly session where they flush (clean) my PICC line and change the dressings that secure it to my right arm. They also take blood samples which are sent to Queen's Hospital in Burton ahead of my Wednesday oncology appointment. There my blood 'levels' are studied and, if they're all ok, my next chemo session the following Monday is given the green light. My PICC line is playing up a bit at the mo, so the nurse had to take the blood from my other arm. It's weird how you get use to these workarounds.

Wednesday was the big day - a trip to Burton to find out the results of my latest CT scan which would indicate any changes in the cancer and determine my treatment plan for the next three months. My last scan in August showed that my cancer was stable and that the chemo was working. I was hoping for more of the same this week.

Our appointment was with a registrar who we hadn't met before as my oncology consultant was away. I was a bit nervous as we've got to know the consultant, and its easy to leave these sessions with a headful of new information which you don't really understand. However, the enthusiastic, young registrar, who specialises in colorectal cancer cases, was happy to spend an hour with us, going over everything and answering our questions.

There was quite a lot of good news: the primary tumour in my rectum remains stable, the bone injections are continuing to work on my spine and elsewhere, and the testicular pain I'd experienced recently was not cancer but was 'deferred' pain from elsewhere. But also some less good news: the nodule on my adrenal gland has increased in size from 22 to 28mm. We were told this represents a 'progression' and that my chemo regime will change to try and counter this - with the drug Folfox replacing one of my current treatments, Irinotecan.

The registrar then outlined, in some detail, the side effects of Folfox which include neuropathy - numbness and tingling in the fingers and toes due to nerve damage. It means touching cold things can cause what feels like electric shocks, and breathing in cold air can lead the throat to constrict. Nice. I guess I'll be using the oven gloves when opening the fridge then.

He showed concern as well about the rash on my face and chest caused by one of my other chemo drugs, Cetuximab. This frustrated me a bit as the rash has actually calmed dramatically after I was prescribed some steroid cream a week ago. My protestations that my spots are the best they've been for months didn't stop him doubling my antibiotics in a bid to beat the rash further into submission. If it works, I won't be complaining.

We also agreed that I'd have a fortnight's break from chemo, to allow for the switch in drugs and for my skin to recover further. I'll still have my bone injection on Monday and then start fortnightly chemo again on 13 November for another three months which should take us to the end of January. One of the sessions is due on Christmas Day but thankfully this will be rescheduled.

As has happened before, I left hospital with my head scrambled as I tried to process everything we'd discussed. Although the overall outcome was positive, I was troubled by the re-labelling of my cancer as 'progressive' due to the adrenal gland. Hopefully, the new chemo drugs will return things to 'stable' but we'll need to wait another three months to find out.

I pondered this more yesterday, still feeling a bit defeated by everything. A sunny walk across the local fields (pictured above) to post a letter began to cheer me up, as did a sense of reassurance I felt as I let out a random stream-of-thought prayer. I processed this further into the afternoon and realised my main issue was that it felt like Wednesday's news had knocked me off track. Despite the constant developments and tweaks in my condition and treatment, after six months I've got into a good rhythm with chemo and mostly know what to expect. But with the prospect of my treatment regime changing (including the potential side effects) and the unexpected adrenal nodule growth, I felt like things had been taken out of my hands again.

I remembered (from somewhere!), US Franciscan author Richard Rohr defining suffering as "whenever we are not in control". Anyone who has raised kids - or had to care for elderly relatives - will understand how suffering can come from the sense of not being in control of whatever you or your loved ones are going through. For me, recognising how suffering can manifest itself as a feeling of not being fully in control of my health and my treatment, and acknowledging the fear this causes, is half the battle won.

I know, on my best days, that all will be well and I am - as I advocated in previous posts - learning to hold things more loosely. It's just bloody hard to heed my own advice when the fear, the suffering, creeps in. Thankfully, I've a got a wife who grounds me and bears with me as I flail and process.

This morning, after the usual 7am catch-up with Paul and Jay (see last post), I pulled my orange running shoes on and jogged over the M6 toll bridge and along the muddy McLean Way. I wanted to make it to a pool three miles away near Pelsall, which according to Google is called Ryders Hayes Mere. I used to run to, and sometimes around, this small lake (pictured this morning below) fairly often but hadn't managed to reach it recently. So, it was lovely to get there, pausing in the quiet on its shore as a few birds bobbed on the water nearby. I even made it home in one piece which meant I completed my first 10k (6.2miles) run since chemo started.

It's things like this - and all of the friends and family I've encountered this week - that make any suffering, any loss of control, bearable. So, thanks for your continuing encouragement and support - it really does work. As Swiss physician Paul Tournier said:"The right help given at the right moment may determine the course of (someone's) life."

Talking of running, Georgia, Dan, Nick and a bunch of their friends are doing the Alton Towers 10k a week on Saturday to raise money for Bowel Cancer UK. I know many of you have already sponsored them, but it's not too late to do so here if you haven't ;)