Rolling the dice - fear and freedom

It was 2,500 years ago when Greek philospher Heraclitus famously said that the only constant in life is change - and nothing has changed since he uttered this truth.

My last post had us returning from holiday, my first-ever wholly positive scan results and me gearing up for more-of-the-same chemotherapy for another three-month stretch.

Well, a lot has changed in the past three weeks or so. It sort of started with me cracking a tooth when we were away in Crete. This led to a speedy NHS referral to a dental clinic in Burton to get my tooth extracted. I mentioned this at my oncology appointment which led to a pausing of my chemo (mostly because my treatment - in particular the bone-strengethening injections - can interfere with the healing process following any invasive dental work.)

I also told the oncology nurse that my PICC line was slowly escaping from my arm and might need replacing. So, before my tooth extraction, I popped onto the chemo ward at Burton hospital to get my line checked (what a fun day!). Sure enough, the thin rubber line (my third in 12 months) had come out further than the recommended limit so they whipped it out painlessly and booked me in for a replacement to be fitted. But while I was there, the oncology nurse who I'd spoken to on the phone came over for a chat. Since my conversation with her the day before, she'd spoken to the consultant in charge of my care and they'd discussed my ongoing neuropathy (tingling and numbness in my hands and feet). She warned me that this chemo side effect may be on the verge of becoming irreversible and could leave me "permanently disabled." As a result, we should use the PICC-line pause to review my treatment and look at alternative options, she added.

I agreed to this and headed off to the dentist, the tooth extraction distraction enough to stop me properly processing the chemo conversation. Suffice to say, it went fine after I got over the shock of seeing a pair of pliers zero-ing in on my mouth (followed by an even bigger pair of pliers when my molar proved initially stubborn).

So, last Wednesday Lisa and myself returned to the hospital for a meeting with my consultant to discuss options. It's worth mentioning at this point that the neuropathy has slowly got worse in recent months and doesn't seem to have eased with breaks from, or reductions in, my chemo. It's not unusual for things to just fall out of my hands - the worst probably being a curry which face-planted (plated?) on the hall carpet. The numbness in my feet means I often suddenly hear the car revving when my trainer accidentally presses the brake and acclerator pedals at the same time. It can also leave me feeling shaky and needing to steady myself so I don't fall in the shower or down the stairs on my 'chemo slump' weekends. It's hard to type this blog with tingly fingers, and trying to pop paracetamol out of a foil packet or undo buttons have turned into new endurance tests.

The consultant was aware of all of these side effects before we spoke. She'd also warned the oncology nurse that I was likely to "play them down" when we talked about it ;) Soon after we arrived, she pushed a new form in front of me about a different chemo drug called Regorafenib (catchy!) which is taken as a tablet. She explained that there was no guarantee that this treatment will work as effectively in containing my cancer - whereas the previous Folfox chemo infusion, while potentially disabling me, was doing its job in keeping the cancer at bay.

Choices, choices. After the consultant ran through Regorafenib's potential side effects, I signed my consent on the dotted line. Unlike my previous fortnightly treatments via a drip, the tablets are taken for 21 days followed by seven days off. I'm set to pick up my first batch at hospital this Wednesday if my blood tests are clear. All being well, I'll have three cycles of tablets followed by a progress scan in three months time. I'll also carry on with my monthly bone-strengthening injections.

An additional sweetener of medical trials was offered. This surprised me slightly as my previous understanding was that my type of cancer was too advanced for trials. So, I also agreed to be put on a database which could mean traveling to hospital in London or Manchester for any suitable new treatment.

As we left hospital, I felt positive but also concerned that I'd made the right decisions. It seems like we're rolling the dice without any guarantee of outcomes. Although, I guess that's been the order of the day since my diagnosis almost 14 months ago. There's an inevitable sadness about leaving a treatment behind that has been working cancer-wise, despite the side effects, plus a routine I was used to.

Ultimately, as Lisa reminded me on the way home, it is about the fine balance between quality versus quantity of life. These choices are rarely clear-cut or straightforward. And I do trust the medical experts, their experience and their intuition. It's somehow reassuring that they're not just trying to just keep me alive whatever the physical cost, but also want to try to ensure I can carry on driving and live as normal a life as possible as treatment progresses.

Shortly before all of this, I spoke to my counsellor (I'll maybe touch more on therapy in a future post) about where things were up to. She helped me to recognise the two parts, or sides, of me that are dealing with recent events. One part has enjoyed the freedom of not having prolonged treatment for over a month or so, with the sense of normality, energy and life that brings. The other part is anxious to get on with treatment, fearful that delay could give my cancer the upper hand.

Both of these parts have my back and are working for my best interests, making themselves felt at different, and sometimes the same, times. Fear and freedom.

This was reinforced by a poem I received on an email list I'm subscribed to last week (the timing of these coincidental nudges makes me laugh and renews my faith that God is somehow still working in the midst of all the complications and rearrangements). Part of the poem, called Walking With Rapture by Jasmin Pittman, is below. The wildlife imagery is poignant as, due to our proximity to Cannock Chase forest, deer often pop up on roads, roundabouts or in open spaces near our home (see photo above snapped on a run a few years back).

One night, I walked alone,

cocooned in the velvet darkness 

of woods ringing 

with survival songs. 

I felt the soft thrum of hoofbeats 

before I saw them, felt 

the tingle of anticipation before,

before 

I stopped 

dead in my tracks,

my breath caught

in the net of my lungs

as brushes of tawny fur 

swept my bare arms, a herd

of deer parting around me as 

though I was Moses’ staff 

held high.

I watched one of the does 

leap away, a tail flash of white

like the flag of surrender.

She ran free or afraid,  

we can always be both  

and still manage to be home

with the herd.

Meanwhile, family life goes on at a fair lick: Macy turned 19 this weekend; Dan needed three stitches after a cricket ball to the chin last weekend and is now in Germany watching England at the Euro's; Reuben won Supporters' Player Of The Year at his team's annual football awards; and Rosie has started end-of-year reports for her primary school class....

On Father's Day, despite all the twists and turns, there's a lot of life to be thankful for.