As I approach the end of my first fortnightly cycle of chemotherapy, it also feels like the end of chapter one of my cancer journey.
It was seven weeks ago today that we sat in the colonoscopy unit at Burton Hospital to be told I had a 4cm tumour in my rectal passage. Yesterday, we returned to the same hospital for an oncology catch up. My blood tests showed no negative reactions to the chemo which means I'm clear to start cycle two on Tuesday (a day late due to the Bank Holiday).
My last post, which I wrote while still on the chemo pump after three days of infusion, was, in hindsight, like sitting on the top of a rollercoaster ride before being whooshed down a ridiculous drop. As the steroids wore off, my energy also depleted and by Friday I was pretty much zombie-fied. This wasn't helped by my struggles to sleep which climaxed on Thursday when I was up all night in discomfort due to constipation, which even a 12.30am eerily quiet walk around the block wouldn't shift.
Chemo patients are given a 'red card' which allows them priority treatment at A&E (a bit like the Fastrack Pass to avoid the queues at Alton Towers, talking of rollercoasters) with a 24/7 number to call if there are any signs things are wrong, due to the risk of infection. Reluctantly, due to my increasing pain, at around 6.20am on Friday I called the red card number and spoke to a helpful on-call nurse at Derby Hospital. She threatened me with an enema, so I agreed to try one last double-dose of laxatives (I'd already had a few). I won't go into detail, but they eventually did the trick which, after five days of not going, was a relief to say the least. As my body 'recovered' over the weekend, I recalled the "This too shall pass" quote from Tom Hanks mentioned in an earlier blog post - although I'm pretty certain that's not what he was referring to.
This ordeal combined with the sluggishness post-chemo, left me pretty useless for anything at the weekend. I felt like I'd been unplugged. It got to the point where I didn't even have the energy to respond to text messages which, for a person with people-pleasing tendencies, was worrying. My energy has gradually returned this week although there are still some random side affects persisting. My left ear feels numb and tingly, there's a dry patch in my mouth, my body seems to shift from hot to cold on a regular basis, and there's stiffness in my neck and back.
My appetite has also gradually returned although water still tastes a bit off and I never know what I'm going to crave next (it was a Nobbly Bobbly ice cream at 5.45am today which, thankfully, I resisted). Fresh fruit seems even more appealing than normal and the simple joy of a new lime-flavoured shower gel this morning was nice (to wash in, not eat).
Perhaps the strangest thing has been bedtime. I'm now sleeping ok but very lightly, waking every hour or so. And my dreams are mostly turbo-charged bonkers. One of the funniest/scariest was of a medical meeting held in my work office in Lichfield, while sitting on a window ledge. I'm also full of what feels like good life ideas at 3am. Today, it was planning to set up business as an (un)motivational speaker who goes to companies and tells people everything is rubbish. At least it made me laugh into my pillow.
I'm guessing this, and everything else, is the chemo still kicking around my veins. So, it was good to get the go-ahead yesterday for the next round. I'll be a bit wiser to the likely side effects and, perhaps more importantly, Lisa and the kids will know what to expect too. Having said that, when Lisa told our youngest Reuben yesterday that we were off to hospital, he asked: "So has Dad started his treatment then?" Bless him.
Yesterday's meeting also confirmed more about my prognosis. When we asked what the outcomes looked like, we were told that my life expectancy is "years", rather than months. As suspected, the cancer is treatable but, due to the spinal lesions, not curable. It is likely that I will have six months' of chemo, with a break in the middle for scans and recovery, to try to contain and reduce the cancer. Surgery is now no longer the preferred option, because of the advanced nature of my Stage 4 condition.
To be honest, I'm still processing all of this and will probably be doing so for some time. The faint hope of a cancer-free life, barring a miracle, has faded and I need to accept this to be able to deal with it both emotionally and mentally. The new reality is that we will be living with my cancer for the rest of my days. At some point, my perspective will shift so that the "years" of life I have left feel like a decent length of time, a gift. But at the moment, I'm waiting for that realisation to kick in as I begin to adjust my expectations accordingly. And I'm leaning on the grace of family and friends who allow me, and us, space knowing that this readjustment period too shall pass.
I'm re-learning that it's ok to sit with these negative emotions - with this new sense of grief - rather than try to suppress or hurry them along. To, as they say, not push the river. A new normal will arise in due course and fresh possibilities will, no doubt, open up.
In the meantime, I've started a practice from an article in The Times on Tuesday about mindfulness. It's called the Ten-Finger Gratitude Exercise and asks you to look back on the past 24 hours and bring to mind ten things you are grateful for. I got to 20 on the first day and have managed to easily be left with no spare fingers the last two nights. Unlike a Nobbly Bobbly, I'm not going to sugarcoat this past fortnight - it's probably been the hardest of my life. But, like Elton John, I'm still standing, surrounded by everyday goodness, trusting that there is still life to be lived, still much light in this tunnel. Onto chapter two....
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