Thursday, 1 December 2016

Yo yo days

I have started this blog post so many times over the past few days that I’ve lost count. 

Each time I write my emotions have changed.

The rollercoaster is clearly greatly overused as a metaphor, so the closest I’ve come to an alternative is that of the humble yo-yo. 

Up, down, up, down, spin, stop, up, down, spin some more. Enough said. Basically I’m a bag of emotions right now. Hit and miss on an almost minute by minute basis whether I’ll smile at you, or burst into tears.

If I had written on Tuesday straight after my appointment with the oncologist you would have seen me brimming with positivity for ‘the plan.’ In a nut shell, I now have a date to start chemotherapy. Tuesday 6th December. Boom. Result. Hurrah (muted).

Today I was also supposed to have a PICC line put in (basically a semi-permanent line in my arm to administer chemo), only the ‘minor’ procedure was eventually abandoned as a failure after 3 hours. Cue tears. Plan A out the window, so it’s on to plan B already. Cue more tears. Rapidly followed by rational stoicism. Followed by more tears.

After weeks of creeping along at snail pace I suddenly feel things are going very fast.

I daren’t say ‘too fast’ as I’ve been waiting for this, pushing for ‘the plan’. I feel like (I imagine) a jockey might feel anticipating the start of a horse race with adrenalin, fear and trepidation all intermingled. You’ve done all you can do in terms of physical preparation, the waiting element is largely a mental game, sat atop your mount in one of those metal, caged starting gates. I’ve been desperately willing them to open the gate so I can get stuck into the long and arduous course ahead. But now the starting gate is open, I feel reluctant to spur my metaphorical horse into action to join the race.

Of course, cancer treatment is not really a race or competition. Maybe, if it is a race, it’s more like Aesop’s fable, where the tortoise’s slow, steady and measured approach trumps that of the hasty, cocksure hare. But at present it feels a little more like the Grand National to me, which is the only horse race I ever bet on, watch or know anything about. To my simple mind it involves high stakes, high emotions, big fences, lots of obstacles to jump/ fall over, lots of distractions, and it’s a long course. The pundits are always querying whether horses can ‘go the distance,’ which is certainly something that resonates with chemotherapy and the body’s ability to tolerate prolonged exposure to a toxic cocktail of chemicals.

Forgetting the horse race for now, a plan is, in my books, always a good thing. However, as most people know, any plan or strategy, be it corporate or personal, is only as good as its execution. Implementation of any plan is often the hard part; mine has many variables, interdependencies, unknowns and risk factors.

Looking ahead my ‘chemo calendar’ is almost inevitably going to be waylaid by side effects, infections of the season, not to mention minor delays associated with NHS bureaucracy. As the cherry on the cake of today’s largely miserable day, in which Plan A went out the window, I came home from hospital today to find my youngest child vomiting. So far 4 episodes in 8 hours and counting. Not my ideal choice of distraction, but distraction none the less, and thank goodness I haven’t started chemo yet.

On the subject of deviation to plans I have been warned by chemo veterans that whilst the attitude of nursing staff may be exemplary, the system often lets the side down: drugs not ordered, forms not counter-signed, blood results running late, computer literally says no, etc. I will be channelling my inner zen buddha at much as I can, trying to enjoy the silver lining of an uninterrupted opportunity to read proper novels, solve crosswords, snooze, etc. Basically I am clearing my schedule for ‘hospital days’ rather than ‘hospital trips.’

Also, as part of my risk mitigation strategy, I have been looking at what, beyond my mental state, I can control and influence to oil the wheels of the track ahead. There are a few strands to my thinking including; diet, exercise, mental wellbeing and environment.

The nutrition considerations could fill about three blogs alone. I thought I was pretty clued up and educated about a balanced diet, full of superfoods and antioxidants and stuff. My fantastic husband has, for months, been making me an ‘interesting’ (euphemistically described) kale, blueberry and citrus fruit breakfast smoothie most mornings. On the whole we don’t eat loads of carbs…but I was definitely missing some of the story, especially around sugar, but I’ll save that for another day.

For today it’s back to the mental game. Yo-yo time.

One moment I am UP, thrilled to be getting on with everything, off to hospital to get my PICC line. Next, DOWN I’m slammed back in my box in tears. A heap of vulnerability after the failed procedure. UP again after a lovely lunchtime reiki session destresses me and reduces my negativity. 

One hour later, contentedly walking the dog (also a common yo-yo trick BTW), finally feeling physically back to strength and ‘normal’ after my emergency surgery, and DOWN the fear and anxiety kicks in about chemo. My brain is shouting at me ‘You have just got back to health…what are you thinking?’ Back to health, and now I’m about to embark on a six month intensive plan to poison myself. (Hopefully temporarily, but there are always risks of permanent damage).

Rationally the medical evidence for undertaking this poisoning to prevent recurrence is compelling. Psychologically it’s a difficult step. I feel, and look physically well. So now I’m about to change that. It’s a bit like willing yourself to step off the bridge / crane for a bungee jump. Everything in your body and logical mind says… ‘Don’t do this…you might die!’ Yet we undertake such challenges for pleasure and for the adrenalin, me included…so perhaps I need to change my perspective?

On my dog walk mulling this over and feeling rather angsty I was surprised to see a large orange animal on the river bank ahead. He (I assume it was a he, but who knows?), was basking in that glorious winter sun; a rich, rusty creature with a fluffed up tail, full of vitality and life. He was surprised to see me, (and my dog) and after momentary indecision whilst we eyed each other up, he swiftly turned to bound away across the fields.

Then the irony struck me. He was the Fox I wanted to be. He could be part of my mental armoury as I take on FULFOX, my chemo combination. He was the fox full of life, a picture of health. That is the fox I want to be. A full-fox. I just need the chemo to help me get there. (This may feel tenuous to you…but it’s working for me, so go with it please.)

If you don't like the fox, then how about this? A relative who has also been through and recovered from bowel cancer told me to think of each chemo treatment like a large infusion of prosecco. To welcome it in. To crave more. To view the side effects as tangible proof that the drugs are working. There is collateral damage to healthy cells, but if it’s getting the healthy cells, it’s also getting the malignant, defective cells too. Be grateful for that.

This helps a little. Going to the hospital fortnightly for a lengthy infusion of champagne (I’m insisting on upgrading from prosecco) is an image I can work with. Please just remind me of this as I stare longingly at the real champagne that I’m unlikely to be drinking over the festive period.

So that’s where I am up, down, round and round. Maybe one day I’ll turn it into a choreographed dance? The cancer dance. (Worthy of YouTube viral sharing obviously). Until then, please bear with me, and whatever version of me you happen to meet or interact with in the days to come.

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