Tuesday, 20 December 2016

An update from 'Chemo Cafe'

Today I have the pleasure of writing to you all LIVE from the chemo ‘cafe.’ Otherwise known as the Chemotherapy Day Centre.

Still no decent coffee, but my productive achievements of the day whilst getting my fix of champagne-oxaliplatin, include puzzleing with my mum… AND a huge upgrade to the Christmasiness of my nails thanks to my wonderful friend who popped in to Jam me up (a la Darcy Bussell on Strictly) Get your Jams on people!

As you may have rightly surmised by my silence on the blogosphere, I’ve been in relatively good spirits lately.

My writing tends to be fuelled by the more extreme and spiky ends of the emotional scale, by the need for catharsis and mental processing time. Any feelings in the middle ground or towards the positive end of the scale leave me rather less communicative and inspired to write.

It has been ever thus, my teenage journals read like chronicles of misery and angst. You’d think I’d been tortured by the near life-death experiences of encountering the attractive and lesser-spotted males of the species. Thankfully absent from the classroom they haunted the coach park, the car park or the infamous Black Gates that divided ‘Girls School’ from ‘Boys School.’ It is amazing how your view of life-and-death experiences changes in a mere 18 years, from ‘He definitely waved at me today, I think I might die of happiness’ to hearing ‘I’m sorry you have bowel cancer.’ Genuinely grim. (Incidentally I’m not sure I wrote the exact former sentence about waving, but doubtless something similar actually occurred!)

Overall this last week has been marked by a welcome lack of drama and high emotion. There has been an absence of drugs, side effects and planned hospital visits. For all of which I am profoundly grateful. No drama is good, I’ve had enough in recent months.

Perhaps I simply feel good in direct contrast to the prior week, during which I felt ‘bogging’ after my first chemo session? By ‘bogging’ I mean stuck-in-the-mud, laboured and effortful. Like trekking in Scotland, where a supposed short cut across what looked like bouncy and solid heather turns out to involve slow and exhausting wading, knee-deep in cold, peaty, sludgy mud-water desperately trying not to lose a boot. The lesson, people? In life there are no short cuts.

I have at times in the last few days verged on euphoria at temporarily feeling ‘well’. I have felt light and joyful, normal and ‘healthy.’ And I have been making the most of it. Lunches with wonderful friends, extraordinarily early and unfrenzied Christmas preparations (tree up, presents wrapped under the tree, turkey ordered, etc), AND I have even been to the gym. Yes, really.

I ran the slowest two kilometres that I’ve run in over 20 years, but as the only two kilometres that I have run since my operation, I was just thrilled to be running. No matter that it was on a treadmill and not outside, it was a test run for my body. To see how the stoma and my abdominals felt in motion, under impact. To see whether my Hickman line, the white tube hanging from my chest would irritate me. It did. But not enough to make me hit the ‘stop’ button on the machine. A moral and physical victory.

Maybe one day I’ll get used to the line. For now, I’m grateful that despite that fact that it dangles tantalisingly from my clavicle like a bathroom light pull-cord, my 18 month old son hasn’t properly clocked it. Given his recent reactions to fairy lights, baubles in fact anything that moves and doesn’t move. His ignorance is definitely my bliss. His standard techniques of highly physical exploration include yanking, pulling, chewing. All of which would be pretty unwelcome.

Not one usually prone to paranoia I find myself perpetually checking the strange, transparent sandwich dressing that covers the chest wound. Is the skin redder than yesterday? More itchy than a few hours ago? Has my ridiculous and wholly inadequate plastic bag – sellotape contraption adequately protected it from water during pathetic attempts to shower and keep it dry? (Disclosure: I even went to the hairdresser for a full wash-cut-blowdry this week to avoid washing my own hair as I haven’t figured out how to do this properly yet and dry shampoo only covers so many days of sin.)

But seriously, both chemotherapy and the Hickman line have made me paranoid. And paranoia interferes with my sleep. I wake up in a cold sweat wondering if I’m getting a fever, or whether it’s actually just sleeping adjacent to my furnace-like husband? I have to reach for the ear thermometer to check I’ve not hit the chemo-red-alert level of 37.5 (which is a pretty low bar to be honest, I’d barely give my kids Calpol for that!).

You could argue that a high state of alert is good. The evidence related to high risk of infection in indisputable as chemotherapy damages your immune system. However, life is not easily sanitised, especially as mine includes little people.

My grubby little urchins still fail to consistently wash their hands despite a prolonged campaign involving coercion, bribery and stickers (obviously). And even if they do we seem to be hit almost weekly by some virus. Winter, nursery, soft play…but what can you do?

I have furnished my house with vats of sanitising gel, poised in defence, like pots of burning pitch on the battlements of an ancient castle. Ready to fight germs and snot. But really? When faced with a vomiting child, desperate to crawl onto Mummy’s lap for comfort and nuzzle under in the crook of my shoulder, I have neither the inclination nor the strength of will to say ‘Of course darling. Just wait until Mummy reaches for a face mask, antibacterial gel and rubber gloves.’

Solitary confinement until the crocuses break through the earth’s surface and the viruses shrink back into dormancy like little vampires in the pale spring sunshine doesn’t appeal either. Clearly getting through chemotherapy is about risk mitigation and conscious choices.

Can I eat more vitamin-rich vegetables and fruit and ensure my diet is chock full of immune boosting foods? Yes siree.

Can I (reluctantly) avoid environments where the enclosed space, the throng of people and the specific microclimates like the pressurised cabin of an aeroplane, the humid misty sanctuary of the hot yoga studio, the damp warmth of the swimming pool changing room all raise the stakes of transmitting and receiving unwelcome infections? Yes. (Although I’m pretty gutted about the hot yoga AND the flying).

Can I continue carrying around hand gel and using it as much as possible? OK. If it helps, then I will.

Beyond that, and dosing everyone around me up on vitamins, there is not much more I can do but hope.

So today, as I sit attached to my latest fix I am trying not to worry about infections or side effects over the next few days and weeks. What will be will be.

I am reassured by the fact that I have family to help with final preparations for the Christmas festivities, plenty of distraction and entertainment for the kids should I need to bow out and take a nap, so really there is nothing to worry about. Hopefully, like all of you, Christmas will be a relaxing and cheerful affair. A time to enjoy good food, good company and possibly even some snow if the weather reports are to be believed?

In case I don't manage to blog again as the drugs do their work, let me wish a happy chemo Christmas to you all. x

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