Sunday, 11 December 2016

The train has left the station..

So the train has now properly left the station. Chemotherapy has begun. A somewhat noxious cocktail of 5FU & Oxaliplatin ingested intermittently over six months, but I am on board, physically and mentally. Grateful to be off the metaphorical platform, minor delays almost (but not entirely) totally forgotten.

Physically getting on the train, destination not quite certain, route yet to be determined, proved to be less challenging than anticipated when the moment finally arrived last Tuesday morning.

It turns out that if an unexpectedly large throng of well-wishers, both familiar and less so, pitch up to wave you off, cheer you on and wish you well on your journey, then your emotions change. Apprehension vanishes in an instant and fears withers, smothered by a warm blanket of human kindness. A veritable a superhero cape to vanquish evil, doubt and mental wobbles. (I have been deeply humbled by your amazing support. Thank you all.)

Cape on, I embarked on my journey. My companions for the journey, fellow patients and clinical staff. As anyone who has ever come across their breed will tell you, oncology nurses rock. They really are the best. Their compassion, humour and professionalism offers reassurance and comfort. The camaraderie both between nurses, and between patients, in spite of the situation, is almost tangible.

Whilst NHS headlines convey a dependence on expensive agency staff and talented migrants, the chemotherapy day centre proved to be a welcome anomaly. Staff turnover appears incredibly low; my wonderful, competent and dedicated nurse had done 25 years, another one 15 years, another 10 years…and so it went on. Like a remote and wonderful desert island, a refuge against parts of the NHS that are drowning / sinking / lost at sea with debts and infrastructure threatening to overwhelm the amazing culture and people that survive and thrive within its bounds.

Whilst I may still fear the side effects and the extent to which they will build with each passing treatment, the chemotherapy day-care unit holds no demons now for me. Just more examples of positivity, patience and humanity.

Fellow patients have different cocktails, different diagnoses, different prognoses…but I couldn’t guess a thing from those I spoke to or interacted with. Most joked, laughed, read the papers with loved ones, surfed the internet. Apart from the cytotoxic drugs, the lines, machines, the jaunty, out-modish hospital furniture and the lack of an extensive, pretentious hot beverage selection, I could have almost been sat in a bustling coffee shop for the day.

After a relatively productive day of Christmas shopping, reading, puzzles, etc. I came home shrouded in woolly scarves and a hat to ward off the winter chill. A cool, supposedly hydrating, glass of water was a sharp reminder that the drugs were at work. My throat constricted quickly. Never has luke warm water from the kitchen tap been so welcome!

In the days that have followed I have come to understand the term ‘chemo brain.’ It feels much like ‘baby brain’ but more pervasive and persistent, like a fog of apathy and lethargy that materialises unexpectedly like a magical morning mist over a river or valley. Only these tendrils of cloudlike fug fail to evaporate, they conspire to hold your brain in their fuzzy clutches, shrouding one from clear thoughts and feelings. Impermeable and opaque. Functioning, but not fully functioning.

I guess that’s why they say cancer is a mental game. You have to force yourself to get up and get going, use the mind to override the body’s torpor. Clearly not pushing the body too far, but out of bed at least, around the block with the dog, downstairs to play hide-and-seek with the kids. Fresh air and endorphins help to carve a break in those clouds.

Two days later I was thrilled to return to hospital and remove my natty bum bag. Stylish though it is in midnight blue neoprene, 48 hours in its company was more than enough for me. For now. Tangled up in its omnipresent lines as I tossed and turned in bed, amped up by anti-emetic steroids to counter the nausea-inducing 5FU it was simply another irritation to prevent much needed rest. I’m glad it’s off for a while. Its removal marked the conclusion to active Chemotherapy Session 1.

Hospital stint done, wound cleaned up, first proper shower in eons, then a chance for the bodily systems to respond, to deliberate, to react. Drugs in. Cells die. Immune system stunned and stressed and then a brief lull to recover before Session 2. For a while I felt everything was stressed. Several days of feeling groggy, tired, nauseous, but just about human. In all honesty I’ve had hangovers that have felt worse, but none that have lasted this long. (Guess that’s what happens if you’re hooked up to champagne for three days straight?!)

Finally, on Day 5, system finally flushed of drugs and steroids I slept AND I woke up feeling normal. A slightly alien feeling, but most welcome. A little like my proverbial choo choo train emerging out of a lengthy tunnel into dazzling sunshine. My royal blue engine with brass whistles, valves and fixings (for that is how I envisage it) tooted its horn in joyful, celebratory fashion as it careered on down the hill to a day of genuine enjoyment and festive fun with the kids. Hooray for feeling normal and for the opportunity to stroke the velvety antlers of real life reindeer (inner child beaming).

I’m assured that over time my own chemo-routine will become clear. Maybe three days amped up and hyper, two days of fug, one day of exhaustion…followed ideally by normality? Such predictability would be oddly welcome, counter although it runs to my preferred modus operandi, fly-by-the-seat-of-ones-pants spontaneity. Actually who am I kidding? Such spontaneity disappears with the advent of parenthood. Planning and predictability rules ok.

On the subject of planning I’m increasingly warming to the idea of a chemo calendar of treats. A prize or reward for each session I tick off. Sessions may be delayed, dates will change, dosages may change. I’ve been warned that I have only a 5% chance of getting through all 12 without something changing, but that those sessions will probably still happen in some fashion.

While the final destination of my lengthy rail journey may not be clear, it would be exciting to look out of the window in anticipation every now and then. Make the journey a little more like the Orient Express rather than the slow train to nowhere interesting, plagued by leaves on the line?


I think the repetitive sights of La La Land, Vomit Canyon and Lacklustre Valley are going to get pretty tedious. So rewards it will be. Better stick than carrot I say. Maybe a special lunch with friends? A new pair of boots? A Ferrari has been suggested but I think that’s a step too far unless a magical donor or Sugardaddy appears?! In the meantime, I’m happy to settle for simpler things, and right now, feeling good for a whole week before Session 2, with Christmas decorating to do, super-excited, effervescent children and family festive fun just around the corner I feel there is much cause for celebration.

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