Saturday, 31 December 2016

Reflections on my chemotherapy Christmas and an alternative end of year message

Since Christmas my fingers have been practically twitching to write. But there have been other priorities which have taken all my time and my very limited energy.
  • Returning the house to some semblance of order, which has required multiple trips to Argos and an ill-conceived and narrowly aborted venture to IKEA for new storage solutions
  • Finding homes of the latest influx of much-treasured, multi-coloured plastic/wood/glitter-coated hoard of toys. (Repeat above requirements for more inventive storage solutions).
  • Finding out how to start and stop the overly complicated, long-awaited ‘pink doll’ from crying, talking and wetting herself. Thank you Santa. Oh wait. Only got myself to blame for that one.
  • Inventing genius culinary combinations to rid the fridge of the turkey carcass and the half-mangled Stilton which now looks like a garish disused marble quarry, the smooth rockface hacked at and hewn by teaspoon and cracker into cheesy craggs and crumbs.

I suspect my situation is common to many households. After the Christmas mayhem comes the cathartic clear-up operation.

Only in my house the build-up and the main event were rather more muted for me this year.

Normally I’d be belting out Christmas tunes on repeat from early December, writing cards, decking the hall, etc. More importantly, I’d be re-perfecting the dance moves painstakingly choreographed by cassette (pause, rewind, repeat) many years past to Mariah Carey’s ‘All I want for Christmas is yoooooooouuuuu’ ready for the arrival of my festive partner in crime – my sister.

Only this year I didn’t have the energy or the inclination for such jollity. On the 23rd I was very much still in the ‘zombie zone’ as I now affectionately term my ‘chemo come-down’ which seems to take around 2-3 days after the 3 days of active chemotherapy.

‘Pump-off’ is the joyous moment when I am physically unplugged. Two days on from my hospital chemo session and I can move around without dragging my bumbag of drugs with me. However, then follows the decompression period. Kept artificially high for days with steroids, (which also have the upside of vomit-prevention), the low is pretty low indeed.

I’m not going to lie – I was pretty down about my inability to climb out of bed, to join in with Christmas meal planning, to enthuse about Santa with my over-excited daughter. But tears are allowed at Christmas, and my family could not have been more supportive about my physical and mental limitations this year.

It’s an odd feeling not being able to pull your weight. I know Christmas is all about TEAM. But my favourite team is the one I’m leading. Luckily years improving my self-awareness have given me a full understanding of my many weaknesses, and with advancing years I’m getting better at playing other roles too. I have even (on rare occasions) successfully played sous-chef. But let’s be honest. Not often.

So this Christmas was strange. I didn’t go and collect the turkey and eye-wateringly expensive fillet of beef. I didn’t peel potatoes. I didn’t wash up. I didn’t plan or prepare meals, bake mince pies or really do anything useful.

At some level this was blissful. You’re probably all screaming at your screens in jealousy reading this. But if you’re used to being in the trenches, it’s odd standing was back from the front lines simply observing.

Still. I’m sure I’ll be back on duty in future years. This is just a blip. Or so I have reminded myself many times as I’ve sought to enjoy the rest that my body so desperately needs.

On the upside, from the genuine and emotional trough of the 23rd, the 24th was an improvement. A cautious and tentative upturn towards mental acuity. I may even have had the strength to argue for control of the kettle to make a round of tea mid-afternoon.

I also made it to a Crib Service. In my book, Christmas is not Christmas without carol singing. Midnight Mass is way beyond my bedtime these days, but a child-friendly nativity number complete with optional fancy dress, audience participation and carols (minus descants I hasten to add) was pretty lovely. It was my first real moment of getting ‘in the mood.’

My second moment came at 2.28am. Pitter patter of tiny feet on our wooden floor.
Mummy? Has Santa been?’
Me: Groan. Roll. Grope for phone (2.28am). Big groan. ‘I’m not sure. It’s still nighttime. Go back to bed.
No physical response from daughter. Selective hearing runs in the family.
But are the reindeer on my roof? I think I heard them.’
My inner child shrieked with festive glee and I relented and invited her to join me in bed.

Three hours and several bedtime (?) stories later and I finally got her back into her own bed asleep. (Every previous attempt at sleep having been foiled by kicking, thrashing around, or further curious questions).
Is Yogo (our resident Elf on the Shelf) back from the North Pole? Where is she today? Have the reindeer eaten my carrots? Has Santa been to see …. (insert friend / brother / granny / relative name)?

All very endearing and magical. But exhausting.

I suspect without this early interruption I might actually have genuinely felt ‘normal’ on Christmas day. But hey, it was worth it for that tiny moment of joy at 2.28am when I too was so very excited by the magic of Christmas that only young children can truly evoke.

Thrilling as all of this may be, I will spare you all a blow by blow account of my own festivities and will instead explain why a Christmas on chemo is not all bad.

Firstly, I have been spared the temptation of excess drinking. Not worth it. My liver has enough toxins to process and my taste buds don’t tingle at the thought of port. I have sipped champagne and various other alcoholic elixirs and enjoyed a mere nip of each. Done. No hangover for me. (Mental high five!)

I have also been spared the guilt that traditionally accompanies festive overeating.

Don’t get me wrong, I too have overeaten and filled my boots and belly with chocolate, cheese, beef and all other manner of naughty delicacies. Only I am feeling totally guilt-free.

Warning: This next part is a little dark.

Post-surgery and mid-chemo (how I wish I was truly at the midway through chemo not a mere 2 of 12 sessions down) I am still light. Lighter even than the day I got married.

Clearly I would willingly and joyfully take back a stone in weight, maybe even two or three if I could choose an alternative non-cancer path for myself. But this is my path, so I may as well revel in the fact that cancer has robbed me of those pesky excess pounds.

I have always wondered who on earth has legs skinny enough to fit into those ‘super skinny’ jeans in Primark that I once picked up by accident and couldn’t face the hassle of returning. Now I know. Cancer has few silver linings, but if my buttocks have miraculously shrunk and people tell me I’m looking good. Well, I will celebrate that with guilt-free Christmas feasting.

However, the biggest cause for celebration is the perspective shift. All the clich├ęs here ring true, especially at Christmas. At a time when everyone is busy and stressed enough finishing work, hastily preparing for their own family celebrations, those that spared a moment to send small tokens of love and support my way will be forever etched into my heart and memory.

The cleansing juice delivered to my doorstep on Christmas eve to aid detoxification, the freezer food generously prepared by friends, the Christmas cards that went beyond the standard tidings of goodwill to send personal messages of hope. These are the things that I will cherish from this Christmas. My chemo-cancer Christmas.

Thought and sentiment have always carried more weight for me than lavish gifts. Of course, being spoilt rotten is glorious (I’d be shooting myself in the foot to say otherwise). But this year more than ever I’ve realised that the gift of time is more precious than anything else.

My brother-in-law and sister truly slaved for hours in the kitchen to create Christmas lunch. My mother ran herself ragged for days keeping the kids occupied and cared for. My husband cleared up again, and again, and again. My list could go on and on with family members and friends to thank and feel grateful too. I tried to find the words over Christmas toasts to say ‘thank you’ but I couldn’t trust my voice not to break up, and tears welled up as I even considered forming the words aloud. If I’d cried, others would have cried too. So I stayed quiet.

Every sunrise photo shared, every text, note and gift has felt poignant to me. Little things that mean someone has taken a moment, be that seconds, minutes or hours to show their support.

As we all reflect on the year gone past and set expectations for the year ahead my alternative Christmas message is therefore this.

Humanity is a wondrous thing. Time is a wonderful gift. Time taken to share and express your own humanity is glorious indeed. Do it more, each and every day.

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

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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