Cycle 4 - On preparedness...and foxes.

It was inevitable that at some point in this unpleasant journey through the wastelands of chemotherapy that there would be deviations from the main road. I didn’t think I’d miss the customary fortnightly way-markers of Cycle X, Pump Off, Line Flush, Blood Test, repeat, but it turns out that predictability is good in this scenario. This cycle, feeling feverish, I unintentionally meandered off the main highway into a cul-de-sac and collapsed against a proverbial brick wall for a while before realising that I needed to call for help.

The 24hr nationwide oncology helpline is amazing. In tone and manner and advice they were spot on. Reassuring, comforting, yet firm. They know that no one wants to be admitted to hospital, but they gave me strict boundaries.

“Tonight, if your temperature goes up you will have to go to hospital”

“Take the antibiotics, cool down and we will call in 30mins, then in 60mins to check up on your temperature.”

Mercifully I got to stay home thanks to some broad-spectrum antibiotics I happened to extract from a dusty corner of my medicine cabinet, somewhat out of date, but hey! (I did mention this fact to the helpline in case you were wondering). But we all agreed that sleeping in one’s own bed is far more likely to enable rest and recovery that the winking, bleeping, semi-darkness of a hospital ward. It felt like a stay of execution.

The following morning during a blood test the acute oncology nurse told me that she meets almost everyone at some point. Toxicity and infections lead everyone to her door, largely begging a reprieve from unmanageable symptoms and spiky temperatures.

Thus far I’ve been ‘lucky.’ I have made it through three cycles without complications – feeling sick-as-a-dog, curled up in the foetal position for days like death-warmed-up doesn’t count by the way. This cycle, with permission, I tinkered with my anti-emetic drugs, desperately trying to avoid the insomnia and subsequent depression caused by the evil steroids. It worked, but at what cost? I have been able to sleep better but maybe it had knock on effects? Or perhaps it’s not linked at all? Stop stressing Kim, you’ll never know.

Anyway, it turned out I was neutropenic. That means that I have no first line of defence against infections, low neutrophils make you vulnerable. Mine flirted on the edge of hospital admission. At less than 0.5 they’d have to admit me. Mine were 0.5.

I didn’t want to be admitted. The nurse didn’t really want to admit me.

As a first-time offender we settled on a compromise: in-date antibiotics, further blood tests on Monday, and an injection to stimulate the bone marrow to produce more neutrophils and white blood cells. Home, but exhausted I have become hypersensitive to every twinge and tweak of my body, the ear thermometer now close at hand to keep checking my stupid temperature. It’s hard not become paranoid.

On the upside, cycle 4 is now complete. There are no more chemotherapy drugs to take for another eight days.

This is now the point where a new plush fox can officially join the skulk of foxes above my bed (and yes, skulk, is the collective noun for foxes).

This fox ritual arose somewhat spontaneously when a wonderful friend sent me my first plush fox after reading my FULFOX blog. The second and third foxes joined thanks to the magic of internet cookies as I perused a well-known retailer during the January Sales. Suddenly ‘sitting fox’ and ‘running fox’ popped up as greatly reduced items in my side bar and in my mind a ritual was born. In my craving for visual and physical manifestations of progress on this journey, an extra fox above my bed seemed perfect as a metaphor for how far I have come. A new fox for each completed treatment. My lovely friend who sent the first fox and thus inspired this idea has gleefully offered to become my fox-catcher every fortnight (although should anyone else wish to join the fox ‘hunt’ then message me and I’ll put you in touch!).

My children are thrilled at the prospect of more soft toys in the house. I am thrilled with my visual progress check every time I go to bed. My husband is less pleased by the prospect of 12 foxes on our bedhead.

I’ve reassured him that they will be relocated once this is all over, ideally to a large Perspex box, like an art exhibit where each fox is nailed to a plank…but that’s probably a little macabre for toddlers. Am not sure I could face the tears and cries of ‘Poor fox’ ‘What happened?’…and actually some of the cuddly foxes are very endearning. ‘Running fox’ and ‘sitting fox’ not so much. They are now dubbed ‘pregnant fox’ and ‘toilet fox.’ (Basically, I can see why they were reduced).

Anyway, foxes aside, the lesson from this cycle is that I need to be better prepared and more vigilant. Less blasé  ‘it’ll be fine’ and more ‘just-in-case’ activity. More fruit and veg to boost the immune system, more rigorous use of hand-gel to eradicate germs, less kissing and hugging (which is a difficult habit to break as hugs offer such great solace) and I will be now packing a hospital bag.

Much like you are advised to do when pregnant, I think chemotherapy patients should be advised to pack a bag. Anyone who has ever been through an emergency admission and unexpected hospital stay will know how trying it is not to have your own useful things, and you rarely remember what you want, or need, when asked by visitors as pain-killers, medication and sleep deprivation addle the brain.

After surgery it took me nearly a week to get close to a full set of essentials like underwear, slippers, toothbrush, shampoo, headphones, blindfold and semi-appropriate nightwear (by which I meant anything that permits semi-dignity given the mess of IV lines, cannulas, drains, catheters and routine observations), etc. I’m not sure I ever achieved the nightwear solution and recall being distinctly embarrassed when interacting with my wonderful, dignified Muslim ward-buddy and her (clearly embarrassed) family as I sat, day and night, in a hastily grabbed item from the family airing cupboard that left little to the imagination. In fact, I never remembered to ask for a washbag, so I recall shuffling to the shower with my toiletries in an empty Interflora box tucked under one arm, pushing my wheelie-stand of IV drips with the other. As a final nail in the coffin of unpreparedness, I finally left hospital with four overfilled gift-bags and three flower boxes chocfull of my amassed possessions, instead of a sensible holdall, as no one had thought to bring me one, and I hadn’t articulated the need.

So, ‘just-in-case’ I will be packing a proper hospital bag that hopefully, much like my maternity bag I will never need to use. I’m not sure what packing list they give you for elective surgeries, but surely they should do the same for chemotherapy patients? That way I never be without clean underwear and dignified clothing again. On the subject of the latter, research and good fortune have lead me to the discovery of INGA, a new company specialising in stylish, comfortable, hospital-appropriate clothing, cleverly designed to accommodate all those medical interferences and annoyances whilst preserving dignity. Guess what I will be packing as one of my luxury items… ‘just-in-case’?

And so hurrah for surviving cycle 4 and welcome to my new fox, Sammy.

And this week I am feeling tremendously grateful for having escaped hospital (this time) and for the reminder to be more prepared. A lesson I will perhaps be transferring to other parts of my life too?!

The challenge of presence

Today I am grateful for the fact that I actually feel sentient and relatively normal. Today I have the capacity to be present.

Presence is a bit of a buzzword right now. At every turn it seems I am reminded of the importance of this moment, this breath, this present experience.

I am not in disagreement with the concept of being more present. In fact, I readily enjoy the 5-10mins I set aside each day to meditate and to try and be ‘in the moment’ and focus on my breath and body.

Yet for three reasons I find it difficult to remain ‘present’ at the moment.

My first challenge, common to many, can be summarised as ‘modern life.’ A friend recently told me that their only New Year’s resolution was to be more present. Less multi-tasking generally. Less scrolling through emails whilst simultaneously trying to cook dinner, less perusal of social media whilst pushing kids on the swings, less texting from the bathroom. It is no wonder that Microsoft’s report last year announced that our attention span had dwindled to a pathetic 8 seconds, less than that of a humble goldfish.

Yet it’s become a habit and a reflex. The moment we experience almost any pause in proceedings, there is that instinctive twitch towards your handbag or pocket for the smartphone. An instinct to fill those minutes that might potentially be wasted, an urge to be productive whilst the kettle boils, or whilst your partner leaves the restaurant table to go to the toilet. I am as guilty as anyone of this, but I rarely stop to consider why I’m doing it or what I might achieve if I just sat peacefully for a moment.

(As an aside, I tried it the other day and rediscovered the lost art of people watching; rich pickings included a couple clearly on a first date, their body language full of energy, expression, flirtation and a desire to impress. Food for thought indeed).

My second challenge with ‘being present’ is related to memory and photography.

Taking photos has long been a hobby and passion of mine. I love good photos. They act as triggers for memories past. A good photo can evoke not only emotions but the whole scene, the full story. To others that imperfect snapshot with faces blurred may look like a rubbish family photo ripe for deletion, but I know that we were all smiling because much to my protestation my son had been brumming his toy car noisily and violently over my face and chest. A carefree moment long before the world of cancer treatment loomed into my life. That’s the private back story, the truth of an image speaking a thousand words, but perhaps only to me.

Only my desire to capture such moments has deteriorated into something less appealing.

I am probably the first to pull out the camera phone to record what is happening on a daily basis, and I truly love looking back at these moments later on, be that hours, days or years later. But by virtue of being behind the camera I am rarely in the photos, not indeed totally present in the scene. The scene may be entertaining, poignant, hilarious, but my own experience of that moment was inhibited by a barrier. Be that a traditional lens or a screen, either way, one could argue that I was not really fully partaking in the moment, that I was not really ‘present.’

I’m not sure how I break this habit. I would be hard pressed to give up the photos that my habit generates, but perhaps rather than taking 20 shots, or video clips that I am quite frankly never going to have time to edit and will simply sit eating up memory capacity for many years hence, perhaps I should impose a numerical limit and some rules?

Of course the sneaky commercial companies are one step ahead of the game. Hot on the heels of the selfie stick is the voice activated camera. `You’ve probably all see the adverts. You set up the tripod and camera, and tell it to record so you can be in the shot, not just behind a lens observing. Cunning and tempting.

However, it may come as no surprise to hear that my third and greatest challenge to ‘being present’ is my health. Particularly through this third session of chemotherapy I have been acutely aware of my mental and physical absence.

This feeling is doubtless common to many health conditions be they physical or mental; either the body or the mind fails its owner temporarily of sometimes, permanently. It is a difficult experience to endure. It feels like checking out of life for several days, not through want, but through necessity. An enforced hibernation without the upside of welcome and restorative sleep.

One dubious positive of chemotherapy is that it is becoming slightly predictable. Whilst I am only on my third session of twelve, I knew what was coming this time. And I dreaded it, as I doubtless will each time.

The impending misery feels like a predator lurking high above me. I can’t see it, but I feel the menace in the air. It watches me for a while, lurks in the shadows and I know it will pounce soon enough. But knowing what will happen does little to stop it feeling like an ambush.

One moment I am fine, sitting at the kitchen table discussing the trivialities of packed lunch planning. The next, the sneaky white animal has descended like fog from a mountain-top, muffling my brain and sapping my energy. It is all I can do to crawl upstairs to bed.

I know from experience that this particular animal will hold me fast for days. Occasionally it might allow me a brief reprieve, a gasp of air, a moment of lucidity when I may feel present. On occasions it permits me interludes of joy, an hour to seek out the childish pleasure of crunching musical ice-puddles in the chilly sunshine. But for at least five days, it will toy with me. Tease me that I might soon be able escape and to breathe…only to ensnare me again minutes later.

This sneaky creature appears in my mind as a mean, white cat. Few other animals are known to toy so mercilessly with their quarry.

In a cartoon version of my life, the mouse (me) peers out from below the heavy feline paw under which it is pinned. It can sense freedom just beyond those sharp claws. For a moment the cat teases, the claws retract, the mouse darts forward and tastes fresh air. But it is merely a game. The weighted paw crashes down on the mouse slamming air from lungs and crushing both the spirit and soul.

Future attempts at escape are increasingly halting and tentative. Why bother if you know you cannot succeed? But my mouse will try until I can try no more. It uses every available ounce of strength to fight for those fleeting moments of joy in the midst of incarceration. My mouse is buoyed by each sunrise and by the promise of each new dawn being a day closer to salvation.

For a couple of days it almost feels like the predator has won. My spirit is artificially broken by drugs and all I can do I lie listless and still under the predator’s watchful gaze. Waiting, and hoping.

And then just as suddenly as this menace arrives it will vanish. Drawn perhaps to fresher, more tempting prey. At the point where I am almost incapable of thought or movement, almost defeated, it leaves and then I can recover. Until next time.

This fortnightly checking out process sucks. It’s not a choice, like a yoga retreat or a meditation seminar. The drugs temporarily suspend my ability to be present and I have to fight for every minute of sunlight in those dark moments.

I know that many around the world have, and continue to, endure things far worse that my own experience. I am lucky that my enforced absence is so temporary. However miserable it seems during those days, I know it will pass…as all things do.

So whether you are in the midst of good times or bad, seek out opportunities to break away from ‘modern life’ and to be present. Truly and fully present, particularly with your loved ones. In the dark times, these moments of joy are the memories that will sustain you.