Lockdown Diaries part 5

Surrendering to the unknown

Last night, about 10pm, I took our two dogs out to relieve themselves before locking down the house and setting the outside passive alarm. Our lab/collie-cross poops on command, a skill I learnt training tracker dogs during my national conscription service in the dim and distant past. Of course, it helps if a dog is ready to go, but it certainly speeds up the process, especially if it’s chilly outside. As I lean with my forearms on the trapeze swing of our kids’ jungle gym and Maya and Emma (the latter, a loveable Jack Russel-cross-Fox Terrier who listens to no-one), do their stuff, I switch off my head-torch and lift my eyes to the Milky Way shimmering above our roof.

What difference will it make to the cosmic scheme of things if I die, I wonder? Contemplating my own oblivion is awe-inducing. Flip the existential switch. Done. Gone. Phelile’ (as in finished and klaar). Was I ever really here, and did it actually matter, cosmically? Oblivion doesn’t so much frighten me as induce wonder. Now you see me, now you don’t. Nature and the universe literally define the words: neutral and impassive. Will I even know I’m gone? Those left behind certainly will, hosting my love-legacy and several, my DNA. But I, in my physical existence will have atomised into thin air. Or rather, been reduced to dust.

I shake my head. I’m back in the here and now, the catalyst for my pondering; a four-to-six- hour surgery scheduled for June and aimed at curing my oesophageal cancer, with just a two percent fatality rate. Yet my mind will gnaw on that tiny bone. Something has changed in the way I contemplate death. It’s more visceral, no longer tucked away for toying with in theistic/agnostic debate; a distant, idle concept, an idea. It’s a-comin! Just when is, of course middle and centre of my consciousness, but the inevitability is something I’ve never properly engaged with.

And that’s as far as I’ve got. I’m spending most of my lockdown time engaging with life-as-it-is, the here not the after, in spite of several spiritual, motivational and religious You Tube videos and SMS texts sent to me by well-meaning relatives, friends and acquaintances. I think a Rumi quote actually shaped my historic thinking the most; ‘There is no God but Reality; all else is the action of the fall.”  I also like; ‘God has no religion.’

Best call me a Pantheist, because I do believe that everything temporal and finite is but some part of God, and that God speaks to us through the events of our lives. I reckon there’s some universal force that wants us to evolve spiritually and emotionally, before taking us back unto Itself. So many religions speak to that concept. I embody opposites which define one another, as do all things. Yet I’m uniquely human. No other Being quite like me will ever come this way again. That’s an awesome concept worth contemplating and holding onto, especially for those blinded by depression and hopelessness in a trough of despondency. This too shall pass. Covid-19 shall pass – somehow, dear God; though a vaccine remains elusive. Life is a rollercoaster worth riding, turning a gasp of fear into excitement, just by taking three conscious breaths.  My cancer path in this time of Covid-19 is littered with gifts. Surrender, born of the unexpected and unpredictable (lung clots, body rashes, fatigue among them). I can so identify with societal frustration at the lockdown. I need a travel letter from my oncologist just to get my weekly chemo-therapy. I’m watching the Western Cape’s Coronavirus infection rate climb way ahead of other provinces (better testing?). I wonder what my hospital Covid-19 patient occupancy rate will be like by June. Nothing is predictable. Will any hospital be of sufficiently low infection risk – and have an open surgical spot so my bariatric surgeon can swop theatre facilities if necessary?

My oncologist says things change hour by hour for all her immune-compromised patients as lockdown rules are tinkered with, upgraded or downgraded, or their personal contexts alter. She has to be agile and adaptable, innovative and empathic. It’s time of mystery and wonder. We simply don’t know what the future holds – though we’re all doing our level best to omnipotently predict it. Perhaps it’s time to surrender while taking full responsibility for protecting ourselves and everyone with us in this

Lockdown Diaries part 4

Self-sufficiency 

Continuing my cancer-evoked theme of gifts coming wrapped in strange packages, it strikes me how proud Face Book correspondents are of their Covid-19-induced lock-down adjustments and adaptation – call it ‘self-sufficiency-bragging,’ if you will.

They almost equal the whiners and false-news peddlers (though there are legitimate complaints around heavy-handed police and military enforcement of the lockdown, plus some seriously counter-productive regulations).

As I fill a 10-litre bucket from my 50 000 litre, roof-drained water tank in this morning’s balmy, unusually dry mid-Autumn Cape weather, I feel the satisfaction of knowing that something I did is reducing my water bill. But more than that, it taps into a primal, return-to-basics, pioneering disposition. Solar panels are a bit steep for our budget, with Eskom’s Covid-induced, yet welcome continuous supply of power, a source of probably short-lived, reassurance and gratitude. Yet cheap solar-powered glass jars, strategically placed around the house, do the job adequately during black-outs, (sans TV of course, though we do have a gas/electric stove).

The schlep of carrying and carefully pouring water into my downstairs toilet flush-tank, (upstairs we use a large, flexible, double-grip shower bucket), is nullified by an overall sense of gratification. Not to mention that I need to piddle at least every two hours from the three litres of water I consume daily to keep my kidney flushed and healthy, diluting my weekly cyto-toxic infusions. Before I’m accused of suffering from Obsessive Compulsive Urination Disorder, (OCUD), having lightly and with some amusement flushed this out in an earlier blog, let me turn to matters more cerebral.

As in how I do I feel, faced by Stage One Esophageal Cancer (diagnosed last November and entering my 18th chemotherapy session prior to a four-hour op, hopefully this June – if my hospital is not overrun by Covid patients)?

A bit driven, actually. As in dancing to the wickedly deceptive old tune of, “I have to, or else.”1 My time may be cut short. Am I ready to die or not? Fundamental, diverging paths, sharply presented by a psychologist friend and former journalist. No, I’m not ready, dammit! Even though the former option is hopefully based on a Buddhist (or Christian or Muslim, come to think of it), approach to our existence. Given that I want to live through this, attending to my bucket list, my ways of being and creatively coping, could slow down that inexorable oncoming train, perhaps sufficient to see me into my old-age, my friend suggests. Surely at 63, that’s not too much to ask? Back to my driven-ness, that fly in the sacred ointment, the ever-present shadow, ready to cast itself over me whenever I get reactive to daily small unwelcome events, especially when I’m chemo-fatigued (though that excuse has worn thin)…I mean, just my two pre-teenage daughters coming into my office for the fourth time in as many minutes seeking affirmation or advice, or my wife talking inaudibly to me from some distant part of the house, can get under my skin – if I allow it. And boy, is it tempting!

Don’t they know that;

I ‘have to’ triple my income to cover the zero-cash-flow during the impending two-month operation and recuperation period, “or else – we will allsuffer?’

Or else; ‘we’ll bleed dry the provisional tax savings temporarily servicing my home bond account?” The list is long, tedious and paralyzing. It feeds my fears and I get into this dull, overwhelmed, passive mode; resentful and angry; playing out a victim drama.

Instead of saying; “I choose to, because I am…”2

I choose to call my better healthcare contacts built up over 16 years as a medical reporter, because I am well-liked, respected and have integrity, love my family deeply and have the ability to make this happen. I am innately loving and care deeply for greater equity and connection in the world. My friends, family and contacts can sense this in my language and actions. I could go on, but you get the idea. I even have a crowd-funding Plan B, honestly stating my short-term needs, unhindered by pride, being the main bread-winner, the stigma of not having ‘enough’. Clean fuel for living, versus dirt in the valves, pistons and cylinder walls, not to mention the radiator (sorry, OCUD-speak sneaked in there). It’s a daily battle. Sometimes I win it, I often lose it. But it’s worth fighting for, because of the kind of father, journalist and person I want to be. I don’t want to wait until my last mortal moment (which my mind omnipotently forecasts will be on the operating table, joking with the surgeons pre-anaesthesia), to start a negotiation with God about how I’ll be if He spares me. Why not seize the day now? And forgive myself when I lose the plot

Lockdown Diaries part 3

Mothers-Day and the Mother of all Viruses.

My ‘Mother’s Day’ this month began at precisely 06H28, which is when my nine-year-old daughter, Kate, had set her alarm so we could prepare a sunrise breakfast for my wife, Suzanne, to enjoy in bed.

I checked my cell phone; it was precisely 06H28, seconds after Katie, whispered in my ear, “Dad, it’s time!”

Down the stairs we go, with my older daughter, Hannah, (11), in tow.  Story-time the previous evening was replaced by excited logistical planning and debate over whether to first wake Suz with hand-made cards and presents, (accompanied by a cell-phone musical playlist of her favorite songs,) or, to start by serving my freshly-made three-egg, cheese, onion and tomato omelet. We decided on keeping the breakfast hot, so prezzies, cards and music would follow. The girls made toast and peeled an onion, while boiling the kettle for tea. Before we knew it, the Hottentot’s Holland Mountains were glowing orange, yellow and purple through the upstairs windows, announcing an imminent sunrise as Suz plumped up her cushions, a broad smile on her face as I laid the appealing tray on her lap.

Living in a time of Covid-19, (us with the added challenge of my being severely immune-compromised by the chemo-therapy required to shrink an esophageal cancer tumor), events tend to take on a rare poignancy.

As in what Hannah wrote on her card; “Mum, I want to dance with love for you.” Spontaneous dancing with her headphones on, take Hannah-Pan into a delight-filled space as she moves her body timelessly across any space. She precisely conveyed her feelings for her mother in referencing those emotions. Wow, my daughter was born with EQ, something many of us spend a life-time working on!

It brings to mind the saying (source unknown); “the only question worth asking, is why aren’t you dancing right now?”

It’s an exhortation to live in gratitude by adopting an open, positive, receptive mindset, something my cancer has gifted me with, and which I spoke of in my previous blog. I’ve found hundreds of reasons to dance since my diagnosis woke me up to how I can better live my life and take thing less for granted.

Seemingly banal moments take on special significance when you realize death might be a lot closer than you’d expected. What’s changed is that my diagnosis has moved me from having expected (perhaps ‘hoped’ is more realistic), that my death would inevitably come with old-age. Which is not so unreasonable in this day and age when modern medicine promotes longevity, actually – except for Covid-19 curved balls. Right now, as the Coronavirus lockdown context dances with my cancer, I’m more inclined to seize the day and soak in special moments.

One such was calling my 88-year-old mother, who survived raising eight children (including three sets of twins) and hearing her response to nearly all my loudly-spoken input with; “Ah, my first-born, I love you so much.”

She recently had a fall while negotiating her way from her bed to her nearby commode in the early morning hours. We feared the worst; a broken hip or leg. But the emergency response guys who took her by ambulance to the nearest hospital for a scan and treatment for general bruising, said it didn’t seem so, pain notwithstanding. Turns out they were right, but my biggest fear was her contracting Covid-19 in that hospital. KwaZulu Natal doesn’t exactly have the best record of preventing private hospital Coronavirus outbreaks. I breathed a huge sigh of relief when one of my sisters told me Florence Miriam Esther (nee Calverley), was finally on her way home that afternoon.

Then of course, like many more-privileged South Africans, there’s the ‘house-help’ dilemma. Mums’ “minder,” Saraphina, chose to live-in with her and my dad for the first lockdown period, for which we were all immensely grateful. My Dad is 90, still very sharp, but not capable of all the physically-challenging assistance my mother constantly needs. Then later, Saraphina chose to return to her own family when the lockdown was extended. Understood. No problem.  My middle-sister Bridget, who is the live-in house-MC, would take up the slack. But now Saraphina’s back and we have one outstanding concern; just like cancer survivors, elderly folk are at far greater Coronavirus infection risk. We’ll all be more at ease once a week has passed and we know Saraphina is actually fine. It’s my parent’s decision (actually Bridget’s, to be truthful). Like all things lock down-related; you base every risk decision on the potential costs relative to the benefits. It underpins every one of the debates we’re flooded with

Lockdown Diaries part 2

A lockdown diary; from urination to rumination.

You could say that headline is about the transition from my previous blog to this one. From a chuckle to a ponder, perhaps.

That’s because the priceless lessons of abundance and grace that gift my daily existence today stand in such stark contrast to how often I cynically disregarded my blessings prior to my cancer diagnosis. The milk of human kindness and generosity of spirit are now in my face in a thousand ways, while the synchronicity of events and their timing speak of something far larger – something ineffable, that is totally ‘For’ me.

Yesterday I supported a PR person and good friend, (yes, the two can co-exist for a journalist), who was suffering a crisis of confidence prior to a very promising Covid-19 lockdown-related work opportunity. She has courageously launched her own outfit after a highly successful corporate career. When I confessed to her that I was a terrible cynic in my newspaper and SA Medical Journal days, she strongly agreed – to my surprise. I guess it’s far easier to make a confession, than to have it highlighted or confirmed by others! Yet, it again emphasises just how the greatest gifts and shifts in life so often come wrapped in strange packages. There’s hardly a cancer survivor I’ve interviewed who doesn’t highlight their diagnosis as a ‘blessing in disguise.’ At last count (and this ironically, was some months before my own diagnosis), I’d interviewed, (in depth), some 20 cancer survivors for the oncology portal of a leading medical aid, not to mention the half dozen or so cancer survivor forums which I’d attended while news editing the SAMJ.

Who gets the opportunity to (unknowingly) prepare for an impending challenge by interviewing a host of people facing, or who have just faced, an almost identical one? When my gastroenterologist first called me to deliver the biopsy diagnosis, I was about to go into an international emergency care conference session on Resilience and Burnout among SA’s overworked emergency responders. It was as if Life was saying, “Ouch, that’s a rough blow; now here’re some tools to help you cope.”.

Here’s another gift; being an immune-compromised person (via chemotherapy) and a healthcare journalist during the Coronavirus lockdown. What better way to awaken me to the myriad life-and-death infection control issues swirling through communities and healthcare facilities? I’m one of several million highly-vulnerable South Africans immune-compromised through a variety of pre-existing health conditions. To us, the one or two percent Coronavirus death toll cannot be lightly dismissed; co-morbidities dominate Coronavirus fatalities.

Which brings me to what the lockdown is teaching me. For one, it’s that I can be innovative within locked-down work constraints. Some stellar partnership with the Hospital Association of South Africa, (HASA), has resulted in my sharing my cancer journey in a series of ongoing podcasts and filming a Covid advice video, (in Zulu), which they are distributing widely among their private member hospitals. I have amazing healthcare contacts across the public and private sector, people whom I’ve grown to like and respect over my 16-year healthcare reporting career. Some go further back; to the 80’s ‘struggle years’ when I was in the Cape Flats townships on a daily basis for the Cape Times, or subsequently reporting for the SAMJ’s ‘Izindaba’ on the victimisation of doctors dishing out ARV’s in defiance of government denialism and snake-oil remedies.

Today, these people take my calls and return my e-mails, in spite of their long, torrid hours at the coalface of the Covid-19 pandemic. It gives me a ubiquity I’m deeply grateful for and enables me to deliver reliable, well-sourced, solid stories. They instinctively (and historically), know that I’ve got their backs, my having become a strong advocate and lobbyist for adequate personal protective equipment among their vulnerable, thin ranks.

I’ve adapted from travelling to and covering medical conferences and healthcare workshops, (previously a major source of income), to fall in (with the rest of the world), by becoming a cyber-worker. Not everybody can; witness the travel industry, estate agents, hairdressers, the list is long and the debate furious. Some of the personal protection measures we take; my wife, Suzanne, sanitises all groceries (pre-ordered, ‘pick-up-and-go’), before showering and changing clothes, I wipe down with sanitizer, all home-delivered medicines, including the invoice, washing my hands each time. When I collect the empty re-cycle and rubbish bins on the street on different weekdays, I wipe the handles down before wheeling them in, then wash my hands. Paranoid? I don’t think so. I’ve just watched a video of a recovered mid-60’s Coronavirus-infected cancer survivor being wheel-chaired out of the nearby Durbanville MediClinic, clapping staff and a few beaming family members lining the passages. It’s a four-minute drive from my front door. For all concerned, this was a major victory – they lost another Covid-19 patient, also suffering from pneumonia, in the ICU bed next to him just days previously.

Lockdown Diaries part 1

When you can’t kid the kidney – or sidestep your bladder

This first blog sets the context for how being an immune-compromised person affects one’s everyday behavior during the Covid-19 lockdown. Trot with me through the minutiae of my everyday cancer-survivor life before easing into my own unique lockdown slow-waltz in my next blog. Here we go…

What could be more appropriate than to start this blog two hours into a three-hour chemotherapy infusion?

Perhaps I’ll see just how, what’s commonly known among cancer survivors and oncology caregivers as ‘chemo-brain,’ affects my writing!  So far, I’m able to order my thoughts relatively well as I peer at Table Mountain over the head of another survivor being infused with cyto-toxins opposite me. I’m in the chemo room on the second floor of Blaauwberg Netcare Hospital with four other patients, having got over some initial irritation at an hour’s delay in my appointed 1pm starting time. The cancellation last Monday of my chemo-session due to my blood count being below acceptable risk levels, meant that instead of the usual 9am weekly start, I’m being slotted in much later today. Seems the afternoon slots are far busier, leading to some impromptu time-slot juggling. OK, now I think the fatigue I’m feeling due to the anti-histamine injection an hour ago (to avoid the swollen, peeling itchy wrists and numb fingers and upper chest rash I suffered as side-effects), is accelerating the chemo-brain. It took me about three minutes to formulate that sentence. Brings to mind that old barman’s greeting, “what’s your poison?” and the similar feeling that (much later) accompanies heavy consumption of alcohol.

If alcohol dulls your brain, then cyto-toxins straight into a vein port in your chest does a quicker, better job. Just without the disinhibition and initial elevation of the liquor. While a few too many drinks may take a good while to render one ‘dof,’ an anti-histamine injection is relatively instant. Within an hour or two anyway. Chemo, like alcohol, affects different people in different ways. With me, my oesophagal cancer-tailored toxic mix includes an initial blood thinner and saline solution (the last to help protect my kidneys which I guard on non-chemo days by drinking three litres of water). I’ve found that over the past 15 chemo-therapy infusions I’m pretty tired within a few hours of each one (I started to write “very” there, had an interaction with a nurse calculating my number of chemo cycles, (five of three sessions each), and completely lost my train of thought. Those who know me well would say that’s not unusual (especially with anything involving numbers), but heck, I can always trot out the chemo-brain excuse! At least I’m a bit better with numbers than our former president, (in itself an indictment). OK, where was I? Oh; about to tell you that on Day Three and/or Four, post-chemo, I’m properly whacked. As in, if I don’t take an afternoon sleep, I get sloth-like, without even the energy to hang upside down from a roof rafter. Did I ever do that in my wilder, more youthful days (on alcohol)? You’ll have to ask my long-time friends and/or former digs mates. I do remember once dancing very romantically and intimately with a broom, to great amusement from fellow party-goers.

To use a somewhat less civilized expression, nearly 40 years ago I had intermittent episodes when I could accurately be termed a ‘piss cat’.  I am, since my cancer, once more deserving of that feline moniker. Except that this time it has to do with my over-imbibing of…wait for it…water! It’s strange thing, urination, because it graphically illustrates the mind/body connection. If I tell my mind when a long splashy release ends, that there really is more, then hey presto! – there is. I can even manage a third longish tinkle, using the ubiquitous power of the mind. Yet the body will not tolerate the opposite; as in telling myself I don’t have to go, when I actually do! It’s led to my breaking off mid-sentence or mid TV series, cross eyed and pigeon-toed, rushing down the passage. Only when I get to the loo do my eyes uncross. Only then can I start playing urethral mind-games.

Back to real time blogging. My (our) oncologist has just walked in and plonked herself down in an empty chemo chair next to me, sighing, ‘phew, the public holidays in that that three-day work-week played havoc with our scheduling.” To general survivor chuckles, I ask her if a round of chemo might not help, or perhaps a bag of mainline alcohol?  I’m actually feeling a bit guilty. Her presence and comment may well have something to do with my firing off a somewhat frustrated e-mail to her earlier about the lateness of my chemo session. I really must learn to ‘cross the bridge’ better in my relationships. Imagining her side of it and remembering the context of last week may well have led to my having had a kinder, more empathic approach. After all, I am by profession one who should get both sides of the story.