In recent weeks, I have been making a mental list of the many things I am grateful for. As my latestblogs have been largely conflicted and dark, I have been feeling the need to inject some levity into my writing. Yet every time I have tried putting pen to paper, something has happened to render me less grateful. Or maybe not ‘less grateful,’ simply distracted. That experience of the world closing in again.
It a cruel process, the expansion and collapse of my world. Just when I dare to dream about the end of the chemotherapy and the future, something happens to remind me that these remaining weeks, and indeed the period beyond will be fraught with challenges.
This last week, on the back of a wonderful, relaxing night away with my husband, (child-free thanks to the generosity of amazing friends), I felt rested and eager to spend a lovely family-focused Sunday with my children prior to Chemo Cycle 11. Everything started well with civilised wake-up times, stories in the family bed and an impromptu fashion show of my latest acquisitions (Don’t judge me!).
In short, the mischievous imp of vanity has been nagging me about a forthcoming holiday we have dared to plan. It keeps whispering the word ‘bikini’ in my ear as a pessimistic taunt regarding less appropriate beachwear for my post-operative, stoma-enhanced abdomen. Last week I duly silenced that voice by ordering a veritable treasure trove of swimsuits and high-waisted bikinis. Effective at concealing my colostomy bag…AND unexpectedly on trend and therefore readily available. (On trend is a rarity for me).
But only minutes after breakfast everything went wrong.
My gut went into intense spasms. Visceral pain ensued as I doubled up in agony in the floor, trying desperately to shield the children from my panic-stricken state. My mind lurched back to October 2016 and the beginning of all of this. Acute, stabbing, bilateral, rhythmic contractions, reminiscent of labour. Deep pain that leaves you moaning like an injured animal.
I was in little doubt that this was ‘serious’ and within minutes the kids were offloaded and I was back in hospital, assigned to the Surgical Assessment Unit, whose very name inspires awe and terror in any who have ever undergone major surgery.
It’s been a very long and terrifying week for me and for my nearest and dearest. Any medical conversation that features the words ‘disease recurrence,’ ‘surgery,’ and ‘bowel obstruction’ interspersed with barely audible adjectives like ‘potential’ and conjunctions like ‘if’ and ‘but’ is a bad week.
Recent days have been filled with intermittent pain, fear, boredom and the odd, rare, wonderful moment of levity and joy with friends.
Things I have learnt include the following:
- That being ‘nil by mouth’ for four days is a genuine and effective medical treatment for resolving bowel obstructions. (It has also, incidentally, been a key factor in deciding whether to return size 10 or size 12 bikini bottoms following my aforementioned swimwear retail frenzy). Having mere saline dripped slowly into your veins, whilst watching those around you chow down on macaroni cheese is like torture. The experience makes hospital food smell delicious. After four days of fasting, hospital jelly was received like nectar from the Gods, with Rice Krispies an exquisite treat the following day. It makes the 5:2 diet seem like child’s play. I should stress that this enforced starvation allows the digestive system to rest, decompress and, astoundingly to resolve obstructions. I am hugely grateful for it, but I also feel liking printing and wearing a sweatshirt with the slogan ‘Cancer stole my butt’ on it, as my bottom appears to have vanished along with various other fatty deposits common to my gender.
- That even when your stomach feels empty, it never is. Who outside the medical profession knew that you literally can vomit up litres of bile for days and days after not eating? Or that bile looks exactly like someone dredged up an algae-infested pond buried deep in your guts? Dark green with floating algae specks, although thankfully no tadpoles. I suspect they must have been killed by the acidity? I also suspect that I will never eat seaweed again.
- That having an NG tube (Nasogastric) sucks. With no pain relief, they push a long plastic tube up your nose, past the eye socket, down the throat and into your stomach. Then it sits there for days filtering out the ‘pond water’ and waggling in your throat with every inhalation of air. On the flipside, it also makes for an interesting game for bored, semi-delirious visitors. Did I look more like an exotic hummingbird, an elephant or (my personal favourite) an anteater?
I could, and probably should, go on about the positive aspects of the immense institution within which I was treated. The diligent NHS nurses forever chasing doctors for alternative pain control options. The repeated scanning and jabbing to diagnose and alleviate my suffering. The stoicism and solidarity amongst ward-mates, united by colorectal woes and by shared pain…but I suspect I’ve given you enough of a flavour of the past week.
It was grim.
I feel tremendously fortunate that a week on from my admission, order seems to have been restored to my digestive tract. Perhaps not permanently, but the chance to be at home with my family, pain-free and indeed scheduled to return and complete my chemotherapy feels like a lucky break compared to some of the alternatives that were muted at various points during my ordeal.
To return to, and extend, my ‘bear going over the mountain’ metaphor I feel this latest episode was particularly cruel. A week ago I genuinely felt like with two chemotherapy sessions left and ten behind me, I was nearly there. I could see the light at the end of the tunnel. The end was so close I could see it in my mind. I was daring to see beyond the confines of those last two periods of hibernation to potential freedom beyond.
My bear was gambolling down the sunlit mountainside, staring only the horizon and dreaming of salmon fishing on the rivers and plains below. Yet I was so caught up in daydreams I forgot to look down at the path immediately in front of me. Perhaps it equates to falling into a deep pit? Or a mini avalanche burying my bear alter-ego in rubble? Or getting my paw caught in a snare? This latest episode totally blindsided me as I didn’t see it coming. A huge mental and physical blow, crushing hope and calling into question all those fragile dreams and plans I was beginning to make.
Perhaps I could never have foreseen this latest turn of events? Perhaps it is simply that life will always have the capacity to surprise and to shock? It can bring pleasure or pain and such events simply serve to remind you that sometimes you have no control over what comes next. A further prompt about living in the present, making the most of each and every day, and focusing on joy.
Luckily for me I have once again been blessed in my circumstances. True humanity has come to the fore again in the form of family and friends, trained medical staff and a whole community of virtual and physical support that has metaphorically pulled me from the deep pit, dusted me off and nursed me back to health. I left hospital a weakened and chastened bear. A few more scars, a little more wisdom, but nonetheless ready to fight another day.
And so onwards again to those last two chemotherapy sessions. Ever onwards towards the light.
Still positive. Yet more cautious than previously.
I have been warned by many who have trodden this path before me that I am unlikely to ever enjoy full, carefree liberty like I used to. For the shadow of recurrence will always lurk in the mind of any who have been through cancer personally or with a loved one.
But perhaps with time the shadow will recede, sometimes forgotten temporarily. So, I will look forward to such moments with great excitement, and in the meantime will cherish each and every moment of levity that comes my way on the road ahead.