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thanks to some broad-spectrum antibiotics I happened to extract from a dusty corner of my medicine cabinet, somewhat out of date, but hey!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?!