Irreverant Can-versation

Scrum caps and red wee
Hello again – and first of all, thank you for your great support in tolerating my ramblings – it spurs me on through both the process I’m a part of just now, and also to create yet more ramblings which is helpful for me. Don’t forget to locate the delete button before you settle down to read this or any future ones!

At the outset, I must clarify (something I failed to do last time) that this is my personal view of the very specific aspects of my thought processes around what is happening to me. Everybody who has cancer reacts to it differently – as part of that club, I’d say we were allowed that freedom. No club member’s views are right, wrong, better or worse. We just go with whatever flow falls to us at the time.

So if you find the following slightly irreverent, please reach for the salt and take a large pinch. Apologies, but this is quite long – it’s the first and last time I’ll explain it and I justify it as part cathartic and part something I wished I’d understood more beforehand, so it may be of use.

Chemo cycle 1, Wednesday. Well, what a bloody laugh – of the five hours in the chair, the time was split roughly between rigging up, a bit of instruction, lots of checks/drip swapping, a bit of discomfort, de-rigging, and, my overriding recollection, a hugely inappropriate amount of belly laughs.

The first event threw me. No sooner was I settled in ‘the chair’ than in breezed a well-coiffed, softly-spoken lady dragging a trolley laden with oodles of potions and a CD player (yes, we noted the whale music cd immediately). “Hello,” she purred. “I’m Marion. I’m a complementary therapist and I visit the Oncology ward here every Wednesday. What would you like today?” I was rather hoping for 3 hours of toxic infusion followed by a week of vomiting, I thought, so was keen to learn more. “Let’s do a foot massage,” she volunteered, sensing the utter confusion on my face. Peeling back my foxy surgical stockings (phwoarr!) she glanced over at my husband. “Your turn next! We offer all of these to the carers too!” Somebody shrank back so far in his chair I thought he was going to exit, chair and all, through the wall behind him.

Carers is not a phrase we’ve thought of so far. There’s truth in it for sure, if you think about it, but it’s ‘fits and starts’ caring, not the full and serious responsibility that thousands willingly commit themselves to for lifetimes, unbidden. It also made me feel like a proper patient, which again I’ve not yet considered, or at least only at the precise times when I’m consigned to a chair, bed or operating table being diagnosed, prodded, biopsied, injected, operated on or patched up. When I’m at home, I’m just me.

So the foot massage set the tone for a fairly surreal afternoon. While that was being done, various industrial-looking kit was being wheeled into the room. Two days prior, I’d been fitted with a PICC line – a permanent intravenous tube which enters just above the crook of the elbow, runs inside along a vein up the arm, across the chest and empties into the vena cava chamber by the heart. Think of it as your ‘all you can drink’ delivery mechanism, the purveyor of liquid delights galore, and yours, free, for 18 weeks. So one machine, full of snazzy buttons and surrounded by drip rigs aplenty, was placed on one side. The other, my friends, was something amazing to behold.

The chemo regime prescribed for my particular cancer (as in, the unique features of mine plus the requirements for my physiology and medical history – it’s a very tailored ‘off the shelf’ offering) is called FEC. Indeed, I replied with something similar when it was explained to me by my oncologist. Most breast cancer chemo WILL make you lose your hair. Mine definitely will (see previous entry regarding financial savings in this process! Always an upside!) The oncologist suggested I try a cold cap to reduce the overall loss to 30-50%. It works by (forgive layperson interpretation) freezing the nerve endings in the hair follicles, so once the FEC is deployed to run amok looking for cells to kill, it reaches the head and gets a fairly stern ‘back off’ message. Hair in other places does not escape – so (upside again), add waxing to the financial savings list. It is the F in the triad of drugs called FEC which causes the loss, and it’s not optional.

The cap itself is a ridged plasticky disc with a whacking great pipe coming out the top. The pipe attaches to a machine which delivers water cooled to minus 20 degrees. On top of that goes a hairband around the scalp line and over the ear tops to prevent frostbite. On top of all that lot goes what can only be described as a rugby scrum cap, pulled down as tight as poss and secured with a strap under the chin, to ensure maximum contact between the flow of iced water to the scalp. This squishes your face up (think Les Dawson gurning) and as a result, inhibits the way you speak. “Do I look pretty?”, I spluttered husbandwards from under the garb? Luckily, it limits your hearing too.

It’s said that if you can take the cold for the first 20 mins of the 3.5hrs you have to have it on each time, you’ll be ok. Many can’t, and you can understand why.
“It’s not too bad, not too cold!” I said, British stiff upper lip gurning the words out to the two nurses in front of me. They exchanged a conspiratorial glance. “We haven’t turned it on yet lovely.” Holy shit.

But, ever on the lookout for the upside, I was fairly sure I’d get the call up for the England bench for Saturday’s 6 Nations finale, should Eddie be visiting the ward to cheer us lot up. I certainly had the headgear, and, thanks to drugs and an awful lot of pizza and fish fingers lately, I reckon I’m fast becoming able to cut it in the front row.

You have that on for 30 mins before the infusion starts, just so it can get (quite literally) a head start. I can confirm beyond any doubt that it is accurately named. I reached the magic 20 minute make or break moment and opted to continue. It’s no worse than leaning into the supermarket freezer cabinet and suffering from 3.5hrs of indecision over which ice cream is the best value, after all.

So in the half light, imagine the scene. I’m sat in a chair with the headgear unit, complete with rigid pipe coming out the top; on the other side, I’ve got a mass of tubes plugged from various ports feeding into one main line into my PICC. I look like a cross between an angle-poise lamp and a power supply to a multi-socket iDevice charger. Body confidence on a definite high. Bear in mind I’m laughing my FECing head off throughout. As the infusion starts (saline flush, steroid, anti sickness, pain reliever first) I start drifting off, getting that ‘first drink’ feeling as the coolness of the fluids wash through the veins. Lots of ‘ooh! Ahhh! That’s nice!’ follow. Then it’s time for the toxic threesome. I see a red fluid going down the pipe. This has to be the Malbec. Alas, not so – it’s the hair stripper, the F. No going back!

The following hours pass amazingly fast. There’s always something going on, timer beeps to prompt the fantastic nurses to come and swap the cocktail, do the usual obs on me, tea, sandwiches, cake, PICC checks and – if you read post one, I can only watch Escape to the bloody country on my telly! Result! As it progresses, I get more and more off my face and can’t stop laughing and trying to make jokes. Trouble is, mid gurn-guffaw, my eyes close and I go to sleep. It’s totally hilaire, in a very weird way.

At some point, it’s last orders on the cocktail and I get a saline flush to complete that part of the process. My iDevice charging unit is detached. Not so the angle poise. The timer goes on for a further 1.5hrs. I’m so pissed from the FEC I don’t care, but I must admit, the last hour is just, well, tiresome. Escape to the Country has finished – what was I meant to do? Somehow we pass the time and we play ‘guess how long now!’ with me leaving it longer and longer to find out. We count down the last 60 seconds and boom, the cap fluid gurgles to a halt. In comes the nurse and the cap is gently pulled off to reveal ice crystals on the scalp. I get covered with a warm towel which is so relaxing I  start looking around for Marion and her whale music again. Quick set of obs (my BP has been high throughout) then home we can go, with a rattly goodie-bag of home meds for the coming days.

As this has been so long, I’ll close now. There’s lots more to tell about the days since (we’re just entering day 3 and quite a bit has happened – already been back to hospital once, whoops) but I’ve just taken my temperature and it’s sitting on the danger line so I need to consult my carer on the plan for the next hour. That’s all about neutropenic sepsis, a story for another day.

(*quick update on that – cooling down nicely & having a floppy, sleepy day, carer in attendance. Sorry if I’m slow to reply to messages. Damn – I thought I’d got away with the side effects!!*)

So scrum caps you got, clearly. Red wee? Well, it’s the F in FEC. Had to be really, didn’t it. And it’s instantaneous. Oh yes.

Pip pip for now – keep smiling 🙂

 

 

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