Introducing the new normal: may contain nuts. Or not.

Good evening all! I join you live from my boudoir, languishing seductively in freshly-laundered surgical stockings, with Deep Heat patches strapped to my back, a hot water bottle on my front, and a half pint of soluble laxative in my hand. Well, Thursday is the new Friday, and there’s no way I’m missing out on that!

So, what of the last eight days?

It’s not all angle poises and foot massages you know – there is much going on when you’re ‘out’, as opposed to when you’re ‘in’, having ‘it.’ Don’t get me wrong – we’ve been back ‘in’ a fair few times since FEC-fest #1 last week, for routine things. But a lot of the time, we’re out, and have been busy feeling our way up what’s been a very interesting learning curve. Sitting comfortably?

Once you’re back at home after infusion day, the main guidance is to be vigilant to anything which is not ‘normal’ for you.

Trouble is, how do we know, on day 1, what defines ‘normal’ in a normality we’ve not yet met?

I’d say all we have to go on by way of benchmark is the last couple of weeks, which for me, has been the time between being told I’m having chemo, and actually starting it. And we all know how I’ve spent most of that time – see the 15th March post for the fascinating detail!

With that in mind, let’s look at a scenario of the ‘normal’ test. Say I’d got home from FEC-fest and was feeling rough. I alert the massage-phobic carer. He rings the special number we’ve been given.

“Hi, she’s had her first chemo today. I’m a bit worried about her”

OK Sir. Is she breathing OK? Able to communicate with you?

“She’s communicating alright”

Able to give clear instruction?
“Hell yeah”

Sir, I’d like you to check – and this is important: is she able to use Facebook?

“Yup, she’s Liking away as I speak”

OK Sir. Let’s try another angle. Would you say the emojis she’s selecting from the Like sub-menu are an accurate representation of her true thoughts on the post?

“Hang on, let me check. Hmm…she’s just put a WOW where I’d have sworn she’d pick a HaHa.”

OK, I’m going to put you on hold Sir, I need to have a word with my supervisor.

[..Greensleeves la la la la la, la la la la la, la la la la la la, Greensl…]

OK Sir. There’s nothing to worry about – please stay calm. I want you to listen very carefully. How many episodes of Escape to the Country has she watched today?

“Er…one and a bit. She turned it off just before they revealed the Mystery House in the second one.”

OK Sir – we’d like you to bring her in immediately.

So there we go – baseline set. We’re good.

It’s not long before the first real test occurs. I’m lying in bed the morning after my first date with FEC, trying to remember where the party had been, exactly who had clubbed me over the head with what kind of blunt instrument, and frankly, if FEC had been the perfect gentleman he’d made himself out to be.

I get up to go to the bathroom. I pass a mirror, and notice a funny, yellow lady in it. On closer inspection, this turns out to be me. Thinking on my feet, I check the Farrow & Ball chart. Yep, it’s 6.30am, and I’m rocking Pale Hound (0071). That’s OK – may as well get myself ready for Spring. But I have to concede that yellow is a new one on me. Orange – dear god no – my faithful friend! For most of my adult life in fact, being a repeat foundation and bronzer offender. Dear oh dear. But yellow?

I’m due ‘in’ later that day for a bone marrow injection so I resolve to mention it then.

About 11am, I get a call from the unit to check I’m well enough to go in for the jab. My Onc nurse asks how I’m feeling generally. “Pretty good thanks! Oh – except I think I’m a tiny bit yellow.”

“Would you like to come in immediately please?”

No drama, all sorted – tests done, drugs given, jab jabbed and I’m back to Pink Ground (0202) by the afternoon. Learning point noted: yellow is not a good normal in my new normal. Fine! Tick!

The next little adventure involves my PICC line. Apparently, I’m an oozer (consonant missing, say I!). The line is supposed to be flushed with saline and re-dressed once a week, which is adequate for most normal people – but, even in the four days between fitting, FECing and jabbing, my dressing is blood-sodden. It gets re-done on Thursday, but by 9.30pm Sunday night, it’s a bit of mess. I raise it with my carer. Neither of us know how much blood is too much. We sit watching it. We’re pretty sure it’s watching us back. The dressing has slid away and we can see the line, at its entry point into me, flobbing and pulsating like some kind of amoebic anatomy specimen in Frankenstein’s laboratory. Nice. Off we trot to the local hospital to get it checked. That is a story which did not end perhaps in the best way possible, but no matter – the next day, back in the unit, we find out that we did the right thing. Blood is ok, lots of it; but an exposed line is most certainly not. Into the ‘Fine!’ book – learning learned – tick!

The only thing we don’t have to road-test for normality is temperature – I have a safe range, and if it’s out of that, we know exactly what to do. It’s the only nee-naw situation which could ever happen and it’s very unlikely (Such a shame though! So many shades of uniform to align with the F&B chart! Any advance on Calke Green (034)?)

Other than that, there is roughly NO point staring at the side effect list, because I’m pretty sure you could imagine yourself into any of them if you tried hard enough. Think about it – we’ve all been there. It’s like consulting Dr Google if you’ve got a headache; within five minutes you’ve symptomed yourself up as a virulent case of Pellagra, that 17th century disease last seen in Western Europe somewhere around the 1867 mark.

So, I could spend an afternoon staring at the list, thus:

“By the power of almighty FEC, in all your illustrious being, I summon you, ‘horizontal ridges in the fingernails, often discoloured’….show yourself, oh ‘metallic or chalky taste in the mouth’…come unto me, ‘dry or ulcerated tongue, difficulty swallowing’…”

Or, alternatively, you could just shove the list in a drawer, which we have. We’re too busy laughing – there’s a flow to go with and it’s too much fun to miss.  I came up to bed in hysterics earlier, reflecting upon another funny (well, it is now!) incident which happened today. It explains why I am so adorned (see para 1, 8000 screens ago – soz about that) this evening. You’re going to have to wait to hear about that one, but the carer just wants you to know: “they’ll need to select a HaHa when that one goes live”.

Pip pip for now – sleep tight.

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 🙂

 

 

Sent from my iPad

Who’s going to get the chicken?

Every morning lately, I wake up at 2am. Not just a wake up, grunt, snore, turn over, pass wind (like summer meadows, my husband lies) – but a full on, ‘right, what are we doing today?’ situation. It’s fine for me (I cleaned the microwave at 2.38am = bonus) but then I get to round about now, and think it’s bedtime.

Usually, I potter around all morning yawning my head off, then hit the sofa at 2pm and watch Escape to the Country back to back until 5. (I’m finding that they usually go for the mystery house. And that if they have the audacity not to like the new build bungalow/chocolate box cottage they’d stipulated they’d never consider, the presenter gets a bit arsey with them). I need to get out more.

I’m going out today alright. Out for a 9 mile drive to an oncology ward, to start my first cycle of chemo. Irritatingly, the time slot clashes horribly with my Escape to the Country viewing schedule which, frankly, is insult to injury.

I’m not in the least bit bothered about this folks, as my nearest and dearest will testify.  It’s my means to the oncologist’s end of reducing the risk of the breast cancer I had diagnosed in January recurring. Bring it on is what I say! I’ve read so much about it; people’s experiences, the side effects, the misery of it all – but what I’ve learned over the weeks since January is that every cancer case is different and every individual is, well, just that. I intend to smash it, but if I can’t, I’ll just push it around a bit! You don’t know what you don’t know – and you won’t know til you try it. So let’s crack on.

Brave cancer battler I am not. Cancer is not a ‘battle’ because it does not involve a fair distribution of might or power. Basically it runs the show, and the sooner you realise that, the better. I’m not saying that a positive mental attitude doesn’t help – it’s very handy, and is as near clinically proven as you like to improve the outlook. After the mild shock of diagnosis (in that, as a former chain smoker, former baby oil clad sunbather and having never been a stranger to a good bottle of red, breast cancer was almost devastating to my reputation) I just put my head down, my boobs into the hands of those who know what best to do with them and have said yes to everything.

why am I blogging it? Selfish to the core (see nearest and dearest, above). It’s helpful to get it out in the open. I’m thinking these next few months will be challenging enough without the added stress of pretending I don’t have it. It’ll help if I bump into neighbours in the co-op when I’ve got straggly hair. It’ll stop me having to lie when people ask, ‘how are you?’. The truth is, I’m extremely well – it was a weed in the garden, someone was kind enough to get it out and now we’re just going back over the area with Round Up to make sure it’s gone. It’s blissfully simple, which suits me down to the ground.

In fact, the first worry I had when I was told that chemo was needed, ten days ago, was the title of this blog. I don’t care about this little blip in my life, but trust me, if I can’t make a roast on a Sunday, the metamorphosis from nice to grumpy is pretty fast and very ugly. Got that sorted – one enormous chicken bought, in the fridge and ready for the weekend.

Sorry for the long opener – inevitably these will be much briefer as time goes on.

I’ll ramble again soon. Just off for a water-only hairwash – I’m almost salivating at the money I’ll save over the coming months!

See you soon. Team Carnaghan has this!