Since last I wrote I have mostly been hanging out at Leicester Royal Infirmary swearing at strangers whilst wearing precisely fifty percent of my underwear. What? It’s not as if anybody said I’d have to give up on my edgy persona or rock and roll lifestyle just because I went and got cancer, did they?
On the face of it, the fourth cycle of chemotherapy went off without incident. I’m pleased to report that the PICC line would have made things slightly easier had the blasted thing not required cleaning before it could be used to actually deliver chemo. I don’t know what to tell you about getting your PICC line cleaned for the first time other than to say it looked all set to be the most painful thing to happen to me this week until two slightly more painful things came along and happened…. That’s how we’re measuring things out this week, by the way, on a scale of ouch to FUCK YOU.
Anyway, once I’d got the initial chemo-hangover out of the way, I settled myself in for a nice game of chemo side-effect bingo. I didn’t quite manage a full house this time around, but I did get the nausea, fatigue, sore feet, mouth ulcers, and Extraordinary Wind ALL AT THE SAME TIME* so that was something.
Breathing is over-rated anyway
One of the things I’ve discovered about chemotherapy is that the range of weird and wonderful things that happen to you and your body in view of it is pretty much never ending.
During cycle one I was ALL OVER IT. I monitored everything, and dutifully recorded it in WeeGee’s Chemo Notebook. I also spent a lot of time panicking: everything that happened to me during the first cycle – from the sickness to the weird itchy eyebrows – felt like a certain sign of impending doom and so I paid attention to it. But we’re at cycle number four now – I’m pretty much an old pro and nothing particularly surprises me any more. And so, when it came to pass that I couldn’t exactly breathe on Tuesday evening, I thought “well blow me, this is new. That’ll be the chemo then….. I’ll just wait and see how I feel in the morning” and took myself to bed.
Anyway, let’s skip the boring bit and cut a long story short: it turns out that not only are you supposed to be able to breathe comfortably when you’re on chemo, it is actively encouraged. And that’s sorta the story of how I came to spend the day in Accident and Emergency on Wednesday…..
To be honest, the less said about Wednesday the better because it was rubbish. In the end, it was a minor drama about nothing much – no blood clots, or heart attacks or collapsed lungs. It took seven hours, two incredibly traumatic blood tests, the CT scan from hell**, at least a million ECGs and a hundred million people poking and prodding me, to confirm that it was just a mild infection with a touch of heartburn from the steroids thrown in for good measure. But it served as a reminder, to me at least, that this is serious: I am, whether I like it or not, more fragile and vulnerable than once I was and I have to make some adjustments for that. I can’t just keep keeping on regardless. Every once in a while I’m going to have to slow down – perhaps even stop – to give myself a chance to catch up with myself. Which is exactly what I’ve been doing since we got home on Wednesday.
God bless the NHS***
While we’re sort of on the subject, now seems as good a time as any for a mahoosive shout out to the NHS.
I’ve spent a lot of time in NHS hospitals since last December and I have nothing but good things to say about the doctors, nurses and other staff who have looked after me so far. If you’ve stepped foot inside an NHS hospital recently, you’ll be under no illusions that there is some woeful underfunding going on but still the standard of care is world class.
Seriously – the NHS is bloody amazing. And that’s all I’ve got to say about that.
Meanwhile in other news
Meanwhile in other news and in celebration of this week finally being over and done with I’ve MADE A WHOLE POT OF TEA ALL TO MYSELF, and I don’t intend moving from my spot on the sofa for quite a long time…..
Told you I was rock and roll….
Nothing else from me today, save that I hope you’re all having a smashing Sunday. I’ll sing you out with a little tune I haven’t heard for a while:
Love you all lots like jelly tots, WeeGee xoxo
*Man, it was laugh a minute here in WeeGee Land that day.
** So traumatic, in fact, that I swore quite a lot and then flat refused to put my bra back on when it was done. Because REBEL.
Afternoon all – Quick warning to begin with in case you’d prefer to sit this one out – there’s a picture of a needle in this post, and another of me hooked up to a machine via a cannula. No blood or guts or anything, but you know…..
Since last I wrote I have mostly been recovering from my third dose of chemotherapy. This means that I’m either nearly half way through, or just over a third of the way through – the chemo leg of the treatment, depending on which way you’d prefer to look at it. Regardless, it is absolutely compulsory for me to say “three down and five to go” as cheerfully as I can at this point so, you know, THREE DOWN AND FIVE TO GO……
Before I started having chemotherapy I hadn’t spent much time thinking about chemotherapy. I mean, I must have thought about it in that casual, passing sense that you think about all kinds of things that you hope will never come to mean anything to you, but I’d never turned my attention to actually, properly thinking about what it was all about. I knew chemotherapy was used to treat cancer, I knew that it made you feel crappy, and I knew it made you lose your hair. The fact that only two of those three things are strictly true is, I guess, a pretty good indication of how little I knew about chemotherapy two months ago….
Here are just some of the things I have learned about chemotherapy so far…..
HOLD THE FRONT PAGE: Chemotherapy isn’t just one thing.
Either this will come as news to you and you’ll be (at best mildly) interested, or you knew it all along and you’ll be left wondering what kind of idiot is in charge here, but one of the first things I learned about chemotherapy is that it isn’t just one catch all thing that they dole out to anyone with a cancer diagnosis. It’s loads of different chemical treatments, used at different times, in different ways, for different things*.
When I thought about chemotherapy before, I guess I pictured poorly looking people hooked up to drips for hours and hours at a time, and in some cases I guess that’s how it goes. But sometimes chemotherapy can be given as tablets or as injections and some intravenous treatments take as little as an hour to deliver. Sometimes chemo is given daily, sometimes weekly, and sometimes at monthly or other intervals. The side effects vary from treatment to treatment and – this is something that perhaps not many people appreciate – not all types of chemotherapy cause hair loss.
For my part, I’m having neo-adjuvant chemotherapy once every 21 days. I’m given a cocktail of drugs** which are particularly effective in stopping breast cancer from growing and spreading. Unfortunately, I do get hooked up to a drip but (for at least the first four doses anyway) the whole thing takes an hour at most and I’m home before I’ve had the chance to wonder what all the fuss was about.
As things stand all of the chemotherapy drugs used to treat breast cancer cause hair loss so I’ve sucked that one up. That said, some NHS trusts offer the use of a ‘cold cap’ which can ether reduce the rate of hair loss or, if you’re lucky, stop it all together. I’ll write more about my decision to give the cold cap a particularly wide berth at some other time but to cut a long story short it just wasn’t for me….
You have to do some of it yourself
One of the things about chemotherapy that I found most surprising was the number of drugs I was given to take in the week after receiving the actual chemo. It had just never occurred to me that there would be more drugs to remember to take at home after the main event. And the less said about the “easy peasy” daily injection the better…..
Chemotherapy isn’t nearly as bad as I thought it would be. Apart from when it is.
Before I started chemotherapy I was prepared for it to be the WORST THING THAT HAD EVER HAPPENED to me bar none. I was convinced that I would be constantly sick and ill, that I would get all of the side effects at the same time, that I’d be pretty much bed bound and that I would be generally and thoroughly miserable. In the end, and for most of the time, none of my worst fears have materialised….
I do feel pretty under par for around four or five days out of every 21 but by and large the side effects, when the have turned up, have so far been reasonably mild and just about manageable. APART FROM WHEN THEY HAVEN’T BEEN MILD OR MANAGEABLE…
I’d guestimate that there have been maybe a dozen hours in each cycle so far where the whole chemo thing has been every bit as bad as I thought it might be – where I thought my head would actually explode from the pain, where I was convinced that my legs couldn’t carry my weight for a second longer, where my skin was crawling off my bones, and I was colder (or interchangeably hotter) than I’d ever been before. Where I’d have sold my granny in a heartbeat if I thought it’d make the waves of sickness stop.
But those dozen or so hours have passed, and as they have passed I’ve forgotten they happened in the first place. I guess when I look at the whole thing in the round I’d say sometimes it’s been totally fucking terrible but most of the time it’s been just about okay.
Before my first chemo dose, the deputy sister*** looked at me, and then looked at my charts and said “it’s going to be fine – you’ll walk this” and I solemnly resolved I was going to hold her to her optimistic promise. And whilst it wouldn’t be true to say this has been a walk in the park thus far, I think overall her assessment was closer to the mark than my THIS IS GOING TO BE THE WORST THING THAT HAS EVER HAPPENED TO ME take on things.
So hats off to her, I guess, and long may it continue.
There’s tired and then there’s chemo tired.
Before I started the treatment everyone was at pains to tell me about how tired I’d be.
“Chemotherapy will make you feel very tired” they said and I was all “yip, yip, tired, yip got that, yip”.
Here’s the thing – no matter how tired they told me I was going to be, or how much I thought I understood what being tired was all about – there was nothing that could have prepared me for how tired I sometimes am.
Chemo tired is like a double turbo charged kind of tired, the likes of which I had never imagined before in my life. It hits you quite suddenly, and demands that you stop and rest IMMEDIATELY whether it is altogether convenient or not. Sometimes I find myself wondering if I’ll be able to make it to both the supermarket and the chemist in one trip. Other times I wonder if I’ll make it up the stairs and back down again. And then there are the times I don’t have the energy to wonder at all and I send Mr Awesome Thing Number Five on whatever errand is required….
There’s a reason they call them cycles
I have chemo every 21 days because the cells that are actively dividing on day one will not be the same cells that are actively dividing 21 days later. You have to switch it around, you see, so you catch each and every one of the pesky little buggers in the act and then blast them to kingdom come. This is a cycle and by the time I’m done I’ll have had eight of them****
During those 21 days EVERYTHING repeats itself in exactly the same way, at the same time, in a perfect cycle. That’s why they call it a cycle I guess.
Day one: I get the chemo and then five hours later I start to feel like death made lukewarm. I spend a restless night concentrating very, very hard on not being sick
Days two and three: I have a mild chemo hangover but by and large I am surprised by how okay I feel. I tend to fall asleep every time I sit down
Days four – seven: I AM NOT WELL AND THIS IS CRAP AND I HAVE HAD ENOUGH OF THIS AND I’D PREFER IT IF WE DIDN’T DO ANY MORE CHEMOTHERAPY THANKS VERY MUCH.
Days eight to 11 – The steroids really start to kick in. I want to eat all of the things and I am prone to crying if I cannot eat all the things
Days 11-14 – The steroids start to wear off and I become simultaneously less hangry and more reasonable.
Days 14-21: Chemo is a dim and distant memory for the most part but I can’t promise I won’t need a nap in the afternoon.
And then the whole thing starts all over again.
They don’t mention all of the side effects
Sure, they’ll tell you about the side effects that might kill you because – you know – you need to REALLY watch out for those. And yeah, they’ll tell you about the side effects that you won’t be able to miss like your hair falling out, or being so tired you need a nap after putting your socks on. But there’s a whole load of other side effects they don’t mention, I guess because they don’t happen to everyone, or maybe because in the main scheme of things, you probably don’t need to know in advance.
Look, all I’m saying is that nobody told me my nose hairs were going to fall out, or AND THIS IS THE CRUCIAL BIT that when they did, if I pinched my nostrils together THEY WOULD STAY STUCK TOGETHER either forever, or until I forcibly blow them apart (whichever comes soonest).
Pretty gross, I admit it, but still I can’t stop boasting about it. I mean, it’s a time limited party trick if nothing else, right?!
Anyway. That’s all from me folks. As is traditional, I’ll leave you with a song to wash it all down with. Another old one because when you are nearly forty, you realise that the old ones really are the very best:
Love you lots like jelly tots,
*That’s my non-technical hot take on chemotherapy. If you want a more professional run down, check out what Macmillan have to say here.
**Sadly, it’s not a rock and roll kinda cocktail of drugs
***The deputy chemo ward sister is secretly my favourite chemo nurse
****Technically I’ll have had four of one thing and then four of another
I’m sorry. I had go with a lame, hair loss related pun as the title because starting off with a lame hair loss related pun is THE LAW according to WeeGee today, okay?
Just over six weeks ago I was busy getting my hair cut. Here’s the thing: I don’t like getting my hair cut. I’ve never liked getting my hair cut because it’s weird letting a stranger touch your scalp AND because it’s also weird letting a stranger take a pair or scissors anywhere near your face AND because small talk is crappy enough without being forced to do it with a stranger who is touching your scalp and snapping a pair of scissors right in your face AT THE SAME TIME. But social norms and, to some extent my own vanity, dictate that I get regular hair cuts so, six weeks ago I was sitting in Toni and Guy in Harborough town centre getting tortured my hair cut.
It was a fairly memorable haircut, as far as haircuts go. Just the day before, we’d had confirmation that the lump in my breast was very definitely not harmless and I sat there with the world crashing down around me wondering if really gave a flying fuck whether she took a smidge more off my fringe now or waited until it was dry….
At the time, I didn’t realise how fast things were going to move. I was expecting my treatment to start in the New Year, for one thing, and although I knew there was a fair chance I was going to lose my hair it was a dim and distant prospect that I didn’t really have the brain capacity to think about it. In short, I thought I had at least one more hair cut in me before I had to face up to being a baldy for a bit.
Reader, I was wrong.
My treatment started much sooner than we first thought, and – despite plenty of re-assurances that EC chemotherapy usually takes your hair after the second cycle – 14 days after my first dose my hair gave up the ghost and started falling out. BY THE HANDFUL.
You’d think having your hair fall out by the handful would be pretty traumatic and I expect for lots of people it isincredibly traumatic but for me, it just didn’t feel like that at all – in some ways, the sensation was so foreign it was a source of fascination. And besides, I think I’d had long enough to come to terms with the fact it was going to happen and had been been able to frame it as a ‘small price to pay’ in the main scheme of things. When it actually, for real happened, I approached it like I’ve approached pretty much everything else about my diagnosis and treatment – just another thing that needed to be dealt with. And so, with a little help from Mr Awesome Thing Number Five, I dealt with it and shaved the whole lot off in a ‘well fuck it, I might as well jump before I’m pushed’ kind of a way*
Shout out, of course, to the aforementioned, long suffering and ever patient Mr Awesome Thing Number Five who didn’t so much as bat an eyelid when I told him that our plans for the evening included shaving my hair off. There have been lots of times in the past few months I’ve been struck by how lucky I am to have chosen the right person, but none more than when sitting in our kitchen, wrapped in a shower curtain, with only half a head of hair left wondering out loud if ‘it was too late to change my mind…..’
It’s the strangest thing, having no hair for the first time since you were a baby and it does take a bit of getting used to, not least when you find yourself looking at a TOTAL STRANGER in the mirror first thing. That said, aside from finding it impossible to regulate my temperature, I’m living with being a baldy quite comfortably enough, thank you very much. I suppose I’m helped by the fact that my skull is a reasonably normal and neat shape, my eyebrows and (most of) my eyelashes are hanging on in there like the tiny hairy warriors they are**, I’ve got a decent wig and I quite suit a hat. Most of the time, I look pretty much like myself although every once in a while I do look scarily like my (very definitely baldy) dad.
I don’t want to underplay it. I know for some women, and indeed men, the hairloss side of chemotherapy is gut wrenchingly awful and I understand how it might come to feel like insult added to injury. Personally, I found the grit to park it in the ‘stuff that’s going to happen whether I like it or not’ bay and move on. I’ve long since thought you need to pick your battles in life and right now, with everything I’ve got to face up to, railing against the universe because my hair went and fell out isn’t something I’ve got the time or energy for.
And that’s all I’ve got to say about that.
As usual, I’ll leave you with a song – an old one and a good one, for old times and for good times sake… It’s been my ear worm for days since the veritable Shaun Keavney played it on the wireless radio one afternoon….
Catch up soon. Love you all lots, like Jelly Tots,
*Traditionally, all major decisions in WeeGee land have been preceded by the words ‘fuck it’ and it turns out cancer isn’t going to change any of that.
**The less said about my remaining, unmentioned and unmentionable hair the better. It’s an actual real life mystery what happened to that….