Okay – so all things considered, March didn’t exactly go according to plan.
The PICC line (yes, I’m still banging on about that) knocked me for six. And then I got sick. And then I realised that instead of four more visits to the chemotherapy suite I was going to have to get my head around another twelve. And then AS IF THAT WASN’T QUITE ENOUGH ALREADY THANK YOU VERY MUCH the first dose of the new chemotherapy went and knocked the stuffing right out of me.
By this time last week I was well and truly fed up with the whole blimmin’ thing. I’d been experiencing pretty spectacular post Taxol chemo pain in my bones and muscles for four days straight and it was starting to take it’s toll. I had a thumping headache, I couldn’t sleep for all the steroids, could barely think straight through the chemo fog, and although I was trying my best to keep my pecker up, to be quite honest with you, no matter what I did, my pecker was just not for upping. I tried everything, including watching Inside the Potato Waffle Factory which I had been saving for this very kind of doomy gloomy emergency and even that didn’t snap me out of it….
It was dire straits here in WeeGee Land, man.
Actual. Dire. Staits.
And then things changed….
I’ve long since subscribed to the notion that things have a habit of turning up at the right time, or perhaps, put another way, that things have a habit of working out in the end. Over the years I’ve come to an understanding with myself that when the chips (or waffles) are down – which they are going to be from time to time – I just have to find a way to sit it out because eventually something new will turn up: a new way to feel, or a new thing to think about, or a whole new direction to go in. Or this amazing picture drawn and indeed signed by Richard Osman (AKA my Pointless Friend) and used as an actual question on an actual episode of my actual favourite quiz show, Pointless.
How cool is that?
The backstory is worth filling in here.
First up, I have a long standing borderline obsession with Pointless for all kinds of reasons but mostly because I’m competitive when it comes to quiz shows and I’m quite good at Pointless. I once scored THREE POINTLESS ANSWERS in a ‘studio albums by REM’ Pointless Final question and it remains, to this day, one of my proudest achievements in life.
Secondly, the picture filled my heart with such gladness when I saw it on the telly box – it made me properly laugh out loud, not least because the phrase ‘we’re going to need a bigger boat’ is oft used here in WeeGee Land when things are in the process of going tits up. And I especially loved that the little man went with the calm and gentle refrain of ‘oh no’ in the face of such awful impending watery/sharky/bitey/fuckitty one-armed doom.
Finally, Mr Awesome Thing Number Five made it happen just to cheer me up. I didn’t ask him to source me a copy of the funny Jaws picture from Pointless, he just remembered how much it had amused me. It turns out he wrote to the Pointless team while we were holed up in A&E that day, which makes it just so super sweet. Yet again, I am reminded that, when it came to choosing my people, I did a pretty good job…..
It’s goodbye from me
So yeah, March wasn’t quite the month I wanted it to be but it had it’s moments. And it’s April now anyway and I’ve every confidence things will be on the up and up all the way from here on in…. The tree at the front of our new house sprung into blossom what seems like overnight and that feels like a good thing. A good sign, you know, or if not a sign, just something pretty to look at for the next few weeks. And that’ll do me.
I suppose the moral of the story is that it doesn’t take much to cheer a WeeGee up. Or maybe that a little gesture can go an awful long way. That picture ABSOLUTELY made my day and it didn’t cost anything but time and effort on the part of the Mr and the people he wrote to. Perhaps what I’m really trying to say is that people, in general, are generally nice…..
I’ll play you out with a song, as usual. Well. Sorta.
Hello, good afternoon and welcome back to WeeGee Land!
I’m sorry about the radio silence recently. I hadn’t forgotten about you or anything like that, it’s just that I was quite busy being a busy bee, and when I wasn’t busy being a busy bee I was busy being asleep. What can I say? Getting pumped full of cytotoxic chemicals on a regular basis makes you helluva sleepy.
The last time I blogged there had been a bit of a blot on my “marching through chemo like a badass” copybook but FEAR NOT that’s all over and done with and things are pretty much back on an even keel. I took a couple of days out to put myself back together and then, when I was all put back together, I set sail again: I got back to work, and back to my life, and whether I like it or not* back to the whole chemo routine. Some days it feels like things have changed beyond all recognition since my diagnosis, but mostly, if I stop and think about it, it’s still just me trying to keep all the plates spinning and doing a passable job….
When is halfway not HALFWAY?
You’ll no doubt remember the excited fuss I made when I got to the halfway point of the chemotherapy? It’s a funny story really, because, well, yeah – that might have been a bit premature. It depends which way you look at it y’see – because it turns out there’s more than one way to count to half way. I suppose now might be a good time to mention that maths never really was my strong suit…..
When I started chemo I knew I would be having eight cycles, each lasting three weeks. I also knew that these eight cycles would be made up of four cycles of EC chemo, and then another four cycles of Taxol/Carbo. Fine, I thought – that’s all nice and clear, right?
What I hadn’t anticipated was that an EC cycle would look like four times worth of this:
Day 1: treatment (epirubicin/cyclophosphamide)
Days 2-21: rest
Day 1: repeat
But that a Taxol/Carbo cycle would look like this four times over:
Day 1: treatment (paclitaxel/carboplatin)
Day 2-7: rest
Day 8: treatment (paclitaxel)
Days 9-14: rest
Day 15: treatment (paclitaxel)
Days 16-21 rest
Day 1: repeat
Or, to put it another way, for the first four cycles I had to rock up at the hospital every three weeks, but for the second four cycles they’re going to need me to show up every week. As in Every. Single. Week. For TWELVE weeks.
So that’ll be fun…..
It was a bit of a blow, coming as it did, on the back of the broken veins/PICC line stuff and the day trip to A&E but, hey, I had a WHOLE day to get my head around it before I was sitting in the chemotherapy suite getting the second-half-but-only-if-you-count-weeks-not-treatments underway.
Nevermind, eh? I’ve got two under my belt already and I’ve started a new countdown so – all together now – TWO DOWN TEN TO GO…..
The Lewis Foundation
Truth told, I was feeling a bit fed up when I turned up for the first of the weekly sessions, but on the day I was properly cheered to receive a sweet gift from The Lewis Foundation – a charity working here in Leicester, Northampton and Kettering to deliver free gifts to people receiving chemotherapy in local hospitals.
Small charities like the Lewis Foundation make such an important difference to people’s daily lives. Like most people, I’ve a lot of time for all of the cancer charities, but the big two (Macmillan and Cancer Research) are the two that crop up most often when you’re in a position to actually donate your hard earned cash. For my own part, I’ll keep on donating to those big charities when the opportunity arises but I’ll also make a point of seeking out these kinds of smaller, up-close-and-personal charities in the future too, because I’ve seen and experienced the very real, personal difference they can and do make.
The nicer side of chemo
I’d be lying if I tried to convince you that chemo was anything other than completely and utterly boring, but there are a couple of up-sides.
Like having a seemingly endless supply of spring flowers to find vessels for….
And the lovely, quirky gifts that make you proper laugh out loud, lift your heart and come to mean the world to you
Meanwhile in other news….
Meanwhile in other news, the Brexit shambles shambles along then, doesn’t it?! I understand that some folk glued their bum cheeks to a glass panel in Parliament earlier this evening whilst the MPs were busy trying to make their minds up about how we should next be forced to die of national mortal embarrassment. So, you know, that’s where we’ve got to with that…..
Anyhoo – it was always going to be a short post this evening. I’ve got a strange mixture of chemo brain fog and wordy block going on at the moment but I thought if I forced myself to sit and write through it I might find a way back to more regular posts. I’m not sure if it has worked or not yet. I guess we’ll find out in the next day or so – watch this space!
To finish up, have a song, why don’t you? I’ll bid you farewell and catch you again soon.
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.
Since last I wrote I have mostly been sitting in the February sunshine feeling conflicted. I’ve been feeling conflicted because on the one hand there is NO WAY it should be this warm in the UK in February, but on the other hand this was my office for three whole days this week and I can’t quite bring myself to complain about it.
The PICC line doomy gloomies
The eagle eyed amongst you might have picked up on a certain doomy-gloominess lurking in the corners of my last post and there’s no use denying it – I was feeling a little bit sorry for myself the last time we spoke. Between you and I, the whole PICC line thing had bothered me more than it reasonably should have. Just lately, you see, things have a habit of sneaking up on me and catching me off guard by mattering an awful lot more than I expected them too. That’s what happened with the PICC line I guess, it ambushed me with it’s own sense of importance.
I’ve spent a lot of time over the past couple of days wondering why I felt such a strong sense of resistance to delaying the treatment so I could get a PICC line and coming up with a list of pros and cons.
Here are the pros:
Having the PICC line will make the next twelve weeks worth of chemo considerably easier for me
Having a PICC line will protect my veins and give me back some mobility in my arms.
A delay of four days will make no practical difference to the outcome of my treatment
And here are the cons:
Having a PICC line is a constant and visible reminder that there is something wrong with me
And that, right there, is the rub, isn’t it? Having a PICC line is a constant and visible reminder that there is something wrong with me. Most of the time, I don’t feel like there’s anything wrong with me at all, so I’m loathe to look like there’s something wrong with me. On the one hand, it’s just pride, with perhaps a little bit of vanity mixed in. But on the other it feels a bit more vital than that – because as serious as cancer is, I’m not willing to let it in to my life any more than I absolutely have to – I suppose it has taken me a little while to find a way to make space for the PICC line emotionally because it marked a significant change in how things were going for me, and, if I’m honest, it felt like a defeat even though I know that it wasn’t one at all. Above all else, it felt like admitting that maybe, just maybe, there really is something wrong with me…
Anyway – the PICC line is in and there’s no going back. I’m pretty much over it now, although I’d still prefer it IF NOBODY MENTIONED IT. And that’s all I’ve got to say about that…..
Does this chump think I am goddam ill or something?
Every three weeks I have a pre-chemo appointment with the oncologist. He’s a nice chap – mercifully older than me* with a no nonsense attitude and a habit of holding your gaze just slightly too long. He’s a tiny bit awkward and I like him either because of or in spite of it. He wants to know the same things each time I see him – how I’m feeling, what my symptoms have been like, whether I’ve had any sickness, or dizziness, or trips/slips/fall, or weight loss, or weight gain, mouth issues, or pain, or bruising, or bleeding or yada-yada-yada….
They feel like questions designed for someone else entirely. I answer him as best as I can** and, of course, I’m perfectly polite about it, but I can’t help wondering if the poor chap has taken leave of his senses because it does rather strike me that he seems to be under the impression that I am a sick person. Didn’t he notice me bouncing into the office filled full of vim and vigour and life? Can’t he see I’m FINE? Doesn’t he know I won’t let this beat me? I mean sure, the chemo knocks the stuffing out of me for a week or so, and I get a bit tired at times, and my arms have been giving me a bit of gip of late – but apart from that, I really am fine***. Okay, I’ve got cancer but it’s not as if I’m sitting here dying or anything is it?
This is really happening
For a week or so after my diagnosis I entertained the notion that maybe there had been some kind of terrible mix up – that the whole thing was a case of mistaken identity and I had accidentally been given someone else’s awful news. Any day now, I thought, someone would realise what had happened and it would all be okay – for me, at least. Eventually, of course, I had to let go of the fantasy scenarios and accept that the nightmare wasn’t going to go up in a little puff of smoke and disappear.
This is DEFINITELY happening, even if it doesn’t feel altogether real. There is DEFINITELY something the matter with me, even if you won’t hear me admitting it very often. And I am DEFINITELY still doing my best to live as well as I can with cancer even if I do feel a bit like an imposter who has been marching around in a stranger’s life for the past fifteen weeks.
Since my diagnosis, I’ve spoken to quite a lot of people who are undergoing cancer treatment. I think I’ve mentioned before how different they’ve all been, how at first glance, they’ve only had their cancer diagnoses in common – but actually, when you reflect a little further, we all have something else in common. We are all, in one way or another, completely fucking bewildered. There is no manual for navigating your way through cancer treatment and nobody plans to get cancer, so when it comes you find you are woefully under-prepared for it. And what else is there to do when you find yourself there, but march around in a life that feels like somebody else’s entirely, putting one foot in front of the other, and doing your best to look like you know what you’re doing with the closest approximation of a smile on your face as you can manage? So that’s what you do. That’s what I’m doing. I’m not making a bad job of it so far, in the main scheme of things.
Meanwhile in other news
Meanwhile in other news, I was very impressed with the excellent level professionalism on display in Harborough Superdrug this morning. I bought 43 hair bobbles**** even though I CLEARLY HAVEN’T GOT ANY HAIR, and the young lass on the till didn’t even blink…..
That’s all from me today, save to say that I hope you’re all happy and shiny and peopley….. Here’s a song to play us out. It’s an old one, as usual and it has no particular relevance, as usual….
Love you all lots, like loads and loads of jelly tots,
*I’m nearly forty – doctors are getting younger and I’m just going to have to get used to that. But when you’ve got breast cancer, the doctor wants to see the affected area whenever you meet so, you know, under the circumstances, it really does help that my doctor is a grown-up, relative to me and my hopeless childishness….
**None of the above, nosey parker
*** I’m reminded of a guy from the heady days of my undergraduate studies who insisted that he didn’t really get hang-overs. He said he just got a headache, and a bit of nausea, and felt really tired…..
Since last I wrote I have mostly been busy trying to keep my mind off two sore arms and one minor setback. Settle in and I’ll explain….
The first thing you need to know is that I’ve got really tiny veins. And I’m not just saying that to show off. Every time I meet someone who is tasked with getting a blood sample from me*, I have to open with “Oh hai! I’m WeeGee and I’ve got really, really (really) tiny veins” and then they don’t believe me until they actually SEE the veins at which point there’s usually a small sigh before the hunt for a teeny tiny needle begins…..
Here’s the thing though. If you start pumping really powerful, corrosive chemotherapy chemicals through really really (really) tiny veins at three weekly intervals, it turns out they get damaged and start to grumble about it. The veins in my left arm started complaining after chemo round one, then the right arm joined in after round two and by round three they were both screaming and shouting about it like bloody loonies. I’m making light of it a bit, but between you and I it’s not actually funny at all. As things stand, both of my arms hurt like buggery and the left one doesn’t exactly work. I’m assured this is a known side effect of the chemo I’m on, if not exactly one of the more common ones. But hey – at least it can’t be said that there’s anything common about WeeGee……
Anyway – to solve all of this, the oncologist decided we’d give up on the really, really (really) tiny veins and insert a PICC line so we can go straight for the heavy duty veins. The hope is that if we go for the big guns, they might not complain about the toxic chemicals quite so much but unfortunately, to get the PICC line in, we’ve had to delay the next round of chemotherapy by FOUR WHOLE DAYS. And that’s the story of how I came to be sitting here chatting with you today, instead of getting my fourth round of chemotherapy done as planned…..
I’m not over the moon that my treatment has been delayed. For me, the fourth round of chemotherapy marks the half way point and that had come to matter an awful lot to me in recent weeks. I kept thinking that by the time I got the fourth one out of the way, I’d have have climbed all the way up to the top of the mountain and would soon be on my way back down the other side. Halfway is a milestone – it’s progress of sorts – it’s something I can tick off the list. I know it’s only four days, and I know it could be a whole lot worse but the HALFWAY point mattered and I’m annoyed that we’re not doing it today. I was all set to smash my way through it.
On reflection, chemotherapy so far has felt like a series of right decisions I wish I hadn’t had to make – the PICC line is just another of those. Of course I don’t want a permanent, visible reminder of what’s going on with my health attached to my body. Of course I don’t want to be faffing about with a district nurses in and out of the house all the time because, I mean, DO THEY THINK I AM ILL OR SOMETHING? And of course I don’t want something as simple as jumping in the shower becoming a military-fucking-operation. But – and this is an important factor to consider – I’d also quite like to have a pair of working arms when I get better. That’s what I got to choose from – the PICC line, or lifelong mobility issues. In the end, I brooded about it for a day or two, did a bit of swearing in my head and then I got over myself, sucked it up and moved on because what else are you supposed to do anyway? Just don’t mention the PICC line and we’ll be absolutely fine…..
Meanwhile in other news, the sun came out over Market Harborough this weekend. I know that climate wise it isn’t exactly great news that we’re all walking about in t-shirts in February but I do like the sunshine, and I do like the spring. I made a point of getting myself out and about in it because who knows how long it will last, or how many more weekends like that we’ll see this year? I was lucky that the sunshine fell on my third weekend and I was determined to make the most of it with a fairly decent walk in the Northamptonshire countryside. The fresh air and exercise did me the world of good and if I was tucked up in bed by 9pm as a result then it was absolutely worth it….
That’s all from me for today so I’ll leave you with a bit of a song for you to sing along to and bid you farewell.
By the time a woman reaches a certain age, her childlessness starts to require some kind of explanation. I’m not saying it’s right, but somehow, if you make it past your 35th birthday without any little people on your books, you have to include it in the story you tell about yourself. You might be childless by accident, or by design. Or maybe you put your career (or some other aspect of your life) first. It might be that you didn’t quite meet the right person at the right time, or that you are still trying. Sometimes, there is tragedy and heartache lurking behind the surface. Always, though, one way or another you feel obliged to find a way to make it a part of your story….
For my own part I am a childless woman of a certain age, and whilst I suppose it is as much a part of my story as anything else it isn’t really the one I came here to tell. It is enough only to say that I am 39 years old and I haven’t had any children yet, which is really just to say that before my cancer diagnosis, having children had neither been completely ruled out, nor completely ruled in. It was, despite my advanced years, something that might have, or might not have happened in the future – or to put it another way altogether, I still, just about, had options. Cancer has changed all of that.
Before my treatment started I was referred to a fertility specialist with a view to keeping my options open. I understand now that I was lucky to even get the referral in the first place – research suggests that around half of younger women diagnosed with breast cancer have no discussions with their healthcare professionals about their fertility preservation options at all. Given all my circumstances, I was eligible for IVF and, to be honest, that felt like a tiny little silver lining. Not so much because of what it meant directly, but because it also meant that there was a world where I got to the end of this and then somehow ended up back in exactly the same place as where I started – with options to choose from. It wasn’t just about fertility, in fact, it was every bit as much about FUTURE as anything else. And at the time future was a very important notion to me indeed….
Alas, eligibility was not the only consideration. Once my staging scans came back my oncologist became very insistent that we started the chemotherapy IMMEDIATELY. Not, as you would think because the cancer had spread, but because it hadn’t. Triple negative breast cancer, you see, is a sneaky fucker of a cancer and, once it spreads your chances of seeing it off take a bit of a nosedive. As things stood, my chemo was due to start in January. On the basis of the staging scan the oncologist wanted to bring the chemo forward by three weeks, to December. The IVF would have meant delaying the treatment by eight weeks, even as an emergency case.
On paper, at least, I had a choice. I could have rolled the dice, taken my chances and opted to wait for the IVF. But very early on I’d decided to take the view that the doctors and nurses looking after my case were the experts and that I would do whatever they told me to do, no matter how hard. And so, if a doctor of some considerable standing and experience in the field of oncology couldn’t countenance delaying the start of my treatment, then neither could I. My whimsy about IVF being about the prospect of a future faded away. IVF wasn’t going to deliver me a future, it was the chemotherapy that was going to do that.
In the end it was the easiest most impossibly hard decision in the world. My chemotherapy started on Christmas eve, and the rest, as they say, is history….
After the third cycle of chemo my ovaries started waving a little white flag and who knows what’ll happen over the next five treatments. Perhaps they’ll be back for a final swan song when I’m better, but perhaps they won’t. Perhaps I’ll have the same options that I had before any of this happened, or perhaps I’ll have a whole new set of options to choose from. Perhaps my future will go in one direction, or perhaps it will go in another – I don’t mind so much. It’s the future bit that I’m interested in and any direction will do me just fine…..
I might as well wrap it all up with a song, because that’s the way we usually do things.
Here, have this one. It’s one of my all time favourites, and actually, seems quite apt…..
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
Since last I wrote I have mostly been reflecting on being young, fit and healthy. Let me explain.
I first heard the phrase ‘young fit and healthy’ being applied to me at my initial Breast Care Clinic referral appointment. The context was that even though I was only 39, and even though I didn’t have any significant risk factors for breast cancer, and even though I was otherwise fit and well, all the indications were that the lump in my right breast was suspicious nevertheless.
It was a phrase I would hear again and again in the weeks that followed and I came to resent it. It made me furious. It made me want to shout and scream and rage because if I was so young fit and healthy WHAT IN THE NAME OF ALL THE HOLY THINGS was I doing sitting in an oncologists office? Why did I need a CT scan? Why did I need blood test after blood test after blood test? What was all this chemotherapy nonsense about?
Every time a doctor or nurse commented on how young fit and healthy I was it just reminded me what a bum deal I thought I had been dealt and I raged all the more.
I raged because despite breast cancer being the UK’s most common cancer, with over 55,000 women being diagnosed every year, only 2,200 of them (or 4 percent of the total) are aged 39 or younger like me. I raged because triple negative breast cancer is similarly uncommon – only around 15 percent of breast cancers are ‘triple negative’. I raged because it wasn’t fair, because it wasn’t my fault and because there was nothing I could do about it.
And then, of course, I stopped raging. The thing about raging is that it you have to stop eventually – either you run out of rage, or you run out of things to rage against. I suppose it stared to occur to me that, quite aside from everything else, it really wasn’t doing any good being furious with myself for having cancer, or for being young fit and healthy with it.
Here’s the thing. I am, at least as far as cancer goes, quite young. I also am reasonably fit and reasonably healthy and whilst you will NEVER hear me say that anything about my situation is lucky, I do have to concede that there are scenarios where things could have been a whole lot worse for me. The fact that I am young gives me a bright future to keep my eye on. The fact that I am fit gives me reserves to call on as I make my way through the more gruelling side effects of chemotherapy. The fact that I am healthy means we’ve been able to pursue the optimum, most likely to save my life treatment, (basically kick this thing super long and double hard with chemo before surgery) because I am healthy enough to tolerate it.
I’m a big believer in looking on the bright side – not in the impossibly optimistic sense, just in the sense that there’s always a tiny chink of light. I’ve got cancer and that is all kinds of rubbish but I’m young, fit and healthy and so far, I’m living with it well. And that isn’t rubbish at all.
I’ll leave you, as always, with a little song. Just because…
Since last I wrote cancer has been in the news again, or specifically, the terminology we use to refer to people with cancer has been in the news. The poll itself makes for interesting reading, although I must admit that my overwhelming feeling in response to it all is that I don’t much care what people call me so long as it’s broadly polite….
I don’t mean to be glib. It’s important that we find ways to be better at talking to one another about cancer and it’s important that people with cancer get to shape the way their stories get told. Some of us will feel like we are going into battle, but others will completely resent the implication: and that’s absolutely fine.
My view, for what it’s worth, is that if you find your self talking about, or indeed to someone with cancer – take the language they use as your lead and if you can’t do that be polite and kind and you really won’t go far wrong.
Here’s the thing about having cancer: WE KNOW YOU DON’T KNOW WHAT TO SAY. Just say something. It’s all good, man.