Since last I wrote I have mostly been being in hospital with, and I shit you not, a bit of a cold. I mean, I’ve always tended towards the overly dramatic but hot-footing it to the hospital with a runny nose? That’s expert level drama queen for you that is.
Of course, I’m making light of it, because that’s what I do, but my temperature peaked at 38.9 and I felt pretty poorly and fed up for a while. The good news is it was NHS to the rescue once again, and with the help of some IV antibiotics, I was home and tucked up in my own bed recovering 48 hours later.
Spending time on the acute oncology ward was a pretty sobering experience and I was reminded of the ‘young, fit and healthy’ tag that has followed be around since my diagnosis: I was the youngest patient by a couple of decades and, on a ward of six people, the only one who didn’t have at least one other serious health condition to contend with as well. Surprisingly perhaps, it was also a much more cheerful place than you might imagine. I met some truly amazing women during my short stay – some of them well into their eighties and all of them facing up to cancer with some considerable aplomb. I hope that when I am old I am half as wise and every bit as brave and forthright as the women I met this weekend. I’ll certainly think of them often as I make my way through my treatment and beyond.
April is the cruellest month
I suppose what I’m really writing to say is that April didn’t quite get off to the flying start I was hoping for….
Before the high temperature/infection fiasco and just when you thought it was safe to get back in the water, my third weekly chemo was called off because I failed my blood test even though I am a swot and I HAVE NEVER FAILED A TEST IN MY LIFE. To be honest, it didn’t come as much of a surprise because I’d been feeling completely whacked since starting the Carbo/Taxol regime a couple of weeks ago. Anyway, the blood results showed elevated ALP levels – possibly indicating that my liver is not coping particularly well with new chemo drugs. Huzzah…..
We’ve done a new set of bloods this morning to see what’s what now I’ve had a week or so away from the chemo and I’m meeting with the oncologist tomorrow to discuss the plan of action. It may well be that the high ALP levels last week were a bit of an outlier and that everything is fine, or we may need to reduce the dose, or perhaps even rethink the treatment plan altogether. I’m hoping for one of the first two, not least because when it comes to triple negative breast cancer, the EC/Carbo/Taxol combination really is gold standard. In other areas of the country there are women with triple negative diagnoses fighting like lionesses to get access to this particular combination of drugs, so it doesn’t feel like something I want to give up on lightly. That said, liver failure doesn’t sound like much fun to me, so we’ll wait and see what the experts have got to say.
Take a break
All things considered I’m in pretty good spirits so there’s no need to panic about that. The doomy gloomies that were starting to gather a couple of weeks ago seem to have blown over and all is calm and easy going here in WeeGee land again. I’ve taken a couple of days out of work to get myself fully better and to keep hold of the sense of perspective that has settled around me. I love my job, and i need to feel as useful as I can during my treatment – but my job can be taxing and stressful at times. The thing is, being an awesome Information Governance Manager can’t be my number one priority right now because that spot is already occupied by taking good care of myself and being as well as I possibly can be. I’m lucky, I have an amazing employer and even more amazing line manager – I have the luxury of being able to take my foot off the gas every once in a while and right now, I think I’m due a bit of a break.
Meanwhile in other news
Meanwhile in other news I’ve finally signed up for the creative writing class I’ve been meaning to get myself involved with since I went to the KU Big Read event featuring Gail Honeyman last October. I loved ‘Eleanor Oliphant is completely fine‘ so very much, and I found Gail’s talk really inspiring. I promised myself that by the time I was 40 this August I would at least have made a start on writing a novel. Step one is the University of Strathclyde’s Blaze course which I start next Monday so, you know, watch this space…..
Nothing else from me today, save to say that if you could keep your fingers crossed for my chemo actually going ahead this week I’ll love you even more than I already do.
I’ll leave you with a tune, which granted, is fairly miserable but it’s also really pretty in its own way, and it’s been my ear worm ALL WEEK so I can’t think of another to share anyway…..
Love you all lots, like lots and lots of jelly tots,
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 being busy writing to my Member of Parliament. Spare a thought for the dude if you will. I mean, it isn’t exactly his fault WeeGee moved to his constituency and then wound up with loads of time on her hands at exactly the same time that the Brexit shit started to REALLY hit the fan…..
Don’t panic though! I’m not about to get all political on you, well, not really anyway. My friends and family get quite enough of that in real life and besides, it’s not as if we’re going to solve Brexit here in one blog post, are we? We just have to accept that some people think it’s all a bit shit, and some people are wrong think it’s a bloody marvellous idea. Regardless of the rows we’ve had over the years and short of a MAJOR* occurrence here in the UK, the fact remains that in less than a month it looks like the UK is set to leave the European Union. The only question, it would seem, is whether we leave in an orderly fashion (whereby we agree to the agreement that the UK Government has already agreed to) or in a disorderly fashion (whereby we do not agree to the agreement that the UK Government has already agreed to). And it’s the prospect of a disorderly Brexit that has led me to seek urgent assurances from my MP. Usually when I write to my MP I do it because I’m a bit of a busy body and I listen to too much Radio 4, but this time it really is personal.
It is still not immediately clear what, if any, plans the Government have made to ensure the continuity of supply of LIFE-SAVING cancer drugs in the event of a disorderly Brexit. As far as the publicly available information goes, the position appears to be “if” everybody does what the government have asked them to do, there “shouldn’t” be a problem. The thing is, I’m pretty reliant on those life saving cancer drugs at the moment – if and shouldn’t don’t really cut it for me and quite frankly, they shouldn’t cut it for the Government either.
I was, and indeed am, a staunch remainer – I’ve never made any secret of my views on this matter. But at this late stage, I am willing to accept that we probably do now have to leave the EU even though I wish it wasn’t so.
But here’s the thing – if we really do have to do this – and I might just about accept we do – WE DON’T HAVE TO DO IT UNTIL AND UNLESS OUR GOVERNMENT HAVE MADE EACH AND EVERY SINGLE ONE OF THE PLANS AND ARRANGEMENTS REQUIRED TO TO KEEP US ALL SAFE, FED, AND IDEALLY ALIVE. That we have anyone in Government (or on the opposition benches for that matter) who would even contemplate doing anything otherwise is the biggest political failure, travesty and tragedy of my lifetime.
And that – as well as this – Letter to my MP – is all I’ve got to say about that……
Here’s a song to play us out. I do so love it and it seemed appropriate…..
Love you all lots, like jelly tots,
*A collective ‘coming to our fucking senses’ might just about do it
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.
Since last I wrote I have mostly been busy trying to compile a list of All The Perks Of Having Chemotherapy.
I’m not going to lie – it’s a short list……
All of the Perks of Having Chemotherapy: a handy list
First there’s naps: naps go to the top of the list because when you are having chemo you’re actively encouraged to take LOADS of them AND nobody gets to call you a lazy so-and-so when you take to your bed at three o’clock in the afternoon.
Then there’s ice-cream: turns out, if you feel sick and ill all day and then suddenly decide you fancy some ice-cream you’ll have no trouble convincing someone to go to the shop to buy ALL OF THE ICE-CREAM for you.
You don’t need to get your hair cut for AGES.
If, like me, you’ve got a cat you’ll probably be able to get yourself out of litter tray duty on account of all the germs and that – although to be honest, the more I think about this one, the more I think it might be less of a perk and more of a simple re-distribution of domestic duties…..
If you have psoriasis chemotherapy pretty much cures it in one dose and less than 48 hours
You have to go to some lengths for this one but if you can manage to end up with compromised veins you can legitimately refuse to do any hoovering, potentially for the whole rest of forever, because – and I believe this is the correct medical term – your arm is fucked*
If you are super lucky, you’ll manage to bag yourself a place on a Look Good Feel Better Workshop
Look Good Feel Better (LGFB)
Look Good Feel Better is an international charity working to boost the physical and emotional well being of men, women and young adults undergoing cancer treatment. The focus of their work is helping people to better cope with the more visible side effects of cancer treatment.
What LGFB do
LGFB run workshops at more than 100 hospitals in the UK. The workshops give people undergoing cancer treatment the opportunity to spend time together chatting, drinking tea and sampling skin-care and make-up products. The workshops are led by professionals who guide you through all kinds of important subjects like making the most of your chemo complexion, and re-drawing your eyebrows.
As well as the workshops, there are a whole load of online tutorials on their website. There’s also the ‘confidence kit‘ which you can get hold of via their website and is full of tips and tricks.
My experience of LGFB
My breast care nurse told me about LGFB the day I was diagnosed with breast cancer. She told me it was a pampering session, that I’d get a little goody bag of cosmetics to try and that it really helped people feel better about their treatment. She gave me a leaflet about it and, I suspect noting the distant how-the-fuck-can-this-be-happening, I’m-not-actually-taking-any-of-this-in look in my eye, wrote “THIS IS IMPORTANT” on the front.
I had to wait a little while for a spot on one of the workshops as they tend to be oversubscribed but I eventually rocked up to the Macmillan Advice Centre at the Leicester Royal Infirmary at 10am this morning, very much looking forward to the session.
There were seven other women at the workshop and every single one of them was amazing. I don’t suppose we had very much in common really, apart from the obvious – we were all ages, all walks of lives, different ethnicities and we’d come from at least three different counties: whenever I find myself in a group of people with cancer, I do find there is a very visual reminder that cancer doesn’t discriminate. This morning as different as we were, we were united – we were united by our diagnosis, our experiences, our eyebrow anxiety, our fear of the future, our fondness for one particular chemo nurse…..
The session was led by three make-up artists. They were super knowledgeable, really friendly and incredibly kind. They created a safe and supportive environment and made an excellent cup of tea at half time. The goody bag was fairly substantial, with some recognisable brands in mostly neutral, useable colours.
I enjoyed the worksop – my eyebrows looked better when I left than when I arrived and from here on in I will be a tad bolder with my eyeliner. More than that though, I enjoyed spending time with the other women. I loved hearing their stories, I loved being in their company, and I loved having a very real reminder that I am not alone in this – there are so very many people in the same boat, sailing along with me.
Why LGFB matters
Coming to terms with a cancer diagnosis is difficult. It’s a confusing and frightening time, and more often than not, the treatment gets underway before the patient has even started to process what’s happening or what it means.
In my experience, you find yourself catapulted into something that you’re not ready for, and that you couldn’t stop even if you wanted to. Your head is all over the place and then, before you know it and on top of everything else there’s a stranger looking back at you in the mirror, and you feel very different even though you know you are sitting there in your own skin. I’ve had days where I’ve wondered if I could face leaving the house because I didn’t feel or look like myself. I’ve had days where I’ve had to really psych myself up to get over the door because I felt so sick of facing the world looking like a cancer patient.
Getting through cancer treatment is as much about what’s going on in your head as it is about coping with the physical aspects of the treatment. LGFB helps you to get and keep your head on straight – it’s a tiny dose of confidence, a little boost of self esteem, and two hours of not thinking about anything other than how fabulous you look.
How you can help
LGFB is a charity, and as such, welcome donations and fundraisers. If you are looking to help people with cancer, LGFB is an excellent cause – they make a small but very real and important difference to the experience people undergoing cancer treatment have. More information about fundraising for LGFB is published on their website.
If marathons and tough mudders aren’t your thing, but makeup is you might also consider investing in some LGFB makeup brushes. I can personally testify as to to the quality and can’t think of a much easier way to support a great charity…..
Meanwhile in other news
Meanwhile in other news this time next week I will be exactly half way through the chemotherapy leg of the treatment which feels like a very important milestone indeed…..
As usual, we’re winding up with a song because that’s what we do, and because routines are important. It’s another old one I’m afraid, but that, I guess, is what happens when you get old…..
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