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
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.
Hello – it’s me, WeeGee! I wonder if there is anybody out there any more?! I suppose I’m about to find out…
I’ve been trying to write this post for quite a while: it’s one of those “I don’t know where to start” kind of posts y’see. There’s always the beginning – I suppose I could start there except I’m not too sure where the beginning would actually be. Or I could start by telling you what I’ve been up to since I last wrote, but that was a long time ago and a lot of life has happened since then, and most of it isn’t really relevant to the story any way. Or I could start with the news I came here to share – just come right out and say it, like, because when you’ve got something to say, nine times out of ten you might as well just come right out and say it*.
So here’s the thing. On the 6th December last year I was diagnosed with breast cancer, or if we want to get particular about it, invasive ductal carcinoma of no special type. The cancer is grade two, stage 2b and for those of you who really want to get to the nub of it it’s neither hormone nor protein receptive. In the main scheme of things, it’s a fairly fancy pants kind of cancer. Thankfully there is no distant metastasis (cancer lingo for ‘it hasn’t spread beyond the attached lymph nodes’) and the prognosis is, at this stage, good.
I don’t know what to tell you about getting a cancer diagnosis. On the one hand its pretty straightforward. You go along to the hospital, a bunch of doctors do a bunch of tests and then you go back the next week and they break the news to you very gently indeed. They tell you what you need to know and send you away with your treatment plan, a SERIOUSLY MASSIVE supply of leaflets, and a life changing diagnosis. The life changing diagnosis bit is the bit that isn’t quite so straightforward….
Since I got my diagnosis I have cried precisely three times, which is intereresting because I’m pretty sure that’s actually less than I would have cried in my ordinary life without the diagnosis. I’ve been every shade of angry under the sun, I’ve been hopeless, sad, overwhelmed and so very sick and tired of the whole damn thing. Every so often I’ve forgotten about it and then I’ve been surprised because how do you go and forget about something that came along and changed EVERYTHING?
In life there aren’t many things that can’t be undone. Usually when things go wrong, you can put them right, learn whatever you need to learn and then move on. Cancer isn’t like that. You can’t wish it away or reason with it. Once the cells have gone rogue it really doesn’t matter that you think they are a bunch of disloyal little bastards. Once you have cancer, that’s it – you are in it up to your neck and you just have to get your head on straight and get on with it. Even if it really does feel like another fine mess that you’ve gotten yourself into….
Still, all is not lost and there’s still plenty of WeeGee awesomeness around. I’ve gotten pretty good at putting one foot in front of the other over the years and I’m putting my skills in that area to very good use at the moment. I’m doing my best to get used to living with cancer** and I’m going to write about it here – I feel sure that writing about it will help me through it, and if it doesn’t it’ll give me something to do with the ridiculous amount of time I have on my hands all of a sudden.
Treatment wise there is a long old road ahead of me. I’m currently two cycles in to eight cycles worth of chemotherapy***. After that there will be surgery and after that, most likely another six months worth of radiotherapy. None of this is how I expected to spend my fortieth year on planet Earth, and I’m still getting used to how I feel about it all. That said, there is every hope that the treatment plan will lead to ‘a complete metabolic response’ (more cancer lingo, basically meaning CURED) and, I’ve always said “Hope is Important”****
In the time honoured tradition, I thought I’d leave you with a song. It doesn’t mean anything in particular, its just that I like it and I thought it would be a nice little bit of normal to round things off….
Love you all lots, like jelly tots, WeeGee xoxoxox
* There are of course some things you absolutley should NOT just come right out and say but that’s a matter for your own judgement
** For the time being at least
***The first one was on Christmas Eve, so that was really, like, festive. Ho, fucking, ho.
**** I wasn’t the first person to say it. I pinched it off a band I love of old.
This post marks Eating Disorder Awareness Week and, as such, it’s necessarily about eating disorders. It discusses my own experience of living with, and recovering from, an eating disorder. It also touches upon self-harm and the diet industry.
If you are recovering from an eating disorder, or are vulnerable to disordered eating you may prefer to sit this one out. No worries – I’ll see you in the next post xx
Oh – and it’s also a very LONG post. So now you’re armed with all of the facts, let us begin.
I lived with an eating disorder from my teens until my mid-twenties and those years were, without any shadow of a doubt, the darkest I have lived through. It started, as I suppose these things often do, innocently enough: I was a teenager, I was growing and I didn’t like it. So I went on a diet.
Of course, now I know that it was a little more complicated than that. Thousands upon thousands of people go on diets every year and for most of them it doesn’t end in the horror and chaos that I brought to bear upon myself. For me, there were other factors in the mix. I was unhappy, I was angry, I felt I had no control. I was also quiet, conscientious and prone to perfectionism. Add to that the tendency to obsess and, well, safe to say, I was the perfect eating disorder storm.
It didn’t happen over night – it crept up on me, slowly but surely, until one day it was too big for me to stop: it was a juggernaut smashing its way through my whole life. On the face of it, it was a numbers game because I soon discovered that everything, including my own worth, could be counted. For the longest time, I valued myself in calories, pounds and ounces and BMI; the lower the better.
Beyond the numbers there was nothing but horror in my head. I hated myself with such conviction that I started to hurt myself – in part as punishment and in part to prove to myself that I was capable of feeling something. Of course, what I really wanted to prove was simply that I was still alive – because for years, I felt dead. I know how dramatic that sounds, but in the end that’s what it came down to – my eating disorder took the feelings that go with being alive and replaced them with an all encompassing sense of nothingness. When I think of myself back then the living dead is the thing that most vividly comes to mind.
It took the best part of ten years to get that particular monkey off my back, although I would be lying if I said I don’t still struggle from time to time. Mostly it’s a fleeting thought that threatens to burn through everything before I stamp it out but I live in constant fear that one day, I won’t be able to extinguish it. To this day, I can still recite the calorific content of pretty much any food you can think of and find myself tallying up my meals as if its second nature. I still sometimes feel a little flutter of excitement when I realise I’m hungry because somewhere in my brain being hungry still equals good work. I still struggle to eat in front of strangers, and I still have the strong urge to a) always leave food on my plate and b) conceal what I leave. Habits, as they say, a minute to make, a lifetime to break….
Finding a path back to a healthy relationship with food is the most difficult thing I have ever had to do. The urge to restrict my calorie intake was so powerful, the cycle of denial and reward so overwhelming, the desire to disappear so all encompassing, that there were many times I wondered if I was capable of swimming to the shore at all.
Above all else, I struggled with the conflicting messages from the people who were supporting me, and what I saw as the world at large. In every sphere of my life I came across people who were on calorie-controlled diets, and the biggest diet message at the time was low fat, low fat, low fat. There has been much debate about the role in the media in the prevalence of eating disorders, and it isn’t one I am going to be able to solve here. All I can say is that, for me personally, the never-ending dichotomy about how certain food groups are ‘bad’ (when they were the very food groups I was being encouraged to eat), and about certain body shapes being ‘beautiful’ (when I was – as I saw it – not allowed to pursue those body shapes) hindered my recovery.
In the end, of course, I made peace with myself. I came to understand that nutrition was a fairly straightforward balance of proteins, fats, carbohydrates, vitamins and minerals – and that the kinds of diets you find in lifestyle magazines were by and large, bullshit. I came to understand that healthy humans come in all kinds of shapes and sizes and that in the end, the size of other humans was really none of my concern. I made a promise to myself, a promise that I keep to this day. I promised that each day, I would do my best to nourish my body properly and, if I ever found myself unable to nourish my body properly, I would seek help.
As far as mantras go, I’m pretty pleased with it.
I still come across people who are dieting on a near daily basis, and that, as I’ve said, is none of my concern. Sometimes, though, it worries me. The diet industry seems so much more pervasive than it did twenty years ago, the messages so much more mainstream. The notion still persists that some food is good, and some food is bad. Fat is frowned upon and thin is the Holy Grail. More often than not, the nutritional science is sketchy at best, and to me, some of the advice seems to have been lifted straight from the eating disorder playbook (The 5:2 diet, for example). The constant pursuit of ‘thin’ over health makes less sense to me the further away from my eating disorder I get.
I can’t help wonder if the diet industry is designed to keep people on constant diets that don’t work, because they don’t work if you see what I mean. For some people, that will be endlessly frustrating. For others it will perpetuate negative messages about good food, bad food, sins, fat bodies, thin bodies, and fasting. And for some, it is more damaging than you can begin to imagine.
Eating disorders are serious psychiatric conditions that are difficult to beat. Research suggests that 46% of anorexia patients make a full recovery, 33% improve and 20% remain chronically ill; for bulimia patients these figures are 45%, 27% and 23% respectively*. I find it so very sad that more than half of the people affected by the two most common eating disorders won’t be able to escape the terrible clutch it has over them. At the same time, it seems clear that it isn’t all bad: if you approach the research from a slightly different angle, it suggests that 80% of anorexia and bulimia patients go on to make a full, or at least a partial, recovery.
Recovering from an eating disorder is completely possible – I’m a living, breathing example of that – but it isn’t easy and for some, despite their best efforts, it remains beyond their reach. Eating disorders are complex conditions, with a varied range of contributory factors, issues and challenges for each patient. Against this backdrop it is difficult to fully understand why some people who are affected by eating disorders find recovery so difficult to achieve.
As with so many things, early intervention seems to be key. In that regard, I was incredibly fortunate. I received swift referral to specialist support services and, benefited from having a sympathetic and knowledgeable family doctor. Years later, when I found myself struggling to cope with some significant changes in my life I started to worry about relapsing, and again, the best support network the NHS had to offer seemed to swing into action around me again. Sadly, that isn’t always the case which is why B-eat, the eating disorder charity, are focusing on getting people into treatment as early as possible during Eating Disorders Awareness Week.
You can read more about the work B-eat do, and why early intervention is so important on their website at the following link: