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.
I’m sorry. I had go with a lame, hair loss related pun as the title because starting off with a lame hair loss related pun is THE LAW according to WeeGee today, okay?
Just over six weeks ago I was busy getting my hair cut. Here’s the thing: I don’t like getting my hair cut. I’ve never liked getting my hair cut because it’s weird letting a stranger touch your scalp AND because it’s also weird letting a stranger take a pair or scissors anywhere near your face AND because small talk is crappy enough without being forced to do it with a stranger who is touching your scalp and snapping a pair of scissors right in your face AT THE SAME TIME. But social norms and, to some extent my own vanity, dictate that I get regular hair cuts so, six weeks ago I was sitting in Toni and Guy in Harborough town centre getting tortured my hair cut.
It was a fairly memorable haircut, as far as haircuts go. Just the day before, we’d had confirmation that the lump in my breast was very definitely not harmless and I sat there with the world crashing down around me wondering if really gave a flying fuck whether she took a smidge more off my fringe now or waited until it was dry….
At the time, I didn’t realise how fast things were going to move. I was expecting my treatment to start in the New Year, for one thing, and although I knew there was a fair chance I was going to lose my hair it was a dim and distant prospect that I didn’t really have the brain capacity to think about it. In short, I thought I had at least one more hair cut in me before I had to face up to being a baldy for a bit.
Reader, I was wrong.
My treatment started much sooner than we first thought, and – despite plenty of re-assurances that EC chemotherapy usually takes your hair after the second cycle – 14 days after my first dose my hair gave up the ghost and started falling out. BY THE HANDFUL.
You’d think having your hair fall out by the handful would be pretty traumatic and I expect for lots of people it isincredibly traumatic but for me, it just didn’t feel like that at all – in some ways, the sensation was so foreign it was a source of fascination. And besides, I think I’d had long enough to come to terms with the fact it was going to happen and had been been able to frame it as a ‘small price to pay’ in the main scheme of things. When it actually, for real happened, I approached it like I’ve approached pretty much everything else about my diagnosis and treatment – just another thing that needed to be dealt with. And so, with a little help from Mr Awesome Thing Number Five, I dealt with it and shaved the whole lot off in a ‘well fuck it, I might as well jump before I’m pushed’ kind of a way*
Shout out, of course, to the aforementioned, long suffering and ever patient Mr Awesome Thing Number Five who didn’t so much as bat an eyelid when I told him that our plans for the evening included shaving my hair off. There have been lots of times in the past few months I’ve been struck by how lucky I am to have chosen the right person, but none more than when sitting in our kitchen, wrapped in a shower curtain, with only half a head of hair left wondering out loud if ‘it was too late to change my mind…..’
It’s the strangest thing, having no hair for the first time since you were a baby and it does take a bit of getting used to, not least when you find yourself looking at a TOTAL STRANGER in the mirror first thing. That said, aside from finding it impossible to regulate my temperature, I’m living with being a baldy quite comfortably enough, thank you very much. I suppose I’m helped by the fact that my skull is a reasonably normal and neat shape, my eyebrows and (most of) my eyelashes are hanging on in there like the tiny hairy warriors they are**, I’ve got a decent wig and I quite suit a hat. Most of the time, I look pretty much like myself although every once in a while I do look scarily like my (very definitely baldy) dad.
I don’t want to underplay it. I know for some women, and indeed men, the hairloss side of chemotherapy is gut wrenchingly awful and I understand how it might come to feel like insult added to injury. Personally, I found the grit to park it in the ‘stuff that’s going to happen whether I like it or not’ bay and move on. I’ve long since thought you need to pick your battles in life and right now, with everything I’ve got to face up to, railing against the universe because my hair went and fell out isn’t something I’ve got the time or energy for.
And that’s all I’ve got to say about that.
As usual, I’ll leave you with a song – an old one and a good one, for old times and for good times sake… It’s been my ear worm for days since the veritable Shaun Keavney played it on the wireless radio one afternoon….
Catch up soon. Love you all lots, like Jelly Tots,
*Traditionally, all major decisions in WeeGee land have been preceded by the words ‘fuck it’ and it turns out cancer isn’t going to change any of that.
**The less said about my remaining, unmentioned and unmentionable hair the better. It’s an actual real life mystery what happened to that….
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.