Posted in About today, Living with cancer

Whatever tomorrow brings

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….

Gryff
Me, when asked if I have any kids: “no, but I’ve got a cat – look, here is a picture…..”

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….

Merry christmas
Jolly holly Christmas post-chemo meds….

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…..

 

Love you all lots like Jelly Tots.

WeeGee xoxoxo

 

 

Posted in About today, Living with cancer

Some of the important things I have learned about chemotherapy (so far)

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……

Cycle 3 car
Our ‘three down, five to go’ faces

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.

Plugged in baby
Plugged in, baby.

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…..

Takeaway
The chemo takeaway
Injection
You want me to put it WHERE?!

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.

Make it 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.

Tired

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?!

Party trick

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,

WeeGee xoxoxo

 

*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

 

 

Posted in About today, Living with cancer

Young, fit and healthy

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?

chemo suite

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.

future
Look to the future – the t-shirt and bright pink lipstick have become my cancer appointment uniform

I’ll leave you, as always, with a little song. Just because…

 

Love you lots, like jelly tots.

 

WeeGee xoxoxo

Posted in About today, Living with cancer

Call me what you want

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.

Love you lots like Jelly Tots,

WeeGee xoxox

Posted in Living with cancer

Hair today, gone tomorrow…

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.

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 is incredibly 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…..’

gl cg haircut
Choose your people carefully. One day, you might need to let them loose on your noggin with a set of clippers……

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.

baldy gail
She’s a baldy. She’s a baldy. She’s a baldy. (only people who REALLY know me are allowed to chant this at me…..)

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,

WeeGee xoxoxo

 

 

*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….

Posted in About today, Living with cancer

Another fine mess

Hello – it’s me, WeeGee! I wonder if there is anybody out there any more?! I suppose I’m about to find out…

i'm back copy

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….

all of the leaflets
ALL OF THE LEAFLETS

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….

another fine mess three

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.

 

 

Posted in About today

Eating Disorder Awareness Week, 2017

Before we begin

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.

living-dead

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.

Pleased.gif

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:

https://www.b-eat.co.uk/support-us/eating-disorder-awareness-week

If, like me, you understand how important this work is, you might like to consider signing the petition calling on government to ensure eating disorder patients are treated without delay:

https://campaigning.b-eat.co.uk/page/6557/petition/1

That’s all from me folks. So long, and thanks for all the fish……

Love you lots like jelly tots,

WeeGee xoxox

 

* https://www.b-eat.co.uk/about-beat/media-centre/information-and-statistics-about-eating-disorders [accessed 02/03/2016]

Posted in About today, Moving forwards, Politics, Reasons to be cheerful

What’s that coming over the hill?

I don’t know if anyone else has noticed, but there’s this petulant man-child who thinks he’s the President of The United States of America ALL OVER the Internet. I think he might actually be COMPLETELY nuts, as in “Maybe someone ought to stage an intervention before this shit gets out of hand” kind of nuts….

nuts

There are many things I don’t understand about Donald Trump. His hair, for one thing, is a constant source of wonderment. I mean, HOW THE ACTUAL FUCK does a dude who gives every appearance of being vanity personified – and who has all the money he professes to have – try on all of the hairpieces in the million dollar hairpiece shop and decide THIS is the look he’s going with:

I know it’s a cheap shot and I know nobody would dream of commenting on his appearance if he happened to be a female politician. The thing is, my concern is less about his appearance and more about what his hair tells me about his judgement. I truly don’t know what to make of his daily decision to leave the house with something that might actually be alive sitting angrily atop his head. There is one thing I know for certain, though: that wig was ABSOLUTELY NOT chosen by a rational man….

overcomb

At the end of the day Donald Trump is not my President, so Donald Trump isn’t really any of my business.

ASIDE: If I were an American he’d be ‘hashtag-not-my-President’ but as things stand, he is ACTUALLY not my President. Politically speaking, this is the only advantage I can find to being British at the moment….

The trouble, of course, is that the President of The United States has long been regarded as the de-facto leader of the ‘Free World’ and I think I might belong to that, whatever it is, if it still exists.

Look. All I’m saying is that if aliens landed tomorrow and I was forced to introduce that stinking sack of bile as Our Leader I’d be FUCKING mortified on behalf of the whole of humanity. To be honest, when the aliens do land tomorrow (What? Aliens land every day. ALTERNATIVE FACTS ARE FACTS TOO, deal with it, snowflake.) we might be better off taking the little buggers to a different Deplorable Leader – one who can string a sentence together and who perhaps isn’t completely devoid of any of the qualities that usually stop other people, and presumably aliens, from wanting to punch you in your face until you stop saying words.

IXYpi.gif

——

I suppose the thing with Donald Trump is that he demands a reaction. It doesn’t really matter whether you loathe him or you love him, one way or another you can’t help but respond to his strange dog whistle. Maybe the best thing to do is to choose not to respond to the hatred. I fear it may be too late for that this time but I’ll tell you what, next time an odious dickhead in a toupee turns up wanting to be the boss of anything I vote we ignore the fuck right out of it……

My response to Trump is, as you can see, wholly negative. I don’t get it and if I spend time trying to get it I start to feel like nothing will ever be right again – at which point I have to stop trying to get it for the sake of my sanity. I can’t understand how someone so graceless, so nasty, so utterly vacuous and so completely incapable of articulating even the most basic of arguments has become so fucking powerful. I JUST DON’T GET IT. I mean I get that some voters feel disillusioned and disenfranchised and I get that disillusioned and disenfranchised voters will (and indeed should) seek to effect change but I don’t get why anyone would seek anything in the darkest of dark places that is President Trump’s mind.

ASIDE: Incidentally, I feel much the same about Nigel Farage and his nationalist cronies here in the UK, although thankfully, as things stand, they are ‘just’ all of the above without any of the power. Farage, for all his bluster and airtime, is still nothing more than the shitty little tail that wagged Britain’s dog straight out of the European Union…..

straight-outta

The question I’ve been asking myself, for months now is WHAT IN THE NAME OF FUCK are we supposed to do? How do you stand up for what you know to be right when what is wrong is so much louder than anything you can come up with? How do you make the world the best it can be when the worst of it is at the fore?

How do you stop monsters in their tracks? 

Of course, I don’t know the answer yet, not really, but I do know that there’s no good trying to do it all at once: How do you eat an elephant? Bite by bite. How do you make the world better? A little at a time.

Personally, I know I need to be careful. I need to be mindful that my mental health can be fragile, that I have a tendency to obsess and that I am easily crushed, defeated and overwhelmed. I need to remember that refusing to stand idly by is not the same thing as taking on the whole world. 

And so, I’ll draw my lines in the sand. I’ll figure out what matters the most, as far as I can, and I’ll figure out how I direct my energies towards making even the smallest of differences. My time, my money, my words, my actions: these are the things I have and I’ll use them. I’ll write to the dudes in suits, I’ll smile at strangers on trains, I’ll march, I’ll agitate, I’ll volunteer, I’ll send charities what I can – in cash and in kind. In short, I’ll take my anger and I’ll use it. 
sign-1

I won’t sit down. And I won’t shut up. Most of all, I’ll turn up for the task, every single day. Bite by bite and a little at a time, the monsters will be quietened. 

Love you all lots, like Jelly Tots.

WeeGee xoxoxo

Posted in About today

The C word

It’s okay – it’s not a post about that C word, because, you know, I’m rarely that vulgar…. This is a post about the other C word: CHRISTMAS. It’s the most wonderful time of the year, right? Everyone loves it, right? Ho ho ho and it’s Chriiiiiiiiiiistmaaaaas. (A la Slade*).

For my own part I like this time of the year well enough, although I wouldn’t put myself down as one of those hard-core Christmas enthusiasts. Truth told, I’m happy to take it or leave it – I like buying presents, I like Dr Who, and I like being able to drink alcohol before twelve noon but apart from that, I like all of the other days of the year just as much as I like Christmas day.

drinking

I’ve been alive for 38 Christmases, and (of those I can recall) only three of them have been shitty. That’s a fairly good return, although PLEASE GOD can you not ask me to work out the percentages. Nobody should have to work out percentages during the season of goodwill…….

percent

My first shitty Christmas was 1996. I’ll never forget it, and to be honest, when I think about Christmas now my thoughts are still clouded by Christmas 1996** Christmas 1996 was, for me, Eating Disorder Central. I spent months worrying about how I would pick my way through the calorific reality that was coming my way, and then I spent months atoning for it. I sometimes wonder how different my life might have been, had it not been for Christmas 1996, but then I remember that there’s no good blaming your whole life on a few sausage rolls and I move on. Again.

My next shitty Christmas was my first year in Surbiton. That was the Christmas when everything I thought I knew changed IN A HEART BEAT and I found myself alone even though I thought I would never have to be alone again. It was also the Christmas I moved house and got tonsillitis all AT THE SAME FUCKING TIME. That year, it snowed four days before Christmas and I remember that because four days before Christmas I still hadn’t bought a single gift which meant I had to hike my way to Kingston in FIFTY feet of snow FOUR DAYS BEFORE CHRISTMAS and buy gifts for the people I loved even though I just wished I would drown in a puddle of melted snow, without the people I loved ever having to know. That was a pretty shitty Christmas…..

To this day, I still can’t explain my third shitty Christmas, unless being mental is an adequate explanation. Somehow I knew that Christmas was approaching but somehow I also didn’t give a shit about it. I stuck my head in the sand – as I’m wont to do – only conceding that Christmas was going to happen regardless a week before it actually did. It was around about this point that I shoved a tree up, flung some tinsel in its general direction and took to wearing a jumper with a quirky penguin on because, you know, quirky penguins are FESTIVE. Ho, ho and fucking ho.

I don’t think this Christmas is going to be a particularly shitty Christmas. I’m looking forward to it well enough (it’s that thing I said about drinking alcohol at noon): my tree is up, my gifts are bought and I’ll get to spend time with the people I care about. Most importantly of all, from my point of view, my head is in a reasonable place – I’m calm and collected and not especially mental. I head into Christmas knowing that a) I’m going to survive and that b) surviving isn’t going to be a problem.

Still – I keep thinking about those people who might be where I was during my three shitty Christmases: people who might be afraid, or alone, or just off the scale mental for no good reason. I keep thinking how difficult it is to find a way through at this time of the year, and I keep thinking how much I wish I could tell those people, who feel the way I once did, that however hopeless the hopeless things they are dealing with feel – there is hope to be found at the end of the hopelessness. You just have to hold on tight.

Christmas brings so many expectations with it, and it’s easy to get carried away with the idea that everything should be perfect for that one day. At Christmas all of your insecurities should somehow melt away, and you should be with everybody you love, and you should feel miraculously joyful and everything should be completely perfect BECAUSE CHRISTMAS. Here’s what I know: ‘because Christmas’ isn’t the answer to all of the challenges you were facing before Christmas. Here’s what I also know – ‘because Christmas’ doesn’t make anything worse, or more intolerable, or more unbearable than it might have been either.

Christmas is tough for so many people, for so many different reasons. But Christmas will be over soon enough, and the reasons make sense in the end. Tomorrow will come. Until then hope is important, shout up if you need help, and I’ll see you in the new year.

Oh. And ho, ho ho……

mofo

Love you lots like jelly tots

WeeGee xxx

*Wait – is it Slade? I’m starting to wonder if it might be Wizard…..

**Can everybody please be too polite to mention that 1996 was TWENTY years ago, thanks.

 

Posted in About today

Today came around. Again….

It always rains in WeeGee land on 19th September.

To be fair, I don’t know if it actually always rains, or if my memory just thinks it always rains, but it very definitely rained today and since that fits with my pre-conceived notions of what today should feel like I’m going to go with it.

It’s been fifteen years since the 19th September first meant anything to me. Fifteen years is a long time. It’s so long that I can’t properly remember the person I was back then. It’s so long ago that my friends are different, that my life is different, and that whatever it was I hoped and dreamed of at the time is long forgotten and given up on. I’m a grown up now – it’s all behind me – none of what mattered then matters now. Life moves on, people change, you stop looking for the big answers and start dealing with the little questions one by one.

Today shouldn’t mean anything to me. It’s an anniversary of something that only I remember and that has no meaningful impact on my life now. Like I said, life moves on.

Every year, the 19th September comes around. I dread it for weeks, and then it comes around and before I know it, it’s over with. I try to mark it, but I never manage to mark it well enough because…. Well, because – how do you mark a thing you want to remember but don’t want to acknowledge out loud?

As it goes, the best I can do is to withdraw into my own head for the day. All I can do is make today about today – I can let my thoughts rest on things I don’t otherwise let them rest on – I can stop for a moment and I can let everything that has happened in the last 15 years settle around me.

I’ll wake up tomorrow and today will be over with. That’s the beauty of it, isn’t it? Today doesn’t matter because tomorrow is on the way.

What you’ve lost is less important than what you have. Hope is important.

Love you all lots, like jelly tots,

WeeGee xxxxx