Posted in Living with cancer

A fresh pair of knickers and a decent cuppa tea…..

Everybody! How the chuffin’ hell are you all?!

I was a bit of a misery guts in my last post, wasn’t I? It’s a long story, and I’ll write more about it another time but for now – HELLO, it’s me, WeeGee, and I am back on track….

Surgery. The low-down

As you know, this time last week I had my surgery. It didn’t exactly go according to plan – OF COURSE it didn’t exactly go according to plan – but it was, as far as the surgeon was concerned, a success. He managed to remove all of the cancer which was exactly what we were hoping for. HUZZAH.

The operation took a bit longer than anticipated – the tumour had attached itself to a muscle so (LOOK AWAY NOW IF YOU ARE SQUEAMISH) the surgeon had to shave quite a bit of the affected muscle off. There was also more bleeding than expected, even accounting for the blood thinners I’ve been on since the DVT back in April. It took a long time for them to (SQUEAMISH HIGH ALERT) “stop all the tiny nerve endings from oozing all over the place.”

After the surgery was over, it was BLOODY AGES before I came round from the anaesthetic and I had a hard time of it the first time I woke up. In the end it was more than three hours before I was moved from the recovery room back to the ward. I’m told I was quite entertaining that evening, but I wouldn’t know anything about that.

Off my face
Adventures in tramadol and general anaesthetic

WeeGee and the Great Big BooHoo

The morning after the op was a difficult one. I’d slept badly for a start and, on account of an extremely sore throat, I’d had nothing but a pot of yoghurt to eat for more than 30 hours. I was attached to all kinds of buzzing, beeping contraptions, and it had finally, properly occurred to me that I was going to be leaving the hospital in possession of one less boob than I’d arrived with.

It must sound odd. I mean I knew I was going into hospital for a mastectomy so, you wouldn’t think actually having had a mastectomy would come as a shock, right? But somehow, it did. When I woke up, there was no denying my right breast wasn’t there and in that moment there was absolutely no getting away from the fact that I was knee-deep in treatment for breast cancer. It took me by surprise and it hit me all of a sudden, all at once – not just the mastectomy but the whole of the past nine months: the diagnosis, the chemo, the clot, the infections, the allergic reactions, the pain, the fatigue, the fear, the sadness – and the absolute fucking fury of the whole thing.

So I cried – and by that I mean I boo hoo’d the most spectacular boo hoo I ever have boo hoo’d in my life. I cried for everything that had happened and for everything still to come. I cried for myself and everyone else. I cried for what I’d lost, for what I’ll not get back, and for what I’ll never have. I cried for my disappeared boob and the lonely looking one left behind. I cried because I was starving and I couldn’t face another yoghurt and I cried because TEA JUST ISN’T THE SAME IN A PLASTIC CUP AND WHY DON’T HOSPITALS OF ALL PLACES KNOW THAT?

It sounds terrible, but really it was okay and, to be honest, much needed. A fantastic and extremely kind nurse steered me through it all. She listened as I raged and dried the tears as they fell. Then, when there were no more tears to fall, she hugged the last of the sadness right out of me. She encouraged me to get up and dressed and, once I was all bright and shiny and new, she brought me tea in a proper cup because it’s true what they say – not all super-heroes wear capes.

And that, as they say, was that. A fresh pair of knickers and a decent cuppa later and it was back on my way: WeeGee against the world once more.

TEA
Tea is always the answer

One week later

My discharge came the day after surgery, and over the course of a week I’ve eased myself back into the real world slowly but surely. The drains came out a few days later and, while I was thrilled to see the back of them, the less said about the procedure, the better. It truly was the most awful of all the awful things that have happened to me. And I’ve seen my fair share of awful recently. Let’s never talk of it again….

As I’ve recovered, I’ve been surprised by how well I feel, but frustrated by my lack of mobility. I’ve lost some sensation in my arm* and the nerve pain and fatigue from chemo linger on. Nevertheless, I’ve been up and at ‘em – to a lesser or greater extent – every day. My daily ambles around the garden have progressed into strolls around the block, and I’m mostly managing to keep up with the post-operative exercises prescribed by the Breast Care Nurse. I do have some pain, but thankfully, it’s manageable. To be honest, compared to the pain I had before the surgery it barely even registers so I’ve managed to pack away the Oramorph at last. Huzzah!

There have, of course, been a few more tears along the way. When they come, I let them be and they pass soon enough without doing me any harm. For the most part, I’m coming to terms with it all reasonably well. I’ve spent time in the garden with my nose in a book and found solace there. I’ve painted my nails in the brightest shade of pink I could find, and I’ve eaten plenty of good, fresh food. I’ve booked myself onto the next level of the Blaze creative writing course (YAY) and purchased access to two online gardening tutorials. I’ve treated myself to some very excellent new pyjamas, and I’ve listened to a lot of radio four.

jim jams
Very excellent PJs

I’ve also started to realise my recent focus has been on getting through the physical challenges of cancer treatment. That was fine. I needed to do it like that because I knew I could only get myself this far in a calm, practical, head on, smash-through-it-but-don’t-feel-thing kind of a way. But now I need some time and space to let my thoughts catch up with the rest of me.

I’m fortunate that I can give myself the break I need without any pressure to get back to work and safe in the knowledge that I will be very well looked after by the truly AWESOME men in my life.

this pair
Mr Awesome Thing Number Five hasn’t let me do so much as make a cup of tea. Gryff has only bitten me once and his heart wasn’t really in it….

Meanwhile, in other news.

Meanwhile, in other news and just in case you were wondering what’s going on with my hair – I’ve got a full head of this stuff although to be fair, not quite enough to occasion a comb just yet.

That’s all from me for today. Now I’ve got the pain under control, and a few weeks off work I’ll doubtless be able to post more regularly so stay tuned for plenty more nonsense from me. In the meantime, I’ll leave you with a song and wish you a happy weekend when it comes around.

Oh – and if anybody needs me, I’ll be busy being busy,

Taking it easy
This is what busy looks like for the next two weeks.

Love you all lots like jelly tots,

WeeGee xoxox

*This may, or may not, be temporary, time will tell.

Posted in Living with cancer

Update (The one where WeeGee has a sense of humour by-pass)

Hello there, you lovely lot! It’s been a while since my last post hasn’t it? I swear to God I’ve been meaning to sit down and write an update but you know how it goes…. Somehow, the time and inclination just haven’t been willing to show up together and besides, I’ve been pretty busy watching Stranger Things 3….

The last time I wrote I was gearing up for my final chemotherapy session, a milestone that I am pleased to report has now been achieved. In the end, the last session was an unceremonious affair, partly because I didn’t want to make a fuss and partly because I was K.N.A.C.K.E.R.E.D. True to form, I cried as we left the chemo suite for the last time* but apart from that, I haven’t really looked back. I don’t miss it and, if I never have to see another IV chemo pump again that’ll be all right with me. Please and thank you to the powers that be.

chemo over.jpg

Whilst it’s fair to say that I’m finished with chemo, I am under no illusions because chemo is not quite finished with me. Towards the end of the treatment I started to appreciate the toll it was taking on me and my body and now, more than six weeks later, the lasting effects of what I have been through are ever present. Unfortunately, the chemo has caused some nerve damage, which is painful in a way I can’t even begin to describe to you. That, together with some further, equally excruciating pain caused by the tumour dying, is making things pretty unbearable for me at times. Add to that the fatigue, the fun and games of the instant menopause, the raging insomnia, the chronic indigestion, the extra stone and a half I’m carrying around courtesy of the steroids (it shouldn’t matter, I know it shouldn’t, but somehow it just does) and the ever present worry about the forthcoming surgery, and it would be fair to say that I haven’t exactly been my usual chirpy, hilarious self of late…. It’s the post-chemo sense of humour by-pass, I guess.

My surgery is scheduled for next Thursday. I’m having a right side mastectomy and axillary node clearance with delayed reconstruction. The delayed reconstruction is in part to allow for radiotherapy and in part to avoid an overly long operation in light of the DVT I developed back in April. The surgery should take no longer than a couple of hours and I expect to be discharged the following day. Those are the facts and between you and I I’m feeling quite calm and pragmatic about the whole thing. Sure, I wish the circumstance were different but at the end of the day my right breast is trying to kill me, and accordingly, I will be glad to see the back of it. Perhaps I will feel differently after the surgery but for now, I’m quite matter of fact about it all. The operation is the next thing I have to do to get myself better. The plan, as far as it goes, is to turn up and put myself in the capable hands of the NHS once more.

I suppose it’s all sounding a bit low key and miserable here in WeeGee land but FEAR NOT. All is not lost and I PROMISE that I am absolutely fine in spite of being a bit quiet and a minor misery guts. Sometimes, when crappy things are going on you have to find a way to power through them but then other times you have to sit with them and let them pass. Right now I’m at the sitting waiting for things to pass stage and I don’t really have too much to say for myself. Plus, if you really want to know the truth, the doctor has prescribed some seriously strong painkillers so I’m quietly and contentedly OFF MY TITS** for a significant portion of the time anyway.

Perhaps now I’ve managed to write something the wordy-block curse that has striken me will lift and I’ll start spamming you with blog posts again – time will tell. In the meantime, keep me in your thoughts or prayers (or whatever you keep folks going through shit in) next Thursday.

I’ll leave you with a song, inspired by Stranger Things, and a promise to be back,

Love you all lots like jelly tots,

WeeGee

*What can I say? I always cry at endings

** There is a tasteless joke in there somewhere but it’s still a bit soon, no?

Posted in Living with cancer

ONE MORE TO GO

O Hai!

I thought we’d do a quick hair status report before we get started:

Haircut: A smidge off Natalie Portman, circa V for Vendetta.

Eyebrows: Half a dozen each side, multiplying slowly.

Eyelashes: Three. The magic number.

——-

Since last I wrote I have mostly been thinking about 4×4 Porsches. Specifically, I’ve been busy trying to figure out whether people buy Porsche 4x4s because they want a Porsche, or because they want a fancy 4×4. I mean if you’re in a position to be buying ANY fancy 4×4 of your choice you’re going to want a customised Range Rover, aren’t you? And if what you want is a Porsche then surely you’re going to want something a little bit flashy. Showy, even, no? All I’m saying is I don’t know what’s going on in peoples’ heads when they buy Porsche 4x4s. And that’s all I’ve got to say about that. As an aside, I suppose now might be a good time to mention I’m starting to get a bit bored of my sick leave…..

How have you all been anyway? All is well here in WeeGee land. Or at least as well as can be expected when you’re six months into five months worth of chemotherapy. Still, yesterday was chemo number 15 out of 16, which means there’s one more to go! I’m looking forward to being able to tick something off the list at last, but I’m tired and I’m keen not to get ahead of myself. My active treatment won’t finish until at least the end of the year and that means there’s still a long way to go. In my case, the chemotherapy isn’t even the primary treatment – it’s neoadjuvant, literally meaning before the main treatment. My main treatment will be the surgery, and it won’t be until that’s done that we know what we have been and are up against.

two to go
The ‘two more chemos to go’ face

Of course, I’m glad I’m nearly at the end of chemotherapy, but I’m only glad in a small way. It’s that thing about not counting your chickens, I guess….

Six months later

Oddly enough, six months ago today, I was busy having my first chemotherapy session – it feels like a lifetime ago. It was Christmas Eve, and while I don’t exactly know what the opposite of festive is, I think it’s safe to say that’s pretty much what I felt as I walked into the Osborne Building, past the jolly holly Christmas tree in the foyer, and  up to the chemotherapy suite for the first time.

I’m still not entirely sure how I got myself to that first appointment because every single fibre of my being was SCREAMING at me not to go. I was still at the ‘this isn’t really happening’ phase, still more than half convinced that somebody had made a terrible mistake somewhere along the line and still wondering why, if I didn’t feel ill, I had to have the treatment at all. In the end, I suppose I  got myself through that day in the same way as I’ve got myself through pretty much everything – by putting one foot in front of the other until I didn’t need to anymore.

I’m sure there are all kinds of ways to get through chemotherapy. You just go with whatever works for you and for me, it was one foot in front of the other, in front of the other, in front of the other until I got myself here with the finishing line in my sights. It’s been a bumpy old road, that’s for sure.

Six months is a long time to do anything for. After six months, the thing will have smashed a path into your life, established a new set of routines, and settled in for the long haul. After six months it isn’t even a new thing anymore, it’s just a way of life. After six months, that thing that you didn’t want to do with all of your might, is just a standard flavour of normal. After six months you find yourself somehow attached to the thing – to the tedious, repetitive nature of it all, to the cotton wool you’ve been wrapped in, to the rhythms and routines.

All of this is really just to say that I’m still feeling a bit reflective as I near the end of the chemo. Either that, or it’s Stockholm Syndrome….

Ring my bell

As I near the end of chemo, a couple of people have asked me if I’ll be ringing the bell and the short answer to that is no, for a couple of different reasons.

The end of treatment bell is a relatively new concept here in the UK, brought back to Manchester via Oklahoma for a little girl called Emma, who was treated for soft tissue sarcoma back in 2013. Over time, the bells spread out of children’s wards and into adult hospitals and they are now fairly common up and down the UK. The hospital I’m being treated at has an end of treatment bell in the chemo suite, radiotherapy unit, and out-patient clinic.

End-of-treatment-bell

There has been quite a lot of talk in the cancer community recently about the end of treatment bell. This blog post, in particular, caught my attention and has generated quite a lot of conversation online about the impact that the end of treatment bell has on those receiving treatment for cancer that can’t be cured.

For my own part and for what it’s worth, my feeling is that there is perhaps an argument for moving the end of treatment bells away from main treatment areas, but I see less merit in the case for removing them altogether. In the past six months, I have seen countless people ringing the bell in the chemo suite during my treatment, and do you know what? I’ve never seen smiles like it. It always seems to me like a tiny moment of pure joy at the end of a thousand dark days and I can’t make a case for taking that away from those who want it.

As for my own decision not to ring the bell at the end of the next treatment, there are two factors. The first is that for me, the end of chemo doesn’t really mark the end of anything in the true sense of the word. There is, as I keep saying, still a long way to go and I’m not in the business of tempting fate right now. The second is that I’m not exactly mad keen on being the centre of attention at the best of times and ringing a great big bell so everybody turns to stare at me standing there ringing a bell like a giant plum is my idea of FUCKING NIGHTMARE. So you know, no thank you very much…..

Meanwhile, in other news.

Meanwhile, in other news, it is STILL raining here in Harborough, but the good news is, on the box sets front I’ve rocketed through The Good Fight, Chernobyl, Year and Years, The Good Doctor and Sacred Rivers with Simon Reeve. I’m all out now though, suggestions, please?

Nothing else to report today so here endeth the blog post. It’s over and out with a song as usual. This one is more than 20 years old, and if you’re struggling to believe that, well I  guess that can only mean you’re as old as I am.

Love you all lots, like jelly tots,

WeeGee xoxox

Posted in Living with cancer

Leap and a net will appear

Hello there you lovely lot. How’s it all going? I’m sorry I’ve been absent – I’ve been busy having chemo, and writing short stories and passing my creative writing course WITH A DISTINCTION. Go me.

I’ve also been relatively busy despairing about the state of UK politics, but that’s not exactly news, its just what we all do now, isn’t it?

Eyebrow news

Since last I wrote, three whole weeks have passed and, WAIT FOR IT, there is eyebrow related news to report. No less than six of the little beauties had sprouted at the last count, although the situation on the ground is fast changing. It could be as many as EIGHT by now. Okay, so they’re nothing much to write home about just yet, but I’ll take them. Huzzah!

he man giphy
One day soon. One day.

Two more chemos to go

Things have also been going pretty well on the chemo front since we last spoke. Reducing the dose of the paclitaxel worked wonders for the awful pain that I haven’t moaned nearly enough about, but also delivered the happy coincidence of much better liver function test scores. As a result, I managed to have four chemos on the bounce with no breaks in between and, as I write, I have only two more chemo sessions left to go. It  feels both awesome and strange in equal measure.

I haven’t enjoyed chemotherapy. Nobody does, I guess. For the past six weeks, my mantra has become ‘I’ll be glad when this bit is over with’ because weekly chemo is hard going – it’s incessant, and exhausting and so utterly dull. Mostly I’m tired. I’m tired in my bones. I’m tired in my head. I’m tired my heart. When I walk out of the chemo suite in two weeks, I will be glad beyond any measure I can imagine.

I thought I was smiling 7A6DD366-A7DA-42CE-B4FC-F85FAE656331
I honestly thought I was smiling when this picture was taken – I guess this is just the face I pull during chemo now

Truth told, there’s another feeling mixed in with the anticipation of being free from the drudgery of weekly treatment. Fear – I think. Fear of what comes next, of how much longer the path ahead of me actually is, and of course, fear of where that path might lead me to, in the fullness of time. During chemo, I’ve been all wrapped up in the routine of it all, focused on ticking the next treatment off the list, and most of all, cocooned by the amazing NHS. The doctors, nurses, healthcare assistants, and admin staff know me and what my story is. They’re looking out for me, week by week, treatment by treatment, day by day. As difficult as it’s been, I guess I’ve gotten used to chemo. I know how it works, what I’m doing, and how to get through it. What comes next is another huge leap into the dark.

What’s the plan then, Stan?

It’ll be a while before I know what I’m going to have to face up to next. There will be tests at the end of chemo, and decisions to be made about surgery, and then more tests, and more decisions about what to do once the full impact of the chemo and surgery is understood. There will likely be fairly extensive radiotherapy in my future, there might even be further chemo or additional surgery. I always knew I was on a long and uncertain path, and I am still absolutely resolute that I will do whatever it is the experts in charge of my care tell me to do.

So the plan at the moment is this: I get through the next two weeks of chemo, and I celebrate when it’s done. Then I get through the tests and await further instructions from my team. And then, when they say so, I leap.

LeapNet
I’m sorry about the ‘inspirational’ quote but as far as they go, it’s quite a good one.

Meanwhile, in other news.

Meanwhile, in other news, it has been raining here in Harborough FOREVER. Which is most disappointing in some ways, but it does make for some lovely cosy afternoons with the cat, a good book and Cadbury Darkmilk, which I’m eating by the bucketload because Jason Donavan told me to.

rainy days IMG_5234
Happy days. Rainy, but happy

Nothing else from me today, other than to say that I hope this post doesn’t seem too miserable. I’m perhaps feeling a little reflective as I approach the end of chemo, but I’m in good spirits nonetheless, and my chin is very firmly up.

I’ll leave you with a song as usual. I think we just have to accept the fact that all of the songs are going to be old now because, well, I is old and new music mostly baffles me.

Love you all lots like jelly tots,

WeeGee xoxox

Posted in Living with cancer

Looks like my hardcore rock and roll days are behind me, folks….

Since last I wrote things haven’t exactly been going to plan but let’s face it – things not exactly going to plan is hardly even news here in WeeGee land anymore.

According to plan CtoPfuaWYAA1Jdg
Much like my life at the moment, this cake didn’t exactly go according to plan

The long and the short of it is that these was no chemo for me again last week, but that everything’s back on track again now and as of Friday, I’ve started with the Carbo/Taxol combo again. There was the small matter of the COMPETELY UNNECESSARY mad dash to the hospital with a swollen arm somewhere in the middle of it all but we can put that down to an over cautious district nurse and NEVER SPEAK OF IT AGAIN.

Anyway, once the Registrar had given me the all clear to take myself and my only very slightly swollen arm home TEN MINUTES after arriving (don’t mention the FORTY MINUTE journey there) I found myself in Leicester on a sunny Wednesday afternoon. I decided to have a poke around some of the city’s cultural offerings so at least the whole trip wasn’t a complete waste of time.

IDay at the museum MG_4506
New Street Museum and Art Gallery, Leicester.

In the end I had a three-week break from chemo and truth told, it was pretty frustrating at times. I’d just gotten my head around the whole weekly chemo thing only to have it postponed two weeks running. Even now, more than four months on from the diagnosis, I still feel like I spend half my time waiting for my brain to catch up with the reality of what’s going on around me. In the space before chemo got going again I found my thoughts racing ahead of me, focusing on the next steps – the surgery, the radiation therapy, life post treatment. It was exactly what I’d promised myself I wouldn’t do: this fight is very much about looking at what’s directly in front of me and dealing with it, but I had spare brain capacity and time on my hands. Thankfully Mr Awesome Thing Number Five noticed the doomy gloomies starting to gather (again), and with a little help from my nearest and dearest, made sure I got out and about in good company, with my chin firmly up once more.

I can’t claim the break was all bad news because – and here’s the thing – I probably really needed it. I was well and truly whacked from the infection debacle that landed me in ward 39 a couple of weekends back and I needed to rest. By the end of the fortnight off I felt better than I had for a very long time. It’s a strange thing – chemo. You can never quite be sure whether you’re feeling chemo shitty, or, just plain old fashioned shitty. On reflection I think the infection may have taken a little more out of me than I had first thought and a lot of what’s been going on recently has been shitty of the plain old fashioned variety. In all honesty I’m maybe a little bit glad I got the extra time to recover. As I write, pretty much 24 hours after the chemo I’m feeling tip top, and I reckon only about half of that is the rather hefty dose of steroids I took this morning.

The arrival of some good solid sunshine here in the UK is very welcome indeed especially arriving, as it did, just in time for the long Easter weekend. My Easter didn’t exactly get off to the most festive of starts what with spending Good Friday in the chemo suite getting five hours worth of poison pumped into my veins and all but hey ho – at least I got a window seat and a table to unpack my little picnic this time round:

I can’t remember if I’ve written about the process of getting IV chemotherapy before perhaps because there isn’t all that much to say. It’s pretty boring, and pretty routine and the ward can be pretty solemn. I think everyone is mindful that everyone else is doing their own best to get through what they are going through in their own way. I guess you find that you go out of your way to be quiet and respectful. From time to time you strike up conversations but you really have to gauge it quite carefully so as not to trample all over somebody else’s coping strategy. Aside from that my top tips for chemo are quite straightforward– take a book or something to occupy you, headphones and snacks. Then all you’ve got to do is lie back and think of Scotland* – it really isn’t as bad as you think it’s going to be. If it wasn’t for the combination of pre med antihistamines and the alcohol content of the actual chemo drugs you’d probably be quite capable of driving yourself home afterwards….

Now the weekly chemo is done with I’ve got a fairly pedestrian Easter weekend planned, even though I feel completely fine. I mean, there’s no need for heroics here, is there? In view of the liver scores a couple of weeks ago I’ve been instructed to lay off the drugs, alcohol and rock and roll lifestyle INDEFINITELY. In years gone by that might have scuppered a perfectly acceptable Saturday night. Alas – times have changed and all I ever really had my eye on for tonight was a nice glass of Robinson’s summer fruits, a couple of ibuprofen and the second ‘Fantastic Beasts’ film on the telly box. I don’t know if it’s a chemo thing, or a nearly forty thing but I don’t mind either way. The rest of the weekend has been given over to sitting in the garden (with a generous slathering of factor 50 like all good chemo patients), writing, reading and polishing up a cool brass planter I picked up in an antiques shop a while back. Who knows, I might push the boat out and do a bit of weeding in my newly acquired garden – time will tell.

Better view 9F0285E0-5583-4546-8E4E-96F617096290
A slightly better view than yesterday

I think that’s all from me folks. It pretty much brings you up to date with the goings on here in WeeGee land, which granted aren’t exactly laugh a minute. What can I say – thanks for sticking with me! I’ve got all kinds of more entertaining posts planned, but I like to make sure we’re all up to date on the serious stuff before we get on to the fun stuff again.

Speaking of fun, the creative writing course I mentioned in my last post started on Monday and seems to be shaping up quite nicely so far. Over the next ten weeks I’ll be publishing the various snippets of creative writing that I put together during the course here, if anyone is particularly interested in reading them….

I’ll sign out with a song and bid you farewell.

Speak soon!

Love you all lots like Jelly Tots,

WeeGee xoxox

 

*Other nations are available

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.

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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….

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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.

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——

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. 
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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…….

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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

Posted in About today

And so I kept living

I wrote this post to mark World Suicide Prevention Day 2016, and it perhaps unsurprisingly, discusses suicide. Please scroll on past if that might put you in a difficult position. If you need help right now – pick up the phone, send an email (feel free to use my contact me form – I’m here, I won’t judge) knock on a door, head to A&E (ER). Take care of yourself xoxox

 —- 

Four years ago, I wrote this post to mark World Suicide Prevention Day 2012. So many things have changed in the years that have intervened – for me, for the people I love, and in the world – but sadly, one thing hasn’t changed much at all: the figures on suicide around the world.

According to the World Health Organisation an estimated 800,000 people worldwide lose their lives to suicide every year. It’s difficult for me to imagine the human picture behind a figure like that so I tried to break it down – it averages at around 90 people every hour; or three people every two minutes. In the time it hasn’t taken me to write this post nearly 100 people have taken their own lives. For every person who dies by suicide, another three people make an attempt on their life. So, in the time it has taken me to write this post 400 people have found themselves willing themselves out of the world. Sometimes, there are no words for how awful the human picture actually is.

Here in the UK, the picture is no less discouraging. In 2014 (the most recent year for which figures from the Samaritans are available) some 6581 people lost their lives to suicide in the UK and ROI – the highest number of men since 2005 and of women since 2011. Whichever way you look at it, the number of people who die at their own hand in the UK has increased – I don’t know whether that makes me more sad or angry, but I don’t suppose it really matters right now. I am a suicide survivor, and as hard as it is to say THAT is what matters to me right now.

As a rule, we still find it difficult to talk about suicide and that’s a huge problem because one of the best means of defence we have is talking about it.

Here’s what I know:

  • Talking about suicidal feelings gives you the space to examine them, outside of your own head.
  • Talking about suicidal feelings helps to remind you that you are never alone with them.
  • Talking about suicidal feelings gives you a distraction from the actions that are gathering ever more momentum in your mind.
  • Talking about suicidal feelings helps us to remember – above all else – that it’s okay to talk about suicide.

So – at the risk of repeating myself: I am a suicide survivor, and I am not ashamed. There have been times in my life that I wished not to have life anymore – it wasn’t ever that I wanted to be dead, more that I didn’t want to be alive anymore. The two things have always been, and remain, very different to my mind. The feelings that I had at those times don’t make a lot of sense to me right now but I remember the desperation, and hopelessness, fear and pain. I remember those things in my bones and in my heart – I carry them with me and use them to remind me that whatever happens, and however I feel: my life is worth having. And so I choose to live. I choose it every single god damn day.

Suicide is complex – nobody knows that better than I. But suicide is also, almost always, preventable. There is work to be done and we need to look to each other – to our family and friends, to our politicians, our media, our healthcare professionals – to make it happen. Most importantly of all we need to keep on finding the courage to talk about it, until all the shame is banished and until every single person who thinks they are lost is  in no doubt that we are ALL here for them, and that we are here to get them through.

I end, as I did four years ago, with some words that mean the world to me – words that have lifted my heart and carried it for me, words that have comforted me, words that have saved my life:

“Ours is essentially a tragic age, so we refuse to take it tragically. The cataclysm has happened, we are among the ruins, we start to build up new little habitats, to have new little hopes. It is rather hard work: there is now no smooth road into the future: but we go round, or scramble over the obstacles. We’ve got to live, no matter how many skies have fallen.”

Lady Chatterley’s Lover. DH Lawrence

Keep your lights burning brightly, my friends. And remember, it’s good to talk.

Love you all lots, like a million and one jelly tots – WeeGee xoxoxo

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Burning my very special little candle, in support and solidarity and hope