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

This cat has got better eyebrows than me…

Hello and welcome back to WeeGee Land where the sun is shining, the chemotherapy is flowing and – I regret to inform you – the eyebrows have STILL yet to sprout. Man, do I miss my eyebrows….

Eyebrows 872b24c808caf0add2ec2574ce52a301
This cat has better eyebrows than me and I can’t stop thinking about it…..

Since last we spoke, there has been no drama whatsoever for me to contend with – huzzah! At my last meeting with the oncologist, we agreed to reduce the weekly dose of paclitaxel (that’s the one I’m allergic to) slightly, mainly to help manage the quite extraordinary bone pain it had been causing. The good news is this seems to have done the trick – the pain is now well within manageable levels and, as an added bonus, my liver seems to be coping a little better with the toxicity. My next chemo is scheduled for Monday and – GET THIS – once that’s out of the way, I’ll only have THREE more chemo treatments left to go. I don’t want to tempt fate, but there’s an outside chance I’ll be finished with the chemotherapy by the time I turn 40 in August.

I guess the other news is that I’m currently signed off work. Somehow, I managed to get through twenty weeks worth of chemo while working pretty close to full time, but in recent weeks, I’ve found it more and more of a struggle. Up to a certain point, working was contributing to my overall sense of well-being, but over time, that changed. The chemo tiredness was really beginning to creep up on me, and I had started to worry about what I could realistically contribute at work. In the end, it became about where my priorities were at and, after a little thought, I decided that every single ounce of energy I have needs to go into getting through the last two months of chemo. I guess it was always going to be a balancing act but I’ve stepped back and for now, work can wait.

funny-ecards-the-nicest-way-to-make-your-friends-happy-08

Anyway, without work to think about I am basically living the life of a retiree – I spend a lot of time at medical appointments, I potter in the garden, I read, I write, I knit, and I shuffle about at canals on weekdays. Apart from the whole medical appointment thing, I don’t even completely hate it….If anybody needs me, I’ll be busy being a lady of leisure. Sorta….

Foxton IMG_5155
Foxton Locks, Leicestershire

Meanwhile in other news the creative writing is coming along quite nicely thank you very much. I’ve learned a lot on the ten week course and do you know what? I think I might even have at least a basic aptitude for it. I don’t think I’m going to get the novel out by the time I’m forty, but this time next year? Well. I guess you never know.

Nothing else from me today – I was conscious it had been a while since my last post so I wanted to get something down. I’ve still got plenty of more interesting posts planned – maybe now work is out of the equation I’ll get round to actually writing them….

I’ll leave you with a song and catch you next time….

Love you lots like jelly tots

WeeGee xoxox

Posted in About today, Living with cancer

WeeGee and the case of mistaken identity

Since last I wrote I have mostly been sitting in the February sunshine feeling conflicted. I’ve been feeling conflicted because on the one hand there is NO WAY it should be this warm in the UK in February, but on the other hand this was my office for three whole days this week and I can’t quite bring myself to complain about it.

Garden picture
Garden office, cute penguin mug, and THE best notebook in the world

The PICC line doomy gloomies

The eagle eyed amongst you might have picked up on a certain doomy-gloominess lurking in the corners of my last post and there’s no use denying it – I was feeling a little bit sorry for myself the last time we spoke. Between you and I, the whole PICC line thing had bothered me more than it reasonably should have. Just lately, you see, things have a habit of sneaking up on me and catching me off guard by mattering an awful lot more than I expected them too. That’s what happened with the PICC line I guess, it ambushed me with it’s own sense of importance.

I’ve spent a lot of time over the past couple of days wondering why I felt such a strong sense of resistance to delaying the treatment so I could get a PICC line and coming up with a list of pros and cons.

Here are the pros:

  • Having the PICC line will make the next twelve weeks worth of chemo considerably easier for me
  • Having a PICC line will protect my veins and give me back some mobility in my arms.
  • A delay of four days will make no practical difference to the outcome of my treatment

And here are the cons:

  • Having a PICC line is a constant and visible reminder that there is something wrong with me

And that, right there, is the rub, isn’t it? Having a PICC line is a constant and visible reminder that there is something wrong with me. Most of the time, I don’t feel like there’s anything wrong with me at all, so I’m loathe to look like there’s something wrong with me. On the one hand, it’s just pride, with perhaps a little bit of vanity mixed in. But on the other it feels a bit more vital than that – because as serious as cancer is, I’m not willing to let it in to my life any more than I absolutely have to – I suppose it has taken me a little while to find a way to make space for the PICC line emotionally because it marked a significant change in how things were going for me, and, if I’m honest, it felt like a defeat even though I know that it wasn’t one at all. Above all else, it felt like  admitting that maybe, just maybe, there really is something wrong with me…

Anyway – the PICC line is in and there’s no going back. I’m pretty much over it now, although I’d still prefer it IF NOBODY MENTIONED IT. And that’s all I’ve got to say about that…..

Flowers
Sensing I was a bit fed up about the whole PICC line thing, number one brother sent me some lovely flowers on the day of the procedure. And that’s why he’s number one brother* (*He’s also my only brother, but we’re not splitting hairs….)

Does this chump think I am goddam ill or something?

Every three weeks I have a pre-chemo appointment with the oncologist. He’s a nice chap – mercifully older than me* with a no nonsense attitude and a habit of holding your gaze just slightly too long. He’s a tiny bit awkward and I like him either because of or in spite of it. He wants to know the same things each time I see him – how I’m feeling, what my symptoms have been like, whether I’ve had any sickness, or dizziness, or trips/slips/fall, or weight loss, or weight gain, mouth issues, or pain, or bruising, or bleeding or yada-yada-yada….

They feel like questions designed for someone else entirely. I answer him as best as I can** and, of course, I’m perfectly polite about it, but I can’t help wondering if the poor chap has taken leave of his senses because it does rather strike me that he seems to be under the impression that I am a sick person. Didn’t he notice me bouncing into the office filled full of vim and vigour and life? Can’t he see I’m FINE? Doesn’t he know I won’t let this beat me? I mean sure, the chemo knocks the stuffing out of me for a week or so, and I get a bit tired at times, and my arms have been giving me a bit of gip of late – but apart from that, I really am fine***. Okay, I’ve got cancer but it’s not as if I’m sitting here dying or anything is it?

Little horse
BOOM BOOM!

This is really happening

For a week or so after my diagnosis I entertained the notion that maybe there had been some kind of terrible mix up – that the whole thing was a case of mistaken identity and I had accidentally been given someone else’s awful news. Any day now, I thought, someone would realise what had happened and it would all be okay – for me, at least. Eventually, of course, I had to let go of the fantasy scenarios and accept that the nightmare wasn’t going to go up in a little puff of smoke and disappear.

This is DEFINITELY happening, even if it doesn’t feel altogether real. There is DEFINITELY something the matter with me, even if you won’t hear me admitting it very often. And I am DEFINITELY still doing my best to live as well as I can with cancer even if I do feel a bit like an imposter who has been marching around in a stranger’s life for the past fifteen weeks.

Since my diagnosis, I’ve spoken to quite a lot of people who are undergoing cancer treatment. I think I’ve mentioned before how different they’ve all been, how at first glance, they’ve only had their cancer diagnoses in common – but actually, when you reflect a little further, we all have something else in common. We are all, in one way or another, completely fucking bewildered. There is no manual for navigating your way through cancer treatment and nobody plans to get cancer, so when it comes you find you are woefully under-prepared for it. And what else is there to do when you find yourself there, but march around in a life that feels like somebody else’s entirely, putting one foot in front of the other, and doing your best to look like you know what you’re doing with the closest approximation of a smile on your face as you can manage? So that’s what you do. That’s what I’m doing. I’m not making a bad job of it so far, in the main scheme of things.

Smiling
On my way to chemo number four…. Still just about smiling.

Meanwhile in other news

Meanwhile in other news, I was very impressed with the excellent level professionalism on display in Harborough Superdrug this morning. I bought 43 hair bobbles**** even though I CLEARLY HAVEN’T GOT ANY HAIR, and the young lass on the till didn’t even blink…..

Bobbles
Who says baldies don’t need bobbles?

That’s all from me today, save to say that I hope you’re all happy and shiny and peopley….. Here’s a song to play us out. It’s an old one, as usual and it has no particular relevance, as usual….

 

Love you all lots, like loads and loads of jelly tots,

WeeGee xoxox

 

 

*I’m nearly forty – doctors are getting younger and I’m just going to have to get used to that. But when you’ve got breast cancer, the doctor wants to see the affected area whenever you meet so, you know, under the circumstances, it really does help that my doctor is a grown-up, relative to me and my hopeless childishness….

**None of the above, nosey parker

*** I’m reminded of a guy from the heady days of my undergraduate studies who insisted that he didn’t really get hang-overs. He said he just got a headache, and a bit of nausea, and felt really tired…..

****For REASONS.

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

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.