Breast cancer under forty – Page 2 – How do you eat an elephant?

Look Good Feel Better

Posted on February 19, 2019March 9, 2019 by WeeGee

Since last I wrote I have mostly been busy trying to compile a list of All The Perks Of Having Chemotherapy.

I’m not going to lie – it’s a short list……

All of the Perks of Having Chemotherapy: a handy list

First there’s naps: naps go to the top of the list because when you are having chemo you’re actively encouraged to take LOADS of them AND nobody gets to call you a lazy so-and-so when you take to your bed at three o’clock in the afternoon.
Then there’s ice-cream: turns out, if you feel sick and ill all day and then suddenly decide you fancy some ice-cream you’ll have no trouble convincing someone to go to the shop to buy ALL OF THE ICE-CREAM for you.
You don’t need to get your hair cut for AGES.
If, like me, you’ve got a cat you’ll probably be able to get yourself out of litter tray duty on account of all the germs and that – although to be honest, the more I think about this one, the more I think it might be less of a perk and more of a simple re-distribution of domestic duties…..
If you have psoriasis chemotherapy pretty much cures it in one dose and less than 48 hours
You have to go to some lengths for this one but if you can manage to end up with compromised veins you can legitimately refuse to do any hoovering, potentially for the whole rest of forever, because – and I believe this is the correct medical term – your arm is fucked*
If you are super lucky, you’ll manage to bag yourself a place on a Look Good Feel Better Workshop

One of the many ice-creams I have eaten and enjoyed….

Look Good Feel Better (LGFB)

Look Good Feel Better is an international charity working to boost the physical and emotional well being of men, women and young adults undergoing cancer treatment. The focus of their work is helping people to better cope with the more visible side effects of cancer treatment.

What LGFB do

LGFB run workshops at more than 100 hospitals in the UK. The workshops give people undergoing cancer treatment the opportunity to spend time together chatting, drinking tea and sampling skin-care and make-up products. The workshops are led by professionals who guide you through all kinds of important subjects like making the most of your chemo complexion, and re-drawing your eyebrows.

As well as the workshops, there are a whole load of online tutorials on their website. There’s also the ‘confidence kit‘ which you can get hold of via their website and is full of tips and tricks.

My experience of LGFB

My breast care nurse told me about LGFB the day I was diagnosed with breast cancer. She told me it was a pampering session, that I’d get a little goody bag of cosmetics to try and that it really helped people feel better about their treatment. She gave me a leaflet about it and, I suspect noting the distant how-the-fuck-can-this-be-happening, I’m-not-actually-taking-any-of-this-in look in my eye, wrote “THIS IS IMPORTANT” on the front.

I had to wait a little while for a spot on one of the workshops as they tend to be oversubscribed but I eventually rocked up to the Macmillan Advice Centre at the Leicester Royal Infirmary at 10am this morning, very much looking forward to the session.

There were seven other women at the workshop and every single one of them was amazing. I don’t suppose we had very much in common really, apart from the obvious – we were all ages, all walks of lives, different ethnicities and we’d come from at least three different counties: whenever I find myself in a group of people with cancer, I do find there is a very visual reminder that cancer doesn’t discriminate. This morning as different as we were, we were united – we were united by our diagnosis, our experiences, our eyebrow anxiety, our fear of the future, our fondness for one particular chemo nurse…..

The session was led by three make-up artists. They were super knowledgeable, really friendly and incredibly kind. They created a safe and supportive environment and made an excellent cup of tea at half time. The goody bag was fairly substantial, with some recognisable brands in mostly neutral, useable colours.

I enjoyed the worksop – my eyebrows looked better when I left than when I arrived and from here on in I will be a tad bolder with my eyeliner. More than that though, I enjoyed spending time with the other women. I loved hearing their stories, I loved being in their company, and I loved having a very real reminder that I am not alone in this – there are so very many people in the same boat, sailing along with me.

Why LGFB matters

Coming to terms with a cancer diagnosis is difficult. It’s a confusing and frightening time, and more often than not, the treatment gets underway before the patient has even started to process what’s happening or what it means.

In my experience, you find yourself catapulted into something that you’re not ready for, and that you couldn’t stop even if you wanted to. Your head is all over the place and then, before you know it and on top of everything else there’s a stranger looking back at you in the mirror, and you feel very different even though you know you are sitting there in your own skin. I’ve had days where I’ve wondered if I could face leaving the house because I didn’t feel or look like myself. I’ve had days where I’ve had to really psych myself up to get over the door because I felt so sick of facing the world looking like a cancer patient.

Getting through cancer treatment is as much about what’s going on in your head as it is about coping with the physical aspects of the treatment. LGFB helps you to get and keep your head on straight – it’s a tiny dose of confidence, a little boost of self esteem, and two hours of not thinking about anything other than how fabulous you look.

How you can help

LGFB is a charity, and as such, welcome donations and fundraisers. If you are looking to help people with cancer, LGFB is an excellent cause – they make a small but very real and important difference to the experience people undergoing cancer treatment have. More information about fundraising for LGFB is published on their website.

If marathons and tough mudders aren’t your thing, but makeup is you might also consider investing in some LGFB makeup brushes. I can personally testify as to to the quality and can’t think of a much easier way to support a great charity…..

Meanwhile in other news

Meanwhile in other news this time next week I will be exactly half way through the chemotherapy leg of the treatment which feels like a very important milestone indeed…..

As usual, we’re winding up with a song because that’s what we do, and because routines are important. It’s another old one I’m afraid, but that, I guess, is what happens when you get old…..

Love you lots like jelly tots,

WeeGee xoxoxox

*I don’t actually recommend doing this

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

Posted on February 12, 2019February 13, 2019 by WeeGee

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.

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…..

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

About today, Living with cancer

Young, fit and healthy

Posted on January 29, 2019January 29, 2019 by WeeGee

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.

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

About today, Living with cancer

Call me what you want

Posted on January 29, 2019January 29, 2019 by WeeGee

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

About today, Living with cancer

Another fine mess

Posted on January 22, 2019January 22, 2019 by WeeGee

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 6^thDecember 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.