Posted in Living with cancer

This time next year

Hello! I write not from my sun-shiny garden – as had become my habit – but from my sofa, where I find myself curled up under a blanket with a cup of tea and a hot water bottle for company. The last hurrah of summer, it would seem, has already hurrahed. I can’t help wondering what autumn might have in store for me this year.

Garden sunshine
The last hurrah of my summer garden

Last autumn was the very definition of the ‘mixed bag.’ On the one hand, we had the Big Move North(ish) to Market Harborough to look forward to. It was a big deal for us, the relocation from Hampshire to the midlands, being as it was, part of a much bigger plan about what we wanted our future to look like. And on the other hand we had the spectre of my diagnosis hanging over us – the little lump and strange not-very-painful-pain above my right breast; the hope that it was nothing to worry about but the growing fear that actually, it perhaps wasn’t as innocent as all that.

That’s that then

I found the lump because of the strange not-very-painful-pain. At the time, I was busy packing up the old flat, and at first, I put it down to a packing injury – I thought I’d over-extended something, or pulled something, or bruised something – and so I put it out of my mind and pressed on. A couple of days later, when the niggle was still niggling I started poking around and there it was, unmistakable and heart-stopping: a lumpy little lump, the texture of frozen peas and the size of a five pence piece. And I thought to myself: “well SHIT. That’s that then.” It turns out your thoughts aren’t nearly as profound as you think they’ll be when those life-changing moments come around….

Garden last year
The day we collected the keys for the new place, with only the slightest idea of what might be coming my way.

I haven’t written much about how my diagnosis came about, mostly, I guess because there’s not a huge amount to say. In summary, I spent several weeks between late October and early December last year trooping around medical establishments, showing various strangers my tits and submitting myself to a raft of progressively less comfortable tests – mammograms, ultrasounds, biopsies, and CT scans to be exact. I don’t mean to make light of it, but really, it wasn’t any more complicated than that.

Show us

As for how I felt about what was going on – well, if you really want to know, I didn’t feel a single thing. I was there in body but not spirit – looking on from the side-lines – acting, to all intents and purposes, like the whole thing was happening to somebody else. Whatever gets you through the day, right?

Excuse me, I think you’ll find this is an ABSOLUTE SHITSHOW

As the nights draw in and the trees get ready to shed their leaves, it occurs to me that almost a year has passed since I first found my lump. Or, to put it another way, I can’t help thinking that this time last year I had no idea of the ABSOLUTE SHITSHOW that was about to come my way. And I want to be very clear about this, lest there is any doubt – cancer treatment is an ABSOLUTE SHITSHOW.

Don’t get me wrong. I’ve been finding my way through it because I have to find a way through it. And I’ve been surviving it because surviving it is the whole bloody point. And sure, I’ve laughed my way through a significant portion of it because what else was I going to do? And do you know what? Life has even carried on as usual for most of the time because I guess that’s just what life does.

But here’s the thing: you can find a way through and survive and laugh and live a reasonably normal life with an ABSOLUTE SHITSHOW running in the background. Cancer has taught me that.

Nothing to see.jpg

Figuring out what I need to figure out

They say that a cancer diagnosis hits people at different times and in different ways. For my part, I was doing just fine until there was a pause to recover from surgery. I found myself with time on my hands, and no treatment to distract me, and I started to realise that I’ve still got a lot of stuff to figure out.

I had no idea that the huge reality of it all was going to hit me when it did, or in the way it did. I didn’t realise how re-assuring the weekly chemotherapy sessions had been, or how sad I would be about the mastectomy. I didn’t understand how nervous I would feel ahead of the results of my pathology report next week, or how frightened I would be about the future. I didn’t realise that there would be times when even the most minor headache would lead me into a panic-driven, tear-soaked spiral of panic and grief. Until recently, it didn’t even occur to me that I might die and now I sometimes have to try very hard to put the thought of it out of my head at all.

There is, by the way, no indication that my demise is imminent and there is no reason whatsoever for me to fear the future. What I’m dealing with now is – for want of a better word – trauma. I’ve been living with a life-threatening illness for the past nine months, and it is no small wonder that now, as I near the final stage of my active treatment, the trauma of that reality should hit me. Dealing with the trauma is, of course, a large part of coming to terms with what has happened. And coming to terms with it is, in turn, a large part of leaving it behind.

And leave it behind I shall, in time.

This time next year

So I suppose what I’m saying is – autumn is unfolding, I’ve been through a lot, and I’m feeling more nostalgic than usual. I seem to spend a lot of my time looking back: to this time last year, or five years ago, or a decade ago. I find myself wishing it was any year but this year, any time but now – that it was a long time ago again and that I still had all of this to come. Or perhaps what I really wish is to be a long time in the future, with all of this behind me. Perhaps what I’m really thinking about is not this time last year, but this time next year, and the year after, and the year after.

Can you be nostalgic for the future? I guess you can. Hope is important and all that.

L.I.F.E.G.O.E.S.O.N

Aside from all the quiet reflection, life rumbles along like it always did. I’m healing well from the surgery – the scar is small, neat and strangely fascinating. I’m frustrated by how little I can move my arm (WHO KNEW HOW IMPORTANT ARMPIT MUSCLES ARE?) but I’m told that my range of movement is actually surprisingly good all things considered. All things considered, is, I believe, nurse speak for ‘I’m surprised because it should be absolutely fucked’…..

Meanwhile, in other news

Meanwhile, in other news, I’ve FINALLY got a full set of eyelashes and eyebrows to report, and my haircut is now somewhere in the region of Elle at the mid-point of Stranger Things One. Believe it or not, it’s only the second-worst haircut I’ve ever had.

Worst hair cut
THIS is the worst haircut I’ve ever had.

I’ll wind up, for now, leaving you with a song and loads and loads of love from my little corner of the universe.

Love you all lots like jelly tots,

WeeGee

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

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

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 Living with cancer

I’m still standing

24 weeks have passed since my diagnosis – winter has been and gone and already spring is starting to make way for the summer. It’s mind-blowing (to me at least) to think that nearly half a year has passed. Time didn’t stop as I thought it might – and while some things have changed beyond recognition just as many have stayed exactly the same.

Perhaps in years gone by I might have felt sad that another six months had disappeared and allowed myself a moment of melancholy reflection about getting older. But since my diagnosis, I take every single day as a victory. There’s no good being sad about getting older when something like cancer comes along – you soon realise that getting older is the one thing on your to-do list that you’re not prepared to give up on just yet.

NUMBER CRUNCHING

Since my diagnosis I’ve had about three million* blood tests,  two million** mouth ulcers, 82 steroids tablets, 30 stem cell injections, 21 blood thinning injections, 11 infusions of chemotherapy, 8 meetings with the oncologist, 3 infections, 3 mad dashes to the acute oncology assessment unit, 2 ultrasounds, 2 CT scans, one trip to accident and emergency, one hospital admission, one PICC line in, one (same) PICC line out, and a blood clot.

STILL STANDING

Whichever way I look at it, it’s been quite an adventure. And here’s the thing – I’m still standing!

source
Yeah, yeah, yeah…

THE FINAL COUNTDOWN

The good news is that as of Friday, I’ve had the first six of my ‘weekly’ taxol/carbo infusions – this really is the home straight.

6 left A69F4BFD-D278-4B5A-8043-641B36C4ACC7
My chemo number six face

In an ideal world, I’d have six infusions over six weeks left to go, but in reality, and given my reaction to the Paclitaxel, I’m expecting a few more delays along the way. Either way, I’ve got six more chemos left to go. Whether it’s over six weeks or over more weeks is no matter. In fact, the only thing that really matters is that we are entering THE FINAL {CHEMO} COUNTDOWN.

final countdown 2c49bc9f0e11fe96dc07248eae6df635

MEANWHILE IN OTHER NEWS

Meanwhile in other news, we’re having another bank holiday in the UK so if anybody needs me I’ll be doing bank holiday stuffs like buying books:

books CFD4A9B6-411E-4829-8957-22F485D3502C
I bought all these books today for less than TWELVE GREAT BRITISH POUNDS from the Oxfam book shop in Harborough. Huzzah!

And mowing lawns:

Chores E4A885B8-50C8-41F3-B440-480F645E298C
Does Monty Don have to mow his own lawn?

And chasing a reluctant and oh-so-wise-to-every-trick-in-the-book cat around the place trying to administer flea drops…..

Cat 5B4C5044-1803-460F-83CD-1B7C65BBB822
This is the face of a cat who has not yet forgiven me.

Nothing else from me today other than to say I’ve got a couple of meaty posts planned for the next week or so. Stay tuned for my hot takes on fake cancer cures and the ghoulish ghouls who peddle them,  whether breast cancer fundraising campaigns are too pink and fluffy, and how it feels to have a chemically induced menopause ON STEROIDS***

I’ll leave you, as always, with a little song and a promise to catch you laters, alligators….

Love you all lots like jelly tots xoxox

WeeGee xoxox

 

*Numbers are accurate at time of publication

** Ditto

***Spoiler alert. The answer is shit. It feels SHIT.

Posted in Living with cancer

I’ve started so I’ll finish

Since last we spoke people have taking to asking me how I’m feeling in myself as if I’m some kind of old person who’s just had hip replacement surgery. I don’t know the answer to the question by the way BECAUSE WHAT DOES IT EVEN MEAN – except maybe that after twenty weeks of chemotherapy I look so shitty that people can no longer, in good conscience, tell me I’m looking well all things considered?

Like shit b0526938969ee3e86eda110001c7c84cd84aec483c2e5fae8bc4da45fe31ab70

The Carbo/Taxol chemo continues to give me an absolute battering. It turns out I’m allergic to the taxol half of the cocktail, but not quite allergic enough to merit abandoning the treatment altogether. So we press ahead – a little more slowly than before. As things stand, I seem to be getting the green light to go ahead with chemo once every fortnight rather than once a week as originally planned. It’s endlessly frustrating, not least because it means that every time I think I’ve got the chemo finishing line in my sights they come along and move it back by ANOTHER week. That said, I’m told the delays are unavoidable if I want my liver to have long enough to pull itself together before it gets the buggery poisoned out of it again.  Which, on reflection, I think I probably do….. and so I limp on, battle weary but determined to finish what I’ve started.

Mastermind
I’ve started so I’ll finish

Some people sail through chemotherapy without so much as a second thought but for plenty more, it doesn’t quite work out like that. For a while, it looked like I might be one of the lucky ones, that I would just breeze through it with very little detriment to my life, but alas, it wasn’t to be. It isn’t so much that I hit a brick wall (as I was so often warned I would) but that the taxane based drugs came along and brought a tonne of bricks crashing down on top of me. For the first four cycles, chemotherapy was just something that happened alongside my normal life but now it is very much something that I find ways to endure. It seems like such an obvious thing to say, but I’ll be glad when this is all over.

Of course, it isn’t all bad because nothing ever is. There are always little chinks of light, tiny reasons to be cheerful, small pockets of hope. For one thing the sun is shining in Harborough once more. For another thing I’m off work now and so I stayed up way past my bedtime reading Pat Barker’s new novel ‘The silence of the girls‘ last night and after 100 or so pages I can categorically confirm that it is a THING OF ABSOLUTE BEAUTY. And for yet another thing, there’s Gryff because if he isn’t a reason to be cheerful, I’m sure I don’t know what is….

Gryff B930FC04-3740-48B6-9EE4-A9C29FEB302B

And for another, final thing, I’ve made it through twenty weeks worth of chemo already. Even if the worst case scenario comes to pass I’ve got less than that left in front of me. I guess what I’m saying is that if I could do what I’ve already done, then I can certainly do what’s left to get done – if you see what I mean.

Like I said – I limp on.

Meanwhile in other news I have now grown a convincing fuzz on my head and – this is the good bit – it very definitely isn’t looking grey so far. Huzzah! Still no sign of the eyebrows returning though, which is a source of constant consternation. I honestly didn’t realise how attached I was to them before they went and fell out….

Ate my eyebrows 4a4c19c4bc994dbb274d76e5a6e80206

Nothing else from me today save that I hope you are busy being out there in the world having all the fun it has to offer. I’ll leave you with a song, one of the prettiest songs I know, and bid you farewell – until next time of course…..

Love you lots like jelly tots,

WeeGee xoxox

Posted in Living with cancer

The one about triple negative breast cancer

Hello there you lovely lot. How on earth have you all been?

There’s not an awful lot I can tell you about the past week here in WeeGee land. I mean, it’s been pretty boring. I got my head around the whole blood clot thing, dragged myself through the post-taxol side effects, and survived my first blood test since the demise of the PICC line. And that, as they say, is that.

Or at least that should have been that. Sadly, there’s a small matter of some sub-par blood results and the yet-again-postponed-chemo to throw into the mix but I’ve decided I’m just going to go ahead and be philosophical about that. I’ll get chemo when my body is good and ready to get chemo and in the meantime, there’s a bank holiday weekend without any post-taxol side effects to look forward to.

The good news is not having any chemo today has also given me a bit of extra time to write a post I’ve been meaning to write for a little while now. So, ladies and gentleman, I give you….. the one about triple negative breast cancer (TNBC). Huzzah!

Screen Shot 2015-09-24 at 15.36.28_646x363

Before I start though, I want to sound a huge note of caution: if you are diagnosed with TNBC please (please, please, and pretty please) don’t Google it unless and until you have discussed the diagnosis with your team. TNBC is often portrayed as the Bogeyman of breast cancer, particularly in the popular press where the available word count doesn’t necessarily lend itself to subtleties or nuance in cancer reporting. The best advice I can give someone with a recent TNBC diagnosis is to listen to your doctors and take some time to understand what they’ve said before you head off to explore the quagmire that is the Internet unaccompanied. 

———-

Before this whole thing kicked off I hadn’t even heard of the thing that was going to come along and change my life forever. In fact, prior to my diagnosis, I didn’t fully appreciate that there were different types of breast cancer at all. So, when I first heard the words ‘triple negative breast cancer’ they barely registered. I heard the breast cancer bit loud and clear, but the other bit? Yeah, that sailed right over my head.

Less than a week later I was waiting to meet with my consultant oncologist for the first time. My appointment was at 7pm and I was the only person in the waiting room. Thinking back, I suppose it should have struck me as unusual that I was sitting there waiting to see a NHS consultant at 7 o’clock in the evening, just a few days after my diagnosis but at that point in my breast cancer journey my brain was completely fried and everything felt unusual. It was only as the appointment unfolded that I started to get a sense of the urgency that surrounded my recent diagnosis.

What even is triple negative breast cancer?

I’m not even going to try and explain the science here – others like Macmillan and Cancer Research have already got that covered – but in layman’s terms, in order to grow some breast cancers respond to a protein called HER2, some respond to oestrogen, and some respond to progesterone. And then there’s triple negative breast cancer (TNBC), which responds to none of the above.

TNBC accounts for between 15 and 20 percent of breast cancers and, in contrast to other types of breast cancer, comparatively little is known about why some women develop it. It doesn’t share the common risk factors for breast cancer, and for most women with the disease there is no genetic component* TNBC is more likely to affect women under the age of 40 and black women are also disproportionately affected by the disease.

Cat IMG_2493
It’s all getting a bit serious, so here is a picture of my cat.

What’s the big deal?

TNBC is often described as the most aggressive form of breast cancer, because it tends to be fast growing. More often than not, TNBC will be diagnosed as ‘grade three’ meaning it is made up of the fastest growing cancer cells of all. Because it is fast growing, TNBC also has a habit of spreading to other areas of the body meaning that the number of women with TNBC who are diagnosed with, or go on to develop a metastatic form of the disease (that is stage four, incurable cancer) is higher than those with other types of breast cancer. The fact that it is both fast growing and quick to spread also mean that comparative with other types of breast cancer, it is more likely to recur within the first three years. This recurrence risk has a knock on effect on survival rates which are measured over five years in the first instance.

That’s the bad news, but it isn’t all doom and gloom. For one thing, TNBC responds well to conventional treatments, like chemotherapy and surgery. For another, although the odds of recurrence are comparatively high that’s only true in the three years immediately following diagnosis. After that, there is no elevated risk of developing breast cancer again at all. And then – and this is the most important thing for me – notwithstanding any of the above, the overall survival rate for women with TNBC is almost eight in ten. It may not be the 93 percent for protein and hormone positive cancers, but it’s still a fairly sizeable majority – a fact that is all too often missing from the literature on the subject.

TNBC and me

Whichever way you look at it, TNBC is a nasty little disease and, given its propensity for growing and spreading, one that requires super fast treatment. Which is why, after my diagnosis had been confirmed, I was sitting in an oncologists office within a week, and a chemotherapy suite within a fortnight. Without wishing to put too fine a point on it, you just don’t fuck about when it comes to TNBC.

My cancer is not, in triple negative terms, particularly aggressive – grade two which is exactly in the middle of the three point scale. Unfortunately, some lymph note involvement was confirmed at the time of my initial diagnosis, or to put it another way, breast cancer cells were detected in the lymph nodes in my armpit. This isn’t ideal as it’s via the lymphatic system that cancer comes to move around the body and metastasise, or grow in secondary areas of the body. At the same time, it isn’t the end of the world because there is no evidence whatsoever that the cancer actually has travelled beyond the lymphatic system.

Even in the event that there were microscopic cancer cells swimming around undetected last December, the chemotherapy will have knocked the stuffing right out of them before they had the chance to take root and start growing anywhere else. And this means that by the time I’ve had my surgery and radiotherapy later in the year, the anticipation, expectation and hope is that there will be no evidence of cancer left anywhere in my body because I will be *whispers it* cured. That’s the plan and I am very definitely sticking to it…..

Me, he and the cat IMG_2573
Getting serious again, so here is a picture of me, he, and the cat.

Before I go, I wanted to come back to the point about TNBC being the Bogeyman of the breast cancer world. It may well have earned its reputation because, as I’ve said, it’s aggressive, quick to spread and eager to recur. But here’s the thing, the most important thing of all perhaps: the majority of women with TNBC will recover and go on to live the rest of their lives untroubled by the disease. I’ve been thinking about it a lot lately and I just don’t think we make enough of that fact. When we talk about TNBC we get all serious and gloomy and ashen faced. But – and I cannot stress this enough so I’m going to risk repeating myself, the majority of women with triple negative breast cancer recover and live the rest of their lives untroubled by the disease.

Pass it on.

—–

Quick song before I dash, to get your bank holiday started like:

Love you all lots, like jelly tots

WeeGee xoxoxo

 

*As an aside, a small number of women with TNBC carry the BRCA1 (another thing I’m not going to attempt the science on – see here). At the time of my diagnosis I wasn’t recommended for genetic testing, primarily because I don’t have any sisters. Now I’m a bit more comfortable advocating for myself I’ve decided to push for it to happen so it can inform my decisions about surgery and radiotherapy in a few months time. But that’s another story.

Posted in Living with cancer

A bit of a disaster

The last time we spoke I was busy boasting about how it had been plain sailing weather here in WeeGee land for three whole days. In the end, I think I got about a week of calm before I hit choppy waters again which I suppose is better than if I hadn’t got a week of calm at all.

To be quite honest with you, it was a lot like Frank Turner’s mohawk in Fathers Day – that is, a bit of a disaster.

As an aside, I’ve wanted to share that song with you for AGES and I’m sure you’ll agree that I haven’t shoe-horned it in at all.

As usual I’ll do away with the long, boring details and put it in a nutshell for you – when I turned up for chemo on Friday with pins and needles (which had been previously deemed ‘just a side effect of the paclitaxel’) and a swollen arm (which had been previously deemed ‘just an allergic reaction to the PICC line dressing’) ALL HELL BROKE LOOSE. Turns out it wasn’t a chemo side effect, or an allergic reaction at all. No! It was that blood clot I didn’t have a couple of weeks ago but actually quite probably did have all along. Fan Dabbie Dozzie…..

Blot clots (or deep vein thrombosis – DVT) are an occupational hazard for cancer patients. The fact of your cancer puts you at increased risk of developing them, and then the way chemotherapy drugs interact with your blood increase your risk slightly further, and then if you have PICC line – as plenty of chemo patients do – you get another layer of risk on top of that. When I think of it now it seems INEVITABLE that I was going to develop one!

PUBLIC SERVICE BROADCASTING ANNOUNCEMENT

There’s a more medical run down of blood clots on the NHS website if you want to check it out because, and this is important boys and girls – blood clots are not just for cancer patients. In the meantime, if you get any of the following:

  • throbbing or cramping pain, swelling, redness and warmth in a leg or arm
  • sudden breathlessness, sharp chest pain (may be worse when you breathe in) and a cough or coughing up blood

You need to seek medical advice pretty sharpish (in the UK by dialling 111).

END OF PUBLIC SERVICE BROADCASTING ANNOUNCEMENT

I was lucky. A very vigilant nurse decided that she wasn’t happy to accept the previous diagnosis and sought a second opinion from a doctor who also wasn’t happy to leave things as they were. So off I went for an ultrasound which detected a nasty little clot hiding out right next to the PICC line site. It’s impossible to know whether the clot was there when I was examined last week or whether it had developed since and at this stage, I don’t suppose it matters. The main thing is it was spotted and we’re now treating it with daily injections which I’d rather not talk about thank you very much because TRAUMA.

Alas, the dramatic interlude did not put paid to my weekly dose of Paclitaxel which I ended up having via an old fashioned cannula because the PICC line, which I resisted, and slated and hated with all my might (but secretly came to love) is GONE. As soon as the clot was confirmed they whipped that out in seconds flat, and I do really mean that they whipped it out in seconds flat. Which is all I’ve got to say about that because TRAUMA.

DNUse C78D457C-F5B1-4086-B2E4-FAD29B8CA553
DO NOT USE

We’ll wait to see how my veins cope with the Carbo/Taxol chemo and weekly blood tests. The thinking at present is that we’ll give it a go for the next two weeks, see what happens and then consider an alternative plan of action if the veins are starting to put up a fight. The Carbo/Taxol chemo is ALLEGEDLY kinder and gentler than the EC chemo that caused my veins so much grief earlier in the year but between you and I, I’m not altogether convinced they are up to it, particularly given we’ve only got the non-clotted arm to play with. Time will tell I guess…..

By the time all was said and done we were on the chemo suite for a full eight hours yesterday, rather than the two hours we’d budgeted for. The day was made slightly better than it could have been with a visit from a LOVELY former patient who had held a bake-off event with her friends so she could put together little gifts for everyone on the suite. It was such a genuinely gorgeous gesture and yet another reminder – as if I needed one really – that people in general, are generally nice.

Gift A5CEB013-7995-4ED5-9DB6-32E1C373F216

It was a long and frustrating day and by the time we got home I was completely, utterly and well and truly wrung out. I made it as far as 8pm before the steroids wore off and it all caught up with me, manifesting in what shall henceforth be known as the Marks and Spencer’s Chocolate Cake Incident. But I’m not ready to talk about that yet, because – you guessed it – TRAUMA.

So, yeah. That’s the story of the blood clot I didn’t have last week but probably did have all along and the rather unceremonious end to the much-maligned-but-not-as-bad-as-all -that PICC line. The fun never stops….

Meanwhile in other news I am continuing to sprout an impressive little fuzz of hair on my head but alas, the eyebrows are not yet ready to return. Nothing else to report today save that I hope you are well and that those of you in the UK are coping with the ravages of Storm Hannah. Stay strong…..

Look – I know we’ve already had a song but it’s tradition to have one at the end. So here is a song. At the end.

Love you all lots, like all the jelly tots

WeeGee xoxox

 

 

 

 

 

 

 

 

 

Posted in Living with cancer

We’re going to need a bigger boat

Okay – so all things considered, March didn’t exactly go according to plan.

The PICC line (yes, I’m still banging on about that) knocked me for six. And then I got sick. And then I realised that instead of four more visits to the chemotherapy suite I was going to have to get my head around another twelve. And then AS IF THAT WASN’T QUITE ENOUGH ALREADY THANK YOU VERY MUCH the first dose of the new chemotherapy went and knocked the stuffing right out of me.

By this time last week I was well and truly fed up with the whole blimmin’ thing. I’d been experiencing pretty spectacular post Taxol chemo pain in my bones and muscles for four days straight and it was starting to take it’s toll. I had a thumping headache, I couldn’t sleep for all the steroids, could barely think straight through the chemo fog, and although I was trying my best to keep my pecker up,  to be quite honest with you, no matter what I did, my pecker was just not for upping. I tried everything, including watching Inside the Potato Waffle Factory which I had been saving for this very kind of doomy gloomy emergency and even that didn’t snap me out of it….

It was dire straits here in WeeGee Land, man.

Actual. Dire. Staits.

And then things changed….

I’ve long since subscribed to the notion that things have a habit of turning up at the right time, or perhaps, put another way, that things have a habit of working out in the end. Over the years I’ve come to an understanding with myself that when the chips (or waffles) are down – which they are going to be from time to time – I just have to find a way to sit it out because eventually something new will turn up: a new way to feel, or a new thing to think about, or a whole new direction to go in. Or this amazing picture drawn and indeed signed by Richard Osman (AKA my Pointless Friend) and used as an actual question on an actual episode of my actual favourite quiz show, Pointless.

Jaws C52A924A-E068-4656-902E-5B93FB1F45DA.JPG

How cool is that?

The backstory is worth filling in here.

First up, I have a long standing borderline obsession with Pointless for all kinds of reasons but mostly because I’m competitive when it comes to quiz shows and I’m quite good at Pointless. I once scored THREE POINTLESS ANSWERS in a ‘studio albums by REM’ Pointless Final question and it remains, to this day, one of my proudest achievements in life.

Secondly, the picture filled my heart with such gladness when I saw it on the telly box – it made me properly laugh out loud, not least because the phrase ‘we’re going to need a bigger boat’ is oft used here in WeeGee Land when things are in the process of going tits up. And I especially loved that the little man went with the calm and gentle refrain of ‘oh no’ in the face of such awful impending watery/sharky/bitey/fuckitty one-armed doom.

Finally, Mr Awesome Thing Number Five made it happen just to cheer me up. I didn’t ask him to source me a copy of the funny Jaws picture from Pointless, he just remembered how much it had amused me. It turns out he wrote to the Pointless team while we were holed up in A&E that day, which makes it just so super sweet. Yet again, I am reminded that, when it came to choosing my people, I did a pretty good job…..

Us 8819E76B-BBD4-4357-A832-32ABE0AB63A9.JPG

It’s goodbye from me

So yeah, March wasn’t quite the month I wanted it to be but it had it’s moments. And it’s April now anyway and I’ve every confidence things will be on the up and up all the way from here on in…. The tree at the front of our new house sprung into blossom what seems like overnight and that feels like a good thing. A good sign, you know, or if not a sign, just something pretty to look at for the next few weeks. And that’ll do me.

Blossom 5B4D44A8-9F3D-4878-A3E1-EC6F3729D140

I suppose the moral of the story is that it doesn’t take much to cheer a WeeGee up. Or maybe that a little gesture can go an awful long way. That picture ABSOLUTELY made my day and it didn’t cost anything but time and effort on the part of the Mr and the people he wrote to. Perhaps what I’m really trying to say is that people, in general, are generally nice…..

I’ll play you out with a song, as usual. Well. Sorta.

Love you lots like Jelly Tots,

WeeGee

 

 

 

 

 

 

Posted in About today, Living with cancer

Nobody mention the PICC line….

Since last I wrote I have mostly been busy trying to keep my mind off two sore arms and one minor setback. Settle in and I’ll explain….

The first thing you need to know is that I’ve got really tiny veins. And I’m not just saying that to show off. Every time I meet someone who is tasked with getting a blood sample from me*, I have to open with “Oh hai! I’m WeeGee and I’ve got really, really (really) tiny veins” and then they don’t believe me until they actually SEE the veins at which point there’s usually a small sigh before the hunt for a teeny tiny needle begins…..

Here’s the thing though. If you start pumping really powerful, corrosive chemotherapy chemicals through really really (really) tiny veins at three weekly intervals, it turns out they get damaged and start to grumble about it. The veins in my left arm started complaining after chemo round one, then the right arm joined in after round two and by round three they were both screaming and shouting about it like bloody loonies. I’m making light of it a bit, but between you and I it’s not actually funny at all. As things stand, both of my arms hurt like buggery and the left one doesn’t exactly work. I’m assured this is a known side effect of the chemo I’m on, if not exactly one of the more common ones. But hey – at least it can’t be said that there’s anything common about WeeGee……

Anyway – to solve all of this, the oncologist decided we’d give up on the really, really (really) tiny veins and insert a PICC line so we can go straight for the heavy duty veins. The hope is that if we go for the big guns, they might not complain about the toxic chemicals quite so much but unfortunately, to get the PICC line in, we’ve had to delay the next round of chemotherapy by FOUR WHOLE DAYS. And that’s the story of how I came to be sitting here chatting with you today, instead of getting my fourth round of chemotherapy done as planned…..

I’m not over the moon that my treatment has been delayed. For me, the fourth round of chemotherapy marks the half way point and that had come to matter an awful lot to me in recent weeks. I kept thinking that by the time I got the fourth one out of the way, I’d have have climbed all the way up to the top of the mountain and would soon be on my way back down the other side. Halfway is a milestone – it’s progress of sorts – it’s something I can tick off the list. I know it’s only four days, and I know it could be a whole lot worse but the HALFWAY point mattered and I’m annoyed that we’re not doing it today. I was all set to smash my way through it.

On reflection, chemotherapy so far has felt  like a series of right decisions I wish I hadn’t had to make – the PICC line is just another of those. Of course I don’t want a permanent, visible reminder of what’s going on with my health attached to my body. Of course I don’t want to be faffing about with a district nurses in and out of the house all the time because, I mean, DO THEY THINK I AM ILL OR SOMETHING? And of course I don’t want something as simple as jumping in the shower becoming a military-fucking-operation. But – and this is an important factor to consider – I’d also quite like to have a pair of working arms when I get better. That’s what I got to choose from – the PICC line, or lifelong mobility issues. In the end, I brooded about it for a day or two, did a bit of swearing in my head and then I got over myself, sucked it up and moved on because what else are you supposed to do anyway? Just don’t mention the PICC line and we’ll be absolutely fine…..

Meanwhile in other news, the sun came out over Market Harborough this weekend. I know that climate wise it isn’t exactly great news that we’re all walking about in t-shirts in February but I do like the sunshine, and I do like the spring. I made a point of getting myself out and about in it because who knows how long it will last, or how many more weekends like that we’ll see this year? I was lucky that the sunshine fell on my third weekend and I was determined to make the most of it with a fairly decent walk in the Northamptonshire countryside. The fresh air and exercise did me the world of good and if I was tucked up in bed by 9pm as a result then it was absolutely worth it….

IMG_3491
Weekend sunshine

That’s all from me for today so I’ll leave you with a bit of a song for you to sing along to and bid you farewell.

Love you lots like jelly tots, WeeGee xoxox

 

 

 

 

 

*There are LOADS of them, recently

**They were every bit as bad as all that.