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.
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?
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.
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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.
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.
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.
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!
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 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.
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.
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.
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….
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.
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 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….
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!
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.
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.
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:
I bought all these books today for less than TWELVE GREAT BRITISH POUNDS from the Oxfam book shop in Harborough. Huzzah!
And mowing lawns:
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…..
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.
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?
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.
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….
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….
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…..
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!
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.
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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.
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…..
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.
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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.
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.
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.
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.
Since last I wrote I am pleased to report that absolutely NOTHING of note has happened. There have been no mishaps, mix-ups, mad dashes to the hospital, or major disasters. There haven’t even been any minor disasters. In fact, when all’s said and done it has been calm, quiet, relatively plain sailing weather here in WeeGee land for ooh – at least three whole days. Needless to say, I made the most of it:
Plain sailing weather on Easter SundayPlain sailing weather the Easter Monday edition
And before anybody asks. Yes: I did move, you can tell by the change of clothes and no: I don’t regret a single minute of my lazy weekend in the sun. It was grand. Just what the doctor ordered, thank you very much.
The best laid schemes o’ mice and men (gang aft a-gley)
My last few posts have been a bit functional – a thing would happen, and then I would have to write about it, because when I get to the end of this particular chapter of my life I want to be able to look back through a record all of the things that happened during it. The past four months have been very strange indeed, and while it seems unlikely that I’m going to forget any of it in a hurry, I’m sure in years to come there will be small details that I’ll be glad I took the time to write about. Small details have a habit of escaping from your memory if you don’t put them somewhere safe.
That said, there is more to this chapter of my life than the things that have happened and the small details I hope to remember in the future. There are all the things I have learned along the way – about myself, about human resilience, about hope, and about how important the future is. Then there’s the stuff I’ve learned about kindness, friendship, fragility and even, in a strange and not particularly religious way, about faith. I hope to find time to write about all of those things in the fullness of time.
And then there are all the things I have learned about living with cancer. Nobody becomes an expert on living with cancer, mostly because it isn’t the kind of thing you want to devote enough time to make you an expert. But if you get cancer you just have to find ways to live with it and once you’ve found them, I don’t suppose it does any harm to pass them on to others in case they (or the people they love) need to know about them. Back in January, when I revived my blog, I hoped I’d be able to fit a bit of that into my writing too.
The trouble with chemotherapy is that it has a habit of stuffing up your plans – having extra time on your hands is one thing. But having extra time on your hands and being awake all at the same time? Yeah – that’s another thing altogether…..
STOP THE PRESSES though because I have time on my hands today and I am very definitely awake so I thought I would take the time to share the depth of the knowledge I have acquired on……. dum, dum, dum: living with cancer related hair loss.
Sounds like fun, right?!
Living with cancer related hair loss
Back in January I wrote about the process of shaving my hair off. For me, it was an important decision and formed part of a narrative about control that I wanted to build around my cancer diagnosis and treatment.
I know I’m stating the obvious, but I am not a doctor. I mean sure, I can google medical stuff* and I have enough smarts to make a reasonable fist of understanding some of the clinical literature but at the end of the day, I don’t have the specialist education or skills to figure out how to treat my cancer or make me better. I kinda need an oncologist to figure that stuff for me. Luckily, there are plenty of oncologists on hand to do just that, but I have to relinquish almost all of the control and do exactly what they tell me to do, when they tell me to do it. Against that backdrop, exercising what little control I can has become very important to me. And the first opportunity I got to take a bit of control was related to how and when I lost my hair.
As an aside here, I think it is important to go back and repeat a point I made a while back and it is this: not all chemotherapy drugs cause hair loss. It was certainly an assumption I made, but I’ve met lots of people at the chemo suite with full heads of their own hair still growing very ably. I’ve also noticed my own hair starting to grow back (although only ever so slightly) since switching to the new chemo drugs which are slightly ‘gentler’ than the big guns they went with in the first instance. If you ever find yourself having to have conversations about chemotherapy – and I hope you never do – it might be worth investigating whether you are actually likely to lose your hair before you enter a period of official mourning for it.
But, as things stand, almost all the chemotherapy drugs currently used to treat breast cancer will cause at least some degree of hair loss. There’s no way around this at present – if you want to stop the breast cancer cells from dividing, the drugs that do this will kill off the hair follicles too. From fairly early on, I knew I was going to have to get my head around losing my hair.
Of course, it isn’t just the hair follicles on your head that are affected by the chemo: IT IS ALL OF YOUR HAIR. Which is neither all bad, nor all good. I mean, I miss eyebrows on a daily basis and there are Shakespearean levels of tragedy (or comedy, depending on your mood) to be found in trying to put mascara on your TWO REMAINING EYELASHES, but I haven’t had to shave my legs since before Christmas and overall, I’ll take that.
To cold cap or not to cold cap
In some areas of the country, including where I live in Leicestershire, women undergoing chemotherapy for breast cancer are routinely offered access to a device known as the cold cap. In layman’s terms, the cold cap freezes the hair follicles, protects them from the ravages of chemotherapy and in some cases, stops the hair from falling out. There aren’t, as far as I can tell, any particularly reliable stats on how effective the cold cap actually is. Anecdotally, from the support groups and women I’ve come into contact with, I think the best you can say is that sometimes it works, and sometimes it doesn’t work.
I was offered the use of the cold cap. I decided against it and now HERE I AM, four months and one baldy head on. It really isn’t one that I regret.
In the end, for me, the decision was a relatively straightforward one. For a start, the cold cap adds quite a long time on to your treatment slots. When I was having the EC treatment I was usually in and out of the chemo suite within an hour and a half. With the cold cap I’d have been looking at more than double that. For another thing the cold cap FREEZES your head. I’m not even kidding – it actually freezes it, as in, when you take it off there are ACTUAL ICICLES on your head. I’m not a big fan of being cold at the best of times but in the end, the thought of ACTAUL ICICLES growing on my head was a pretty key factor in my decision making process.
Finally, there are no guarantees with the cold cap. When I weighed up the extra time on the chemo suite whilst ACTUAL ICICLES were growing on my head against my emotional attachment to my hair and then factored in the fact it might not work anyway I just couldn’t make a case for trying the cold-cap. For me – and this is very personal – I decided that it would add further distress and suffering at a time when I needed to make things as easy as I could on myself.
The cold cap just wasn’t for me. I accepted I would lose my hair, shaved it off and somehow, found a way to get along in the world as a baldy woman. Do you know what? I don’t even hate it.
Getting wiggy with it
I got my wig before my hair had fallen out. There are various schools of thought on when the right time to buy a wig is – before treatment starts, during treatment, with a full head of hair, partial head of hair or no hair at all. In the end I think you just have to do what works for you. Personally, I wanted to have my wig to hand straight away in case I discovered a traumatically weird head under my hair. Turns out the head was all quite normal under the hair but, you know, be prepared has always been my motto.
I went for a style that was similar, rather than exactly the same, as my natural hair in the hope that it might sort of trick the eye and lead people to think I’d just had a new hair do. The salon was a personal recommendation from a friend of my mum’s who had also recently had occasion to purchase a wig. I can’t stress enough how important it is to go to a good wig fitter (or ‘hat with hair’ fitter as my chap called himself). If you can get a personal recommendation so much the better, but if not take your time and do some research.
Help towards the cost of a wig is available but it is based on income and I was only entitled to the standard VAT exemption for people being treated for cancer. I didn’t end up with a cheap wig but we also didn’t quite go to the extent of investing in a real hair wig. The difference in price is pretty phenomenal and the advice I got at the time was that the investment wouldn’t necessarily pay off. Plus, I’m reliably informed that real hair wigs are a pain in the bum to care for. Overall and in all honesty, I don’t know if it really matters how much you spend on your wig but I have been warned against the temptation to buy cheap ‘fashion wigs’ from eBay so I thought I might as well pass that particular tip on.
My own experience of choosing a wig was absolutely fantastic. I walked in, the lovely chap took one look at me, produced a wig and put it on my head. That was the wig I walked out of the shop with. It was perfect.
As for my thoughts on wearing a wig? I guess it has taken me quite a lot of getting used to. It makes me looks surprisingly like my mum, which is fine, of course, but disconcerting nevertheless. I struggle to regulate my temperature a bit and tend not to wear it unless I can be sure about how hot (or not) it’s going to be. My fears of it blowing or falling off passed eventually but I do find it hard not to fuss around and fidget with it to make sure it’s straight. And there’s nothing sexier than a woman yanking her wig a few centimetres to the left as she walks up the road is there?
My overwhelming feeling when wearing my wig though, is that of someone attempting the ingognito vibe. I don’t know whether other people can tell whether I’m wearing a wig or not, and to be honest I don’t much care. But I do occasionally feel like I’m dressed up as a character from guess who, or that I’m wearing some kind of comedy disguise. And I’m not entirely sure how I feel about that…..
Guess who? Comedy disguise? You decide….
Fifty ways to tie a headscarf
Spoiler alert! I don’t think there are actually fifty ways to tie a headscarf, but then again I don’t think there are actually fifty ways to leave your lover either. And I’ve been singing that song for days now so I should know.
If the wig has remained a work in progress, I have very definitely embraced the headscarf. I’ve come to take the whole headscarf thing pretty seriously – I have squillions of the things in a range of colours, patterns, fabrics and shapes. Overall, I find you need plain scarves to go with patterned clothes and patterned scarves to go with plain clothes. As a natural brunette I don’t suit particularly pale scarves and white scarves are a complete no-no: I end up looking like the walking wounded with bandages tied around my head. Apart from that anything goes, although I prefer styles that tie to the left hand side for some reason. Oh – and I absolutely cannot get away with any kind of top-tying/turban style unless I fancy the 1950’s housewife, or Professor Quirrell look. Which usually, I don’t.
WeeGe or Professor Quirrell? You decide
I’ve been thinking lately about how I’ll miss the headscarves when it’s time to hang them up for good. I think I’ve come to see them as a badge of honour, or perhaps, more accurately as a suit of armour. They sort of mark me out for what I’m going through, but also cocoon me from the worst of it…. I don’t know.
Hey, I’ll tell you what though? Once all of this is done with maybe I’ll just go right ahead and turn into the eccentric middle aged woman I’ve always secretly wanted to become and keep on rocking the headscarf regardless.
Wherever I lay my hat
Hair loss is probably the most visible consequence of receiving chemotherapy and, in its own way, it’s challenging. For my own part, I don’t so much mind being baldy, but I have at times, felt really quite low because I don’t look like myself anymore. It’s an important distinction and not one that would necessarily have made sense to me before my treatment started.
As far as I can tell, some people have an incredibly strong emotional response to their chemo related hair loss before it happens, some respond while it is happening, and others once it’s all gone. I’ve wondered if perhaps I’ll have the strongest response of all when it starts growing back. I find it odd, and not at all comforting, that when it does grow back it will be DIFFERENT. It will be thicker, coarser, very likely curly and one way or another unruly for at least a year while my hair follicles recover from the battering they’ve had.
My biggest fear though? I admit that this is pure vanity but I’m scared it will grow back grey. I am after all, a woman of a certain age now……
But we draw a line under that and move on. This isn’t a post about living with the mad chemo curls that might grow back in a few months time. It’s a post about living with cancer related hair loss. As I reflect on what it has meant for me I can’t help coming to the conclusion that whilst I would much sooner have kept a full head of hair throughout my treatment if it had been comfortably possible, losing my hair hasn’t even been close to the most difficult thing about my diagnosis or my treatment.
Losing my hair was a small, inevitable detail, the price of which pales into insignificance when I think of the future it is designed to buy me. That’s the thing about cancer – you find opportunities to suck it up and look on the bright side in pretty much every situation. Including being a baldie wee woman…..
And that’s all I’ve got to say about that.
I’ll leave you with a song (sorry, I could only find an audio version) and promise that we’ll catch up again soon,
Love you all lots, like jelly tots
WeeGee xoxoxo
*Top tip: don’t google stuff when you’ve got a freshly minted cancer diagnosis.
Since last I wrote things haven’t exactly been going to plan but let’s face it – things not exactly going to plan is hardly even news here in WeeGee land anymore.
Much like my life at the moment, this cake didn’t exactly go according to plan
The long and the short of it is that these was no chemo for me again last week, but that everything’s back on track again now and as of Friday, I’ve started with the Carbo/Taxol combo again. There was the small matter of the COMPETELY UNNECESSARY mad dash to the hospital with a swollen arm somewhere in the middle of it all but we can put that down to an over cautious district nurse and NEVER SPEAK OF IT AGAIN.
Anyway, once the Registrar had given me the all clear to take myself and my only very slightly swollen arm home TEN MINUTES after arriving (don’t mention the FORTY MINUTE journey there) I found myself in Leicester on a sunny Wednesday afternoon. I decided to have a poke around some of the city’s cultural offerings so at least the whole trip wasn’t a complete waste of time.
New Street Museum and Art Gallery, Leicester.
In the end I had a three-week break from chemo and truth told, it was pretty frustrating at times. I’d just gotten my head around the whole weekly chemo thing only to have it postponed two weeks running. Even now, more than four months on from the diagnosis, I still feel like I spend half my time waiting for my brain to catch up with the reality of what’s going on around me. In the space before chemo got going again I found my thoughts racing ahead of me, focusing on the next steps – the surgery, the radiation therapy, life post treatment. It was exactly what I’d promised myself I wouldn’t do: this fight is very much about looking at what’s directly in front of me and dealing with it, but I had spare brain capacity and time on my hands. Thankfully Mr Awesome Thing Number Five noticed the doomy gloomies starting to gather (again), and with a little help from my nearest and dearest, made sure I got out and about in good company, with my chin firmly up once more.
I can’t claim the break was all bad news because – and here’s the thing – I probably really needed it. I was well and truly whacked from the infection debacle that landed me in ward 39 a couple of weekends back and I needed to rest. By the end of the fortnight off I felt better than I had for a very long time. It’s a strange thing – chemo. You can never quite be sure whether you’re feeling chemo shitty, or, just plain old fashioned shitty. On reflection I think the infection may have taken a little more out of me than I had first thought and a lot of what’s been going on recently has been shitty of the plain old fashioned variety. In all honesty I’m maybe a little bit glad I got the extra time to recover. As I write, pretty much 24 hours after the chemo I’m feeling tip top, and I reckon only about half of that is the rather hefty dose of steroids I took this morning.
The arrival of some good solid sunshine here in the UK is very welcome indeed especially arriving, as it did, just in time for the long Easter weekend. My Easter didn’t exactly get off to the most festive of starts what with spending Good Friday in the chemo suite getting five hours worth of poison pumped into my veins and all but hey ho – at least I got a window seat and a table to unpack my little picnic this time round:
I can’t remember if I’ve written about the process of getting IV chemotherapy before perhaps because there isn’t all that much to say. It’s pretty boring, and pretty routine and the ward can be pretty solemn. I think everyone is mindful that everyone else is doing their own best to get through what they are going through in their own way. I guess you find that you go out of your way to be quiet and respectful. From time to time you strike up conversations but you really have to gauge it quite carefully so as not to trample all over somebody else’s coping strategy. Aside from that my top tips for chemo are quite straightforward– take a book or something to occupy you, headphones and snacks. Then all you’ve got to do is lie back and think of Scotland* – it really isn’t as bad as you think it’s going to be. If it wasn’t for the combination of pre med antihistamines and the alcohol content of the actual chemo drugs you’d probably be quite capable of driving yourself home afterwards….
Now the weekly chemo is done with I’ve got a fairly pedestrian Easter weekend planned, even though I feel completely fine. I mean, there’s no need for heroics here, is there? In view of the liver scores a couple of weeks ago I’ve been instructed to lay off the drugs, alcohol and rock and roll lifestyle INDEFINITELY. In years gone by that might have scuppered a perfectly acceptable Saturday night. Alas – times have changed and all I ever really had my eye on for tonight was a nice glass of Robinson’s summer fruits, a couple of ibuprofen and the second ‘Fantastic Beasts’ film on the telly box. I don’t know if it’s a chemo thing, or a nearly forty thing but I don’t mind either way. The rest of the weekend has been given over to sitting in the garden (with a generous slathering of factor 50 like all good chemo patients), writing, reading and polishing up a cool brass planter I picked up in an antiques shop a while back. Who knows, I might push the boat out and do a bit of weeding in my newly acquired garden – time will tell.
A slightly better view than yesterday
I think that’s all from me folks. It pretty much brings you up to date with the goings on here in WeeGee land, which granted aren’t exactly laugh a minute. What can I say – thanks for sticking with me! I’ve got all kinds of more entertaining posts planned, but I like to make sure we’re all up to date on the serious stuff before we get on to the fun stuff again.
Speaking of fun, the creative writing course I mentioned in my last post started on Monday and seems to be shaping up quite nicely so far. Over the next ten weeks I’ll be publishing the various snippets of creative writing that I put together during the course here, if anyone is particularly interested in reading them….
How do you eat an elephant? 