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.
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….
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.
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.
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.
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.
I’ll wind up, for now, leaving you with a song and loads and loads of love from my little corner of the universe.
I was a bit of a misery guts in my last post, wasn’t I? It’s a long story, and I’ll write more about it another time but for now – HELLO, it’s me, WeeGee, and I am back on track….
Surgery. The low-down
As you know, this time last week I had my surgery. It didn’t exactly go according to plan – OF COURSE it didn’t exactly go according to plan – but it was, as far as the surgeon was concerned, a success. He managed to remove all of the cancer which was exactly what we were hoping for. HUZZAH.
The operation took a bit longer than anticipated – the tumour had attached itself to a muscle so (LOOK AWAY NOW IF YOU ARE SQUEAMISH) the surgeon had to shave quite a bit of the affected muscle off. There was also more bleeding than expected, even accounting for the blood thinners I’ve been on since the DVT back in April. It took a long time for them to (SQUEAMISH HIGH ALERT) “stop all the tiny nerve endings from oozing all over the place.”
After the surgery was over, it was BLOODY AGES before I came round from the anaesthetic and I had a hard time of it the first time I woke up. In the end it was more than three hours before I was moved from the recovery room back to the ward. I’m told I was quite entertaining that evening, but I wouldn’t know anything about that.
WeeGee and the Great Big BooHoo
The morning after the op was a difficult one. I’d slept badly for a start and, on account of an extremely sore throat, I’d had nothing but a pot of yoghurt to eat for more than 30 hours. I was attached to all kinds of buzzing, beeping contraptions, and it had finally, properly occurred to me that I was going to be leaving the hospital in possession of one less boob than I’d arrived with.
It must sound odd. I mean I knew I was going into hospital for a mastectomy so, you wouldn’t think actually having had a mastectomy would come as a shock, right? But somehow, it did. When I woke up, there was no denying my right breast wasn’t there and in that moment there was absolutely no getting away from the fact that I was knee-deep in treatment for breast cancer. It took me by surprise and it hit me all of a sudden, all at once – not just the mastectomy but the whole of the past nine months: the diagnosis, the chemo, the clot, the infections, the allergic reactions, the pain, the fatigue, the fear, the sadness – and the absolute fucking fury of the whole thing.
So I cried – and by that I mean I boo hoo’d the most spectacular boo hoo I ever have boo hoo’d in my life. I cried for everything that had happened and for everything still to come. I cried for myself and everyone else. I cried for what I’d lost, for what I’ll not get back, and for what I’ll never have. I cried for my disappeared boob and the lonely looking one left behind. I cried because I was starving and I couldn’t face another yoghurt and I cried because TEA JUST ISN’T THE SAME IN A PLASTIC CUP AND WHY DON’T HOSPITALS OF ALL PLACES KNOW THAT?
It sounds terrible, but really it was okay and, to be honest, much needed. A fantastic and extremely kind nurse steered me through it all. She listened as I raged and dried the tears as they fell. Then, when there were no more tears to fall, she hugged the last of the sadness right out of me. She encouraged me to get up and dressed and, once I was all bright and shiny and new, she brought me tea in a proper cup because it’s true what they say – not all super-heroes wear capes.
And that, as they say, was that. A fresh pair of knickers and a decent cuppa later and it was back on my way: WeeGee against the world once more.
One week later
My discharge came the day after surgery, and over the course of a week I’ve eased myself back into the real world slowly but surely. The drains came out a few days later and, while I was thrilled to see the back of them, the less said about the procedure, the better. It truly was the most awful of all the awful things that have happened to me. And I’ve seen my fair share of awful recently. Let’s never talk of it again….
As I’ve recovered, I’ve been surprised by how well I feel, but frustrated by my lack of mobility. I’ve lost some sensation in my arm* and the nerve pain and fatigue from chemo linger on. Nevertheless, I’ve been up and at ‘em – to a lesser or greater extent – every day. My daily ambles around the garden have progressed into strolls around the block, and I’m mostly managing to keep up with the post-operative exercises prescribed by the Breast Care Nurse. I do have some pain, but thankfully, it’s manageable. To be honest, compared to the pain I had before the surgery it barely even registers so I’ve managed to pack away the Oramorph at last. Huzzah!
There have, of course, been a few more tears along the way. When they come, I let them be and they pass soon enough without doing me any harm. For the most part, I’m coming to terms with it all reasonably well. I’ve spent time in the garden with my nose in a book and found solace there. I’ve painted my nails in the brightest shade of pink I could find, and I’ve eaten plenty of good, fresh food. I’ve booked myself onto the next level of the Blaze creative writing course (YAY) and purchased access to two online gardening tutorials. I’ve treated myself to some very excellent new pyjamas, and I’ve listened to a lot of radio four.
I’ve also started to realise my recent focus has been on getting through the physical challenges of cancer treatment. That was fine. I needed to do it like that because I knew I could only get myself this far in a calm, practical, head on, smash-through-it-but-don’t-feel-thing kind of a way. But now I need some time and space to let my thoughts catch up with the rest of me.
I’m fortunate that I can give myself the break I need without any pressure to get back to work and safe in the knowledge that I will be very well looked after by the truly AWESOME men in my life.
Meanwhile, in other news.
Meanwhile, in other news and just in case you were wondering what’s going on with my hair – I’ve got a full head of this stuff although to be fair, not quite enough to occasion a comb just yet.
That’s all from me for today. Now I’ve got the pain under control, and a few weeks off work I’ll doubtless be able to post more regularly so stay tuned for plenty more nonsense from me. In the meantime, I’ll leave you with a song and wish you a happy weekend when it comes around.
Oh – and if anybody needs me, I’ll be busy being busy,
Love you all lots like jelly tots,
*This may, or may not, be temporary, time will tell.
I thought we’d do a quick hair status report before we get started:
Haircut: A smidge off Natalie Portman, circa V for Vendetta.
Eyebrows: Half a dozen each side, multiplying slowly.
Eyelashes: Three. The magic number.
Since last I wrote I have mostly been thinking about 4×4 Porsches. Specifically, I’ve been busy trying to figure out whether people buy Porsche 4x4s because they want a Porsche, or because they want a fancy 4×4. I mean if you’re in a position to be buying ANY fancy 4×4 of your choice you’re going to want a customised Range Rover, aren’t you? And if what you want is a Porsche then surely you’re going to want something a little bit flashy. Showy, even, no? All I’m saying is I don’t know what’s going on in peoples’ heads when they buy Porsche 4x4s. And that’s all I’ve got to say about that. As an aside, I suppose now might be a good time to mention I’m starting to get a bit bored of my sick leave…..
How have you all been anyway? All is well here in WeeGee land. Or at least as well as can be expected when you’re six months into five months worth of chemotherapy. Still, yesterday was chemo number 15 out of 16, which means there’s one more to go! I’m looking forward to being able to tick something off the list at last, but I’m tired and I’m keen not to get ahead of myself. My active treatment won’t finish until at least the end of the year and that means there’s still a long way to go. In my case, the chemotherapy isn’t even the primary treatment – it’s neoadjuvant, literally meaning before the main treatment. My main treatment will be the surgery, and it won’t be until that’s done that we know what we have been and are up against.
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?
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!
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.
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.
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.
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….
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….
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….
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.
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…..
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.
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:
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…..
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.
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
*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.
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.
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.
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….
Since last I wrote I have mostly been being in hospital with, and I shit you not, a bit of a cold. I mean, I’ve always tended towards the overly dramatic but hot-footing it to the hospital with a runny nose? That’s expert level drama queen for you that is.
Of course, I’m making light of it, because that’s what I do, but my temperature peaked at 38.9 and I felt pretty poorly and fed up for a while. The good news is it was NHS to the rescue once again, and with the help of some IV antibiotics, I was home and tucked up in my own bed recovering 48 hours later.
Spending time on the acute oncology ward was a pretty sobering experience and I was reminded of the ‘young, fit and healthy’ tag that has followed be around since my diagnosis: I was the youngest patient by a couple of decades and, on a ward of six people, the only one who didn’t have at least one other serious health condition to contend with as well. Surprisingly perhaps, it was also a much more cheerful place than you might imagine. I met some truly amazing women during my short stay – some of them well into their eighties and all of them facing up to cancer with some considerable aplomb. I hope that when I am old I am half as wise and every bit as brave and forthright as the women I met this weekend. I’ll certainly think of them often as I make my way through my treatment and beyond.
April is the cruellest month
I suppose what I’m really writing to say is that April didn’t quite get off to the flying start I was hoping for….
Before the high temperature/infection fiasco and just when you thought it was safe to get back in the water, my third weekly chemo was called off because I failed my blood test even though I am a swot and I HAVE NEVER FAILED A TEST IN MY LIFE. To be honest, it didn’t come as much of a surprise because I’d been feeling completely whacked since starting the Carbo/Taxol regime a couple of weeks ago. Anyway, the blood results showed elevated ALP levels – possibly indicating that my liver is not coping particularly well with new chemo drugs. Huzzah…..
We’ve done a new set of bloods this morning to see what’s what now I’ve had a week or so away from the chemo and I’m meeting with the oncologist tomorrow to discuss the plan of action. It may well be that the high ALP levels last week were a bit of an outlier and that everything is fine, or we may need to reduce the dose, or perhaps even rethink the treatment plan altogether. I’m hoping for one of the first two, not least because when it comes to triple negative breast cancer, the EC/Carbo/Taxol combination really is gold standard. In other areas of the country there are women with triple negative diagnoses fighting like lionesses to get access to this particular combination of drugs, so it doesn’t feel like something I want to give up on lightly. That said, liver failure doesn’t sound like much fun to me, so we’ll wait and see what the experts have got to say.
Take a break
All things considered I’m in pretty good spirits so there’s no need to panic about that. The doomy gloomies that were starting to gather a couple of weeks ago seem to have blown over and all is calm and easy going here in WeeGee land again. I’ve taken a couple of days out of work to get myself fully better and to keep hold of the sense of perspective that has settled around me. I love my job, and i need to feel as useful as I can during my treatment – but my job can be taxing and stressful at times. The thing is, being an awesome Information Governance Manager can’t be my number one priority right now because that spot is already occupied by taking good care of myself and being as well as I possibly can be. I’m lucky, I have an amazing employer and even more amazing line manager – I have the luxury of being able to take my foot off the gas every once in a while and right now, I think I’m due a bit of a break.
Meanwhile in other news
Meanwhile in other news I’ve finally signed up for the creative writing class I’ve been meaning to get myself involved with since I went to the KU Big Read event featuring Gail Honeyman last October. I loved ‘Eleanor Oliphant is completely fine‘ so very much, and I found Gail’s talk really inspiring. I promised myself that by the time I was 40 this August I would at least have made a start on writing a novel. Step one is the University of Strathclyde’s Blaze course which I start next Monday so, you know, watch this space…..
Nothing else from me today, save to say that if you could keep your fingers crossed for my chemo actually going ahead this week I’ll love you even more than I already do.
I’ll leave you with a tune, which granted, is fairly miserable but it’s also really pretty in its own way, and it’s been my ear worm ALL WEEK so I can’t think of another to share anyway…..
Love you all lots, like lots and lots of jelly tots,