Acronym city limits – BMX2

I had thought about calling this “night before surgery” blog post “BMX2″, but that would just have been too simple wouldn’t it?  Not to mention confusing, if not downright tautologous, with the B standing for bilateral competing neatly with the 2 denoting the second part of this particular surgery blog post.

Quietness on the blog front bodes no particular ill other than NHS-fuelled activity leaving little brain space for what used to pass as normal life.  Here at Schloss G we’ve had a busy month filled with the ongoing fun of random hospital appointments, more Internet research than you could possibly imagine and all interspersed with signing the consent forms for tomorrow’s surgical procedures.

Losing the breast currently hosting an 8cm tumour seemed quite logical to me.  But then the question remained of what to do with a sole FF cup breast.  I might be high maintenance in more ways than one but when it comes to attention to clothes, make-up routine (not something I’ve ever acquired) or hairstyling (I have one hairbrush – what more is there?), I’m low maintenance to the point of maintenance-free.  So the thought of having to put in a prosthesis to balance things up each morning, take it out if I went swimming (or swap it for a swim-friendly one), remember where I’d put it, love it, feed it, wash it, pat it dry and put it away every night, was always going to be a big ask.  Only logical conclusion? Ave atque vale to the previous malefactor: my, currently well behaved, if a little reduced, right breast.

Which gets us as far as the BMX, or bilateral mastectomy, of my last post.

Which you would have thought was enough, wouldn’t you?

But I figured that while I was undergoing the pain and indignity of general anaesthesia, perhaps it would make sense to remove my ovaries as well.  They’re currently switched off each month with a depot injection in my stomach.  Large needle, hassle of getting a nurse appointment at my GP’s on the correct day, hassle of pharmacy never keeping the drug in stock (expensive) and side effects that make the days of rampant PMT seem a fondly remembered joy.  Losing the little buggers 13 years ago seemed like denial of the chance to have children but with 50 fast approaching in September there seems no reason to continue our relationship.

My long-suffering surgeon made a swift call to his opposite number on the gynaecology team and now I’m booked in for a BSO as well as a BMX tomorrow.

BSO really doesn’t do it justice.  I cannot tell you how many times over the last few weeks that the words laproscopic bilateral salpingo oopherectomy have tripped off my tongue.  It’s a beautiful phrase and I don’t think I shall ever tire of it.  Lapropscopic as I only end up with two small, low, abdominal scars and a third cleverly hidden in my belly button. Bilateral obviously for the two of them.  Salpingo, from the Greek salpinx  (slpngks) meaning trumpet or tube, and here referring to those of the fallopian variety.  Oopherectomy is the removal of the ovaries themselves.  Not as exotic as an orchidectomy, but then I don’t have any of those:  it’s late, and I digress.

I confess that I winced when my pithy Lancastrian gynaecology surgeon blithely announced that he’d have no problems removing both ovaries, attendant 3.5cm cyst and my salpinges via aforesaid incision in belly button.  Bear in mind that I’m not squeamish and have just had a PowerPort (central venous catheter – about the size of a bottle lid) dug into my upper chest and its attached tubing tunnelled up over my collar bone and into my jugular vein, all under local aneasthetic and mild sedation.  This, however gave me the collywobbles, but he did point out that I wouldn’t know anything about it until after I came round from the general anaesthetic and helpfully added that I’d have other things to worry about: the BMX, clearance of lymph nodes from my armpit and chest and the shoulder pain from the carbon dioxide that they use to inflate me for the LBSO (sounds more like an orchestra doesn’t it – London Borough of Southwark Orchestra anyone? – perhaps it’s more about trumpets than we’d assumed).  Who’d have thought that my belly button, redundant for the best part of fifty years, would once again assume vital importance?

I’m heading for a last night of sleep as a virtually intact person.

Good night, God bless and if you’re of a prayerful persuasion then St Agatha’s got to be worth a go.

Posted in Mastectomy, Surgery, Treatment, Uncategorized, Updates | 9 Comments

BMX

As a teenager growing up on the not so mean streets of Hounslow, a BMX was a type of stunt bike ridden by parka-clad pre-pubescent boys mourning the closure of the local skateboard park.  However, in the parallel universe inhabited by the cancerous we discover that BMX is breast cancer bulletin board shorthand for bilateral mastectomy.  Shame – I was looking forward to joining the kids over on the dirt track in Brockwell Park now that the sun’s shining.

I had planned that this next blog would be a pithy missive on the surreal experience of shopping for one’s own coffin.  For the moment we’re hoping that it’s not too urgent an item on the shopping list so hold your breath and I’ll get back to coffins another time.  However living with cancer means that you have to get used to changing direction when you least want or expect to and my most recent meeting with my oncologist finds the goalposts, yet again, on the move.

Firstly, it was a pleasure to see him: we’ve known each other a while (thirteen years since my first diagnosis) and formed a good patient-professional working relationship based on plain talking and mutual respect.  We’ve also worked together over the intervening years with me as breast cancer patient advocate and him as patient champion and critical friend.  Despite my having been a thorn (perhaps a needle allusion would be more apposite for the NHS) in my local Trust’s side for most of that time, the multi-disciplinary team’s not so much holding it against me as taking me under their collective wing.

So it was a bit of a shock when he announced that he’d like to look at treating me / the cancer (we are fairly indivisible from the point of view of medical intervention) more aggressively.  We discussed chemotherapy, but as we both agreed, it’s a therapy that works by destroying fast growing cells and my tumour (whilst still intent on bowling me out) has, to date, been going about it at a sedate pace.  Chemotherapy might not be the most efficacious treatment just now.

How did I feel about mastectomy?  Straight up initial reaction?  Surprised that I’ve got this far with my breasts more or less intact.

To be honest I’ve always had an ambivalent relationship with my breasts.  Yes, I’ve luxuriated in the womanliness that they confer, but there’s no doubt they’re inconvenient. Having narrow shoulders and large breasts means that I either look like I’m interviewing to serve behind the bar at the Rovers Return or more usually as if I’ve borrowed my Mum’s gear from the dressing-up box.  It doesn’t help that fashion is best suited to 6ft beanpoles rather than dwarf pumpkins. I still wonder to what extent the reports of designers fitting their dresses on teenaged boys are apocryphal.  The more literal downside is the gravitational pull that comes with age, despite a lifetime strapped into heavy, support bras.  Sunbathing topless has always been a challenge because they sag so much that I end up with more white patches than had I been wearing a bikini top.  Sex kitten?  Moi non plus!

I managed to escape with a lumpectomy (losing about a quarter of my right breast) last time around, and have used the intervening years and the intervening bra space, not for a prosthesis but for tissues, phone, Oyster card and door keys (you’re now getting an idea of the sort of scale I’m talking about).

So in one way it will be a lot easier, but if I engage my emotional brain (not my default modus operandi as an INTJ) it will be a lot different.  No oestrogen, no breasts, what’s left that makes me a woman?  And don’t even think about sex because that got taken off the board with the oestrogen.

Left contemplating a front that’s flatter than Mr G’s, my biggest fear is of looking like a middle-aged man in silhouette (although minus the moobs).  Perhaps they can take my midriff bulge and instead of using it for a reconstruction just dispose of it?  Now there’s a thought.

For anyone who recalls the surreal days of the Ravenna chorus tours here’s a call to action:  Sven, Russell – lend me your socks…………

Posted in Mastectomy, Surgery, Treatment, Uncategorized | Tagged , , , , | 7 Comments

Spicule (n) spikjuːl – a new word for my vocabulary

Followers of the Uxbridge English Dictionary might posit that this blog refers to the rustic, Spanish Christmas I’ve just enjoyed:   castanets instead of crackers, morcilla rather than mince pies and paella replacing parsnips and turkey.   An enticing tableau but sadly not an accurate one.

I love discovering new words but spicule is one I’d rather not have incorporated into my vocabulary: at least not in this context.  It transpires that when bone knits and heals (and sometimes when it’s just hanging around doing general bony type stuff) instead of forming smoothly, small needle-like protuberances can spring up.  Apparently this is quite usual, especially following tooth extractions: however, they’re not much fun as they fight their way through your gums..

A couple of weeks after losing my molars, just as the prospect of eating was becoming less traumatic, I noticed a small, painful bump on my upper front gum.  Anxious that all wasn’t quite well and that the bisphosphonate treatment shouldn’t be delayed any longer, I referred myself back to the special dentistry department at the hospital.  They (kindly?) split open the gum and filed down aforesaid spicule with a scary piece of kit: halfway between a carpentry plane and an emery board.

Painful and annoying but good to go one would now assume.  Wrong on so many fronts.  The week before Christmas found me with three more of the blighters on the front of my gum and a couple on the inside of it.  Quick trip to my own dentist and 21st December had me back in the chair being sliced, filed and stitched.

Christmas was mainly liquid!

Dissolvable stitches (which don’t do what they say on the tin) have just been removed so hopefully there’s nothing on the dental front to stop the introduction of those good old bisphosphonates for my bones.

So, five months from diagnosis and following two and a half months of dental treatments, B-Day (that’s for bisphosphonates not Birthday) hopefully hoves into view.  We’ll know a bit more when we get the results from the latest round of scans (MRI, bloods & CT) at next Monday’s oncology appointment.

Here’s hoping and we’ll keep you posted.

In the meantime, here’s another quasi-cancer-related UED definition: lymph (v) to walk with a lisp.  Now if that doesn’t sum up the side-effects to date, I don’t know what does!

Posted in Bisphosphonates, Side-effects, Teeth, Treatment | Tagged , , , | 3 Comments

Cancer stole my teeth

Following on from “an eye for an eye, teeth for a breast”, the best I could do on calculating the odds went like this:

Odds of getting primary breast cancer (aged 36) = 1 in 215

Odds of getting primary breast cancer (aged 48) = 1 in 50

Odds of getting metastases from 1st occurence = 1 in 4 (with the proviso that this is a random guesstimate as, in the UK, there is no requirement for the NHS to record numbers of women presenting with secondary breast cancer, so no-one knows how many of us are out there)

Odds of getting metastases from 2nd occurence = 1 in 4

Odds of needing bisphosphonates = 100%

Odds of getting BONJ on oral bisphosphonates = 0.7 in 100,000

Odds of getting BONJ on IV bisphosphonates = 1 in 10 (and this probably increases over duration of treatment)

Median survival time after diagnosis of bone metastases  = 2 – 3 years

Long tail (outliers’) survival after diagnosis of bone mets = 10 years +

Odds of getting BONJ with crap teeth?   this is where you need the PhD in research and stats, because the numbers either aren’t out there or are way beyond my A level maths capabilities.

All of the above figures and statistics are my own take and best guesses based on extensive web-based research and double-checking with dental and oncological specialists, with the exception of the number of women living with secondary breast cancer, which comes from the Task Force on Secondary Breast Cancer.

So my final logic went a little like this: Do I want to get BONJ? No.  Am I hopeful of outliving the median of 2 years?  Hopeful, yes, whilst remembering that there are no guarantees (stark figures mean that if half the women exceed 2 years half don’t).  Have my teeth always been dodgy?  Yes.  Which rather boxed me into a corner.

Having forfeited a number of molars from my overcramped jaw as a teenager in a vain and abortive attempt at gaining a straight smile, then losing my four wisdom teeth as a student, I already found myself with 8 fewer molars/pre-molars than your average bear  [at this point a dear friend, who kindly but foolishly agreed to sense-check my first blog outings, has pointed out that brown and polar bears have 42 teeth – it really is amazing what you learn on a cancer journey!].

Even my molar roots have attitude....

My own dentist suggested I lose one or two more and the special care dentistry people at the hospital kindly removed three, whilst also admitting it’s a gamble, who knows, and did I know that BONJ can also start spontaneously disregarding the state of your teeth?  Deep and unabiding joy.  Which leaves me gummy, s(h)ibillant, virtually bite-less (only one top and one bottom molar match up, giving me a chomping area about the size of a stunted peanut), contemplating a forward life of mushy peas, ice-cream and smoothies, and not a little bit bitter and depressed about the whole caboodle.

If, like me, statistics left you cold at school then here’s a footnote on medians, just one of the many, far too technical resources I came across before resorting to bribery (old mate + beer + simple explanation)!  Usefully called intuitive biostatistics.  Obviously my intuition has exited stage left pursued by aforesaid bear, my health and increasingly my sense of humour.  Ho hum!

Posted in Bisphosphonates, Side-effects, Statistics, Teeth, Treatment | Tagged , , , , | 1 Comment

Eye for eye, teeth for breast

In an absurdly Pollyanna-esque way I’m considering myself lucky to have bone mets rather than distant spread to visceral organs (bar some small spots on my lungs; my liver and brain scans have been clear—so far so good). Compared with when I was treated first time around, therapeutic intervention (how they try to fix and/or halt things) has come a long way – mainly in the form of hormonal drugs and bisphosphonates.

But there’s a down side to everything: not to mention a yard and a half of side-effects.  Whilst the bisphosphonates (which I’ve not started yet) are great news for my bones, there’s a rare side effect called bisphosphonate induced osteonecrosis of the jaw, or BONJ.    Rare, I’m told, but to be avoided at all costs as not curable, hardly treatable and above all not nice.  Rare if you take the drugs orally for osteoporosis (like my mother-in-law and possibly millions of women around the world).  Much less rare if you’re going to take them intravenously every 3-4 weeks for advanced breast cancer.  And much, much, much less rare if you have also happen to have advanced peridontal disease (commonly known as crap teeth & gums) – which, of course, yours truly has.  Sometimes it’s not so hot to belong to a niche subset.

Hopefully BONJ can be avoided if you also avoid tooth extractions for the rest of your life (even if you stop the drugs they have a half life of some 10 years or so, helpfully hanging around in your bones – way above most advanced breast cancer life expectancies).  So then I have to guess how long I’m going to live, how long I’m going to need my teeth for, and then have all remedial dental work for those next years done in advance of bisphosphonate treatment.  Ah yes, the gambling aspect of cancer.  Betting on a game where you’re not even sure what the sport is and who the players are, and where the odds are incalculable.  If only the results were as clear as “if six cows could eat a bale of hay, how much could sixty eat?”

I recognise that my need for information, research and resultant calculations are vain attempts to create order and the illusion of control in an otherwise uncontrollable environment.  But what the hell?  It’s part of who I am.

I came into this latest relationship with breast cancer expecting to lose my left breast.  Who would have known that five months on I would still be filling my bras but minus three of my much needed molars? Can you see what I mean in the gambling analogy about not even knowing what sport we’re playing?  There was me thinking it was breast and cancer and lo and behold it’s all about bones and teeth.

Perhaps then not a case of eye for eye, tooth for tooth, but more a case of “if any mischief follow, then thou shalt give life for life, eye for eye, teeth for breast”.

Posted in Bisphosphonates, Side-effects, Teeth | Tagged , , , | 2 Comments

Why Sarah Bucket?

I’ve been talking about writing a blog for so long now that I don’t think anyone thought I’d ever get started.  So, seizing the, somewhat overdue, moment I logged on via a bad mobile signal on my ‘phone and was immediately confronted with the need to choose a name for aforesaid blog.

Panic!  Hadn’t thought this bit through.  Almost logged straight back off again. Then I just went with the first thing that popped into my head:  Sarah Bucket.

And that was all I managed before I lost the connection.  So Sarah Bucket I am and here we are a couple of weeks later, trying to explain that random moment.

I knew I didn’t want to use a combination of my first and surname, the first is too common and the latter is too long.  Abbreviations really aren’t my cup of tea and despite Susan crying “Illingpig, Illingpig” in my mind’s ear from the other side of the world, it really wasn’t the right feel for this particular communication.  (But you can follow me as illingpig on Twitter if you feel the need).  And thence sprang Sarah Bucket.

I discover later (having taken the time to search the Internet – foresight, or even spur-of-the-moment-sight, being such valuable, not to mention unobtainable, commodities) that a bucket list is a “things to do before you die” list.  So, apposite in its own annoying way, but not why I chose it.

When I was little I had a fascination with water and buckets.  This particular vintage swimwear and bucket, which I’m modelling on one of Broadstairs’ beaches, is from the middle of 1964.  Whilst the bucket fascination has dwindled, I spent the early part of my life being serenaded by my parents with the chorus “Sarah, Sarah Bucket, Queen of Wells House Road” to the tune of “Davy, Davy Crockett, King of the wild frontier”.  We must have had a television as it’s a theme tune but it sounds as if we also made some of our own entertainment.  If you’re not old or sad enough to recall the tune then take a trip inside my juvenile brain here

So Sarah Bucket I was and Sarah Bucket I remain.

I realise that it could represent other things. Dylan’s “Buckets of rain, buckets of tears” or perhaps my very own bucket list (more on that later).  I was just coming up to two years old when that photo was taken and now I discover that the median life expectancy for those, like me, diagnosed with metastatic breast cancer in their bones is also two years.  I received my diagnosis on the 1st August this year, 2011, so my clock’s already ticking.

Looks like I’d better stop the procrastination and start working on that list.

Posted in Background, Bucket list, Musings | Tagged | 2 Comments