Month: January 2011

Looking surgery in the eye

A dear friend commented a little while ago that this blog was ‘sort of reminiscent of a war correspondent, even a travel writer, on a dangerous but important commission’. Like a travel writer, I’m not the first person to explore the Tropic of Cancer, and I have maps and guidebooks to help me navigate the rather rocky, hilly terrain and anticipate what to expect.

But this week I had one of those unfortunate travelling experiences where you think you’ve got the measure of the exotic location you’ve ended up in and then something rubbish happens to rub in just how much of an inexperienced tourist you really are.

Me and DH trooped along to our meeting with my surgeon, the lovely Tracey on Tuesday. I wasn’t looking forward to it – I had sobbed throughout our previous meeting, a few days after I was diagnosed – and I had prepared some questions to ask. I wanted to know what the risks were if we didn’t remove the pre-cancerous calcium deposits (ductal carcinoma in-situ, or DCIS), ditto more lymph nodes than the one that was actually enlarged. In other words, I wanted to know the minimum surgery we could get away with, especially since the ‘active’ tumours are responding so brilliantly to the chemo.

After my notes were finally retrieved from the depths of the oncology department, nearly two hours after our appointment time, she examined me, and then we started having a chat (with me still naked to the waist but with my boots on, which is rather a weird and disempowering position to be in while having a natter with anyone, let alone a surgeon who quite literally holds the future of your body in her hands).

Once I’d got my clothes back on, let’s just say my 16 years of National Insurance contributions may not have covered the cost of the tissues I got through. For the next hour, a series of little shocks were accompanied by tears, snot and a spontaneous nosebleed (my nose has bled every day since my first chemo). I’m going to do a list here, forgive me for going all PowerPoint presentation on you:

1. In answer to my question ‘what happens if we don’t remove the DCIS? What percentage does actually turn cancerous?’, Tracey took a deep breath and explained that while there was a lot of stuff in the media at the moment about over-treating DCIS (which doesn’t respond to chemo as it’s not cancer yet, so the only treatment is surgery), that was about low-grade DCIS. I don’t have low-grade DCIS. I have advanced DCIS that is probably only a burnt sausage away from turning into another tumour. I didn’t know this. I thought it was closer to benign than cancerous, and not terribly serious.

2. In answer to my question about how many lymph nodes she was planning on taking out, she said ‘all of them’. My entire lymph system under my right arm, around 20 nodes. Lymph whisks toxins away, drains excess fluid and is a crucial part of the immune system (those swollen glands on your neck you get when you’re unwell are lymph nodes too), so I’m not at all keen on this. I asked why she needed to remove all of it and she said because I had cancerous cells in one enlarged node, there was almost certainly cancer in many of the rest of them, and it was ‘standard treatment’ to whip the whole lot out. I did tackle her on this: just because something is ‘standard’ doesn’t mean it’s right for me, after all. She clarified this by saying according to all the evidence, the best way of ensuring that cancer that has already spread to the lymph doesn’t get carried around the rest of the body is to remove the whole kit and kaboodle. I didn’t know that.

3. I asked what my breast would look like after the reduction surgery, given that she needs to remove a margin of healthy tissue around the DCIS and also around the area where the tumours were. She explained that we were talking about a lot of breast tissue, and so we were looking at a B cup. That’s quite a drop down from a DD. For someone who’s been a curvy girl forever, that’s going to take some adjusting to. But OK, fine, I can keep my own nipple, so at least it will still essentially be my own boob, just a smaller, perter version. And the other one will be resized to match? Yes, but not for three months. Whaaaa? WHY??? Because you can’t get a good cosmetic result on the other size trying to match it with something that hasn’t settled down from the surgery yet (apparently the nipple starts off looking excessively pert like it’s going to poke your eye out, and then everything settles into its new position after 12 weeks or so). So when we go on holiday in June I will be quite dramatically lopsided and need one of those mastectomy swimsuits? Er, yes. I definitely didn’t know this.

4. And while we’re on the subject of mastectomies…When the sample of tissue around the DCIS comes back from the lab, it’s possible that the margin of healthy tissue will be a bit on the narrow side because you can’t see or feel it – the area will be mapped out with wires based on scans so effectively Tracey will be flying blind. If this is the case, we might have to convert to a full mastectomy and reconstruction. And the bionic boob still can’t be as big as the other one (because of the limits of the ‘skin pocket’ – too much technical detail for me so let’s not go there, this isn’t an episode of Holby you know). You’ve guessed it: didn’t know that either.

5. Oh, and then I’ll need radiotherapy. Nooo! Brand new information! Loads of targeted radiation at the hospital every other day for five weeks! Bloody hell. No-one had mentioned this to us previously, not once had it been mooted. So again, I didn’t know that.

Spot a pattern anywhere? It was just like a series of little explosions. It wasn’t an amazing view anyway, and the landmines didn’t exactly pretty it up.  I don’t know what I was expecting, but it was something along the lines of one op, both sides at once, slightly smaller boobs, bish bash bosh, holiday to celebrate my cancer ‘experience’ being over. And that’s not what it’s going to be like.

I’ve always been a bit confused by the expression ‘the map is not the territory’, coined by Polish American philosopher and scientist Alfred Korzybski, known as the father of semantics. (It’s an expression that’s used a lot in life coaching, specifically NLP.) On Tuesday, I realised exactly what he meant. It doesn’t matter how much research you do, how many guidebooks you look through and how closely you try and follow the ‘map’ of your life. Things just are what they are. Wanting – or assuming or imagining – them to be otherwise doesn’t make them so. The only answer is to actually walk the territory, one step at a time. And try not to trip over and fall flat on your arse.

Right now, I have a sore metaphorical bottom, if you can imagine such a thing. But I’ve had a couple of days to adjust. I’m starting to process this new info and deal with it. And soon I’ll go from stubborn resistance to acceptance. Then at some point the next phases of my treatment will start to feel like my choice. So I’ll pick myself up, dust myself down, and get on with enjoying the kiddies, work, social stuff with friends and a couple of weeks of normal before chemo cinq on February 11th. Pass me that brochure, I need a holiday to look forward to…

Four out of six ain’t bad

I had my fourth chemotherapy session yesterday. It all went swimmingly, apart from a ‘cannula incident’ (you don’t want to know) that delayed things a tad. On the plus side: 1) only two chemos left to go – that’s only six weeks left! 2) my gorgeous old school mucker J trekked up from Winchester to spend a couple of hours filling me in on seriously good gossip, laden with treats 3) my darling sister, my rock, brought me a delicious healthy lunch and was, as ever, the bestest company 4) DH got me home by 4pm in time to give the babies a big squeeze and wave them off to Salisbury for their customary weekend minibreak.

We’ve swapped things round this time, with DH’s parents doing the chemo day/weekend childcare admin, and my mummy and Pops bringing them home on Sunday night and staying for a couple of days to look after us all. I still can’t believe how blessed we are to have this level of support from our families. I know they love having the kiddies, and it’s wonderful that they are all so close and the smalls ADORE all their grandparents, but I can’t help feeling a bit guiltyabout the amount we are having to rely on them at the moment – a four year old and a two year old are, you know, a bit full on when you’re in your thirties, let alone your sixties.

But last night me and DH took advantage of the child-free house and the calm before the side effects storm kicks in (any minute now, judging by my mounting nausea and tingly tongue) to head out for supper in Guildford. He had very sweetly booked a table at Cote Bistro, a fine steak frites emporium (after mooting Maccy D’s and dirty chicken at Fleet Services – he’s not one for enthusiastically spending money on meals out, bless him, in complete contrast to me).

My confidence has taken a bit of a bashing with the hair loss situ. Even rocking the Hermes in a full on Kylie Stylee, with my gorgeous butter-soft nude leather dress, fishnets and my highest heels, it has to be said I was basically feeling old, knackered, sort of diminished, and a bit nervous about going out. The food was fab, though – we had scallops, rillettes, rib eye, cheese and creme caramel, washed down with kir royale and a cheeky little Macon Villages. I texted my fab friend S to tell her I was eating rare cow while dressed in dead cow, and she replied that it sounded like a Damian Hirst installation, and how pickled was I?

This is my dress. This is not me wearing it.

DH then said he was taking me for a post-prandial cocktail somewhere new. Apparently he and ‘the boys’ discovered this really cool place on their Christmas day out (the one that ended with DH in A&E, remember?). Almost inevitably, the bar in question was not quite up to the love of my life’s somewhat fuzzy memory, however, and we had an awkward half hour drinking the first frozen margaritas the barmaid had ever created (ie not historic), surrounded by drunk students. We were quite literally double the age of everyone else in there, and on a day when I wasn’t feeling at my most hip and groovy, it was time to hotfoot it out of there and jump in a cab home.

I’d had enough alcohol to get me to sleep, but not enough to counteract the effects of the steroids I have to take the day before, day of and day after chemo to stop me having some crazy allergic reaction to the yew tree extract they inject me with, so for the second night running I had about four hours’ sleep. Rubbish! Still, I am going to cuddle up on the sofa for the rest of the day, armed with the Sky+ remote and some ITV Mystery Dramas Sponsored By Toyoya Avensis (who sez advertising doesn’t work?).

And I have some more Medical Miracle news to share with you. At my pre-chemo check-up with my genius Aussie whirlwind of an oncology consultant, he declared, after much prodding of the old knockers, that my tumours have, to all intents, and purposes, GONE! Disparu! Melted! Tah daaaahhh! He said ‘This is going down as an outstanding result!’ Nice work fella. More than nice.

I have to be honest: I didn’t actually respond with such unbounded joy at the time. I just thought: Oh, that’s good. Let’s crack on, then… The intense rollercoaster of crapness I am strapped to on my pretty unrelenting treatment schedule is beginning to take its toll. My levels of energy, cheerfulness, and enthusiasm are low. My cognitive function is becoming noticeably impaired:  my short-term memory is buggered and I am starting to hesitate in my speech as I can’t always find the right words. I am tearful a lot of the time.

And I am starting to think about the surgery at the end of the chemo tunnel and Not Looking Forward to it one little bit. I’m sure I’ll feel more reassured after meeting my very talented surgeon again next week, but I think my chances of escaping her deftly-wielded scalpel are going to be nil. I know it’s all for the good, but I just want it to be June, in Spain, with a great book and a cold drink, and No More Treatment. Other than the three-weekly Herceptin drips I’ll have until November and another five years of checks and scans… Altogether now, F&CK CAAANCER!

We are the champions!

Oh. My. Goodness. I’ve just found out that I’m one of the winners in the Inspirational category of the Brilliance in Blogging awards, run by British Mummy Bloggers. I’m completely overwhelmed, chuffed to bits, can’t stop smiling!

I’m particularly honoured to be sharing the stage for this award with the truly inspirational Linda Jones, whose Speaking Up – Breaking the Silence blog is a lifeline for anyone with mental illness, and the very lovely Josie George (otherwise known on Twitter as @porridgebrain) who writes beautifully and with humour about life’s big and small challenges in Sleep is for the Weak.

Thanks SO much to everyone who voted for me. It’s made my day, if not my year, and I really appreciate your support. I think I might have a small Stones Ginger Wine on the rocks to celebrate. Tinkle tinkle.

I did jinx myself before Christmas by saying I didn’t think I would need a wig, by the way. Appointment booked at Joseph’s West End Hair next week to get a syrup sorted. I don’t know what West End Hair is but it sounds like a song from popular beat combo the Pet Shop Boys, who I have loved forever, and has to be better than the Terry Nutkins look.

I showed DH the website and he was drawn to all the long blonde wavy wigs – ie the ones that lap dancers wear. Personally I quite like Glaze  and Bianca (doncha just love that wigs have porn star-ish names?)

In the meantime, my hair’s really too thin on the crown now to leave the house without some sort of head covering, so I’ve been rocking my prized Hermes scarf and making full use of my beanie, and today got a lovely parcel in the post from Suburban Turban. What do you think?

I haven’t taken it off since it arrived, it’s really soft, comfy jersey and makes me feel much less self-conscious. I hate getting a glimpse of my baldy bonce in the mirror, it makes me well up every time because it’s so bloody obvious now that I have f%cking caaancer.

But hey, it’s only temporary, as my wonderful Pops always says, and winning my little gong has made it a tad easier to Keep Buggering On (you have to say this like Winston Churchill used to, for full effect, pretending you have multiple chins and a big cigar, with Adolf and the Black Dog both breathing down your neck). Now, where did I put that bottle of ginger wine?

Happy Noo Year!

Happy New Year chums! How did you spend yours? Bet it was more fun than being in the chemotherapy suite for the day! I’m being crass, of course. The day of my third treatment of six was fine, much shorter now they know I’m not going to keel over at any point and they can run the drugs through the drip in super-speedy time.

I did my usual visualisation at each stage, imagining Herceptin as a pale topaz light gently stopping the ‘grow’ signals from my rogue proteins to the cancer cells; the pertuzemab (the new trial drug) as a light rose energy that weakened those signals even further; the carboplatin as a clear, scintillating light that started to melt away the tumours, and the docetaxol (aka The Big Guns) as a piercing stream of emerald green energy that completely melts away the cancer until there is nothing left. (Non-Fact Fans: apparently cancer hates the colour green, and emerald light is associated with Archangel Raphael, the healer.)

And I had delightful company: my gorgeous, funny sister (we had an exceedingly rare actual conversation without our four smalls creating noise and havoc  – it was almost like being a on spa day together!) and my very fragrant friend S, who patiently listened to four hours of amusing tall tales from one of my Cancer Colleagues and bought a healthy, yummy lunch from M&S which made the rest of the ward green with envy as they munched their tasteless, vitamin-free hospital fare. Well, a sort of grey-green – some poor souls are on platelet and blood transfusions and already look like they are Friends of Robert Pattinson.

Then I got home to my kiddies and my incredible parents (without whom, frankly, we would not be coping in any way), and my lovely, sweet DH lit a huge Chinese paper lantern in the garden. The six of us held each other tight and watched silently as its little flame took the horrors of 2010 up, up and far, far, away into a cloudless, windless sky.

DD and DS duly dispatched to bed, we cracked open the first of several bottles of champagne (no idea whether this is OK after chemo; didn’t care) and us grown-ups had a very relaxed evening. We moved between kitchen, dining room and sitting room for canapes, Coquilles St Jacques, Beef Wellington (made by my fab brother-in-law) and Heston’s Christmas pudding he did for Waitrose with the orange in the middle. Though if I’d realised I could have sold this prized pud on eBay for a few hundred quid before Christmas, we would just have nicked one of the kids’ Petit Filous, to be honest. At midnight we oohed and aahed over the fireworks on the telly, spoke to our other nearest and dearests, kissed the babies, and said GOOD RIDDANCE to a truly shitty year.

And now I’ve got over the post-chemo week of feeling weak, wobbly, achy, nauseous and exhausted, so I am officially half way through this bit of my treatment. Collective whoop whoop at this point, please, people. Every time is differently crap, so this time the highlight was spending Tuesday being sick. And my mouth isn’t sore (yay!) but it is just completely dead in there so I have a permanently vile taste and then food and drink taste wrong too (noooo!). My lovely friend J sent me a bag of old fashioned barley sugars, which helped her mum when she was going through chemo last year, and I am sucking on one as I write.

It’s good to have got to this point. I never really got my mojo back after Chemo Deux and the subsequent cold, and was in tears on Boxing Day, just feeling I had months ahead of not having any energy or feeling like myself. I am starting to feel the relentlessness of all this, to be honest, and occasionally it gets pretty depressing.

But I did finally have two normal-feeling days before New Year’s Eve, and promised myself that this time I would be absolutely fine by today, which I am. My beautiful, smiley DD was back to school today after nearly three weeks off (snow ended term early), my newly-wordy and funny DS is at nursery (don’t you think they seem to grow up in a big leap after spending so much time with grown-ups after Christmas?), and I’ve spent all morning in the office on conference calls with a new client. I’ve been productive and managed to sound (I think, I hope) intelligent despite the general fogginess that comes as another unordered side order with chemo.

I’m also looking forward to seeing how my status as a Medical Miracle progresses – I saw the registrar before my last treatment and she said by her reckoning the 5cm tumour I had at the outset (that’s huge, no idea how I didn’t notice it before) is now less than 2cm. Good stuff, eh?

So welcome, two thousand and eleven. Be gentle with us all. Let your winds be refreshing, your sun and rain be nourishing, and your tides soothing. May your paths be free of things that jump out of dark corners to blindside us. Give us a break, eh? Or I may have to send my man round to box your ears.