tiltingheads

Cancer and other stuff

Round 1

Considering a couple of weeks ago, I was all nonchalance and “yeah, you won’t be hearing from me for a while, I’m bored of this cancer nonsense, I’m offski”, these posts are certainly coming thick and fast at the moment, ain’t they? That’ll teach me.

So the first round of Taxtotere was today, and thank Christ that’s over. The day started quite badly by not being able to find a parking space, despite my spaz-badge, and having to park miles up the road and hobble down to the hospital. Hobbling down to the fact I’ve put my spaccy back out again through last weekend’s debut netball match of this season, where I positively destroyed my GD, thank you (I get a flare up every few months which means lots of leaning to one side, like I’ve potentially got something stuck where it shouldn’t be, and gingerly shuffling around like a 90 yr old woman – last night culminating in me having to miss my FAVOURITE BAND IN THE WORLD*, Wild Beasts, as I just couldn’t stand for that long. Gah).

The boy wonder came for company today, to see what it’s all about, and we get to the chemo unit, the same chemo unit I’ve been going to since June when I switched from UCH to the Royal Free. Today I am to be looked after a young nurse I’ve seen there every time I’ve been, who doesn’t recognise me. Which is fine, why would she, she probably sees hundreds of patients every month. Except she seems to think I’m brand new to this whole chemo crap, and proceeds to talk me through how chemo works, every single side effect you can get – all of which I’ve already had at some stage or other over the last almost-three-years: sickness, diaorrhea, constipation, mouth ulcers, hair loss, sore hands and feet, neutropenia, low platelet count. Honestly, I like to think of myself as a bit of a model patient but by the time I’d explained gently about ten times that this is my fourth-line chemotherapy (i.e. the first three didn’t work very long) and yes, I have actually had some experience of all of them, and yes I know how chemotherapy works, and yes I understand this will make my hair fall out, and yes I have been to see someone about a wig thank you, I was on the verge of screaming “just stick the cannula in, lady, and we can all go home at some point tonight”. Then she can’t get a vein, suggests maybe it’s worth thinking about having a portacath fitted as it makes chemo ‘so much easier’ when I then had to explain that, yes I had one of those, and yes it was terribly convenient but could have killed me by giving me a blood clot right in the jugular, so I’m afraid it wasn’t a route available to me any more, good suggestion though, thank you. To quote Goldenballs, “good grief”.

Speaking of which, all you’ve heard from me over the last couple of weeks has been “me, me me” and what I haven’t really talked about is what a shock it’s all been for him. Yes, you can argue that he knew right from the start what he was getting himself into but really, did he? From the word dot, the first night we met (when I was smitten within hours, literally HOURS), I’ve been well, I’ve looked well, I’ve acted well. All he’s really known – bar that little blood clot upset in July that wrecked our holiday the first time round – is me trotting off to this mysterious “hospital” place, coming back with bandages and pin pricks in my hand and arm, watching me have a 3 day chemo hangover, then life returning to blissful, domestic normality, and us being like two lovesick puppies, slobbering all over each other. He hasn’t been there from the start to find, see and feel the lump(s), see me get wheeled down to surgery, ashen-faced and clutching the sheet up to my chin, to come back dazed and blood-stained down the left side of my body, with this grotesque mass of stitching and swelling that would eventually become the ludicrous monstrosity of a Frankenboob that I’ve actually become quite fond of. He hasn’t seen the hair coming out in clumps and the various “auntie Jan” haircuts I’ve had to force clips and headbands into just to stop myself looking like a 55 yr old. All he’s known, from February 26th 2011, in the Jolly Butchers in Stoke Newington, is someone tell him very glibly they have what is currently incurable cancer, but it’s being taken care of, it’s not something he has to worry about, now would he please get me another pint of Doombar and by the way, was he EVER planning to kiss me?

The poor little sausage has therefore had a bit of a shock the last couple of weeks and he’s had to get his head round a lot of things very quickly. Not only what’s going to happen with this new treatment, our dream month in the sun is now off, or postponed at least, and the fact I’m going to have no hair (only for a bit, until the weave turns up), but it’s probably only now he’s REALLY realised the severity of my ‘situation’, to coin a phrase from a friend who could only ever refer to her breast cancer as that. He’s gone from maybe just thinking ‘it’ll be fine, babe’ (his favourite phrase, about ANYTHING) to perhaps realising that, fuck, it might not actually be OK in the long-run. Before anyone starts giving it the “well you just don’t know, do you?”, no YOU don’t. But I do. I obviously hope and pray it won’t be for a long time and no, never rule out a miracle and there are new drugs being developed all the time, and I’m really well at the moment and it’s still contained in my lungs which is awesome… but while you me call me pessimistic, I call myself realistic. Let’s leave that there for now though because WE just don’t know, do WE?

Going back to my point – it has absolutely broken my heart to see my gorgeous man so utterly devastated in that first couple of days, and it’s something that bothers me on pretty much an hourly basis. How can I possibly put him through something like this? I’m torturing myself with the thought of how he is going to cope if and when I’m gone, he’s going to have to sort through my stuff, can he stay in our house? Will he want to? Who will help him? Argh! This isn’t a fairy story, where ‘love conquers all, and we’ll stick togeva babe’, it’s real life and there is not one part of me that would blame him for bailing at this stage and weirdly, there is a part of me that wants him to go – my own grief and pain I can manage, other people’s are a little harder to do so and isn’t it fairer, if you love someone, to want to spare them as much pain as you can? But anyway, I’m aware this is slight mad talk. Who knows that the future brings but for now, he’s still here, being increasingly wonderful and we’ll just have to wait and see. No promises on either side for now, I certainly can’t promise anything about anything – I can barely work out what day it is. But please, when you’re thinking of ways you might be able to help me, do remember him too. He needs all the support he can get. Clue: he likes BEER. And food. Preferably that he doesn’t have to pay for (well, he’s entitled to pull the C card now too, isn’t he?).

Back to today – after much faffing about with steroid injections, anti-sickness meds, they get going on the Tax and about 10 mins before it’s finished, the nurse notices my neck has gone rather a deep shade of red. Cue blood pressure check – low – and oncology doctor gets called (not before he’s finished his lunch, mind). For a split second, I’m thinking ‘I’ve had an allergic reaction to this drug, brilliant – quick, suck it back out before it gets to my hair and I lose it for nothing! Half an hour later, rash goes down and Ruby (that’s me btw, long story) gets to go home with a bag of anti-histamines and yet more syringes of yet more drugs to inject myself with, and all is well. Then Ruby and the boy wonder go and buy some Christmas decorations and have a pizza and lots of soppy neck kisses on the way home, and all is really well.

So now the Tax is firmly fizzing its way round my body, blitzing my hair follicles (boooo) but also hopefully kung fu-ing, karate chopping and all other fancy pants marshall arts kick-assing all over the cancer. Next hit is on 16th December so just in time for Christmas but sooner I’ve done two, sooner I can have a scan to find out whether it’s working.

I’ve had SO many lovely messages the last couple of weeks, honestly it’s been totally mad and I’m DEAD humbled and a bit embarrassed, but an extra special mention has to go to my new-found cancer twin, Ellie – see www.writtenoff.net – for utter courage, she’s flipping amazing. And gorgeous. We’ve never met but there are a few similarities in our story, not least we both recurred in record time, we are now both being tested for a potential new trial in Harley St next year and the drug she is on now is my next stop (I don’t think she moans as much as me, there is a lot I could learn from this girl). Hello twin, let’s have that tea soon!

For now, it’s jamas on and crap TV all the way this weekend, and next week I’ll be getting THE CHOP before it all falls out. Oh yes cancer, I’m WAY ahead of you this time on this one, sucker.

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