tiltingheads

Cancer and other stuff

Archive for the month “November, 2011”

Whoopsie

Sorry about that! Bit embarrassed now. Thankfully I am starting to feel a bit more human and promise to be brave next time and remember that the world isn’t about to end every time I have a bad time on the drugs. And actually, it needs to be bad to beat all over the cancer. My cancer twin reminded me if that today and she’s nails so you have to listen to her.

Normal service is resumed. Me and that devilishly handsome man of mine are going away for a swanky, romantic weekend, I’m booked in to get all my hair chopped off next week and it’s my birthday in a couple of weeks. Not quite the birthday I was hoping for but there WILL be cake and that’s the main thing.

Really sorry for being a big whingebag and scaring everyone. Scared myself for a bit but I think I’m back on track now.

How do you feel today?

Had a few texts and emails over the weekend and this morning, asking how I feel and the blunt truth is worse than I’ve ever felt in my life. I read somewhere about the ‘tax truck’ and I’ve definitely, definitely been run over in the night. It’s the only explanation. Coinciding with my back, which feels like it has very hot knives in it, is pain in every tiny last nook and cranny of my body. I can’t walk, I can’t even get up, I’ve lost my appetite, I feel dizzy. I’ve come off the steroids with a very big bang which has left me in quite a dark place. I don’t want to do this, any of it. I’m angry – and I don’t normally do anger, I can’t stop crying and all I can think is what IS the point of all this, I’ve made a huge mistake. If I’m going to have to do this every 3 weeks for the foreseeable then quite frankly, it’s just not worth it. In another couple of weeks, my hair will be gone and I’ll be the poor cancer patient all over again and I can’t bear it. Screw being brave, I’m not brave, I never was I just got on with it because I had to. I’m trying to think “in a few days, it’ll all pass” but at the moment, it’s tough when everyone around you is getting on with things and you can’t even sit up.

There are things I need, team cancer, so listen up – firstly, can someone send round a lorryload of the strongest painkillers you can find. Buckets of them. Cheers. I also need someone to come round and cut my hair before it starts going. And a good mobile manicurist please. I also need every girl and woman in the country to keep an eye on their boobs. Can’t believe I’m
in this world of trouble over a lump no bigger than a grape.

In a couple of days the fog will undoubtedly lift – poor Andy – but today, I’m not even going to pretend to be resilient. It’s my blog, I’ll moan if I want to.

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.

Game plan

Back to see The Boss today with a firm “goingtograbthisbitchbythehornsandslapitaboutabit” attitude and we now have a game plan. I start this new drug, Taxotere, on Friday. Every 3 weeks, next CT scan (and brain MRI, you know, just to be on the safe side) after 2 cycles, so around February. Side effects don’t sound pretty – “severe muscle pain” for a few days afterwards, nails going all manky and falling off, hair loss. YUM. Then there’ll be bucketloads of steroids (which I flipping HATE) in case of allergic reactions, plus more injections of white-blood-cell boosting juice. My medicine cabinet already looks ridiculous, perhaps I can start a black market. I have to think strategically at this stage though – many of the possible drug trials coming up require you to have done at least one taxane (Taxotere – tick) and one anthracycline (FEC in 2009 – tick) so I have to do this in order to put myself in the best possible position going forward. Lovely, clever Alison already has one eye on what’s next and this is where she comes into her own – she has access to things and people many oncologists don’t and my tumours can be tested to see if I’m eligible for a new trial for triple negative cancers coming up at Harley St next year. The timing couldn’t be more crap with my birthday and Christmas coming up but it’s never a great time for this type of shizzle is it and, let’s be honest, I haven’t really got the time to waste now. So it’s bunker down for the next 6 weeks. It’s getting cold, am happy to stay in the warm and sleep. So that’s the medical plan. I’ve also been busy this week getting measured up for a custom-made, errrr, I can only describe it as a toupee. It’s made to exactly the right shape and size of your head, out of real hair, and is basically glued on. Even typing that makes me laugh, and it’s frickin’ expensive but I figure if I have to go through this all over again, I’m def not going down the NHS itchy syrup route again. I’m going for long, swishy and FABULOUS darling. Will keep you posted on that one. So cancer, you ready? Cos you can bet your bottom dollar I am, you horrible, stinking pathetic excuse of a disease. All members of Team Cancer please mobilise…

Dear cancer

Dear cancer,

This is the letter I never wanted to write, or at least thought I wouldn’t have to for ages yet but events of the last few days have left me no choice.

See, up to now, you and I have been rubbing along fairly nicely right? I’ve made some concessions to you, you’ve largely stayed quietly in the corner not making too much of a nuisance of yourself. And we were OK, in fact I would have stayed like that for a long time given the chance. But sneaking up on me like that and clocking me with a jab to the kidneys, well it wasn’t very nice.

I’ve been wondering whether it’s even worth going ahead with any more treatment as you know, and for a day or two I really came close to chucking the towel in. Almost three years you and I have been doing this absurd little dance and yes, there is a big part of me that thinks “screw this, I can’t be bothered”. I’m SO tired, in every possible way but you don’t care do you? You couldn’t wait till I’d at least been on holiday.

I used to feel sorry for you – the poor little wonky gene that just got lost somewhere along the way. I would have helped you get better and back to normal if you’d let me. But you see, this week you overstepped the mark. You made my boyfriend cry. My beautiful, wonderful boy wonder. You frightened him and made him really sad and that is completely unacceptable to me. I’m cross, in fact I am actually bubbling over with rage. It didn’t have to come to this, it really didn’t, but by not playing ball you leave me no choice other than to raise myself from my knees up to full height and unleash this hate right in your face. You won’t win this game, not now you’ve upset the person I care most in the world about. This week you’ve shown me you are serious and if I sat back and did nothing I’d be dead within the year. I get it, you’ve made your point. So bring it on. No more messing around.

You forget I have Alison on my team. The coach who will decide how best we play this. And she’s clever. I also have Team Cancer, whose numbers are growing steadily every day. So SCREW YOU CANCER. Every time you think you’ve won, every time I will come back stronger. I’m sending in the big guns now, and as soon as is possible. You have no idea the carnage that is going to cause you. If I lose my hair, it’s ok I’ll get new hair. No eyebrows? I’ll tattoo them on. Ha! I prefer looking like a freak for the rest of my life than ever give you the satisfaction of rolling over and being defeated. I’ll still go to work, still have a social life, still volunteer with the charity and play a useful, active role in everything I do. Even when I’m tired, even when I think I can’t carry on, I will.

So cancer, I’ll just be lying low for the next week or so getting ready for our next meeting. You had me right on the ropes and I’m still very, very sore. But I’ll be ready for you again soon.

Love from Me. X

Fuck

So much for my breezy “I’m moving on, there’s more to life than cancer, la la la, skippity skip” gubbins. I’ve been smacked right in the face today with the harsh reminder that the minute you decide to do that, it tiptoes quietly up behind you, taps you on the shoulder and pokes you one right in the eye. Then runs away leaving you wondering what the hell just happened.

The facts: I had my scan results today which showed that the chemo I’ve been on since May, the one that’s worked really so far, has been outwitted by the little fucker (sound familiar?). The things in my lungs have got worse although thankfully there is no sign of spread anywhere else. Gutted. Thing is, I’m not that surprised, I knew this drug wouldn’t work forever, I just thought and hoped and prayed this day wouldn’t come so soon.

Next steps: there is another drug Alison wants to put me on, and soon, which it sounds like she has been saving for “emergencies” but which is likely to make my hair fall out again. When I was diagnosed with secondaries, I was adamant this was the one thing I wasn’t going through again. I can almost hear a chorus from lots of people reading this… “it’s only hair it’ll grow back!”. Tell you what then, how about I come round to your house, shave your head and eyebrows, pull all your eyelashes out so you look like a boiled egg, then 2 years later, when you’ve got over the embarrassment and humiliation of people tilting their heads in pity at you, and hating what you see in the mirror, and you’ve just about starting feeling normal again, come round and do it all over again. Except this time, not give you an end date so that there’s a probability that you’ll look like that for months and years. Oh and by the way, you’re probably going to die after a few years anyway. Sound good? Exactly. I went through the trauma of watching my beautiful, long hair come out in my fists, having to be shaved by a hippie at Glastonbury who probably thought it was ‘far out, man’. The itchy wigs, the “who and what the fuck have I become?” feeling for the best part of a year, because I knew there WOULD be an end and I could hand over 18 months of my life for the end result of getting better and never having to go through it again. I barely left my flat for a whole year as I was so ashamed about what had happened to me, how I looked, how I felt. Then there was the period of regrowth – the GI Jane, the Steve Macdonald, the Dermot O’Leary, and my personal favourite, the “auntie Jan”. I was blissfully ignorant the first time round, I too thought ‘it’s only hair, it’ll grow back’. But it’s not only hair, it’s part of my identity, how I conduct myself, how I get on psychologically with this word ‘cancer’ that seems to have tattooed itself on my brain. And the major thing, obviously, was that I went through all that because it was supposed to make me better. I think we all know by now that, barring a miracle, I’m not going to get better. Whatever drug they give me is only going to prolong the inevitable so is it better to just focus on staying normal rather than throwing yet more toxins at my already knackered body in the hope of just one more year or two? One or two years where I have to walk round with the indignity and humiliation
of looking like a cancer patient (sorry to anyone with cancer reading this, it’s just how I feel – it is my blog after all).

Aside from the hair, the little question I’ve had in the very darkest corner of my mind for so long – ‘what is this all for anyway?’ has today become very big and I’m now facing the fact that I’ve been on 4 different drugs in just 14 months and I don’t know how many more there are left or how much more I want to put myself through. I really don’t. That’s probably enough for one day, there is lots to think about and some big decisions to be made over the next week. Help anyone?

Making stuff

I had family over from NYC (hi cuz!) last week so took a couple of days off to do the obligatory family-are-here-let’s-go-to-a-museum thing. Which is the only time I ever get a bit of culture – ridiculous really, seeing as there are, like, a zillion things to see and do in London, but anyway. We went to the V&A where there was an exhibition about crafts, called The Power of Making. I’m no culture vulture, nor can I really make anything (except a mess) but this was pretty ace. It had loads of weird and wonderful things made from weird and wonderful materials. None of which I particularly ‘got’ (which I guess is why I don’t go to museums much, I always leave feeling a bit thick). But aside from that, it also had loads of normal, everyday things – people making chairs, clothes, instruments etc etc, with a film on loop showing people actually going through the often painstaking process of building these things. As I was wandering around, I thought how cool it is that people can MAKE things. From scratch. Things we just go to a shop and buy. And actually, I felt pretty inspired. Not by the things themselves, but by the process of devoting effort and time and love and skill into something and the feeling that must bring when you see the finished result. Check it out here http://www.vam.ac.uk/content/exhibitions/power-of-making/ and go, if you can.

My friend Beth in work is into crafts, there always seems to be a random parcel on her desk from eBay where she’s bought stuff to make things (most recently, it was sloes to make sloe gin – who knew you could buy sloes on eBay? As an aside, the sloe gin we made in the summer, which was supposed to be for Christmas, was devoured by the boy wonder and his brother this weekend in one 15 hour session for little bro’s birthday. Thirsty work). Anyway look at these ace bedside tables Beth (sort of) made… http://www.handpickedhouse.com/post/10994089482/secretlyswearybedsidetables 

At the weekend, I asked Goldenballs what his favourite food was (seeing as he will literally eat anything). And rather than his answer being ‘steak’ or ‘risotto’ or ’Sunday dinner’, he thought for a while and said ‘anything I’ve grown myself’, and explained how satisfying it is to look at his plate and remember that he’s tended it from scratch, looked after it, taken care over it, and how THAT’s the best thing about it, rather than the food itself.

Anyway the point I’m trying to make, very badly, is that it’s really easy to go through life complaining, getting bogged down with problems, being pissed off, dissatisfied and generally quite bored with the routine of get up, got to work, come home, cook tea, pay bills, do the food shopping, spend too much money on crap you don’t need to fill your life with some kind of interest or ‘meaning’ blah, blah, blah. I do it myself, more than I should. And finding something you love doing or making or growing, devoting time to it, honing a skill or an interest or a knowledge, is brilliant. You can’t buy it, or be given it. Watching someone else with a passion doing it is inspirational. I like inspiration. I’d like to have more of it in my life. I think everyone should.

Moving on

I think I’ve decided to step back from this cancer thing and it’s likely you’ll see far less blogs from me as a result – and they won’t be about cancer. It’s been over a year and it’s pretty much all I’ve thought and talked about. And I’m bored of it now. Really bored. It’s defined who I am for too long, and it’s time to move on. It had to be like that until now – it’s such a monumental upheaval and it’s taken me this long to get to grips with it. I’ve blogged about everything, shared my story and the contents of my head so publicly that I haven’t really got anything else to say on the matter I don’t think. It’s all anyone ever talks to me about. I’m still scared, not of dying, but of dying in pain and alone. I’m still frustrated – that I have little control over this situation. It’s still agony living with this constant uncertainty and I’m still desperately sad about what could have been and what will never be. But, you see, those things won’t ever change and in the meantime, making cancer my primary focus means I’m missing out on other things. In my head I’ve been a patient for so long that I seem to have forgotten about being a daughter, a sister, a girlfriend, a friend, a team-mate, a colleague. I’ve given cancer too much headspace, it’s wrecked quite a few things in my life and even if a miracle happens and I get better, I’ll never get over it. BUT… that’s ok. It’s ok because it has to be. All the talking, crying, blogging, thinking and despairing is not going to make this go away. It is what it is (my favourite phrase) and I’ve accepted that. I’m sort of ready to put the cancer in a box and only deal with it when I have to. It’s only a tiny part of who I am. It’s just a long-term condition I have to manage. No more than that. I’ve adjusted my life enough to incorporate it, and I’m definitely ready to move on. I can’t get in a state every time I have a scan and the news isn’t good, I’d spend half my life on the edge then and that’s no good.

The fact is that everyone will die, and I’m no different from any of you in that respect. Except you don’t sit at home worrying about when you’re going to pop off do you? And nor do I any more as there are so many more interesting ways to fill my time. I won’t always be ZEN and no doubt there’ll still be nights when I wake up at 3am in blind panic. But that happens to everyone at some point anyway.

I’m fairly sure there will be some people who think I’m ‘not dealing with it’ but my question to you is: what exactly IS it I’m not dealing with? I
understand I have what is currently an incurable disease that is likely to kill me in the future. And…what else is there to say or ‘deal with’? If I sit and think and cry and go on and on and on about having cancer and how unfair it is, will that change anything? I’m boring myself now to be honest so I must be deathly dull to those around me and I really want to get back to being the daughter, the girlfriend, the friend.

So that’s it really. One last scan to get through next week then I’m off treatment for a good few months when I can work on starting to get my ‘normal’ life back on track again and stop defining myself as a cancer patient. No more blogs, no more newspaper articles, just me and my man spending a month in Thailand and Vietnam after Christmas (yep, had to get that one in). After that, who knows? But I’m excited about life again and ready to shed this cancer cardie I’ve wrapped myself in for ages.

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