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Cancer and other stuff

Archive for the month “May, 2011”

Loose ends

Bizarrely my chemo was delayed on Friday and instead of being pleased, I’m a tiny bit bummed about it. The day before you have chemo, you have a blood test to make sure you are well enough. They’re mainly looking at your white blood count and your platelets (things that help your blood clot) and on Thursday, mine were both very low which has never happened before, not even on the really nasty stuff in 2009. It’s a bit of a mystery but I can only assume it’s my body’s way of saying it’s not ready. Having spent all last week gearing up for a bank holiday weekend of recovering, I’ve sort of found myself at a bit of a loose end instead. Which is obviously no big deal and actually quite nice but it’s just another example of the curveballs this stuff can throw at you. I’ll have another blood test Wednesday and if it’s high enough, chemo Thursday, but the longer it’s delayed the more it’s prolonging the whole experience and I’d really just like to get the hell on with it now. But there are some nice things on the horizon – thanks to my wonderful friends Meg and Daz, the boy wonder gets to come to Glastonbury with me in a few weeks. And I’ve spent some time today researching options for our trip to Thailand in July. So a not entirely wasted weekend, just maybe not the one I thought I was having.

Picking your battles

Today I have learnt the art of true compromise and it’s been a good lesson. Too long-winded and complicated to go into in any detail but basically my relationship with my oncologist, Alison, is really coming on in leaps and bounds and we seem to really understand each other. We’re both willing to negotiate a deal that suits us both. I understand she has a very delicate balance to try and find – the absolute middle point of keeping me alive and well while giving me a life. She understands I have to live as normally as possible and that includes not being so pumped full of chemicals that I’m not myself and I can’t function properly. And we seem to be getting along just fine, I trust her to do the right thing for me as a person, not just me as someone with cancer and there is a huge difference between the two. I’m happy to compromise, let her win some battles and focus my time instead on the things that really are important to me. I know I can’t have it all, and probably won’t ever again, but I will make it harder for myself by refusing to meet somewhere in the middle. I wanted the OK for my holiday, I got it. I don’t want to lose my hair and I haven’t. I’d love to have some time off treatment over the summer but it’s still probably not practical or sensible at the moment so I’ll suck it up and get on with it, as hard as it is. There is the possibility of a break in a few months but that depends on getting at least another two good scan results first and when you think I’ve had bad scans for the past seven months, well statistically it doesn’t look good does it? Anyway all I can hang onto at the moment is the slightly brighter feeling today, like there’s lots to be thankful for and who knows what lies ahead? Chemo tomorrow will soon zap those good vibes but I think I’m ready for it this time. Cupboard full of food and fridge full of fruit, lots of water and a clear weekend ahead and I’m all set. Do your worst, drugs!

When I live, I’ll give it all I’ve got

Sufjan Stevens

It strikes again

Yesterday I heard the devastating news that a friend of mine, who shall remain anonymous, has been diagnosed with cancer in her bones, having had breast cancer, and seemingly thought she was “clear” of it 2 years ago (lesson to everyone – there is never any such thing as “all clear”, ever). And my instinctive reaction was “I know how she feels”. But then I pondered it some more and have come to the conclusion that no actually, I can never understand EXACTLY how she feels as we’re different people. Of course I can identify with the utter, crippling, goingtobesickanyminute shock that comes in those first few days and weeks, where you just can’t believe it, and any second now, someone will tell you it’s been a mistake. And the devastating sadness that comes after that where you slowly realise they won’t and you somehow have to come to terms with it. But what I hated, and what won’t, I feel, be any good for her, is people telling her they know how she feels, and she should do/see/talk to X, Y and Z. Cancer is a personal thing to everyone who has it and NO-ONE has the right to say they know best. You can only ever offer your own experience and opinion, if it’s asked for. But everyone will find their own way in their own time, a way that suits their life. I’ve made the choices I have for myself and I’m sticking by them. And I truly, truly hope my lovely, undeserving of this shit friend does too. I will be there to high 5 her when there’s good news, and I’ll be there to scoop her off the floor if the news is not so good and her legs give way. But never will I say I know what she’s thinking and feeling because she is an individual and is entitled to feel whatever it is she needs. Darling girl, if you are reading this, my hand is here if you want to hold it. I can’t lie and say it’s going to be easy, the biggest fight of your life is ahead of you, whether you like it or not. But me, and your other friends and people who love you are here and right behind you. We won’t give up on you. Big, big, big squishy love and hugs xxxx

How long till this makes sense?

Athlete (yes really)

Team Cancer

On Saturday night/Sunday morning, Team Lansons (Beth, Katie, Anna, Sarah and last minute super-sub Lisa) did the Moonwalk in aid of breast cancer research and awareness – 26 long miles through the streets of London by night. They looked cold, exhausted, emotional and a bit delirious by the end but they did it, and I am soooo proud of them (although that picture is simultaneously the most brilliant yet terrifying thing I have ever seen). Having spent months training for it, I can’t say I was particularly looking forward to doing it, it’s a hell of a trek. With no sleep! But I was looking forward to the sense of achievement at the end and the feeling that I’d kind of got one over on this whole cancer shizzle, even just once. So I was pretty gutted to not be able to make it, having had my second dose of chemo in one week the day before. Instead I was at home in my pyjamas feeling like I’d been hit by a truck. Or being sick. Or both! Seriously I couldn’t have trotted for a bus, let alone walked for 8 hours solid.

This chemo has been hard, REALLY hard and it’s shocked me how bad I’ve felt. Not just physically, but in every possible way. I have had literally nothing in my tank, no sparkle, no chat and certainly no positivity. Just a very bleak sense of ‘fuck, I can’t go on like this, I can’t face any more drugs if they’re going to make me feel like this’ and there was a point where, for a while, I thought about coming off treatment completely and taking my chances. Yes it was that bad. I’m really not used to feeling physically unwell so it sort of clobbered me a bit. The psychological side I can just about cope with on a daily basis, but when you feel dreadful, and tired, and you can’t stop crying, and you realise that a) there is no guarantee this stuff is even going to work and b) the best possible result I am hoping for is stability, not cure, and there’s potentially no end in sight … let’s just say it’s difficult to stay focused.

What’s happened though is that TEAM CANCER has kicked into action, without me even realising it. I didn’t even know I had a Team Cancer (Team Lansons, Team Woodstock yes) but apparently there are loads of them signed up ready to mobilise when I need them to, even when I haven’t asked for it. Whether that’s wonderful Meg, dropping by with healthy supplies, changing the bedsheets and washing up while I wander round my flat looking like the living dead, mad hair all over the place. Or Mrs T and Mrs W providing much-needed pep talks over the phone from the West Country and Oxfordshire. Or my lovely boyfriend with the strong chest to fall apart on and the home-cooked food I get treated to daily. And Jeena and Jemma for bringing more home-cooked food into work. And Tabitha for investing time and love into a beautiful hand-made quilt for me to cosy into when I need it. And Lyndsay for blagging me tickets to Jools Holland tomorrow to make me smile (I KNOW! So excited!). And Lisafromthegym and Phil for staying up late to make the t-shirts for the moonwalkers. And all the moonwalkers themselves and the volunteers from Lansons who got off their arse and did something to fight the good fight when I was busy having a big old fist fight of my own. Especially to Lisa for stepping up to the plate at the last minute to be my Moonwalk replacement. That was a huge gesture and I love you to bits for it.

I am totally humbled and amazed by how brilliant some people can be. I’m not very good at asking for help but the best people help you anyway cos they can see you really need it. Anyway I think I’m over the worst now, just foggy and tired and a bit shuffly but I hope to be back on form in a few days. Then it starts again in 2 weeks, but that’s OK, 2 weeks is a long way away. And hey, at least this means it’s doing something, hopefully pop-popping on the bad stuff.

Team Cancer, you rock (and I’m always looking for new members, especially those who can bake good cakes). Thank you xx

Wired

So writing a blog at 5am is never going to be quite right but that’s what it’s here for I suppose and it’s sometimes in your bleakest hour you need to offload some stuff. I’ve been awake for an hour – I’m on steroids to stop me being sick from the chemo and I remember from 2009 that this waking up in the middle of the night business happened a lot, and was quite frustrating then too. Everyone knows it’s when it’s quiet and dark that that’s when you tend to go off on some mad thought process.

I’ve been really good, I think, at not dwelling on the past 2 years but very occasionally it’ll hit me and I’ll replay it all. Every last bit of it, right back to 2009 when it all started. The tests, the is-it-isn’t-it, it’s ok it’s sorted, oh no it’s not it’s back. And I can’t help but come to the conclusion that, if things had been done differently, none of this would have happened. Obviously it’s all with the benefit of delectable hindsight and I’m not angry, nor do I blame anyone. I’m just bitterly disappointed. So many things didn’t come to light at the right time, or weren’t spotted until it was too late and that’s really REALLY hard to swallow. What should have happened: this 29 yr old woman has a triple negative cancer and is a BRCA1 carrier = instant double mastectomy right from the start. Instead there was multiple surgery, a programme of gruelling treatment aimed as an ‘insurance policy’ which didn’t do a bloody thing and 6 months later, back to chaos except now on an unbelievable scale. I hate the way things have turned out. I hate the fact my life is largely not my own any more. If I ever wanted to leave London, I probably couldn’t as you can bet the best cancer brains are down here rather than anywhere else. Even planning a holiday involves working round other people’s timescales and trying to be flexible enough to accommodate these, yet I don’t see that many people bending over backwards to accommodate me. I’m at the age now where I would ideally like to be thinking about having a family in the not-too-distant future and that’s looking increasingly unlikely, and I know that’s the next big thing I’ll have to come to terms with somehow.

Having cancer is boring. And tedious. And I don’t like the fact I can’t remember who I was or what I was doing before I got it. Seriously, I can’t and that’s really sad. I have a port in my chest that they use to plug me into a drip that pumps me full of chemicals that I know are hopefully doing some good but is this what it’s going to be like forever? This it now? Just plugged into a machine?

Moaning never really helps and I’m
sorry to do this here but, well, it’s just for a little bit. Am just a bit tired (ironically) and wondering. Wondering, wondering, wondering what it would be like if things were different and what I’d be doing now as a result. Which is fruitless I know. Anyway today (is it really only 5.20am? Too early for breakfast?) I am taking my lovely friend Heather to a spa for the day. Think we could both do with some looking after.

The situation is what it is, and largely I’m quite good with acceptance but v occasionally I might have a little pummell with the pillows at 4am and think ‘this is all bollocks’. I’m allowed, indulge me (but not too much, I can be a bit of a nightmare for that at times).

Endorphins (and other drugs)

Tomorrow I start new chemo and it’s come round all too quickly. A bit quicker than I would have liked – it’s been a blissful hospital-free couple of weeks – but I suppose the sooner we get started, the sooner these little buggers can be nuked. I’m a bit nervous: chemo is not pleasant although I hear these new drugs are quite well-tolerated so fingers crossed it won’t be too hideous. Alison (amazing oncologist) seems pretty relaxed and it turns out she’s already got one eye on where we go next if these drugs don’t work (which they WILL!) so I don’t have to. So I can get on with the business of living. I’ll have another scan in mid-June and until then, it’s head down and crack on. I’ll update more on that when there’s news.

Obviously those close to me, and anyone on Facebook or Twitter, which is essentially everyone I know, will be aware that I’m now, completely surreally, in a relationship. And it’s GORGEOUS. I’m still amazed and delighted (and completely terrified if I’m honest) about the fact I’ve discovered it’s possible to love and be loved, and not be wholly consumed by the fact I am apparently not very well and let it dominate my whole life. For the first time in 2 years, having cancer is not the first thing I think of when I wake up. I feel stronger, taller, fitter, more alive than ever. I can laugh and forget about everything and bask in
the joy of it. I’m under no illusions that if this relationship continues in its current form then it could, at some stage, get difficult but for now it’s not and someone has chosen to love me for who I am. And it’s wicked. To conclude, I’m very very happy but like everything, I’ve worked hard to get it. I’ve had to fight for it when every part of me tells me to run away as it’s not worth the heartache if it goes wrong. But it’s worth it, no matter how long it lasts. So, boyfriend, if you’re reading this, thank you. For giving me, and us, a chance. And I promise to try and make you as happy as you’ve made me. Happy birthday x

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