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Cancer and other stuff

Archive for the month “January, 2012”

All change

I got my scan results today and despite really believing this drug would have done *something*, it sadly hasn’t. There has been a little progression – not loads and it hasn’t spread anywhere else – but enough that I have to come off Taxotere and move on to the next phase of THE PLAN. I’ve waxed lyrical about Alison a zillion times, but as the situation gets more serious, she gets more amazing. She’s a thinker, a strategic one and she just always knows what to do.

So. Last week I went to see a clinic in Harley St called the Sarah Cannon Research Institute to discuss a new trial they’re running for FGFR inhibitors. FGFR is some kind of protein, don’t ask me what, it’s all far too techie for my little brain but essentially they’ve arranged for samples of my original tumour to be tested to see if I have this FGFR thing, in which case I’ll be eligible to join the trial. A grim thought that they keep slivers of these horrid great lumps when they take them out of you but that’s how research works I guess. Anyway, if I am eligible Alison wants me to go on this drug first. If she gives me any more chemo at this stage, that might automatically exclude me. If I’m not, then it’s next stop Eribulin. She needs to apply for this on the Cancer Drugs Fund as it’s quite expensive and therefore not a ‘standard’ treatment, and the paperwork for this, and the trial drug, will all take a few weeks to get sorted so she has advised that now is the time for a holiday. It’s going to be at least another month before I start any more treatment so it makes sense to get away for a few weeks, rather than just sitting on my hands at home waiting. Goldenballs is now in work negotiating how long he can take off and when. Lansons are, as ever, 100 per cent behind me. I very much hope that tonight we will be looking at, and hopefully booking, flights to Bangkok so we FINALLY get that holiday I’ve been banging on about for God knows how long.

Weirdly I’m actually OK and I haven’t fallen apart like I have done previously. Maybe I’ve just had enough practice now. I hated Taxotere, it was horrid so I’m glad I don’t have to do any more of it. You could argue that I lost my hair for nothing but I’m not really that bothered about that – chances are I would have lost it at some stage anyway so at least now I have my Ariel weave to hide behind, it’s out of the way. My lashes are just about hanging on, and thanks to Julie’s clever needlework my brows look pretty great.

Obviously there is a small niggly worry about how many drugs I have left to try; the hardest thing is that on paper, things really don’t look great for me, so how can it be that I don’t feel any different? I really don’t. It’s completely bizarre. So I refer back to my earlier post – as long as I am feeling well and getting on with what is, on the whole, a very lovely life, then screw what the scans show. They’re only important when it comes to treatment plans which is The Boss’ territory, not mine. My role in all this is to stay sane and happy, and largely I am. I’ve got the most wonderful, beautiful relationship to nurture, and that is absolutely my priority at the moment.

I hope to God I can get on this trial and that I get some good news soon. But for now, nasty chemo planned for Friday is off and I’ve got a few glorious hospital-free weeks ahead whilst the boffins sort out what happens next. So it’s not all bad. Whatever may or may not happen in the future is not worth losing valuable happy time over so for now it’s THAILAND HERE WE COME.

Scouse brow

Yesterday I had semi-permanent eye make-up done – eyeliner and brows. It’s VERY odd, and it hurts a bit. Today I look a bit like I’ve got hay fever and my brows are almost frighteningly dark, but apparently it fades within a week. So now the transformation is complete. Compared to the bald, podgy quivering mess I was in 2009, it’s quite clear to me that anything is better than that. Including scary brows and massive hair if that’s the way it has to be in order for me to be able to carry on in some kind of ‘normality.’ I looked like a cancer patient in 2009, I don’t now but then I was going to get better so it was a bit different.

It’s good to be able to move on from the obvious physical trauma that cancer treatment brings because all too soon you get a dose of reality when it’s time for that scan. The appointment that was supposed to be on 26th was brought forward to today, so I’ll get the results next Wednesday which feels quite soon. Despite December being a bit weird and sad, Christmas with the boy wonder’s family was lovely, I then went home and had some time with my parents and some of my oldest school friends, and since new year’s eve, he and I have had such a nice couple of weeks wrapped up in each other. Apart from chucking a couple of chemo sessions into the mix, the last few weeks have been largely manageable and actually really quite nice. That all might change next week. I always call it wrong so I’m not going to try this time. Of course I’m scared but I’m going to try and take a leaf out of other people’s book and remember that the scan only tells me one thing. I know how I feel and I know I feel fine most of the time. It’s only chemo that makes me sick. So whatever the results, I’m going to really try and not freak out over them, if that’s possible. You can guarantee now I’ve just said that, I’ll get a bad result and COMPLETELY lose it but I hope that, if the news is not good next week, I can re-read this and be reminded. I can’t control the outcome of what that machine saw today – smaller or bigger – but I can try and have some control over my reaction to it. Remind me of this!

Ariel

My new hair has arrived. I said I wanted big, long hair and my God that’s what I got. This thing is MASSIVE. Very, very thick, very, very long. Like something out of TOWIE or The Little Mermaid. When they first put it on, I wandered round Soho (how apt) in something of a state of shock. Could I really go round with *this thing* permanently stuck to my head? It doesn’t look like my real hair, of course it doesn’t. NO-ONE has hair this big (even Dolly Parton, Shelley). You can’t replicate a real hairline, not exactly. You can’t get the nape, the little hair round your neck, the sides of your ears, the hairlicks. What I’ve ended up with is a very expensive, real hair wig that’s glued on. Let’s call a spade a spade. And actually, as I walked round catching glimpses of this massive mane in every shop window and checking out every passer-by to see if they did any kind of double take (they didn’t, but I was in Soho after all where you regularly see way more outrageous sights), I started to love it. I love it precisely because it’s totally over the top. There is a definite element of the completely ridiculous about it and that’s what makes it powerful. My new hair – which will undoubtedly drive me mad within a week – represents my way of fighting a ridiculous situation with something equally, if not more so. Cancer, you take away my hair, twice, you slice my poor left boob off, you leave me hooked up to a drip every 3 weeks, in a scan machine every other month, you destroy all the hopes and dreams I had for my life and leave me to face a cruel and short future, I’ll come back at you with the only thing I know -a firm and defiant ‘screw you’ from behind my mahoosive, almost comedy weave. And two fingers firmly stuck up. The time to try and look ‘normal’ passed by a long time ago, so bring on the tresses I say. Thank you to Foley Court and Julie the 13th godmother for making a hideous situation a little, well, funnier I suppose. I have been able to laugh about it. Having had such a dreadful December with my hair falling out, it’s nice to be able to draw a line under the hair thing now, as that was really not helping the situation and became all-encompassing for a while.

There’s not much to update on a medical level, I’m booked in for a scan on 26th January which isn’t ideal as I should really be having it this week so we can see quickly whether this drug has worked and Goldenballs and me can try and aim for Thailand for the third time, to be away on a beach to celebrate our first whole year together. But my lovely breast nurse Ruth is on the case trying to get it brought forward. In some ways I’d prefer to leave it where it is – a couple of hospital-free weeks would be really good at the moment. I’ve got stuff I need to be doing in work. Anyway we’ll see. Keep you posted.

wendyroby:
This is why journalism is so ruddy annoying. 1. ‘feisty, eccentric’ – this is but a whisker away away from calling these five women ‘nutty tarts’*. Did the sub-editor done it? Awful, awful, awful. JUST BLOODY AWFUL. 2. These women have not ‘just arrived’ – Kreayshawn’s single was released…  

Rendy Woby: This is why journalism is so ruddy annoying.1. ‘feisty, eccentric’ -…

Blessings

This is an odd time to be writing a blog – it’s 5am and the steroids I’ve been on for the last couple of days due to yesterday’s 3rd chemo blast are REALLY doing their thing. I’m knackered yet totally wired. But that’s OK, whereas before I would have got totally pissed off and annoyed about that, now I just come downstairs with the beautiful quilt made for me by my glorious friend Tabitha, get a mug of sage tea on the go (FOUL but v good for hot flushes, yes I’d forgotten about that – menopausal symptoms from the chemo smashing my ovaries – it’s lovely), get iplayer going and hope I drop off again shortly. I *think* I’m getting better at just going with it, cos I don’t have any other choice and screaming and fighting against the situation just makes it worse.

I now visit a hospice on a regular basis where I have a palliative care team and a fantastic counsellor whom I see once a week. That place is a godsend – when I first went there I was of course terrified to see “Marie Curie Palliative Care Centre” above the door but as I’ve spent more time there, they’ve really helped me face the possible practicalities of what could happen if I got ill, and where I could go. Not that I’m planning that any time soon and come on, IF I get accepted onto a brand new trial that clever Alison has got me an appt to see the trial director in Harley St about, then who knows? The longer we just keep this little shit at bay, the better cos then we get to access what could be the next generation of treatment.

Anyway the people at the hospice really know what they’re doing and what they’re talking about. And frightening as it is to tentatively discuss your own mortality with someone, it’s so helpful. The thing is, you and I are no different in that we are all going to die and, God forbid, something like this could happen to any of you – I certainly wasn’t planning for this at 32. You could have a freak accident, get run over by the proverbial bus everyone keeps talking to me about. Yet the difference is that I get, in some way, to prepare a little for my own death. Which is BIZARRE and terrifying. But is also part of a very long process. People who live with secondaries for a long time arguably have a harder job – the longer they stay well, the better. But that means the cloud that reminds you that something could start to go very wrong at any time stays with you longer. The trick is to try and give it its proper place. And work round it.

My counsellor has been brilliant at helping work towards really and truly living in the “now”. The future is too strange and vomit-inducingly awful to contemplate while I still feel so physically well (apart from chemo obvs). So I’m not going there, it does me no favours. Instead, I now try, even on the bad days, to take a long hard look at my life and see that I’m very lucky in lots of ways. Ways you don’t really even think about when you don’t have to cos you’re so tied up in your own problems. I have a job that I really like, and pays me enough to live quite happily. With colleagues and bosses who really do give a shit how I am and make life so easy for me. I have food in the cupboards, a car outside my house, my bike in the shed. I come home every night to someone I adore, not someone I have to cower from like thousands and thousands of women around the world. I have a home that is warm and filled with love. I have unbelievable friends, some I’ve become very close to as part of having cancer. I’ve seen kindness like you would not believe. I’ve laughed till I cried, I’ve loved till my heart feels like its about to pop and had that reciprocated. My family are – I can’t lie – still stunned but we’re getting there with that. My life is not all bad and I’m getting so much better at appreciating all those things, every day, and counting them all as the blessings they are. I’ve even started doing very twee things like not listening to my iPod on my way into work and actually paying attention to what’s going on around me, seeing what is literally in front of me, and it’s good.

If there was one piece of advice I actually felt completely qualified in giving to ALL of you, it’s for God’s sake try and be grateful for your lot, even in the face of crisis and trauma, especially when it feels like you have nothing. It’s the one thing that can keep you going, just for a bit. The major drawback to my life is that I can’t plan in the way you can, not really. (incidentally I read an article about people’s last thoughts as they are dying and every one of them said ‘health brings a freedom you never knew you had until it was gone” – I don’t think I’ve ever identified with something more). I can’t even plan a holiday when three years ago I could have just randomly jetted off to anywhere, at any time. So much depends on my next scan in a few weeks, which will determine how much longer I stay on this drug, assuming it’s worked. If it hasn’t, it’s applying for special drugs on the Cancer Drugs Fund, more tests, more schedules when I’ve just got used to this one. But that’s for The Boss to worry about, I literally only have the time that is right in front of me to do anything with, so I’d better make it good hey? That’s not morbid, it’s turning a bad situation on its head and finding the positive, SOMEHOW. I don’t always get it, far from it, but when I need reminding of that, the people at Marie Curie are there. Thank God.

Where am I going with all this? I’m not entirely sure, I’m so buzzed up on drugs but a plea I suppose. Not all this “live every day as if it were your last” rubbish and go skipping out of the house every day – we’ve all still got hassles with work, flat tyres on the car, family probs, bills to pay, January to be a bit depressed in. Firstly, not to feel sorry for or pity me. I don’t want that, not yet. I’m doing OK, I’m working through it and I have a lot of good stuff in my life. No head tilts please. But mainly to try and do the same in your own lives. I know of many people who have faced or are facing unspeakable traumas, you could be one of them, and somehow every one of their surviving spirit has pulled them through. Life could be better for a lot of us, but it could equally be a lot worse. I mean, Christ, could you imagine being homeless at Christmas and in this weather, with literally nothing? No thank you.

Inspiration

I’ve heard lots of people bandy the word ‘inspiration’ around in various contexts and it’s weird what and who some people take their inspiration from. I’ve also had a few people say I’m inspirational which, honestly – really no false modesty at all here – I find quite uncomfortable. There is nothing inspirational about the way I handle my condition – I cry, shout, wobble and snot my way through it most of the time. And you just muddle through, I absolutely guarantee any one of you would just, well get on with it. Because you have to. Because no amount of hiding under the duvet and not answering the door will make it go away. And yes you would come to value your life in the way I do, if you were faced with potentially not having a very long life. There’s a sense of urgency that brings you a lot of freedom, freedom that’s not available to most other people. If I want to fritter money away on shoes, or book extravagant holidays, or do things completely spur of the moment and screw anything else, I can. Who could possibly argue with me? This kind of behaviour isn’t inspirational in the slightest, it’s indulgent. And why not.

I said in an earlier post I wanted to be more inspired, more of the time. I have to be honest and say I can sometimes be wary of getting too friendly or too close to anyone else in the same situation, I’ve been there before remember – that lady I knew died and it completely freaked me out, set me back for weeks. But recently I’ve found my inspiration in the words, attitude and spirit of someone I’ve never met, but have come to feel very close to. I mentioned my cancer twin, Ellie, a little while back and we’ve been in regular email/ twitter contact for a while. She was the one who brought the newest fairy godmother into the clan (new hair). There are some elements of our respective situations that are quite similar – we’re both triple negative which in itself is on the rarer side, we were both in our late 20s when first diagnosed, both recurred very quickly and have had similar treatment regimes since then. We’ve both had numerous holidays wrecked cos of this nonsense. However there is one very big difference between us – our whole outlook, and the amount of courage it takes both of us to just keep going. Ellie’s cancer is more advanced than mine, in that more organs are involved, including her brain, meaning her treatment is arguably more vigorous. The poor girl has to have her whole brain fried on a regular basis, I cannot even begin to imagine what that is like. I hope I never have to experience it. Yet the biggest difference is that she really and truly IS an inspiration. Read her blog and be amazed, and humbled and ashamed that you ever have any cause to moan when you hear how she is. And it’s not about poor cancer girl, isn’t she brave, far from
it – she is sadly not the only young woman to have ever been in that situation and I hope the world’s scientists are on the verge of curing this shitty, shitty disease. It’s more about her positivity, her determination, her humour and her grace. It’s unbelievable. Her most recent posts involve how she was hospitalised over the new year period, in a hospital far from home, away from the doctors who know and care for her, with a skeleton staff who don’t know what they are doing. And she was on the cancer ward. When I ended up in the Royal Free with a blood clot that week in July, the one that put paid to our holiday the first time round (incidentally today would have been the day we flew out for a second attempt, and hasn’t the weather been lovely?), I too was on the oncology ward, where there were some seriously ill people and MY GOD IT WAS AWFUL. Just the most terrifying thing ever. So I get exactly what she means – the fears she had for Tom are exactly the ones I had for Andy. The frustration when you feel when a nurse isn’t listening when you tell them your veins really are shot and can they wait for someone to come along who knows how to cannulate, but they have a go anyway and balls it all up.

So yes there are certain tales in Ellie’s blog that ring very true. This is the kind of shit we have to deal with, you don’t just trot in every 3 weeks for chemo and get on with your merry little life on between, there are setbacks involving infections and low blood counts. And blood clots in your jugular. But what is really unfamiliar is Ellie’s unfailing ability to stay calm and resolved and steely.

That, my friends, is inspiration. Get some here www.writtenoff.net. A big hug to you Ellie, my hero. I look forward to meeting soon xx

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