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Monday 3 August 2015

Shit Got Different...


Sorry for the language, but yeah… Shit got different.

When I’m working, chances are things are going to change – the agency is going to reject our recommend for the lead actor, the director is going to decide he wants to shoot in a studio rather than a location, the catering company we really, really want aren’t available… That kind of thing. And when I’m working with Sally and Patrick and these things happen, whoever is breaking the news to the other two will shrug when they ask why, and simply say “shit got different”. Because sometimes you don’t necessarily need to know the whys and the wherefores and the reasoning. Sometimes all that matters is figuring out what you have to do to solve the problem.

Three months ago, I had my scans and my update with Dr S and things were looking downright rosy. My bones were healing nicely, the lesions in my liver were shrinking, the fluid on my lung was practically non-existent and the world was a happy place.

This time, shit got different.

About 5 weeks ago, I went in to see her for my check up. The first thing that set the alarm bells ringing was the presence of Lucy – my breast care nurse. Now, don’t get me wrong, Lucy is lovely (obviously – good name), but she is used as something of an emotional force-field for Dr S. So if she’s in the room and you’re waiting for news, chances are it’s not going to be amazing, and then when you inevitably end up as a bit of a snotty mess, she’s there to offer tea and sympathy and a cuddle. If she could get past Ma B, obv…

The second thing that kind of suggested things weren’t all well was a piece of paper on top of my notes in Dr S’ hand-writing saying “evidence of more lesions on the liver”.

Right then.

And so she started talking. About how she hadn’t personally seen the scan and she wanted to see the scan and sometimes the radiologists got a bit overzealous with the scan and thought there was progression when maybe it was not as advanced as an oncologist would maybe think it was. BUT, that there was evidence of more cancer in the liver, and that we needed to get it checked out. That the scan as a whole was a bit up and down – the bones were looking good, the liver wasn’t. That there was a bit more fluid around the lung. That we shouldn’t move too hastily because once you move from one drug to the next you can’t go back. And if the liver hadn’t progressed terribly far, then maybe we could cling on to the Herceptin and Pertuzumab for a bit and eke them right out for as long as possible.

But, if the liver had progressed as the radiologists thought, and the Herceptin and Pertuzumab were losing their efficacy, then we have to move onwards. To a new drug. Kadcyla.

Kadcyla is basically Herceptin, but with a bit of chemotherapy attached to it. So it enters the cancer cell in the same way as Herceptin does, but instead of just stopping the cells from replicating, it actively kills the little buggers. It’s targeted, in that it only works on cancer cells, but that’s not to say there might not be side effects if it inadvertently enters somewhere else. Not the hideous side effects of full on chemo – the hair loss, the nausea, the diarrhea and constipation - but as treatment progresses the likelihood is that there will be some build up of fatigue.

So the plan was for her to go and look at the scan with the radiologists. Crossing our fingers that they had been overzealous and we could keep pottering along nicely thank you very much.

Crossing your fingers is somewhat useless when it comes to cancer.

Back to Dr S the following Wednesday after a dreaded week of the unknown. When you have to distract yourself with everything that comes your way because you would drive yourself bloody mental if you spent all day every day thinking about the possibilities of what might be coming. So, with Ma and Pa in tow, on that hideously hot day a few weeks ago that the Daily Mail no doubt screamed was hotter than the Sahara, we went back in to learn our fate.

And lo and behold the radiologists weren’t being overzealous. Of the five lobes in my liver, one of them is in a bit of a pickle. And much as Dr S would like to postpone moving me along the line another step for as long as possible, if we delayed changing the drugs much longer, chances are my liver would start to fail. And then we’re in a whole world of pain.

The thing about this whole situation, and the thing I HATE, is not what the cancer is doing to me. I can deal with the drugs, and the rubbish days and the feeling horrid once in a while. I hate what it’s doing to the people around me. I hate that my mum and dad and sister and friends are having to watch all of this happen and feel so helpless. I hate that there are days when I feel like I’m failing in some way by not responding better to the drugs, and for longer. I hate that people are having to think about things that they should never, ever have to think about when it comes to a 36 year old who, other than a rogue clump of cells that just won’t quit and a boy’s haircut, looks and feels quite healthy. I hate that I’m weirdly quite fascinated by this mini evolution that’s happening inside of me without me even knowing – that cells with no sense of purpose, no drive, can change and mutate and keep on going despite the fistfuls of drugs that are chucked at them on a regular basis.

I also hate that this now feels proper. I know I’ve had cancer all along, and I know that I’ve jumped through all the hoops to try and get rid of it – the surgeries and the biopsies and the chemos and the radios, and the re-admissions to hospital, and the changes to my diet and the giving up booze and all that guff. But I’ve never really felt like I had cancer. Not like the people you see on the news, and on the adverts. I’ve never really felt like one of them. But now, I’m having to accept that I’m going to be on chemotherapy of one type or another for good. And I have to just assume that the Kadcyla is going to work it’s magic.

And it’s going to have to work it’s magic, cos it’s a right bugger – I’ve only had one round of treatment and it gave me the worst hangover I’ve ever had. And I didn’t even have the fun of the night before.

Cancer, let’s be honest, sucks.


Wednesday 25 March 2015

One in a billion. Or thereabouts...


So, for those of you who are my friends on Facebook, you’ll know that I had my 3 month scan last week and everything came back looking positive. My heart’s still beating, my bones are still mending and the lesions in my liver look like they’re miraculously getting a bit smaller. Which is weird, cos the Herceptin and Pertuzumab are supposed to control rather than kill, but who am I to argue with the facts? Anyway, the post I put up was to the effect of: Boom! 3 month scan and the bugger’s being kept at bay! Boom!

Now then. If I’m being completely honest (and that, after all, is the point of all this)… that post wasn’t strictly true.

In November last year I noticed a bit of a rash on my chest. A week before my jaunt Down Under. Bit annoying, I thought. Not very nice to look at, I thought. Maybe it’s cancer, I thought (in a tiny voice in the back of my mind).

So I did the grown up thing. I popped into the clinic to see the oncology registrar and check it was nothing to worry about. She had a look and said no, that looks OK. Maybe an allergic reaction to something? Maybe the sun would actually clear it up? Let’s suck it and see eh? But it didn’t look like breast cancer would look like in the skin.

And so, off I set on my merry way for the very best of holidays ever and had a lovely time. The rash enjoyed itself too. So much so that it got a bit redder, and developed more of a definite shape – a very defined triangle from collar bone to sternum and back half way up the boob that’s still there.
Getting back home, I was due for my 3 month check up, so I thought I should bring up the rash with my oncologist. Hmmm, she said. Odd, she said. It doesn’t look like cancer. Or at least not like any she’d seen. So we called in one of the surgeons. Hmmm, he said. Odd, he said. It doesn’t look like cancer. And so we called in the dermatologist. Hmmm, he said. It looks like a photo-sensitive delayed allergic reaction to the chemo, he said. So he gave me steroid cream and I diligently applied it for 3 weeks over Christmas and the rash didn’t go anywhere. In fact, if anything, it got a bit redder, and a bit more triangular. Although it very definitely didn’t stray from that shape. It was just plain odd.

So I went back to see the dermatologist, and he thought it was probably worth doing a biopsy. Just to rule out it being the cancer spreading. Just to be sure. After all, no-one at the hospital had seen this manifestation before, and it would be very, very rare if it was cancer. And it didn’t look like cancer. Let’s remember that. So I should probably not worry.

So we did the biopsy and my sliver of skin went off to the lab.

(I think we all know where this is going don’t we?).

Two weeks later, and I’m back in his office. As thought (not as I’d thought, but anyway…), it was the very, very, very rare thing. And you know in the adverts when everything stops and someone’s sitting in a room hunched in a chair looking at the person who’s talking like they’re a blethering idiot? That happened. I couldn’t think of any questions, I didn’t really know what to say. I didn’t want to cry in front of him (mainly cos I thought he was quite a nice looking chap and I think there’s some sort of ethics business in place which means I’m not allowed to think that). So I just sat there and stared at him like a slack-jawed fool and tried not to cry.

What I do remember though, is him elaborating on the rarity of this whole thing. Something so rare that he could only find two other incidences of this triangular rash manifestation in literature IN THE WORLD. Two. In the WHOLE WORLD. Which, with me thrown in for good measure makes me 1 in 3 billion or something ludicrous. I mean, I know I’m special and everything, but that’s just ridiculous. I’ve since looked it up on the internet and found these other two incidences, who seem to be blokes in their fifties and sixties with salivary gland cancer. Which makes ME even MORE special. Or weird.

Very importantly though, and he was at great pains to stress, I had to go and get photos taken so they could write me up and I could join the two gentlemen in the medical literature. Me! Published in a medical journal! What larks.

Anyway, off I went to Dr S to see what on earth we were going to do about this. Because after all she hadn’t really seen it before either. But before seeing me she’d researched it and spoken to the Royal Free about this fancy treatment called electro-chemo. She didn’t really know what it involved, just that it could potentially work for me. And she didn’t want to stop the other treatment I’m on because my liver, bones and lung are happily playing ball on that front. So she referred me over to the Royal Free and off I went to see what it was all about.

Next stop the consultant oncologist at the Royal Free, who explained everything to me. It’s quite a new treatment, but I think they’ve actually treated 8 other people with it, so I’m not quite as much of a medical marvel as I thought. But still, I seem to be the only one with this triangular shape, so I’m clinging on to that as an oddity… And 8 people just knocks me down to 1 in a billion or something instead. Anyway, in a nutshell, they knock me out under general, give me a low dose of chemo and then use loads of tiny needles to administer an electrical pulse that causes the cells walls to open and chemo to flood in and kill them, meaning the individual cells get a much higher dose than they would ordinarily. It’s SO clever!

Then on to a meeting with the surgeon who’s going to perform this magic. He’s a genius. And a lovely man. And I think that’s pretty much all I have to say about him. An actual genius.

So all this brings me to yesterday – lying on a trolley thinking once again that I’m going to be the one person that anaesthetic won’t work on, before 10, 9, 8, zzzzzzzzzzzz…………

“Do you know where you are?”

“Have they done it yet?”.

Every time. Why am I always so surprised to wake up from a general to find they’ve actually done what they were planning?

Quick visit in recovery from the surgeon who very proudly told me that he’d administered 429 needles in 30 minutes – something of a record it seems! Which, if he did one at a time is a needle every 4.2 seconds (something I was sooooo bothered about working out in my head when I was coming round from the general. So weird.). But surely he can’t have been that quick… Even if he did 4 needles at once that’s 1 stab every 16.8 seconds. Which is still pretty bloody quick. But he IS a genius though, so I’m prepared to believe anything…

And finally to this morning, when I very much felt like I’d been stabbed with 429 needles, regardless of how quickly or how magically he did it. It’s achey and burny and tight and tender. It’s OK if I sit in one position, but it hurts like hell if I sit in another. Going from sitting to standing is horrendous, and I’m going to have to sleep propped up like an old lady. But d’you know what? It’s that or cancer innit? And this morning felt better than last night. And this evening feels better than this morning. And I can only imagine tomorrow will feel better than today. So you just get on with it don’t you?

Friday 9 January 2015

What A Carry On


Crikey – looking back I’ve just realized I haven’t updated the blog since somewhere in the deep, dark depths of chemo when everything’s blurry and, let’s be honest, a little bit rubbish. But happy news is that I’m now out the other side and ploughing on nicely. Since finishing the chemo I’ve been continuing on with Herceptin and Pertuzamab which are happily very dealable with and have no horrific evident side-effects. I have to take a low dose of a heart tablet to make sure I don’t conk out, but other than that life continues as normal. I’ve had two scans since the chemo finished and both have shown the cancer receding further, so for the time being we seem to be getting it right. I almost (almost!) have a liver that vaguely resembles a liver now!

Normal, post-chemo life is ace. I’ve essentially been swanning round on holiday – a weekend in Northern Ireland in October and a “well done me” holiday in Australia and New Zealand in November and December, which was incredible. Slightly less incredible (although actually if you’re taking the true meaning of the word, truly incredible) were the astronomical travel insurance fees associated with recently diagnosed secondary cancer. The extreme advantage-taking of people in a vulnerable position is horrifying – despite having clear scans, being able to move around easily and unaided, and being told (nay, advised) by my oncologist to take a holiday, none of that was taken into consideration and a holiday that would have incurred a £60 travel insurance package drifted into 4 figures. I was furious. Didn’t stop me going though, clearly.

Other than buggering off round the world though, I’ve also been on a one woman campaign to become the Face of Macmillan. It all started back in October when I hosted one of those coffee morning things. I wasn’t massively convinced about it – I’d wanted to do something big like walking the Great Wall of China, or climbing Kilimanjaro, or sitting in a bath of beans in Selfridges window for a week. But with an aching back and a tendency to pick up infection at the drop of a hat, none of those were terribly achievable. So I opened up my tiny little flat to my friends, set up an urn, whipped up a vegan chocolate cake and stepped back to watch the fun. By the end of the day, we’d raised £1400. In my TINY flat. Eating CAKE. Ludicrous.

The next week I went to help out at the Whittington’s coffee morning for the same cause where I donned a T-shirt and shook a bucket and we added another £1000 to the pot. It’s also where I met Rachel, the Macmillan Communications Officer, who’s always on the lookout for patients who are willing to speak about their experience. As we all know, I won’t shut UP about my experience. She must’ve seen me coming a mile off. 

And that meeting led to an interview on the radio the other day with Paul Ross and Penny Smith. I imagine people at home pictured me in an all black ninja suit popping cancer cells off with a bb gun. In reality I was sitting on the sofa in my pjs with a cup of tea and the cat.

And that meeting also led to yesterday.

To standing in front of 100 or so people in the reception of the Whittington making a speech to help open the new Macmillan information centre. Me, a lady from Macmillan, the lead oncologist at the hospital, and Barbara Windsor. Y’know. Babs. She of precarious bra fame.

So I made my speech, and I made people laugh and I made people cry. And I nearly cried myself, but I got through it. And people seemed to think it was quite a good speech. So I thought maybe I should put I on here, so if anyone wants to read it they can. Maybe they’ll laugh, maybe they’ll cry.

What a carry on.

“Hello. My name’s Lucy Booth, and as Steve has just mentioned, I’m a patient here at the Whittington. I was diagnosed with breast cancer in October 2011 at the age of 32, and last May we found that it had spread to my bones, my liver and my lung.

The media often like to speak of cancer as a battle. As a fight that we must win. All too often we hear of someone losing that battle – almost as if it was their battle and theirs alone. As if they have failed in that mission. As if somehow they personally just haven’t given a good enough show of beating it. It is a solitary, isolating description. And ultimately, I feel, a negative one. To me, the battle analogy conjures up an image of hatred and of war, and frankly, cancer brings enough of it’s own negativity without us adding to it.

It is also rather a tired clich̩ Рthanks to years of research and the work of the oncologists in our lives Рthe Dr Leonards and Dr Spurrells of the world, it no longer has to be the battle it once was. Only this week we have heard reports that there has been a dramatic increase in the number of people living with cancer for longer. It is no longer necessarily you or it. Sometimes, the two of you must just learn to live together.

Finally, the battle analogy is shamelessly anthropomorphic. Cancer doesn’t have a brain, a mind, a well planned strategy. Let’s not honour it with that status.

Personally, I see having cancer as a job. It’s a rubbish job – one of the worst you’ll ever have, and the pay is terrible, but it’s a job nevertheless. You won’t want to get up and go to work every day, but you do and you must. There are days when you can’t be bothered – the days when you’re throwing up and your whole body aches. And there are the days when it is a little bit easier – when you feel like your normal self (if a little light on hair) and your cancer is nothing but an occasional thought through the day.

But, as we all know, the thing that helps you through the working day, when your project is particularly tricky, or your boss is giving you a hard time, is the group of people you work with. And the same goes for cancer. The people around you, the support network you have at hand, they are the things that help you through the day. And, at times, the night.

I’m lucky. I have an amazing group of family and friends who are there for me and with me every step of the way. Who let me cry when I need to, and help me forget it all when I don’t. And to that group I can now add the nurses in the chemo suite and the girls at Macmillan – Karen, Renate, Nse, Pat, Tracey, Elizabeth, Lucy and Helen. And the volunteers – Ivy and Barbara, who come in while we’re having treatment to bring tea and biscuits and a bit of a gossip. They’re constantly run off their feet, there’s never enough time in the day and yet they have all the time in the world to get to know us, make us feel welcome and make what could be a horrible process altogether more bearable. And they’re not just there for us, the patients, but they have time for our relatives, and our friends. Helen and my dad quickly became firm friends during my first round of chemo when he just didn’t know quite what to make of it all and she took the time to sit with him, to listen, to explain, and (if I know my dad), give him a good shake once in a while. Because it’s not just me who’s affected by cancer, it’s everyone around me.

But, as I say, I’m one of the lucky ones. I have a strong support network. But some people sadly don’t, and that’s where these nurses and Macmillan staff really come into their own. Because as well as the financial and practical support they offer, they are a shoulder to cry on and a sympathetic ear. And cancer treatment isn’t just the drugs that pump through your veins, it’s finding the means and the strength to get up and get the job done. And without this lot, that job would be nigh on impossible.”