Don't Get Pancreatitis

Mainly, because it’s horrid.

It’s odd at the moment – being back in the full throes of treatment and being a patient and ending up in hospital at all hours of the day and night because one part or another of my body has decided it isn’t going to play ball. Because it feels like so long since I’ve felt ill. The treatments have been going on, the scans have been happening, we’ve been full steam ahead and life has been normal, but since having the electrochemo at the beginning of May, it’s been one thing after another and I have to keep reminding myself that it’s only been like this for 7 weeks and it Will Get Better.

After the electrochemo there were the headaches and the flashing lights and the being told that I had cancer in my brain. Then came the radio. As ever, the team at UCL did the most amazing job of looking after me and the actual process of having the radio was very dealable with. I went in to have my mask fitted (weirdly like a very clinical facial where a warm, soft plastic sheet is laid over your face and gentle hands pat it down to form a snug mold of your face). When you go in for the treatment you lie on a table, your personal mask is placed over your face and then bolted into place so you can’t move out of the line of fire. There are a few beeps, then a long eeeehhhhhh sound (during which I recited a little mantra “the cancer is dying the cancer is dying the cancer is dying”), then a gap, then another eeeehhhhhh (more mantra), then the clips are off and your head’s free and you’re off into the big bad world again. From lying on the bed and having your nose mushed into your face to the clips springing free was 10 minutes max. If that. No messing about. In out, shake those pesky tumorous cells all about.

The ONE annoying thing about radio though… I’d been warned about the hair loss, I knew it was coming, I had the wig ready, I was primed. Not a SINGLE hair fell from my head until the last day. Ten days in and out with lustrous locks. Thinking I’d beaten the system. I’m now sitting at home in a baseball cap. Lured into a false sense of security and living it up like the Hamlet cigar man.

And so onwards. I knew the side effects would last after the radio – occasional headaches, tick. Maybe the odd flashing light, tick. Tiredness. Tick. Curling up on the sofa for the afternoon watching yet another antiques programme has become quite the past time for me and Ma B. All doable, all fine.

And then just when I thought I was coming out of the woods and would be crawling into feeling normal again…………….  Pancreatitis. It’s horrid. Thursday night was spent in excrutiating pain – I went to bed at 7pm to lie down because every muscle in my abdomen felt like it was being wrung out like a sponge. Couldn’t lie down flat though. Or on one side. Or on the other (although that was marginally less horrendous). Deflatine for trapped wind I thought! No. Paracetamol? Nothing. Ibuprofen? Pah. Morphine? Proper drugs? Nope. You just lie there writhing about a bit love. So much for my “if I fall asleep my muscles will miraculously relax and all will be well with the world”. Doesn’t work if you can’t fall asleep. Or if that’s just quack medicine made up in your own head. So at 4am I had to call poor Nse one of my amazing chemo nurses, wake her up and ask what the heck I should do. By quarter past four me, Ma and Pa were hoofing it to the Whittington and by quarter to five I was in a bed being hooked up to a drip and having very lovely A&E doctors very tenderly prodding my very sore and very distended tummy. I looked like I was about 3 months pregnant.

The pancreatitis diagnosis came quickly. There was something in my blood that should read in the 30s or so. My level was 457. Not good it turns out. Painkillers and fluids and the loveliness that goes with everyone who works at the Whittington and a few hours later I was transferred up to an amazing private room with views looking over the whole of London. As we’ve seen before, you very much have to look for the silver lining in this game and that room was the biggest treat.

I then spent the weekend whinging that I wasn’t even proper ill. That I’d BEEN proper ill and this wasn’t it and was just bloating and a bit of pain and it was all just too frustrating and boring (for most of my bending over backwards to win NHS patient of the year I can be a right old whinge-bag to anyone who’s not a doctor or nurse sometimes). Luckily, Analie advised me from Googling what pancreatitis was, so I just carried on feeling sorry for myself, drank my water like a good girl, weed into the buckets they gave me, and accepted everything that came my way. Until Sunday when the pain and bloating had significantly reduced and I (somehow) managed to get myself discharged on a Sunday evening. Unheard of, and very gratefully accepted.

I saw Dr Spurrell on Monday, after going in for them to check all my blood levels were continuing to return to normal. Seemingly the pancreatitis has been triggered by the steroids I needed to be on for my head, so I’m weaning myself off them as fast as medically recommended and possible. SHE thought I was big enough and ugly enough to know what pancreatitis was, so she told me (after telling me that often it’s something that big boozers get and I haven’t even had a SNIFF of wine since Rome, and even that was on a very pared back level). Apparently it’s when your pancreas gets inflamed and starts leaking digestive juices. Which, because they have nothing better to do, start digesting you. Like, your innards.

So yeah, proper ill. Just for a day though.

But anyway, I’m out now and better and looking forward to clambering back to feeling normal and being normal and getting right back on the board.

Surf's Up

When I haven’t written this for a while, people often ask me when I’m next going to post. They want to see how I am, how I’m getting on. And I love that, because it makes me feel supported and that there are people out there rooting for me. But the thing is, when there’s nothing to report, updating this feels like tempting fate. Like a massive two fingers up to cancer, saying “ha, well you’re not hitting me hard at the moment, so boo sucks to you, you little bugger. I’m just going to write about how EASY this is and how NORMAL life it, DESPITE you.” Which is why I haven’t written for a while. Since moving on to kadcyla last year things have been going OK – my scans have been stable, I’ve been feeling fine. I’ve just had a lovely 8 day holiday in Italy (in Rome we walked 42 miles in 4 days, so I can’t be THAT ill after all). I came back to another round of electro-chemotherapy on my skin that seemed to go so smoothly that I was home on the sofa the same afternoon and in so little pain that I had convinced myself that the surgeon just hadn’t bothered and had just knocked me out and bandaged me up for a lark. Turns out the NHS don’t do that as a matter of course.

Thing is though, I am writing this. So that’s probably a fair indication that things have taken a bit of a turn.

It’s really weird (and very easy to say with hindsight), but before my Roman Holiday I was beginning to feel like the tide was changing. There’s nothing I could put my finger on, just a general feeling that things were going to change. I was losing my positivity a bit, asking questions in my head about how much longer I’d be able to keep going for, how many birthdays I had left, who would look after Oliver (the cat) if and when things went awry. And I hated it, because the one thing I have, and something that I think is a major factor in helping me fight this bloody thing, is my positivity. So without it, I felt a bit lost.

So, I got home from this amazing few days away and had my electrochemo, and then my body caught up with my head. It started as pressure headaches – the feeling every time I stood up that someone had put my head in a vice and was very deliberately turning the screws. Then there were the little flashing lights – sometimes a kind of migraine-y fuzz, sometimes a very definite little square of light that flashed on and off just in front of the bridge of my nose. Then, the bloody back pain, which came on out of absolutely nowhere. I saw Dr Spurrell one day in clinic feeling relatively fine, she found me hunkered over on the ward the next day unable to stand up properly and needing morphine to be able to get up off the bed where they were giving me the kadcyla. All change. And I was told, in no uncertain terms, that if this pain were to carry on over the weekend, I was to go straight in to A&E. I don’t think Dr Spurrell was in anyway surprised to get a phone call on the Saturday to say that I’d been admitted early that morning – having woken up in tears and vomiting with the pain.

Once again, I have nothing but the hugest respect and praise for the NHS. The 24-7 NHS that the government are so worried we don’t have swung into full effect that Saturday and when I arrived and was admitted (I was in a bed less that half an hour after arriving at the threshold), I was met by legions of doctors from various specialities – ones worried that I had appendicitis, ones worried that I had an inflamed kidney, others who wanted to give me CT scans and X-rays of every part of me. Jeremy Hunt, you know not what of you speak.

And at the end of this very long day, I was tucked up into a private room with a lovely team of nurses to look after me. And it was here that the very kind and gentle on-call doctor came to find me to say that she had spoken to Dr Spurrell, had updated her on everything that had happened during the day, and that the CT scan had shown that there were lesions in my brain.

My bloody brain.

If you go back to the beginning, you’ll remember that I bloody loved my boobs. And, the other thing I quite like is my brain. I mean, other than the fundamentals of being able to help you do stuff, which is generally quite handy in one’s brain, I like to think I’ve got quite a good one. I’m funny (ish - haha, not peculiar I like to think), love a bit of Trivial Pursuit, had a little foray onto a TV quiz show with Ma B last year. I’m no rocket scientist, but I’d like to think I’m not a dunce. And now even my brain is turning on me. Bloody Judas. 

My main worry, and a huge fear, was that I was going to lose ME. My personality, the things that make me ME. To my eternal shame, when I saw Dr S on the Monday morning when she came to find me, some of my first words were “but I don’t want to be a vegetable” (she assured me I wouldn’t). I then spent the next couple of weeks until I saw her again and had the chance to apologise repeating under my breath “I don’t want to be a vegetable?!” with the same incredulity that Baby Housmann worries about telling Johnny Castle she carried a watermelon in everyone’s favourite (let’s be honest) Dirty Dancing.

And from then on, the system has excelled itself in every way possible. I have been for more scans, my back pain (although still unidentified) is being kept in check, and there’s a plan now. And as we all know, I love a plan. Because a plan has given me back my positivity and that makes me feel like me again. And people I’ve seen in the past week (who also saw me when I was at my worst) have said “oh yeah, you’re YOU again now. You’re back”. And I really feel like I am.

My very good friend Adam used the best, best analogy last week and I really think that, as much as the plan ahead, has helped me get my head around it all. “It’s like riding the crest of a wave isn’t it?” he said. “Each treatment is a new wave that you have to catch and ride for as long as possible. And when that wave runs out, you need to hop on to the next one and keep going.” And I do. Just have to keep riding those crests.

So, the plans afoot. For my brain, they initially gave me steroids which stopped the headaches and flashing lights within 48 hours. Looking at the scan, there are 7-10 small lesions, with one biggish one in my temporal lobe that measures about 2.5cm. Dr Spurrell got in touch with the absolute A-team of brain people – a neurosurgeon (Mr Kitchen) and a brain radiotherapist (Dr Furscht) who saw all my scans and immediately got me in to get things moving. Initially there was talk of an operation, but they have decided that as a first port of call we should do whole brain radiotherapy to try and shrink what’s there, and if we need to operate in the future then we do that, but we certainly don’t go in waving hammers and drills as a first port of call. As soon as I met them, I really liked them – I had exactly the same feeling of confidence as when I met Dr Spurrell for the first time. These people are the absolute best, most shining stars in their field, and they’re looking after little old me. They also reassured me that I wouldn’t become “thick” (sometimes I do think I need to think before I speak to clever people). The largest lesion is in an area that could affect my short term memory, but as Mr Kitchen said, I have two temporal lobes and he could whip a whole one out and I’d still be OK, so it shouldn’t be too much of a worry. They also said it had probably been growing for at least a few months, but if it had grown quickly I would have been a lot more ill (seizures and sickness and all that), so there’s that silver lining that we can cling on to.

Hyper speed being the average velocity at which this lot work, I saw them last Monday, was fitted for my radiotherapy mask on Wednesday and am booked in this afternoon (i.e. a week later) for my first session of 10. Daily (except weekends) for the next couple of weeks. I’ll probably lose my hair again, but as I said in the meeting, been there, done that. And my lovely friend Spob has already been wig shopping with me, so we’re ready to rock on that front.

As for the rest of it, I’ve had a meeting about a clinical trial. We’re not 100% sure that kadcyla is still working – the back pain, some breathlessness, that kind of thing. So Dr Spurrell has done some digging and found me a trial that I will hopefully be accepted onto starting from July that involves Herceptin (which I’ve had before) and a tablet form of chemo that blocks other receptors on the cancer cells to stop them spreading. And I find the thought of clinical trials reeeeeally exciting. They’ve run it with great success in the States already, and although I’m essentially a guinea pig, I could be part of the generation that develops yet more drugs that knock this pig of an illness in to touch. It doesn’t hurt that the trial runs out of some very swanky offices on Harley St either.

And that, more or less, brings us up to date. It’s been the longest three weeks of my life, and I still can’t quite get my head around being well enough to explore Pompeii and Rome and walks miles and miles and miles just last month. But I did, and I could, and I will again. But for now, I just need to concentrate on catching those crests, and riding those waves.

Surf’s up.

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.

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?

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 cliché – thanks to years of research and the work of the oncologists in our lives – the 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.”

Well, it's been a while...

It’s been bloody ages since last I wrote, and what an up and down tipsy turvy couple of months it’s been. Mostly, you’ll be pleased to know, it’s been ups, but bloody hell, haven’t there been some downs.

On the up front, after Chemo number 3 I had a CT scan – just to check all was fine and dandy and feeling like utter rubbish and spending half of my time in hospital was worth it. And turns out the chemo is doing a fine job of getting rid of those nasty little cells – the holes in my bones caused by the cancer have started healing, and you can see evidence of the scar tissue that’s filling them in. And in my liver the grey patches that were evidence of tumours have, in the majority gone black. I recoiled somewhat at the mention of black (I mean, that NEVER sounds good does it, when in relation to bits of your body), but it turns out the black bits are a sign of high water content, which in turn is a sign of the cancer dissolving and dissipating and starting to be flushed out of my system. And as for the lungs – all a bit of a grey area, as we’re not 100% sure if was even in my lung in the first place. Although there’s still fluid around the lining, so we can’t see terribly clearly whether it’s there or not or whether we’re coming or going. But all in all, a bit of a result! Next stop a CT scan after chemo 6, to see how much of the bugger has been blitzed in the final rounds.

On the flip side, the side effects have been getting worse (I shan’t going into details – it ain’t pleasant, and poor old Ma B is the only one who gets the privilege of having to deal with them…). Luckily, they’re fairly self-contained and last for 3 or 4 days. They’re a vile and unpleasant 3 or 4 days, but at least I know there’s an end point and I have a good two weeks of starting to feel someway normal before the whole merry-go-round starts up again.

Back on the up front, my hair seems to be sticking around a lot longer than last time, and I still haven’t ventured into the wig (sorry Spoblet – think I got a bit over zealous!!). It’s pretty thin and patchy, but I’ve been managing to style it out as long as I have my pony-tail in exactly the right position and pull some strands around this way and that. Just praying, praying that it clings on for the next few weeks so at least when the regrowth starts I can try and salvage the first inch or so and I’m not growing a whole head from scratch again. Probably nothing but a pipe dream and I’ll have to chop it all off, but we can but hope eh? I’m convinced it’s this vegan diet that’s doing the business – never eaten so many falafels in my life… And I even managed to sit through a roast dinner with a huge bubbly pot of potato dauphinois bang slap in front of me on Sunday without even having a teeny tiny bite. My vegan sausages and new potatoes were… erm… delicious. (Not as delicious as Hiller’s homemade pots dauph and buttered carrots, obv, but needs must…).

On the down side, one more trip to hospital (low Calcium levels and numb legs) after Chemo 3, but on the up side, finally made it through a whole cycle after number 4 without being re-admitted. Fingers crossed for number 5!

And now, with number 5 done and dusted, all I can do is wait for the horrors to kick in on Friday, and know that I’ve only got one more cycle of the docetaxel to go before life can return to (a very different and meat and dairy free) normality. Can’t wait to get back to bloody work properly. And it’s not every day you hear that…

If you’re ever going to find a silver lining, it’s got to be a cloudy day…

(I’ve stolen that from a song, but I think it’s very apt. And all in a good cause eh?).

Problem is though, it’s almost bloody impossible to find that silver lining when we’re in the middle of a heatwave and you’re lying in a hospital bed (for the umpteenth time) looking outside at a cloudless blue sky. But, we know I’m not one to dwell, and we also know that this being England, it’s only a matter of days before it clouds over again and silver linings are ten a penny.

Chemo this time is hard. Bloody hard. I don’t know how I did it last time – going to work the day after my treatment, going out for dinner, nipping off to see friends around the country. Maybe it’s because I was weaker when I started this time (I had two fully functioning lungs first time round lest we forget), maybe it’s because my body is wondering why the hell I’m putting it through all this nonsense again. Maybe it’s because I generally feel a bit queasy in 30 degree heat so if you bung drugs on top of that it’s only going to make me feel shoddy. Whatever it is, it’s harder.

Last time round, I didn’t get admitted to hospital once. I couldn’t even entertain the idea that I would, so intent was I on proving to the world and his wife that this cancer business wasn’t going to affect MY life. I was going to be normal – I was going to drink red wine and eat burgers, work as much as I could (it wasn’t every day by any stretch, but still…), make time for everyone I heard from, reply to every text, and prove to everyone that I was JUST FINE. Woe betide anyone who approached me with a pitying head tilt. I had cancer and it wasn’t going to make a jot of difference.

This time, I have nothing to prove. I got it wrong last time and when you get it wrong, those pesky little cells take full advantage. If I’m knackered, I go to bed. I’m appalling at replying to messages (please, please don’t take offence if you’ve been in touch and I haven’t replied – yet). For the first weekend after the first chemo when I hadn’t been downstairs in two days other than to go to the loo, Ma Booth popped upstairs to tell me she was worried I was withdrawing from society (which did, to be honest, sound a little Pride and Prejudice. She had a point though). If I lie in bed til 1 in the afternoon watching box sets, I couldn’t give a toss. My diet is revamped - I now have the dubious honour of being a vegan tee-totaller... (not a sentence I ever thought I'd write...). This time it’s about me, and listening to my innards, and if they’re telling me to sleep, I will jolly well sleep. I love seeing people, I love having visitors, but if I decide I just want to hole up and bury my head, I have no qualms whatsoever changing my plans. Most tellingly though, if I feel dodgy, I’m straight back up to that hospital. Sometimes I feel like a right wimp for doing it – like I’m failing myself somehow by not managing to stay out of hospital, but as we now know, sometimes I’m not right about all things. Galling as that may be.

Each time I’m admitted, it seems to be for something that I’m completely unaware of. I go in with one thing and they poke and prod me and announce another. The first time I went in feeling sick and a bit short of breath and convinced my lung had filled up again, and the doctors admitted me because my pulse rate was insanely high and they were worried about infection. Turns out my heart rate tends towards that of a slightly panicked woodland creature even when I’m feeling fine. The second time I went in with a pain in my side, which I was convinced was my lung filling up (there’s a pattern). Turns out my liver was inflamed, I was insanely dehydrated, I had ridiculously low blood pressure and neutropenic sepsis so I was whisked into a private room for a week and hooked up on IV antibiotics and fluids until my temperature stopped going bonkers and I began to feel vaguely human again.

This time round, after the third chemo, I was DETERMINED not to go back in. I was convinced we’d nailed it – Dr S had put me on injections to boost my white blood cells so I could fight any infection, and that’s what hit me last time, so I figured if we nailed that we were covered. I wasn’t prepared for the heat though. Bloody hell. By Friday evening, after a lovely day of feeling normal and going for lunch with my godmother, I was stretched on the sofa feeling roasting hot, but shivering cos my skin felt cold. I think last time it’s what I knew as itchy skin day, and I ignored it, but this time I took my temperature like a good girl, watched it hit 38 and headed in for an evening in A&E.

We got to the hospital at half 7, I was in a bed on a ward at midnight. Turns out I’m not the only one who can’t handle the heat – the A&E department was stuffed with people who’d fainted, and an incredible number of football playing boys with their right foot in plaster. And despite the whole place constantly ebbing and flowing and nurses running from one patient to another to another while being told they should really be seeing another, they manage to maintain this incredible feeling of calm and competence. Still, after 4 hours, you’ve had all the calm and competence you can handle, and a bed next to the window with a fan is, quite literally, just what the doctor ordered.

Unsurprisingly, it wasn’t my lung (it never is my lung), and despite the temperature my white blood cells were up and working and there was no infection to be seen. This time, my calcium had decided to take a little dip so I had to lie there (now feeling completely fine) while they filled me up with the calcium that had been over-zealously sucked back into my bones only 3 days previously. I know it’s not the most grown up attitude, but I really do feel like I should sometimes just shut my trap (Ma and Pa B, for the record, I won’t…).

But now, I’m out. And I’m feeling fine. And fingers crossed I’ll be feeling fine for the next two weeks until chemo number 4 (four!). And I’ll forget all the horrors and waltz back into the chemo like the whole thing’s an absolute doddle. And if those horrors hit, when they hit, and I’m feeling completely, appallingly, bone-achingly horrid, then SURELY it means the chemo has to be working. And that must be brightest, shiniest silver lining of them all.