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.