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.

Being admitted… for the first time

I was going to write this whole thing chronologically, but it turns out I keep getting re-admitted, so for now let’s just talk hospital admissions. So far, I’ve been admitted three times. The first was the most eventful, so I’ll stick to that for now. So, in the time-honoured words of Jim Bowen…

Aaaaaand 1…

So…. Dr S and Vivienne came to see me at about half 9. I’d been in A&E since about 1am, and the bed manager was still looking for somewhere to put me. I barely had a clue what was going on, so doped up was I on pain killers and lack of sleep. Poor old Fanners though, had another five hours ahead of her and she knew exactly where she was and how long she’d been there. How she wasn’t swaying rhythmically on the spot and banging her head against a blood pressure monitor I’ll never know.

About 2ish, they came to get me and take me up to a ward, after a stonking 11 hours in my little A&E bunk. Walks had come to the rescue once more and appeared at the hospital with Fanners’ toothbrush and the like, and the three of us were taken upstairs. To a private room. A lovely private room with it’s own bathroom. Where a nice nurse called Nick came and told me he’d be looking after me, and a nice doctor called Jonathan came and told me he’d be popping me with a pin* and draining the fluid from my chest (*not his exact words) in about half an hour. Fanners and Walks unpacked my bits, tucked me up under the cashmere and all was well.

For about 10 minutes. Turns out it’s much more important to keep these private rooms for people who are infectious or susceptible to infection, rather than just sleepy and sore – something I got to find out firsthand a month later. So I was turfed out onto the main ward with the normal people. And when I got turfed out onto the main ward with the normal people, I got lost. Not physically (I couldn’t move), but y’know... They lost my notes, so the nurse refused to give me any pain-killers. Jonathan and his pin went AWOL. Fanners went mental. In the nicest, politest way possible, the way that implies that if things aren’t sorted NOW, it’s all going to kick off. I was essentially oblivious, but there’s a certain way of closing a hospital curtain with a whisk that even I knew meant that someone was gonna get it. I have no idea how long it took, but eventually one of the crisis care team arrived and seconds later a syringe of morphine was being jabbed into my arm.

About 4ish, Jonathan re-appeared in a flurry of abject apology. For all my whinging and claiming at the time he’d abandoned me, he’d found the one person in the hospital who could supervise him inserting my drain and stuck to her for the past two hours like glue. Where she went, he went. And where she went, he told her that she should really be heading in my direction. He must’ve been beyond irritating. But it worked, and the two of them appeared in my little cubicle with an ultrasound and a handful** of tramadol (**not a handful).

The tramadol were mental. I was propped up on the table facing the wall. First of all I kept telling Analie to look at the way the paint was moving on the wall. Then I’d slump and start snoring. Then I’d jerk awake and get a fit of the giggles at the poor old lady in the next cubicle who was having a few… let’s just say… bowel problems. Loud bowel problems. Then back to the paint, slump to sleep, wake to giggles. This carried on throughout, with poor old Jonathan fighting to keep me in one position so he could actually get the drain in and hit the fluid, and Analie trying to loosen the death grip I had on her hand. From what I could tell, he was inserting needles in the same place, each with a bigger and bigger bore, until it was big enough to fit a tube through. All while looking at my chest under the ultrasound to make sure it was hitting the right spot. All while I was wriggling about off my box on tramadol.

When he did hit the right spot, it went everywhere. Yellow liquid at high pressure - all over my feet, all over the floor. Another fit of the giggles and an announcement to all who would listen that I’d essentially weed *** on my own feet (*** without tramadol, I’m well aware my bladder and lung are in entirely different places). I think it was at this point lovely doctor Jonathan was beginning to wish he’d spent a bit longer finding his partner in crime.

Drain in, a squirt of oral morphine, a completely mis-timed (and probably highly inaccurate) question and answer session with a couple of medical students (“Are you in pain?” was greeted with a snort, quickly followed by a wince), and off to bed. At this point, the cashmere was taken home (better safe than sorry) and off I drifted for the night.

Next morning and Fanners had the horrendous job of ringing Ma and Pa on their jollies to tell them that muggins had gone and got herself another hit of the Big C. (We didn’t want to ring them the day before when they’d have no choice but to dwell on the news overnight before being able to get a flight back in the morning). And that phone call led to a Planes, Trains and Automobiles-esque voyage across Greece to get to the airport and back to Stansted where Walks was waiting to whisk them down to the hospital. Analie rang them at 7.30 in the morning and they were by my bed by half five. Luckily they appeared with a “What the bloody hell are you doing back here?” – not sure I could’ve handled anything else…

Meanwhile I was scooped up and taken to another ward, one that was to be my home for the next week and a half. A window spot with a view of London and the loveliest of nurses to pull me upright when needed (couldn’t manage it on my tod) and I was settled. I can’t even describe how much respect I have for the nurses – they have to do what I would consider to be the most revolting of things, and throughout they have smiles on their faces and time to come and give you a hug when you’re staring out of the window in tears and visiting hours and a Ma Booth cuddle are still three hours away.

And from that point, the days passed, as they surely do. Once in a while a CT scan or a chest X-ray to provide a point of excitement (I made new best friends with 3 of the porters who had to wheel me round from A to B and back again). On one horrendous day, the ward consultant (a man who knew nothing about me or my history or my prognosis) took it upon himself to come into my cubicle and force his registrar to tell me that the CT scan had shown cancer in my liver. This was the first we’d heard of cancer in my liver, my oncologist hadn’t been told, and this muppet had no idea whether it was another metastatisation of the breast cancer or how it would be treated. I went mental (there was a lot of swearing – sorry Ma B), and a lot of “Get OUT. Get out NOW. I DON’T want to see you in here AGAIN”. We were a mess. I mean, really, what do you do when someone announces that kind of news out of the blue? Other than shout, swear and cry, obvs. A lot. Of all of those three. For a good half hour.

Luckily, Vivienne (breast care nurse) appeared to pour oil on our troubled waters – it had appeared in the liver, but it was another manifestation of what was in my bones and round the lung, so would be treated in exactly the same way and was eminently treatable. While she was explaining Fanners appeared, whisked the curtain closed in that special way of hers, and the pair of them trotted off to find the two doctors who’d considered this to be the world’s best way of announcing a diagnosis and tell them exactly what they (and we) thought of them. Luckily, the poor chap who was tasked with telling me realized that things could’ve been handled a touch better, and has since become one of my favourites. The other bloke though, the ward consultant who as far as I’m concerned bullied him into it, can do one.

More boring days, a touch of pneumonia and a bleed from my liver biopsy that caused me to do a weird faint thing, and finally, finally I was allowed home. It helped my cause that Ma and Pa B arrived in my cubicle at the same time as Dr S to announce that they’d hilariously fed the wrong cat the night before and encouraged him on to the sofa for cuddles, only to look up and see poor old Oliver at the window looking on in abject disbelief… It was time to go home. Home for one night in my own bed before heading back in in the morning for chemo to start all over again…

A&E...

And so it begins…

Wednesday morning and I get a call from Dr S. Apparently, I have very high level of calcium in my blood, which in itself is indicative of cancer. Not definite, but indicative. And given the suspicious-ness (is that a word?) of my MRI, it’s not a great sign. I did a pretty good job of trying not to cry down the phone, but I failed pretty miserably, and agreed to get to the chemo suite asap so they could put me on a treatment that would help suck all the calcium back into the bones, where the cancer was doing it’s darndest to leach it all out.

So, another call to Fanners at work asking her to drop everything. Her lovely housemate Walks came straight round to pick me up, and off we went, a not-so-merry band, back to the Whittington for the day. Straight in, hooked up and reading Heat magazine before you could blink.

The chemo nurses were their lovely, amazing, usual selves. Lots of hugs all round. One of them said they’d seen my name on the list that morning and were all hoping it wasn’t me (not that I’m not the model patient – let’s be clear). Unfortunately for them (and me) I can’t seem to stay clear of the place.

The calcium drip had to be given with two litres of fluid, so getting in there at half 12 meant that I was in there til about five. But I left feeling fine, home to see my lovely friend Sherwoo (another Lucy, and therefore one of the hilarious “Two Lucys” – we’re like the Two Ronnies but not as funny, and a bit prettier. We reckon anyway). An evening in front of the telly with take-away sushi and America’s Next Top Model. Just what the doctor probably wouldn’t have ordered.

When she left, I popped off to bed. Climbing the stairs made me feel really breathless. Like, reeeeeally breathless. I could only really pant. I’d had the odd bit of feeling breathless over the past few weeks, but nothing like this. So I lay down in bed thinking that it would pass. It didn’t. And then I began to feel horribly, horribly sick. When I threw up, my whole back went into spasm. I can honestly say I have never, ever, EVER been in that much pain. I’d knelt on the floor to reach the bin, so when I was sick, I ended up lying on the floor in a weird, twisted, crunched up ball of pain. Somehow I managed to shunt myself over to my phone where I rang Fanners and told her I thought we’d need to get to A&E. I’ve never, ever, EVER been so ill that I thought a trip to A&E was needed. Fanners takes pragmatism to a whole new level, so she told me to call Dom (my housemate at the time) and get him to call an ambulance, while she popped on her trainers and legged it round to mine. Thankfully she lives at the end of my road.

Poor Dom. It’s not what you sign up for when you move in with someone is it? A snivelling, bunched up wreck and a midnight call to 999.

Turns out 999 didn’t think I was that important though. “Not an urgent case” I think is how they phrased it. Even when he put me on speaker and I explained (in tears) that I couldn’t move, couldn’t breathe and was in the process of being diagnosed with secondary cancer. Nope, I was to call 111, who would assess the situation and ask a clinician to ring me back. There was a LOT of swearing going on round about now (not to the operator – I’m not an animal), but a LOT of swearing nevertheless.

When Fanners arrived, 111 called back and someone there saw sense, sending an ambulance to me within 8 minutes. Cut to three ambulancemen crammed into my bedroom to save the day.

Getting me on my feet sent the pain to a whole new level. The only way to get me up and out was for two of them to grab an arm each and pull me into a standing position. Oh. My. God. They offered me a chair downstairs, being carried by their charming colleague John, but my stairs are pretty precarious, so the thought of being tipped out half way down was more than I could bear. So off I went, one step at a time, out to the back of the ambulance. So. Much. Pain.

(Incidentally, when we got in the ambulance, the nice ambulanceman asked me on a scale of 1 to 10 how much pain I was in. I said 7. I can only think I didn’t want to cause a fuss… This is in brackets cos I have no recollection, but apparently Fanners and the ambulance crew exchanged some pretty odd glances. When he asked me what the pain was like when he pulled me to my feet, I said it was a 15. Turned out that was a much more acceptable answer).

So, off to A&E with an oxygen mask and the cashmere blanket (I’m so North London). They also gave me gas and air, which I was really looking forward to, but it didn’t make a dent – mainly cos I wasn’t able to breathe it in so got none of the benefit. Curses.

We arrived at A&E – more throwing up, more swearing, and an apology to a little old lady in the room next door for my appalling language.

When we were eventually seen, it was by a doctor who was seemingly blind. Ordinarily your blood oxygen levels are supposed to be 98 – 99%. Mine were 79%. But because I was wearing nail varnish, he kept blaming that for the monitor they put on your finger not reading it properly. So then he decided to take some blood from an artery in my wrist. Bloody. Hell. That. Hurts. But because my oxygen levels were so low, he didn’t believe the blood test (he popped his head round the curtain, nodded in my direction and said “look how pink she is – she looks completely fine”. I had a temperature of 38 point something). So he decided to do it again. Luckily, a lovely nurse spotted my face, ran off and grabbed some numbing spray, so I was saved the pain. If anyone EVER waves a needle in the direction of an artery, deMAND numbing spray.

Off he pottered to get the results, coming back immediately to clamp an oxygen mask on my face. Turns out the machines and the test were right, and I was struggling by on not nearly enough oxygen.

So there we stayed for the next few hours. Me dozing in and out and rattling with pain-killers, Fanners on a hard plastic chair trying (and failing) to get some sleep and reading out loud to me from my book. Fanners, if I haven’t said it before, is the best bloody sister money can buy.

After a bit they came to get me and sent me for a chest x-ray. Which was fun in itself as even with pain relief getting from lying to sitting and sitting to standing was excruciating. And for some reason I only really wanted Fanners to help me, so I was being a right moany cow.

Turns out the breathlessness came from having an entirely collapsed left lung. I say entirely collapsed, I’ve seen the x-ray since and there was a bit of a gap the size of a satsuma, but to all intents and purposes I was functioning on one lung.

As soon as the clinics opened in the morning (i.e. about 9am – so I’d been in A&E for 8 hours at this point), Dr S and Vivienne came to visit. Turns out that the cough I’d had for a few weeks wasn’t a side effect of my blood pressure tablets, it was probably a sign that the cancer was hovering around my lung as well. And when I was flooded with fluids for the calcium treatment, they’d gathered in my pleural cavity (between my lung and my ribs), where cancer cells had been irritating the lining and essentially forming a big blister. So the 2 litres of fluid added to that and my poor wee lung just gave up. The next step would be to find me a bed and drain the fluid from the gap.

This was also the point at which Dr S said “I think it’s probably time you rang your mum and dad and told them what’s going on, don’t you?”

Yup. Probably not a bad idea.

Here We Go Again...

So, in the words of Whitesnake (circa 1987)… Here I Go Again. Although that’s probably the only line I can actually lift from the song, cos it’s not the only road I’ve even known, I’m not walking it alone, and I’m not a hobo. Or a drifter (depending on whether you’re listening to the album or the single version…).

Let’s start at the beginning. Around about the Easter weekend, I started with a bit of a bad back. By the late May bank holiday I couldn’t get out of bed without commando rolling onto my elbow and pushing up on my knees to get myself upright. So I went to the physio, she squished me about a bit and it felt a bit better. For a day or so. Went back, more pain than I’ve ever experienced, back spasms blah blah blah and she suggested I went for an MRI scan to check it wasn’t a slipped disc.

So I went to see my GP (of course this wouldn’t be the cancer back would it? Why on EARTH would I go to my actual hospital to check it out. Idiot.). And my GP sent me off to a private clinic in a weird shed in Tottenham on a Thursday afternoon where I got changed in a portakabin and lay in a shed while the weird machine noises took over and I enjoyed 20 minutes of Heart FM.

And then, it all went a little bit wrong. On the Monday morning I had a call from the doctors, asking me to ring the hospital for the results of my MRI scan. I was in the office and I completely lost it. I couldn’t think why the hospital would want to see me for the results of a GP’s test. Well, I could think why, and the only thing that made sense was that it was back. It was the only, only reason for the hospital to get involved. And I couldn’t speak – just had to get out and away and lock myself away and cry in the loo and hyperventilate a bit. Which is where lovely Katie found me, scooped me up, hopped in a cab with me and came up to the Whittington to sit and wait. And wait. It was probably an hour and a half, but it felt like a bloody month.

Eventually I saw my breast care nurse – Vivienne. They’d seen something suspicious on the MRI but without seeing the oncologist and without seeing the actual images, they couldn’t say what it was. More tears. I didn’t want it. I’d done it all before and the thought of having to do it all again was absolutely hideous. But the oncologist couldn’t see me til 3.30, so Fanners was called at work, dropped everything and came straight up to the Whittington to sit with me and hold my hand and tell me we’d deal with it, whatever “it” was and pass me hankies while we waited for three hours to see my oncologist at the end of her clinic.

I liked her immediately – she reminded me a bit of Fiona Bruce. There was something suspicious, she didn’t know what exactly until she saw the images from the MRI, but it looked like the breast cancer had potentially metastasized into the bones at the base of my spine. She didn’t sugar coat anything, she didn’t promise me the world, but she told me in a way that made things eminently dealable with. She couldn’t be sure, but she didn’t want to build up my hopes, only to tell me next week that I’d be starting all over again. And she was pro-active – if I did need to re-start chemo, I would need to have an echo, so she booked me in for one the next day. And if it had come back, I’d need a CT scan to check if it had gone anywhere else, so she booked me in for one on the Thursday. If you’re going to be told awful, hideous news, hope beyond hope you get told by someone like her. I had the exact opposite experience a week and a half later and it was the worst hour of my life (more on that another day).

So, for now, all we could do was wait. Ma and Pa B were on holiday in Greece and there was no point telling them anything until we knew what we were dealing with, so Fanners and I agreed that we’d wait until the following Wednesday when we saw Dr S for my results, and if it was bad news we’d summon them back from the sun then. So off we popped, home to a cup of tea and the cat and the awful limbo of waiting for results. Just as it was last time the not knowing is the absolute, worst bit.

Apart from on Wednesday, when it all went a little bit wrong again…