Brighten my Northern sky

Well, internets, what a long, strange week it's been. Last Saturday morning I woke up in hospital, post-ascitic drain; yesterday I woke up in a hotel room in Manchester, post-Springsteen. What a difference a day makes. Or seven. Whatever.

In between these two things, I had a birthday. A big number, but not an important one. I'd asked people not to make too much fuss about it since, without wanting to sound like a self-righteous Facebook meme, all I really want is to not have cancer, and you can't gift-wrap that. But I got lots of books just the same, and several pairs of pyjamas (pyjama bottoms v useful for hospital, you can wear them under the hospital gown if you need to, and they're the best thing when you're having a drain, it looks stupid having a tube poking out the bottom of your nightie), and Lush stuff, and things; things including a Moomintroll tote bag (from lovely friend Joan) and a Troll bead and two rosebushes (from Judy, who is lovely by default). Equally lovely friend Nairne dropped by in the afternoon, fresh from a holiday in the Dominican Republic and, oh, yes, getting engaged, and showed off her absolutely-perfect amethyst ring; she brought some Gü choklit cake bars, too, so I even had birthday cake in manageable-sized chunks. And so everything in the garden was wonderful. (Everything in the garden actually is wonderful, as a matter of fact, and I would upload photos to prove it, only one of the side-effects of being ill, or possibly just of taking so many DRUGZ, is that I'm permanently shaky, so any photographs I take are seriously Dopplered.)

Because I am a girl who knows how to have fun, on Monday we were back at the Churchill again to get a PICC line inserted in my arm. That took an unconscionably long time; we were booked in for 10 in the morning, but it turns out they book everyone in for 10, and then take them one at a time. I was last, that probably goes without saying. It went okay, although I had some last-minute qualms about whether I really wanted it done just before I went miles and miles away for two nights - but the line nurse assured me it would be fine, which it was. The only slight hitch was that she inserted slightly too much line, and they had to pull it back 4 cm or so. I'm told this is not unusual. Maybe it's just me, but I feel it should be. Anyway, PICC line: sorted, and they even christened it by taking my pre-chemo bloods through it.

Tuesday - surprise, surprise - back to the Churchill again, this time for an afternoon chemo session, and I have to say that the PICC line really did save a lot of time, and a lot of painful jabbing. Other than that, the whole thing was pretty much unremarkable. The pre-chemo Piriton sent me to sleep, which it always does and which, on the whole, I think is a good thing, else I'd have to stay awake and read the hospital magazines, some of which date back to 2005 and all of which are still to this day obsessed by Princess Di.

Wednesday we wandered into Bicester; Judy got her nails done, and I pottered around and did a few useful bits and pieces. I didn't get my hair cut off, there was a huge, long wait, but I established that the walk-in salon will do it without making "Eww, icky cancer!" noises. So one would hope, but you never know. 

Lynn arrived on Wednesday evening, to house- and cat-sit for us while we were away, and we set out for Manchester late Thursday morning. I was vaguely worried/annoyed to find that, for the second week in a row, my ankles had swollen up - which I suppose must be a chemo side-effect - but since they had un-swollen again the previous week without too much bother I decided not to stress about it.

The drive went smoothly and without undue incident, and we got to the hotel mid-afternoon. Checked in. Discovered, to my distinct lack of amusement, that, whilst Premier Inn are happy to advertise hotel rooms "from £27 per night", ours was going to cost us £50 for the Thursday and £100 for the Friday. We could've booked a proper hotel for that, or near enough. It was a horrid room, too; small enough that I was afraid it would trigger my claustrophobia, and absolutely boiling hot. It was 23 degrees when we checked in, and only got hotter. That meant having to leave the window open - as much as it would open - all night, which meant constant traffic noise, which meant goodbye to the hotel's "good night's sleep" guarantee.

Friday morning I pretty much insisted we go out, because I couldn't stay in that room all day. I'm afraid that I shall never love Manchester (I've just noticed that I've typed 'Birmingham' for 'Manchester' throughout this blog, and have just had to go back and change it. All these places are alike to me) - as I was saying, never love Manchester as perhaps its natives love it. It was absolutely pissing down with rain, and didn't stop all the time we were there, and nothing looks its best under those circumstances, but I'm not entirely certain Manchester has a best to look. No doubt I'm wrong. We didn't do much except stagger round the Arndale Centre and pick up a few bits and pieces, but that was more than enough for me, I had to keep finding excuses to sit down as it was. Then we got a taxi back to the hotel, and got lost. We got found again pretty fast, but still. Unimpressed.

There were rather a lot of taxis involved in our flying visit. It's not my usual mode of transport, but when you're in a completely strange town, not very well, and it is, as I said before, pissing down, you don't really want to be standing around waiting for a bus to who-knows-where.

So, back to the hotel, to doss about in the nasty, hot, stuffy room until such time as we could reasonably get changed and make a move stadium-wards. On the whole, it's as well we didn't leave it too late, since the reception staff had made a total hash of ordering cabs for people going to the concert, and the lobby was in chaos. We just grabbed the first taxi we saw, on the grounds that if it wasn't ours then it ought to be, and took another stray couple along with us as a proffering to the taxi-gazumping gods, if there are any. Horribly congested roads all the way to the stadium, but we got there in the end; avoided getting our bags searched, not that there was really anything in there that could be objected to - I had, for once, remembered to take out my Swiss Army knife; climbed up, and up, and up, and up to level 3, which is about 20 miles in the air (I may, perhaps, exaggerate just ever so slightly); found our seats, and settled in for the duration.

BRUCE!!!

There is no point my trying to talk about the concert; you've either been there and get it, or you don't. There's a setlist and some linkies here. It's enough to say that for three and a half hours I almost completely forgot about being ill, and jumped around and danced (okay, jiggled from foot to foot) and waved my arms about - it is v annoying my PICC line having to be in my right arm, that's my air-punching arm - like an idiot. The woman next to me was doing the same, but rather more so, so I didn't dare sit down too much for fear I might lose an eye. (The woman next to Judy clearly hated the whole thing. There's no pleasing some people.)

And then it was all over, and there was nothing left but to pick up and go back to the hotel. Or try to. I'll draw a veil over the sheer awfulness of that experience. The authorities had decided that the best way to get rid of however many thousand people was to round up all the city centre buses they could and ferry them out that way. Which meant a bus queue ... I don't know, it must've been about a mile long, it took us a good 40 minutes to get to the end of it. And then the slow shuffle forward, eventually squeezing onto a bus with no seats left (that's when I really wished I'd had my head shaved so that I'd look properly cancery and someone would give me their seat). The bus itself only moved at a crawl, even once it got away from the stadium. And then it dropped us somewhere in Manchester - allegedly close to Piccadilly Station, but we never saw it. It was 1.00 in the morning, we were lost, and the nightlife of Manchester was just picking up steam ...

It could have been quite nasty, but, for once, the guardian angel was on duty and doing his job; a cab dropped off a fare just where we were standing, and we grabbed him before he could get away, although this involved having to crawl through a pavement barrier. Back to the hotel room, now hotter and stuffier than ever; undress, attempt to unwind, and crash.

At least we got some sleep that night.

Saturday morning we waved a thankful goodbye to all points north and headed back down the motorway again. I would never have thought I would be so grateful to see the county sign for Oxfordshire ...

So, basically - everything pretty much sucked except for Bruce; but Bruce made up for everything else sucking. I have decided that I shall give up conventional cancer treatment and instead buy a camper van and some garments fashioned of patchwork and untreated leather and just follow Bruce around the country for the rest of my life, since he clearly has miraculous healing powers that have hitherto been untapped.

Not really. I can't drive, for a kick-off. Or sew, so so much for the patchwork. Eh, well; it was a lovely thought.

To cheer me up, now that BruceDay has been and gone and I have nothing else to look forward to until The Hobbit comes out in December, I had an excellent stack of mail waiting for me: my discount voucher from work, which apparently I can still use, despite having been off sick for over a year; two £2 vouchers from the Co-op (hey, it all helps!); a bank statement that showed that the JobCentre's paid the back payment they reckoned they owed me, which is worth having; and confirmation from my hospital insurance company that they'll pay me for all my recent stays in the Churchill, which is also worth having. (I know it's not polite to talk about money, but it is such a worry.)

And Lynn was well, and had even cut the lawn for us, and the cats had been good, and everything in the garden ... oh, I already said that. Well, it was. And it is.

And today the sun has come out.

View from the bedside chair

[Judy wrote this. She had lots of time for observation and contemplation yesterday. I, at least, had the occasional break. Judy pretty much got to sit for ten hours.]

“Arrive early, 9ish, so we can do bloods,” said Dr Khan on the phone.  “The radiologist doesn’t work on Friday, but we can probably do the drain on the ward.”  It all started well – we got there at 8 (no traffic!). they were actually expecting us this time, Hilary was admitted fairly quickly and there was a bed, which was even ready for her.  Amazing.  “I’ll come back and take bloods,” said the nurse.  We waited.  We waited some more.  “The doctors are in their meeting right now,” said the nurse.  More waiting.  A doctor eventually shows up, prods Hilary’s stomach, agrees it needs draining (because, I can only assume, they thought the Head Oncologist who said it needed doing might have been wrong).  “The drain will probably be done around lunchtime,” they said.  We waited.  Lunch arrived (for Hilary; they don’t feed – or even provide coffee – for visitors on this ward).  Around 2 I went to get coffee and remarked to Stuart, the helpful male nurse, that nothing had happened yet.  “I’ll chase it,” he said, and five minutes later stuck his head round the day room door, “the doctor’s on her way.”  I returned to Hilary and informed her, and sure enough a doctor did turn up to install the drain.  “I’ll go for a walk,” I said.

I went down to the lobby, browsed through the nice clothes shop and bought three T-shirts (cheap, honest) and asked after a post box.  “There’s one by the pharmacy,” I was told.  Ah, right, that’d be the pharmacy that’s right the other side of the hospital.  So I did an entire circuit, one way there, a different route back, and eventually arrived back at the ward to find the curtains still ominously drawn around Hilary’s bed.  Inserting a drain usually takes, oh, 5-10 minutes.  I had been gone a LOT longer than that.  The doctor reappeared and said, “There’s a problem,” and disappeared.  “She’s gone to check the scan,” said one of the nurses helpfully.  “There is no recent scan,” I sighed.  Doctor reappears. “Don’t worry, I checked earlier with radiology and they assured me if we couldn’t get the drain in, they would fit her in.  I’ve just rung them and they think they can do it.  They shut at 5.30.”  This was about 2.45 (so we had already been at the hospital for nearly 7 hours).  Oh, and hadn’t Dr Khan told us the radiologist didn’t work on Friday?  We called him some names, I can tell you.

We waited.  And waited.  At 3.20 I wandered out and the nurse said, “Oh!  They’re just coming for her!” and vanished, so that when the two porters did arrive 10 minutes later they had to hang around for another 10 minutes before she showed up to agree there was no need for medication.  And off Hilary went on her bed, leaving me (and Java) with a vast area of empty floor to contemplate.

I read.  I read some more.  4.30 came and went, still no Hilary.  I began to get concerned.  4.45, I mentioned my concern to the nurse, who basically shrugged, but did agree if she hadn’t showed up by 5:15 she’d ring them.  4:55, Hilary finally reappeared, with drain inserted, but no bag attached.  The nurse looked worried and vanished.  She came and took blood pressure, vanished again.  Eventually – about 5:30 – she reappeared with a senior nurse who talked her through putting the bag on the end of the drain, all the while assuring us that she was just ‘reminding’ the nurse ‘who did know how to do it’.  Right.

The drain takes about 6 hours normally, so it was obvious at this point that Hilary was going to have to spend the night.  She had a bed on the corridor side of the bay, so no window this time.  The other three ladies in the ward were all elderly, one who had been admitted because of repeated bouts of sickness, but who was determined she was going home and would be fine.  She was seen by two different lots of physiotherapists, who wanted to establish if she could walk unaided and manage steps, but when two porters arrived to take her for a scan she was surprised – no doctor had visited her or told her this was going to happen.  In fact, all three of the other women in the ward were, during the course of the day, taken for scans they hadn’t been told they would be having – although in fairness to the ward doctor who was trying to explain what was going on to one of them, he was interrupted twice by his beeper, so I’m not surprised he couldn’t keep track of what he’d told her and what he hadn’t.  The other two ladies had issues with breathing due to ascitic build-up; of course – as we have good reason to know – breathing difficulties are dealt with right over the other side of the hospital (quite near the post box, indeed) and although a chest doctor did show up and talk to one of them, it wasn’t the lovely Dr Naj and all he told her was they might be able to drain it on Monday, which basically left her on oxygen for three days ...

A gold star to the catering team, who greeted Hilary even before she had a bed and checked what she wanted for lunch and dinner, and came by to make sure she’d had it, too.  Nil out of ten for the ward organisation.  As far as I can make out, the doctors spend more time in meetings and chasing around trying to find the one person who’s allowed to make particular sorts of bookings or do particular tasks than they do actually dealing with patients ...

[The ward doctor did actually manage to get the drain in. It just ... didn't drain. So now I have two punctures. Ow. Radiology took so long because the doctor was with another patient when I got there, which took about half an hour, and then afterwards there weren't any porters for a good 20 minutes. I was a bit worried, when I got left on my bed in the corridor, that I would end up as one of those horror stories you read about in the Daily Mail, if you read the Daily Mail, which I hope you don't.  The drain is supposed to come out after six hours - it gets more painful the longer it's in. Mine got removed around midnight, but at least it did get removed. And another gold star goes to Stuart who, when I told him this morning I'd had my drain, said, "About bloody time," which I am sure nurses are not supposed to do. I re-read nearly the whole of Flora Segunda over the course of the day - a YA title vastly superior to any of the ones that get all the publicity. And also, mysteriously, my MP3 player lost Radio 2, leaving me with only Radios 1 and 3 to choose from, neither of them much use to me. On the upside: no faffing about letting me go this morning. I had breakfast, had a shower, then just went and sat in the day room until Judy turned up. That was the grimmest ward I've been on yet, other than the poo ward where I ran away.]

Arse, meet elbow

And another Churchill!fail. Yesterday, you will remember, I didn't get the tummy drain I was promised because I had a radiographer appointment but no bed. And they promised faithfully that they would fit me in tomorrow.

Today I had a phone call from Omar, the doctor I spoke to on the chemo ward on Tuesday - the one who organised, or not, the drain in the first place. Tomorrow I have a bed. But the radiographer doesn't work on Fridays ...

Can I come in Monday? No, I can't come in Monday. I'm having a PICC line inserted on Monday,and I don't know how long that will take. I can't come in Tuesday, either; I have chemo on Tuesday. Oh, and by the way, I'm in pain right now.

So he went away for a bit, and then he came back and said okay, they'd insert the drain on the ward. (I've had this done before, and it seemed to work okay.) Can I come in first thing tomorrow?

Assuming we can get out of bed and through the traffic, sure. When's 'first thing'?

10.00? he suggests. Or no: make it 9.00 so they can do bloods first.

I only had bloods done on Monday, before chemo, but whatever. At this stage, I'll say yes to pretty much anything.

So, there won't be time for an update tomorrow morning. Judy and I, my bag and my bear, will once again be wending our way through the commuter traffic, in the faint but pursuing hopes of who-knows-what.

Stay tuned.

Normal service has, unfortunately, been resumed

Remember how yesterday I blogged in some excitement because the Churchill had managed to do a few things right?

Well, scratch that. The doctor who was intelligent enough to come down and find me in the Day Treatment Unit to let me know that he'd booked me a tummy drain rather than trying to phone me at home when I wasn't there, was, unfortunately, not intelligent enough to book me a bed on the ward at the same time. No bed, no drain. So we traipsed all the way over there for the third time this week, bag all packed and bear in hand ... then hung around in the day room for a couple of hours, and then traipsed back again. Undrained. I know I said I didn't want an overnight stay, but this was not what I meant!

A nice little nurse scurried around quite determinedly on our behalf and he swears, cross his heart, that he has rescheduled both drain and bed (well, just scheduled bed, I suppose) for Friday. I'll believe it when I see it. Also, that means that I won't get my visit from Tim this week, so major sulk about that. *grump* And also it means that we will have been to the Churchill four days out of five this week, and the petrol mounts up. Imagine if I were having to do it by public transport!

It is quite a pretty drive: I'll give it that. The horse chestnuts and the hawthorn are over now, so you may cast as many clouts as may gladden your heart, but the elderflower is in bloom, and there are wild roses, poppies, moon daisies, ragwort, and some rather straggly but grimly determined Queen Anne's Lace. And everything is very green. Everything that isn't under a foot of water, that is.

I may sound quite resigned and chirpy about the Churchill fking up, but I am actually so cross that my jaw has locked quite tight and I keep having to massage it to loosen it up again. Grrrrrr.

I have often felt inclined to get my treatment moved to the Horton, which is near Banbury. But (a) I have no guarantee that it would be any better - it's run by the same hospitals trust - and (b) I don't know how to go about it.

And no, LM, I don't really think that moving to Wales is a viable solution!

Never mind. Here is Java Bear, who comes to hospital with me and cheers me up.

He had his work cut out for him today, I can tell you.

Dies mirabilis

The Churchill was actually reasonably efficient today.

Yes, I'll give you a moment to recover before I go on.

Okay. You ready? Right:

1) Rose the Senior Chemo Nurse got the cannula in first time;

2) The chemo team had passed on my details to the line nurses, so I'm set (at least in theory) for a PICC line next week. Happy birthday to MEEEE;

3) A doctor from the oncology ward came down to find me in the Day Treatment Unit (where I was) to let me have the details of my next tummy drain instead of trying to phone me at home (where I was not);

4) We got through treatment in under four hours. Yay!

Let me rewind a wee bitty bit. Yesterday I saw the oncologist, which turned out to be Dr Nicum herself (I usually get a 

random registrar). She thinks I'm looking better - but then, I was practically at death's door last time I saw her, so I'm not sure that's saying much - and I certainly feel a lot better. Not physically so much, alas, but mentally; I've been in this awful mental fog for ages where I could barely speak or think or function and, by contrast, I'm now almost back to normal (not that that's saying much, and nor is it getting my book reports written; not that that matters, it's only for LibraryThing). I even came up with my very own intelligent question about what to do when we're in Manchester next week if I happen to be taken ill, which god forbid. (Answer: phone the usual triage number, but, if it's bad, go to Manchester A&E and shout "I'M ON CHEMO!" at them. I wonder if I could ask them about HIPEC at the same time ...?) However, my CA125 levels are still stupidly high, and, as you will have gathered, I need another tummy drain to get rid of a build-up of ascites. I was really hoping that the chemo would stop the ascites, but evidently not. Oh, well. It's a bugger, but never mind.

Oh - Shibani asked what we were going to Manchester for and, before we could answer, the student she had sitting in with her muttered "Bruce". That's my girl!

We also mentioned the problem the chemo nurses have been having with my veins, so she sent us off to the Day Unit to refer it to the line nurses and get the ball rolling. Which we did. While we were there, we got one of the chemo nurses to take my bloods, which saved waiting for the phlebotomist, who appeared to be on a go-slow; it was taking something like 15 minutes per person, and I reckon she was popping out for a cup of tea and a fag in between each patient. In which case, god help her.

So: consultant and bloods on Monday, chemo today, drain tomorrow, no jam ever. And my hair is falling out for the second time. FML, or not? 

Maybe not. As we all know, there are - all together now - plenty worse off. And hey, at least it means we get out of the house every day.

On a brighter note, my lovely sister Penny and her husband Mak came for a visit on Sunday - eventually; they got lost a couple of times en route. My nephew Ben had been going to come too, but I'm told he was too hungover. Tsk. Penny and Mak live in Penzance, so obviously I hardly ever see them, but they'd been on holiday to Bruges (churches and art galleries, apparently) and had stopped off in Bristol, where quite a lot of my family seems to have washed up, on the way home. It was wonderful to see them, even though Penny unerringly sat down next to the one bit of the sitting room I hadn't dusted properly! My unspeakable younger brother seems to be being an ass to Penny too now - it's nice to know it's not just me, that's all. Also, they brought cookies, and also also I thereby discovered that I can eat cookies, indeed, two cookies at a time, and I call that a win.

I'm hoping that Tim will be able to come and see me too, on Friday; that's always good, and will (maybe) cheer me up after all the medical stuff.

(Then the weekend, and then back to the Churchill for the PICC line and bloods, and then back to the Churchill again for next week's chemo, still no jam. Tea break over, back on your heads.)

Right. Drain tomorrow, and they might want to keep me overnight. It's scheduled for 1.30, and they leave the tube in for six hours, so ... we'll see. I hope not, but, if they do, I suppose I can stand it. Note to self: pack the bear!