Ten is a bird you must not miss

Crikey. More magpies than I think I have ever seen in the car park as we left the Churchill this afternoon. Enough for a wish, at least, if not a letter. Maybe even something better.

All of which I deserve, if you ask me.

Two weeks ago - almost exactly - I was watching Merlin when I started to be violently sick. Do not be like that: I like Merlin. It quickly became clear that this couldn't be left until the morning, so I had to drag poor Judy out and beg her to get me (and the bear, and the go bag) to the Churchill. It only took two hours - or was it four? - to get this organised with the Churchill, who finally found a bed for me on the Lower GI ward. Sounds nasty, but it wasn't as bad as it might have been - I managed to get a first-class bed in a side room, with its own telly and all, so I had privacy, and didn't even have to miss Downton. And the staff there were very good. Way better than on Oncology!

Of course, it couldn't last, and they dragged me back to an Oncology bay by the end of the week. Ah, well. While it lasted, it was good. I was there for the weekend: then they moved me to the Sobell House Hospice, where I have another side room. The Hospice is very pleasant - rather like a cottage hospital in a children's book from the 1950s - although, obviously, I would rather be home - safely - and well. But, for now, I shall be grateful for how lucky I am.

I have had something of a problem with isolation, being in hospital for so long with no access to the outside world. Apparently there is WiFi in the Day Treatment Centre though, so I may take the netbook with me when I go back.

Currently I am on what they call "weekend leave" - which makes me feel as though I should have an ankle tag. Well, I do, pretty much: I have a hospital name band on each wrist, my PICC line, and a morphine pump with a subcutaneous attachment. The pump is a wee bit large and bulky, and has (of course) been dropped several times, but it gives me some relief, so again it is something to be grateful for.

The problem remains the same and shows no sign of getting better. I am expecting/hoping for a permanent ascitic drain to be installed at some point, which I hope may give some relief. Other than that - well, let that remain behind the veil.

Speaking of being behind the veil, I damn' near was myself, or so I thought for a bit, when an exceptionally clumsy doctor informed me that I had only a few weeks to live. Ulp. What?! But then he caught me in the corridor shortly after and said no, he had read my charts wrong and things were not that desperate.

Um. Better that way round than t'other ...? I don't really know what to say. Other than, of course: twat.

So, here I am back home, if only for a short time. It's lovely, although I'm still a bit panicky. But, as Judy pointed out, the Hospice can't keep me forever. If only there were some way to have a nurse on call constantly when you're at home!

Thank you to everyone who has been so kind and supportive, with gifts and their time. I'm too tired and wobbly to reciprocate fully or in kind, as I would like, but I am very thankful.

Most of all, as you might imagine, for Judy. I can't even begin to tell you how wonderful she's been, or how grateful I am, or how much I owe her - for these two weeks, and for all the time since I've had cancer, and for all the years before. I never said it enough, and I'm sorry for that; I wish there were some way to make it up now.

I suppose everyone wishes that. I am sure there were eight magpies in the car park. That should be plenty - ?

Overly interesting times

We've been shopping today, or trying to shop. I want a new winter coat. I've been approved for disability living allowance, and even got a back payment, so I can afford to buy myself a pressie. If I can find anything I like. What I would really choose to do, if I could, is send my old coat through a time machine and have it new again. It's excellent - lovely and warm, and so big it wraps around me twice - but I've had it for at least ten years, more like fifteen, the corduroy's all worn flat and the cuffs are frayed to shreds. Nothing lasts forever, try as you may.

But before we went shopping ... well, where do I even start?

I might as well pick up where I left off last Monday, when I said I did not have a good feeling about the week. How very right I was ...

Monday, in all fairness, was not too bad. Okay, it began with cat wee and a tax demand, but it continued with a call from a nice district nurse - one from another area, who made no fuss at all about the dressing change, I would've liked to have kept her - and a lovely long visit from my brother, who I hadn't seen for ages what with one thing and another, and ended up with a trip to Caro's (Judy's car still terrifyingly leaking coolant), for yummy food and cuddles with kittens. Cuddles with kittens, like Time, is a great healer. Are a great healer. Whatever. That sentence isn't going to work whatever I do to it.

Tuesday: our neighbour knocked on the door to ask if he could prune our tree a bit where it hangs over his wall. (It's a greengage tree, and the fruit is absolutely delicious - when it has fruit, and when we can reach it.) Yes, of course, I said, we'd been thinking about getting someone in to cut it back, but we couldn't really afford it. Oh, by the way, he said, did we know that our fence posts had rotted through, and the fence was very likely to blow over if we had a strong wind, taking Judy's greenhouse with it ...?

No, I did not know that. Huh. New fence. Wotthehell, it's only money. It grows, after all, on trees.

On the plus side, Mr Next Door is a builder, and Judy went round later, came to some arcane arrangement with him whereby he would handle the fence replacement, and came back waving a hairdressing flyer and with an appointment for me with Mrs Next Door. It turns out that the extension that Mr built a few months ago is not, as I'd assumed, a playroom for the kids, it's a teeny-tiny hairdressing salon for Mrs. And jolly lovely it is, too. Lucky Mrs.

The rest of Tuesday was chemo, which was singularly un-noteworthy, other than that there were a couple of different nurses on duty. One of them a man. Gasp! I've been going to chemo so long, I know all the nurses there, so that came as a bit of a shock. Not much of one. Just a bit. So: chemo; sleep. It's the way of the world.

I had meant to ask Judy to take me into Bicester on Wednesday to see if I could get my hair cut there - I had to get rid of the granny curls, they were driving me mad - but it was one of those post-chemo days when I could barely drag myself out of bed, so I was very glad that I only had to pop next door instead. Mrs did a lovely job and sent me home with a very fetching elfin cut. Alas that I do not have an elfin body to go with it, but such is life. Alas also that, without a professional's tender care, it becomes more reminiscent of TinTin. But we care not. Our mind is on Higher Matters. Well, no, our mind was mostly on going back to bed.

Later on, Judy phoned Lynn to find out whether she was still good to come and catsit over the weekend, since we were supposed to be going down to Bristol for my sister-in-law's surprise birthday party - only to discover that poor Lynn had food poisoning, which is nasty enough in its own right (don't I know it), and also screwed up her diabetes. So the whole catsitting question had to remain up in the air.

I don't think anything particularly disastrous happened on Thursday. Judy got up spectacularly early, took the car up to Aylesbury for servicing, came back with the world's ugliest courtesy car, and then we went and had lunch with Sabine at the garden centre (it is funny how heavily garden centres feature in middle-aged life). The saddest thing about that was all the yummy-looking cakes they had - the sort of cakes one could only dream of as a kid, when our mother's idea of a treat was a rock bun - which I couldn't even fancy. The sandwich I ate took its best shot at killing me as it was. Back to bed for me. This happens a lot.

Friday. Lynn was feeling well enough to come up, which meant we were all set for Bristol, so hurrah! on both counts. Foolishly, we relaxed for a few minutes ...

... just long enough for JennyCat to come home at eleven o'clock at night, slink upstairs without eating, which is most unlike her, and, when checked, turn out to have blood all over her mouth and be in a state of shock ...

As were we. Fortunately autopilot kicked in, and we phoned the out-of-hours vet (a £103 surcharge? Sure, that's no problem!) and rushed her round for a checkup. The vet looked her over and came to the conclusion that she'd hit her face somehow, had possibly fallen or been hit by something, and that she had a broken tooth that would have to come out. It'd be fine for the weekend though, she said, they'd have her in for surgery on Monday; could we just make sure she got a painkiller in the meantime ...?

Um, Lynn? You know how all you usually have to do is open and shut the back door and make sure there's food down ...

I am abusing ellipses like nobody's business. This must stop.

At this point I came to the conclusion that the Bristol trip was Cursed. First the car, then Lynn's tummy, now this. But Lynn assured us that she would be fine. And, as it turned out, she was. But I worried every moment that we were away.

I was stressing hugely about the Bristol thing as it was. My brother had put a lot of time and effort and expense into organising it, and I am very, very fond of my brother, and I was scared to death that something would go wrong. But nothing did. Judy and I had a hassle-free drive down, checked into a Premier Inn that was much nicer than the horrid Premier Inn in horrid Manchester a few months back (except that their rather strange idea of a twin room was a big double bed and what I think was a stripped-down sofa, or daybed, or a truckle bed or something. It was quite cosy, actually), got tarted up, insofar as that is possible, located assorted friends, found our way to Tim's house, and joined the throng. Tim had invited something like forty people - I didn't count them, but there were a lot - to the house, and then hired a bus to take everyone to a restaurant in Chipping Sodbury (there was no reason for that piece of detail, I just wanted to say 'Chipping Sodbury', because I am twelve) for a meal and entertainment by ZHL Strings, who are a collective of musicians that you have probably encountered if you've been to Covent Garden at any time; they usually play in the downstairs bit. Anyway, Michelle likes them, that's the point. So you see why I was stressed about things going wrong. But, as I said, they didn't. Judy and I stuck to the people we know: my sister and brother-in-law, who it was lovely to see, if people must live in Penzance what can you do? - and Sabine and her family (Simon, who is five, was vastly underimpressed by the band), and Gary and Linda, who were kind enough to give us a lift there and back so that I didn't have to wait for the bus to leave. And this is as good a place as any to plug The Poisonous Seed, which Linda wrote, which is a Victorian mystery that actually is Victorian (I have read so many historical novels that feature 20th century people in corsets), and which is excellent. There.

It was a very pleasant evening. I wasn't able to eat much - I didn't dare touch any of the canapes, delightful as they all looked (well, apart from the things that looked like poached eggs in a pastry tart, I didn't fancy those at all), and, once again, was left lamenting over CAKE, but what I did have was v good indeed. A+, would eat again.

All too soon I was flagging like a big wussy wet girl, so back to the hotel we went (thank you again, Gary and Linda), fell into bed, got up early-ish on Sunday and raced back home to find out how our poor JennyCat was doing, to say nothing of how Lynn was coping.

Lynn was coping capably, naturally, but the poor JennyCat was very quiet and sad and sorry for herself, and was mostly huddling in a corner behind the futon. I know just how she felt, I often feel like doing the same myself. The other two cats were none too happy either, being well aware that Something Was Not Right.

And so to Monday, when Jenny got taken into the vets to have her tooth taken out and a general check-up for anything else that might be lurking (nothing was), and I got to have my monthly chat with the consultant.

Who told me that my CA125 levels were up again, and that I might as well not bother with the sixth and final round of chemo (I'm going to have it anyway, though). And that, other than that and a scan at the end of it, they were going to give me a 'treatment break'.

I'd like my second opinion now, please. Otherwise my new coat, when I get it, may last another fifteen years, but I won't be around to see it.

And that would be sad. Would it not?

Like I said, nothing lasts forever. If you want me, I'll be behind the futon.

I can turn you inside out

Last week started out promisingly enough, with a relatively uncomplicated call from the district nurse, a lovely visit to see Caro and her Maine Coons, including teeny-tiny mega-cute kittens, and a (again, relatively) pleasant trip to chemo - many chatty ladies in attendance this week; I don't get the full benefit of the chat, since I lapse into a coma as soon as they show me the Piriton, but I can hear it going on around me, and it's better than sitting in stony silence. And I was awake while nurse Debbie was holding forth on how the Fifty Shades trilogy ("I'd started, so I had to finish," she said) would make one decent, reasonable-length book if they cut out all the sex scenes. Although even so, I think she was being too kind.

Then I was sick on Tuesday evening. Violently sick. How sick? See title. Other stuff too, but I'm not going into that. It was all most unpleasant, to the point that I wondered whether we should contact the triage team at the Churchill - but Judy said they'd probably just tell us to call the out-of-hours doctor, and you know how well that works, so we didn't.

And that was pretty much it for the rest of the week. I did manage to drag myself out of bed on Friday, to keep my counselling appointment at the Maggie's Centre and talk to a very helpful and efficient lady about applying for Disability Living Allowance, but even so they had to do most of the talking.

I really have trouble considering myself disabled, by the way. Okay, I can barely walk as far as the corner shop, and I'm asleep something like 18 hours a day, but nevertheless ... But if that's the label I have to wear to get the benefits I need, then I suppose wear it I must.

I'm never that sick after chemo, either. I'm never sick at all after chemo. The Carboplatin used to upset my stomach occasionally, thereby necessitating emergency stops at Sainsbury's in Kidlington (they have customer toilets, I didn't just poo in the car park), but all the Taxel usually does is make me tired. Tireder. This was more like food poisoning; but, on the other hand, it's the second time it's happened - the first was when Judy was away and I ended up sending out pleas for help to the internet, pleas that went unanswered as the internet, unlike Faron Young, is asleep at four in the morning - so I don't know.

Nothing new there. I don't know anything much. Certainly nothing useful.

This week? Well, so far this morning my sister-in-law's birthday present has failed to arrive, there was a wet patch on the doormat under the front door (the cats? But the cats are usually so good), and I had a letter from the Inland Revenue telling me I owe them £150. Also the car is leaking coolant as though there were no tomorrow, and we have to go down to Bristol at the weekend.

I do not think I like the look of this week.

The last thing on my mind

No, Churchill Hospital, please pay attention. This is your arse. This is your elbow. Do you think you can remember that for five minutes together?

What have they done this time, do I hear you ask? What they did this time was send me a pre-chemo consultant appointment for 2.50 pm next Tuesday (one of those appointment times that may as well be called 'or any time we can manage to fit you in'), when I have chemo booked for midday on the same day. I know that time is meaningless, but the whole going backwards business is terribly complicated and I have never fully mastered it.

I think I have managed to get everything sorted. I phoned Dr Nicum's secretary on the Friday before the Bank Holiday - who knew there was a Bank Holiday last weekend? Took me by surprise, I can tell you - and she finally got back to me on Wednesday with a new appointment at 12.30 pm on Monday. Which rather begs the question: if they had a free appointment for 12.30 on Monday, why didn't they give it to me in the first place, especially after Judy yelled at them last time? Anyway: I also spoke to the Day Treatment Unit, who said they'd see what they could sort out so, what with one thing and another, we should be okay. Oh, and I have also remembered to phone the District Nurse and ask her to try to come before we have to set out for the hospital ...

All well and good, then, except - I am so tired; I really don't need all this running around trying to rearrange things, and all the telephone calls, and all the hassle. Can't they bloody well just get it right first time?

The whole business of chemo might be academic; my finger ends are now hurting really badly, and I do mean really badly, which is almost undoubtedly Taxol-related neuropathy (my feet aren't too good, either, although they do currently have pretty turquoise toenails), and I think it's time for a change of regimen. Regimen, regimen, REGIMEN. I thank you. I just hope the consultant agrees.

Come to think of it, it's about time I saw Shabani again; last time I saw her was July. The rest of the time it's any old random consultant who happens to have picked up my file, and I'm never completely convinced they've actually checked it before they start talking to me. But there's nothing I can do about that.

Oh, I had a random thought the other night, and managed to catch it before it died. When I was ickle, and I do mean very, very ickle, 16 or so, I used to volunteer at my local hospital - taking round cups of tea and then doing the washing up, thrilling stuff like that. In all the times I've been in the Churchill, I've never seen a volunteer. Does that not happen any more? Why? If anyone says 'health and safety', I shall look at them unless they can produce concrete evidence. Poor health and safety. They got blamed for Springsteen's Hyde Park gig getting cut off mid-song, you know, and one person there was so upset that he published an online rebuttal - for which he probably got into terrible trouble. But about 90% of stupid health and safety stories are made up, mostly by the redtops. I uterly diskard them.

What have I done since the last time I posted? I actually did manage a few measurable achievements: I've shelved my 'books read and reviewed' pile, and managed to sort out a dozen or so for Oxfam while I was about it, and I also now have the tidiest chest of drawers, pants drawer included, that you can imagine. This last was mostly courtesy of the most dreadful fit of insomnia that hit on Sunday night and, so far as I can tell, affected everyone in the house. Well, everyone apart from the cats.

'Everyone' included Lynn, who came up to stay for the above-mentioned surprise!Bank Holiday. I believe she's coming to babysit next week, too, as Judy is off to tidy up Penny's house. If anyone would like to come and tidy mine, please don't be shy. The carpets are all filthy, just for a kick-off, and there is enough junk in the garage for a trip to the local tip every day for a month.

I have also LibraryThinged the last few books remaining that needed doing - of mine, that is, there are plenty of Judy's still to do - and made a banananana cake. Not both at once.

Wednesday was a very busy day, with one set of visitors in (my line manager and the HR lady from work bearing a scary Official Form), one visit out (to Caro's, to see her current kittens - Aurora's current kittens, technically, I suppose - who are named after Judy and me, and a trip to the garden centre to buy a housewarming pressie in between the two. I paid for it on Thursday; I was so ill yesterday that I seriously considered phoning the hospital - but I will always try not to do that unless I'm practically dying. Having said which, when I went to bed last night I did wonder rather whether I'd be waking up again. But I suppose I was just over-tired; I've been pretty much okay today. For certain stated values of 'okay' which = 'crappy, but it could be worse'.

Anyway, the kittens were lovely, and I may or may not have made girlie squeeing noises. You be the judge. And also, someone sent me a surprise!Bodhisattva from my wishlist today, which is not the sort of thing that happens every day. Thank you v much, SG!

Somewhere in amongst all that we went out for a drive in the country and accidentally found Claydon Hall. That is, I knew it was there, I just wasn't entirely sure where 'there' was. One day, when I think I can do so without spending the next day wondering if I'm about to breathe my last, we must go and do the tourist thing there.

Which led me to find this: Parthenope's Owl Book, written by Florence Nightingale's sister, Lady Verney. I believe she is the Lady Verney after whom the Lady Verney High School in High Wycombe, popularly known as the Lazy Virgins' Home for Scrubbers, was named. That was the High School I didn't go to. Who knows, maybe I would've been better off if I had done. God knows Wycombe High School did me no favours.

(This has been much on my mind of late because of the A-level results coming out. Apparently Bs and Cs don't count at all any more - and I heard a Paralympic athlete on the radio this morning being quite miserable about his bronze medal - which makes me wonder, why even bother any more? Why not just have pass and fail grades and have done with it, since it seems to be going that way anyway? Mercifully - for all concerned - I have no children, and shall, god willing, never myself have to take another exam, so it's all moot.)

Did you know I have no A-levels and never went to University? Does it show very much? One day I will explain How Things Were in Them Thar Days, but I don't have the strength at the moment.

I've been ill for well over a year now, and it occurred to me to wonder today what things were like this time last year. Thanks to the miracle of the internet, I was able to find out. They were like this: super-tired, unable to eat properly, panicky and prone to insomnia. What a long way we have come. Wait, no - we have made practically no progress at all. Will you get on with it, please, Churchill? Just go ahead and bloody well fix me, already!

I mean, how hard can it be?!

Pants

If I should die unexpectedly - which isn't entirely out of the question, which, I suppose, means it wouldn't really be unexpected, but wotthehell - then please do not judge me too harshly on the evidence of my underwear drawer. I do sometimes fold my pants neatly, but other times I just think "Why?" and "Wherefore?" and "Inasmuch as which?" and then it all goes to hell.

My wardrobe's in a bit of a state, too, I never did sort out winter and summer clothes this year. And then there are all the books I've read that're waiting to be reviewed, and all the books I've reviewed that're waiting - ever so patiently - to be shelved, or Oxfamed, or whatever. All in all it's a bit of a mess, and I really do hope I don't die for a while yet so that I have a chance to sort it out.

From which you will gather that I'm feeling a bit under the weather and sorry for myself. I am indeed, but it's probably nothing more than post-chemo wossname. This was my third week of poxytaxel, so the side-effects have had time to build up. I hope they'll build down again, or whatever the term is, over the course of next week, which is my week off from treatment. At the moment I'm suffering from a triple whammy: the chemo is making my skin smell, I'm extra-sensitive to smells anyway, and a rat appears to have crawled into my mouth and died. My finger ends are very sore - I just bit off all my fingernails this morning, as they seemed to be adding to the sensitivity, and it actually does appear to have helped a bit - and I'm very tired, headachy, and shaky.

It's Not Nice. And I really do hope it's bloody well worth it. I expect a full accounting from the consultant next time I see her - something, btw, for which I don't yet have an appointment - and if the tumours haven't shrunk this time, then I shall want to know the reason why.

I shall want to know, but you can bet your boots I'll be too polite to ask.

It has been a busy, busy time since last I updated, a time of many visitors. You will recall that I whine bitterly when left alone for too long and not entertained 24/7, but, on the other hand, having to stay conscious and interact with humanity is very exhausting. But worth it! Please keep coming! Sunday before last it was Nairne (lemon cupcakes); Monday was the district nurse, who doesn't count, but in the afternoon we went out to see Rebecca and her husband, and their lovely kittens (caramel cupcakes). Tuesday was an uneventful, aside from an unplanned and unexpected fit of weeping, chemo session (no cupcakes at all, but free coffee and biscuits, and a sandwich that appeared to have escaped from the 1960s: two slices of white bread with margarine and one slice of filling. Still: free, so it's all good). On Wednesday Penny came down from Brigg (Hotel Chocolat tasting box!! We have a winner!!!), and on Thursday she and Judy went off to the quilt show at the NEC in Birmingham (no food was involved here, but Judy brought me back a pair of enamel earrings. Not quilted).

What I am very much hoping is my final birthday pressie for this year (because it's getting embarrassing; I'm really not that nice) popped through my letterbox sometime during the course of that week: a tummy chakra Trollbead from LM. Thank you, my dear! It was most timely; I put it on a chain and wore it to hospital on Friday, that being the high point of last week: my ascitic drain!

Ascitic drain #5, was this, or only #4? I have lost count, and it really doesn't matter, however many it is it would be too many. Drains are so nasty. They say they give you lots of local anaesthetic, but you can feel them poking around at your tummy and then, all of a sudden, BARBED WIRE THROUGH YOUR INNARDS, and even a big, grown-up lady such as I has a hard time not to snivel like a great weedy wet. Other than the treatment, the Churchill didn't do too badly; not perfect - lots of hanging around, lots of miscommunication - but everything turned out all right, and I even got to go home the same evening, which is a first. Just as well too, probably, as Judy and I had left poor Penny languishing on her own at home. Fine hosts we are.

On Saturday it was my turn to be left Home Alone, as Penny and Judy drove down to Gloucestershire to see Penny's mum. That's a lie, actually, I wasn't Home Alone at all, Lynn came up especially to babysit. It is a bit embarrassing to need a babysitter at my age, but, it's true, I'm not comfortable being in the house on my own any more. If I were taken ill, I'm sure I could get myself taken care of - but the bad cats are another matter. As I understand it, you actually can't leave them to fend for themselves, it isn't legal - and I wouldn't anyway. Of course. So, Lynn is really mostly there to babysit the cats, who actually quite like her (this, with our cats, is saying something). That makes me feel better ...

Lynn went home early on Sunday afternoon, Judy and Penny came back a few hours later, and there was Indian food. Hurrah! Never mind that I can only manage a starter and a Naan bread, hurrah! notwithstanding.

On Monday it was like a very small-scale version of Piccadilly Circus in our sitting room, as the district nurse came and went, Penny prepared to depart and my brother and his wife and bear arrived. (The bear had come to pay court to my own bear, Theodosia, as it appears they are of a like age, and who is to say that bears do not need love like the rest of us?) Michelle had booked a local hotel so that she and Tim could stay overnight and spend some extra time with us, which was a lovely thought. So, having more time than usual, we set out to see the sights of Bicester. One problem here: there really aren't any. The best we could manage was Bicester Village, and the best thing about that is the gelato stand ...

... food does seem to feature prominently in these blogs, doesn't it? No wonder I have never faded into a wide-eyed cancer waif.

And so to Tuesday, and another uneventful chemo session, only notable for my brother rather than Judy being with me. It was actually his birthday, and I don't know whether taking your sister to chemo is really something most people would aspire to by way of celebration, but hey. He got to witness me flaking out on Piriton, which, I believe, is very amusing. It makes the nurses laugh, anyway. And it was nice to have him around for longer, even if I was only semi-conscious for some of it.

Just about the only one of the usual suspects we haven't seen around here of late is the Gentleman Caller, and there is a very good - or maybe a very bad - reason for that: the poor old GC has been in hospital himself, in Cheltenham General, suffering from pneumonia. Judy and I drove down there to visit him yesterday. I am pretty sure that the universe occasionally sends me to other hospitals to remind me not to bitch about the Churchill so much. Cheltenham General is built on a Victorian core, and is an absolute maze inside - we walked miles to find the GC's ward, and then again on the way back, and I am pretty sure all we really had to do was abseil out his window - and ... well: a bit depressing, to be quite honest. And it has no facilities. The Churchill has a posh coffee shop - okay, it's a Costa; it has a coffee shop - and a rather nice boutique, and a wig shop, and a decentish W H Smiths in the lobby, plus a Friends' Cafe upstairs, and a restaurant somewhere so far away I have never bothered to go looking for it. CG didn't have anything like that. There was a WRVS shop, but even that was closed. I had originally had the tactful intention of just saying hello to the GC and then leaving him and Judy to talk, but I ended up staying. It is a little bit odd having a conversation with someone else's Gentleman Caller in their pyjamas. (He was wearing the pyjamas, I mean. Obviously.) I am glad to report that he seemed very much better than he'd sounded when Judy last spoke to him and, in fact, we heard today that he's being sent home tomorrow. Which is excellent, and I hope he takes better care of himself in future. He is a very nice Gentleman Caller, as Gentlemen Callers go.

It's possible that a long drive the day after chemo might account for how rotten I feel today. Never mind. We didn't do much today except go and do a Tesco shop in Brackley. And tomorrow we are expecting Lynn again, to come and stay for the weekend. There is never a dull moment.

Actually, there are plenty of dull moments. And plenty of scary, or at least worrisome moments. But why focus on those? Life is poo enough without fussing about the bad bits.

Pants, in fact. Hurrah for visitors and friends and cupcakes and anything else that will take my mind off it all even for a little while. Hurrah, and thank you! I may be a snarky old bat, but I really do appreciate it.

Today was gonna be the day

It's Monday, it's the 13th, the Olympics are over, and it's raining. Today never stood a chance, really.

Still, it might have been improved if the district nurse had managed to come and do my bloods and dressing change ("Which part of 'weekly' do you not understand?"). We managed to persuade them to come out just in time to get the blood samples up to the Churchill in time for chemo tomorrow, but it was all rather stressful, and it took hours afterward for my jaw to become unclamped. What with this, and with all the arguments between them and the chemo nurses as to what equipment who should supply, it would really be simpler just to keep going up to the Churchill to get it done. Simpler, but time- and petrol-consuming, so the district nurse it is. For our sins.

I have also still heard nothing about my ascitic drain. I was going to phone the Macmillan nurses today, but their number's on my mobile, and my mobile was out of charge, and the charger was in my go bag, and the go bag was in the boot of Judy's car ...

The blood transfusion went off without a hitch, though. It was quite pleasant, actually, getting to lie down on a nice, cosy bed and doze without guilt with the Olympic show jumping talking away to itself in the background (I was much taken with the jumps, especially Stonehenge and the Uffington White Horse - although, as I said at the time, the Cerne Abbas Giant would have been more of a challenge. And funnier). Whether it's had any effect at all, I'm sure I couldn't tell you. We went out this afternoon to see Rebecca and her kittens, stayed about an hour, and, when I got home, I went to bed and crashed out for almost four hours, so draw your own conclusions.

We put the blood transfusion to the test last Thursday and made a small Expotition to the Uffington White Horse - the real one, I mean - which is about an hour's drive away. I wasn't able to manage the hill that leads up to it, walking across the field before the hill wore me out, but we were close enough to see it, and that's the main thing. And it's so high up that you get lovely views all around. Well, almost all around. If you look out over Dragon Hill, you can see Didcot Power Station in the distance, which rather takes the magic out of it all.

We stopped in Wantage on the way back, mostly for a wee. I have never been to Wantage before, let alone weed in it, and I do say you should try to do something new every year. (Last year I got cancer. That doesn't count.) On my 30th birthday I flew to America for the first time, but these days I have to be less ambitious. There is very little to say about Wantage, which looks as if it used to be pretty but is now the poster child for zero economic growth. It always makes me think of Georgette Heyer (because of Hero Wantage in Friday's Child), and is, apparently, the birthplace of Alfred the Great. He has a statue in the High Street, with a plaque on it that says Alfred found learning dead and he restored it/education neglected and he revived it/the laws powerless and he gave them force. He sounds like a useful type, and would get my vote. I bet he could beat the crap out of any shiny-faced Tory you may care to name.

That was quite enough in the way of Expotitions for the time being, after that I mostly stayed home and flumped. Nairne came and visited on Sunday afternoon, so it has been quite a social sort of week.

It has also been an excellent week for pressies, as no fewer than three people separately decided that I needed a book off my wishlist, and Prince Charles sent me choklit. Okay, it wasn't really Prince Charles, it was my sister, but Prince Charles made it. With his own hands. He may or may not have been wearing one of those little white hats while he did it ... I don't know why this all happened, but I am very grateful. I have recently been determinedly dragging out the started-and-never-finished books from my bedside table and finishing them, no matter what, and now I am down to only five. That's not only five unread books, obviously, there's a whole bunch all out of place on one of the children's bookcases, and three stacks in my study, and also, I suspect, an awful lot that got sorted into the shelves and forgotten about ... but still, I might run out of books one day. It shall not be this day. Thank you, everyone!

More good news: our friend Caro's Maine Coon Aurora went missing, whilst heavily pregnant, last week, and was gone for at least two days. But she came home again, hurrah! and last night she had her babies - two of them - which Caro has named after us. I am most flattered and honoured. The kitten is undoubtedly prettier and quite certainly cuter than I shall ever be, and probably has better hair, too (post-chemo frizz: grey post-chemo frizz; it's not a good look), but hey.

More chemo tomorrow, quite earlyish this week. That's #2 out of the current three sessions. After #3 I expect to find out what the consultants have planned in the way of further treatment. Or, knowing the Churchill as I do: possibly not.

Bite me

The past week has somehow managed to be tedious beyond belief and also more-than-verging-on-the-shambolic, in more or less equal measures. I'm sure it ought not to be this difficult to arrange basic, routine medical maintenance; and I'm also certain it shouldn't be up to the patient to do so. However ...

Monday morning we were up bright and early, or at least early, in order to get to the Churchill for a CT scan by 8.30. Erring on the side of caution, as we do tend to do - for we are very old ladies, and old ladies do tend to be cautious - we actually got there closer to 7.30. Which made no difference, I hardly need say, we still had to wait for our appointment. It was a different scanner, this time; the nurse said it was a little bigger than the other one. Fine by me, so long as it's not smaller. I have to close my eyes when I go through the Stargate as it is. I got cannulated, and I got scanned, and then I had the contrast dye inserted and got scanned again, and then we went home. With the rest of the day ahead of us, wide-open and full of promise, we ... well, I went to back to bed, and then faffed about on the computer a bit. I don't know what Judy did. That's pretty much all I ever do, and I'm heartily sick of it, I can tell you.

Incidentally, and apropos of nothing at all, there is a house en route to the hospital that has a chicken on the wall. It always has a chicken on the wall, and we have come to the conclusion that it must be a fake chicken. Why would anyone have a fake chicken on their wall? Beats the hell out of me, but live and let live, I say. They're not the only people to have odd ornaments; in Woodstock Road, just before you get into Oxford, there are three, count 'em, three houses with gargoyles (Stephen Fry would tell you they are 'grotesques', not gargoyles, since they don't drain away water, but, really, who cares?) on their roofs, and another with a pollarded tree that has a pottery chicken perched on top of it. Last year they must have decided that the old pottery chicken was getting a bit scruffy, so they replaced it with a new one - or maybe repainted the old one, I didn't ask. It's things like this that have gradually reconciled me to Oxford, although it's still not a patch on London. The Botanical Gardens, just for a kick-off, cannot hold a candle to Kew, even with their Will/Lyra associations. I really miss Kew. I once almost wrote a children's book set in Kew, but abandoned it after a few chapters - which, people who keep telling me I ought to write a book, is why I don't write a book. I don't because I can't, and I can't because I don't. Impasse.

Back to life: back to reality. Back to the here and now ...

Tuesday I was up early, although not quite so early as Monday, to be ready for the district nurse, who was due to come and change my PICC dressing. Up she turned, as promised, flushed the line, cleaned the area - I'm afraid that patch of my arm is likely to turn albino and grow mushrooms from never seeing the light of day - and re-dressed it in a rather unconventional manner, putting the clear dressing on over the whole bloody lot. This suits me fine, it makes it much more discreet and keeps it from getting caught on things, but how in the world are you supposed to use it if it's dressed like that? Not that it was due to be used, but nevertheless. So that happened. And, once again, with the whole day ahead of us (see above).

Wednesday! Up early! Off to the GP this time, to get pre-clinic bloods taken. "Why didn't the district nurse do that while she was there?" you ask, and the answer is, because the chemo clinic didn't give us a blood pack. They also didn't give us a dressings pack for next week, but more on that later. So my poor little elbow, which hadn't had a chance to recover from Monday's cannula, got punctured once again. Not unnaturally, it tried to show its displeasure by refusing to stop bleeding, but we came to a civil agreement in the end. And home. And ... nada. That was the excitement for the day.

My poor arm is a total mess, btw. Some nasty something in my bedroom keeps biting me, so as well as bruises and lumps from having needles stuck into it twice in one week, it's also covered in bug bites and, because my first instinct was to blame the cats, claw marks from Frontlining Molly. (Jenny is more amenable, and I sneaked up on Shadow when he wasn't paying attention.) The whole thing is a disaster area. And I'm still getting bitten. I think it's a flying thing rather than a hoppy thing, and I wish it would just sod off and die. I can't be that tasty, surely?

On Thursday nothing happened at all. I was so bored and miserable I almost started screaming. One of these days I probably shall do,and then the problem will be stopping me again.

Friday was better. We went into Bicester to do some basic wandering-round-the-shops - not that the shops in Bicester are especially thrilling, and not that I can afford to buy anything - and in the evening we went out for a meal with a bunch of people I used to work with. Which was lovely on every possible level, except that afterwards Mr Crab tried to kill me in the night (in the course of which the loo seat in the Comedy Bathroom - don't ask - broke - don't ask about that, either - and now the lid smacks me on the back every time I sit down). That made for a very subdued sort of Saturday, although I did find myself getting quite excited about the Olympics, such is the insidious power of the zeitgeist, what with all the medals and things. And people on Twitter taking the piss out of the Daily Mail (what else is one to do with the Daily Mail? It would be nice, but probably dangerous, to ignore it. It was quite depressing, sitting in the waiting room on Monday, to see not just one but two people reading the thing and, apparently, soaking up every racist, reactionary word).

I do hope that people who are politically opposed to the Olympics are at least letting their kids enjoy it. My mother hated sports, and wouldn't have them in the house. If not for her, who knows, maybe I would have run faster, jumped higher, not flung myself to the ground, arms over my head, and yelled "Incoming!" any time someone lobbed a ball in my direction - and, who knows, I might have been happier, healthier, saner; I might even not have got cancer. We shall never know. Mens sana in corpore sano, that's all I can say. Of course, it also didn't help that the generation of teachers I was lumbered with were not yet the tweedy, be-sandalled "Let me be your friend!" type, but a bunch of old harridans who had 'domina' mixed up with 'dominatrix', and our PE teacher was an absolute horror. Even the sporty girls thought so, and were the first to raise a cheer on the wonderful occasion when she got hit on the head by a hockey ball, poetic justice if ever there was. (She wasn't killed, it's okay, we weren't entirely heartless - although I don't say we would have cared if she had been. Nor, sadly, did she go through a personality change as a result.)

I managed to do a little bit of housework yesterday, in the form of taking down the curtains in my bedroom and study and washing them. And dusting the rings and poles and things, and then hanging the curtains back up again. They're a little bit wrinkly, and would probably have benefited from being ironed, but I think we all know that's never gonna happen. All of this usually gets done in March, but I figure I have a pretty good excuse for being a little late this year. The net - and I love net curtains as much as any sane person, but it's a necessity, otherwise half the street could see straight into my bedroom (possibly not, given lines of vision and light diffraction, or do I mean refraction, and other science-y sorts of things, but I'm not taking the chance) - didn't get done, but (don't I say 'but' a lot?) I think I'm going to get a new one, this one's eight years old, because that's how long we've been here now, and getting pretty grunky. So: housework. Go,me! And also, someone sent me a book - a P G Wodehouse 'Psmith' collection - from my Amazon wishlist, which cheered me up. I don't know who it was, there wasn't anything to say, but thank you, whoever you may be!

Sunday now, and Mr Crab is still a bit bitey. That's nothing to the bitey thing in my room, which, I discovered yesterday morning, had got me twice on my face. It didn't bite last night - I washed such of my pillows that can be washed, and maybe I've drownded it, I do hope so - but I don't want to speak too soon. I really ought to vacuum, but, again, I think that's not going to happen, not today, anyway. Possibly tomorrow. Possibly not.

Tomorrow, by all rights, I should have been going to see the consultant, but I had a letter midweek to tell me they were changing it to Tuesday. It's at 2.30 or, to put it another way, 'whenever we can get to you', and I'm supposed to be having chemo at 3.30, so that should be entertaining. It has also screwed up my nice, tidy plans to get bloods and dressing change done by the chemo nurses while I was there. Instead, I'm going to have to go back to the GP's for bloods tomorrow morning - and another needle jabbed into the same old poor, abused vein - and get the dressing changed on Tuesday. Yes, it would have been easier if I could have got the district nurse in to do both, but, as previously noted, the clinic didn't give us a second dressings pack, and no blood pack at all. Hence frantic running around and rearranging on my part. Which is where I came in.

And that was the week. That was.

Being boring

Here's a mystery. I'm never hungry when I wake up in the morning - that whole "breakfast is the most important meal of the day" thing is quite wasted on me. So why am I always starving when I wake up in the middle of the night?

Luckily it turns out that night starvation can be cured by eating a dream burrito. Don't ask. (I suppose it was a burrito. I've never actually eaten a real one. I believe they include ground beef, and even Mr Crab doesn't fancy that.)

So. Last week. The weather, just for one thing. Weeks and weeks and weeks of nothing but torrential rain until I wanted to scream, then, from nowhere, sun. Hurrah! And more sun. Not so hurrah. Even more and hotter sun. *woe* and scuttle indoors to hide in the shade. Some form of moderation. Is that so much to ask?

Monday morning heralded the first visit of the district nurse, who arrived at 10.00 and caught me in my nightie. Still, I daresay she's seen people in their nighties before, and mine is fairly respectable, as nighties go. She changed my PICC dressing and took bloods for chemo, and all went swimmingly. Of course, it then all promptly fell apart, because we had to be at the Churchill on the following two Mondays, and, no matter how I explained what needed to be done, nobody was able to grasp it, or to give us the equipment we'd need. So now, in theory, district nurse is coming tomorrow for the next dressing change, and I'm getting pre-consultant bloods taken at my GP's on Wednesday; and next week, when we'll be at the hospital anyway, I'll ask the DTU to do the dressing change and pre-chemo bloods. And we shall see if all goes according to plan. But, really: it wasn't that complicated!

My brother came to visit later on Monday morning. Judy had gone to have lunch with a friend, so he and I sat out in the garden to talk, and admire the gliders (of which there were about six zooming around). Tuesday was chemo, the third cycle of the third round, and that went unusually smoothly - I actually got seen almost at once, and we were only there for three hours or so. As usual, I was asleep for most of it - I got a bed this week, which is always nice - so I don't know if anything exciting happened. Probably not. If it did, I've forgotten it.

Judy was away again on Wednesday, on an overnight trip to Leicester this time. A thrill a minute, it is. I managed not to get sick this time, so hurrah for me! Macmillan was doing a web chat on benefits, so I joined in that. It wasn't much use (no use at all, to be brutally truthful), but it gave me something to do, and gave me the illusion of company. And the rest of last week ...? Um ... I dunno. I don't think we did anything. And it is entirely possible that that is quite literally true.

Oh, what a world, what a world.

No, I lie. Tsk, I'll be going to hell, then. I suppose that's news to exactly nobody. We both went out Friday lunchtime, to have lunch with our friends Sabine and Nigel and their daughter Karen, and say 'happy birthday' to Sabine. It was still too bloody hot, but otherwise generally pleasant, and almost like having a real social life. I felt awful afterwards, though, probably due to unwisely having a (one; 1) cider. I never do know what to drink in a pub if you can't drink. Fizzy water is the sensible option, I suppose, but I do rather resent paying over the odds for water just because it's in a bottle.

Did I mention that Sabine ran the Race for Life the other week, with my name on her card? I thought perhaps I hadn't. Well, she did. ♥ is all I can say.

Speaking of all things sporty, we sat down and watched the Olympics opening ceremony on Friday night, all prepared to be jaded and cynical. It took about five seconds to win us over, and would have been even faster than that if we'd tuned in in time to see Mr Cumberbunny's intro (it's okay, I found it on YouTube later). Bless Danny Boyle: anyone who wants to celebrate children's literature, and the NHS, and Britrock, and - what was it that mad Tory Tweeted? "Leftie multiculturism"? - is all right by me.

Yes, I expect the money could have been better spent elsewhere. But it wouldn't have been, you know. It never is.

Weekend? I don't believe anything happened then, either, except that when we went shopping in Brackley we drove out of the sun into the rain both ways, which seems a trifle unfair.

This morning we had what I think of as a hideously early start, although actually it's no earlier than most people - including me, when I'm working - start for work, so as to get to the Churchill for 8.30 for a CT scan. We actually got there just after 7.30, because there wasn't any traffic, but such is the way of the world. It didn't mean I got seen any earlier, that would be too much to hope for. There were no problems with the scan, but it's a long way back to Bicester after you've had to drink five cups of water ... And I feel a bit crummy now, either from a bad night last night and a six o'clock wake-up call, or from the resolution dye, or from both. Who knows? I expect it will pass. The water already did ... oh, sorry. Too much information?

Two more earlyish starts tomorrow and Wednesday, for the district nurse and the GP respectively; then nothing until next Monday, when I see the consultant and find out how Mr Crab is coming along. I would like to think he's shrinking and fading away, but he has been a bit bitey of late. Which is always something of a worry.

Also bitey: something in my bedroom. The cats have been Frontlined - not without incident and injury - but I suspect a flying thing rather than a hoppy thing. Maybe the Frontline will work on everything, regardless. I hope so. Life's tough enough without having to go through it itchy.

I am so bored. Does it show? My mother always told me that only boring people were bored. I fear the old bat was perfectly correct. Luckily she's dead, so I don't have to tell her so.

Okay, now I'm going to hell.

People who need people

It's two thirty in the afternoon, and I am typing this in my nightie. "Are you extra-tired today?" Judy asked, when I came downstairs just after midday (it might have been a little sooner, but the ShadowCat had come in out of the rain and wanted me to know about it). No, I'm not, or not especially. Just meh. The week before last was the week of Bruce (and getting PICC lines put in, and other general excitement); last week was the Week of Many Visitors. This week is shaping up to be the Week of Nothing Much in Particular. I don't even have chemo to liven things up - or whatever it does.


So, meh.


The Week of Many Visitors was good, anyway, and not just because people kept bringing me things - late birthday pressies, I've-been-abroad souvenirs, just-because bits and pieces. Of course I appreciate pressies, but it's not a requirement, you are quite welcome round my house without so much as a bunch of petrol station flowers. It's the guest that counts.


Lynn was here when we came back from Manchester, of course, because she was minding the house - and the cats, who, apparently, had behaved immaculately. As soon as we got back, first Shadow and then Jenny decided to stay out all night. Anyway: the weather was still pretty good back then, so she was able first to strim the lawn and then to mow it, which made the garden look altogether more respectable, although I think the cats are a bit miffed at losing their hiding places. I'm not sure, but I think Lynn actually quite enjoys mowing the lawn; I'm pretty sure she likes spending time in the garden, anyway, as her flat in London doesn't have so much as a window box. We have a nice garden, and we're happy to share, so everyone wins. I think ...


Lynn stayed till Tuesday morning. My brother came up from Bristol on Monday, bringing some charm bracelet beads as an extra birthday pressie, and home-made flapjack (yum) - and, more importantly, his lovely self. Tuesday afternoon was another wholly unremarkable chemo session, made easier both by the PICC line and by my passing out for the duration. This week my ankles did not swell up on Thursday (or at all), but I don't know whether that's because I slept with a big pile of towels under my feet or because they weren't going to. Then we barely had time to get the spare bedding washed and dried before Penny turned up, bearing yet more birthday pressies (surely, by now, the last?), plus souvenirs from Rome and Amsterdam (she brought Judy tulips which, she said, it was quite difficult to find actual Dutch tulips in Amsterdam) to stay for a couple of nights around a conference in Birmingham. It may not have been the best time for a conference, or anything else, in Birmingham; that was the day the Midlands flooded. Nowhere near Penny's meeting, fortunately, but it's all very worrying. I'm tired of the rain. It'd just better be falling on the damned reservoirs, that's all I say, else I shall be cross. With whom, I don't know. The rain gods, I suppose. Or the government, but no change there.


Penny wins a special prize, one I haven't managed to think up a nifty name for, for prompt and rapid PICC line cover production (you can't call it that, for a start): I'd put out a plea on Facebook on Tuesday, and by Wednesday night I was wearing one. By Friday, when Penny went home again, I had three. Yay! and also thank you, Penny! I wish I were creative. I might as well save time and energy, I'm not, and that's never going to change, but still. It would be nice to be able to do something useful.


Friday: Rebecca dropped in for an hour - and no, that wasn't the last of the birthday pressies, she brought choklit and biccies and, indeed, choklit bikkies - and so did one of the Mels from ex-YBP (there are two of them, and they're both Mel B, so it's hard to differentiate), bringing flowers. By this time I was getting a bit tired and overwhelmed, but I hope I managed to be interesting enough (fat chance, I cannot help but feel) that people will want to come again. Because that was the last of it, and by the next day I was At A Loss.


I like to have people around me. Maybe I think that if I hide in a crowd, Mr Crab won't be able to find me, though I guess it doesn't really work like that. If I miss work at all - well, I miss the pay cheque, I'll tell you that - then what I miss is the people, and having noise and bustle around me. I'm not complaining about being at home, this is a very, very, very fine house, but it does get quiet sometimes. I suppose I miss having something to occupy my mind, too; I rather fear that my brain is slowly putrefying, with nothing but WWF to stimulate it. (On the other hand, I do not miss the commute. Not at all. When I worry, which I often do, dealing with that commute is high on the list of Things What I Worry About. Not as high as "Is Crabby going to kill me, and, if so, when?", but pretty high.)


So: I'm feeling a bit blah now. In fact, after everyone had gone home, I started to get anxious; not panicky, not like I was before, but nervy and restless. Luckily I am now filled with Lofepramine and have the-thing-that-isn't-Diazepam for back-up, so I hope I can keep the panic at bay.
We do have a few things on the schedule: we still have to go up to the Churchill tomorrow, to get my dressing changed. We'd thought I could get that done at the GP's, or by the district nurse, but, apparently, no; they don't have the right equipment, we have to have the dressings. This seems very strange to me, but if that's the way it is ... well, then, that's the way it is. Judy's going up to London on Tuesday evening - I do hope London doesn't flood, it seems that every time anyone goes anywhere it floods - and my brother has promised to visit on Friday, so I have that to look forward to. It still leaves time for an awful lot of WWF, though.


And, indeed, time for baths. I should go and do something about that, and hope that I can stave off the anxiety until next week, when everything starts over again: consultant on Monday, chemo on Tuesday ...


Oh, the sheer and utter joy of it all.

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.]

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!

Or emptied some dull opiate to the drains

I've been hearing how NHS cancer patients can't get the opiates they need, which is all very Bad and Wrong indeed. But I have to admit to having apparently won the postcode lottery here; my doctorslove giving me drugs. I have Zoomorph, which sounds to me like a collection of animals all changing shape, and then I had something they thought was better than that - only I didn't have it on scrip, and the hospital stole it (apparently; I'm not entirely sure what happened there), so now I'm back on Zoomorph again, and I have Oramorph too. And left-over codeine. It's all good. Well, all but the necessity for all of this.

Also not good is the fact that all these drugs leave me inhabiting a twilight world all of my own most of the time. I've been in hospital for the best part of three days and had two lots of chemo since I last updated, but damned if I can remember a thing about any of it.

Judy - who was there - tells me that the Churchill was as slow, disorganised and generally hopeless as ever, and that even taking my brother along for moral support (he being a Tall Man) didn't help. But I did have a stomach drain - eventually; it didn't go according to schedule because they sent us to the wrong place. And I did have my first chemo on the ward - again, eventually, this time because I was too ill to be given it when I went down in the morning and had to have a couple of bags of fluids, an antibiotic, and the BIGGEST VOMIT IN THE WORLD, EVER before I was well enough.

Side note: I owe not only Judy and Tim an apology for making them spend all that long, boring time by my bedside, I also have to apologise to the poor Gentleman Caller, who was expecting a nice evening with Judy but only saw her for about five minutes when she drove home to let him in, and, further, got stuck in a freezing cold house because we'd turned the heating off the night before.

God knows what happened between Chemo #1 and Chemo #2. That's pretty much a blur. Chemo #2 was another masterclass in hospital efficiency - we were there for something like six hours just to get one dose of poxytaxel - but there is always someone worse off than oneself, and in this case it was the woman next to us, who was hearing-impaired - and every one of the nurses talked to her father in a "does she take sugar?" sort of way - had so many physical problems that I lost count, and I don't think ever did get her treatment.

My next chemo is this coming Tuesday, and that ought to be interesting. The appointment isn't until mid-afternoon. Given present form, I'm expecting that we'll get home sometime in the early hours of Wednesday morning.

I'm suffering from the heat at present, like everyone, but am lucky enough to have a beautiful garden where I can sit - with a garden bench (in the shade, it's okay) to languish on. Getting any sleep at night is more of a problem; I've had to sleep in the sitting room once this week already, which is all well and good but very disorienting when you wake up.

As for that bad BoyCat - remember I told you how, with immaculate timing, he'd come home with a big bite on his bum? Well, Judy managed to get him to the vet to have it looked at, but there was no way we could get near him for his follow-up appointment. He does seem okay, but I'm afraid he may end up with a permanent bald spot to mar his beauty.

All the cats have gone semi-feral in the heat, and are treating the house merely as a convenient snack bar. I suppose I don't blame them. If I thought that sleeping under the rhubarb would cool me off, I'd do it.

How do I feel? It's hard to say. Not as bad as I did before the drain; not as good as I would like to feel. Somewhere in that hinterland you will find me. Mostly what I am doing is trying very hard to eat properly. Or, you know. At all.

But I am still one of the luckiest cancer patients you will find - for values of 'lucky' and 'cancer'. See what my former colleagues/customers in the USA did for me:

Many spoons! I had to break off several times when I was reading the messages, I kept getting something in my eye.

At the moment, the only blot on the horizon is that it doesn't look as if we'll be able to change my Bruce ticket for a disabled one. I'm going to write a pleading and heartfelt email to the stadium, but I don't hold out much hope. I'll just have to hope that I feel well enough to go. It would be ironic if I couldn't, Bruce being one of the things I've been determinedly staying alive for, but we shall just have to see.

Things can only get better, and if that's not true I don't want to hear about it

Lord, I thought having a panic attack in a Portakabin was bad enough. Things have been even more exciting since then, with another panic attack taking me to the out-of-hours clinic in Cowley Road; the next day, Bank Holiday Sunday, we went to five chemists and took four hours to get the drugs the doctor there prescribed. Actually, all we could get was a reasonable facsimile thereof, but the pharmacist at Woodstock Road chemist should get a medal for services above and beyond; he went to unheard-of efforts. On Tuesday evening I had massive stomach pains and Judy took me to A&E. I can't tell you much about that, as they gave me morphine, but I have a distant impression of many people running around and being terribly helpful and efficient. So far, so good, but it all went wobbly when I got transferred to the Churchill; the only bed they could find me was on the colorectal ward, and the nurses didn't know what to do with me. They put me on nil by mouth and didn't let me have my drugs. Unsurprisingly, I had another major panic attack the next morning and had to sign myself out without having a drain. In retrospect, a very stupid thing to have done, but, at the time, the only option I could tolerate.

I have a lot of people pulling for me - the gynae-obs Macmillan nurses, the people at the Sobell House Hospice, my own doctor - but sometimes I think that just one person doing the right thing would be preferable. Especially as they will keep changing my medication. "What're you on? Yeah, that's good, but THIS might be better, try that instead!" We're thinking of asking the pharmacy for a frequent flyer discount (yes, I get my drugs free anyway, but it's the principle of the thing). And on Friday we got a phone call to tell me I was in hospital having a drain. I wasn't. I might have been if anyone had told me I should be ...

Good news: current batch of painkillers and tranks are working quite well, which is good, as I'm in bloody agony. I think that the ascites has pushed up into my chest cavity again: my breathing's not too bad, but the pain, front and back, means I can't ever get comfortable, I'm constantly being sick, and I can't eat. Which may be as well, given the circumstances.

I have an appointment with the oncologist on Monday morning, and, I believe, a bed booked for a drain (I'll believe it when I see it) directly after. I expect to be on the ward overnight, which will, again, be entertaining, as I'm supposed to start chemo on Tuesday. Anyway: my brother is coming with us for extra reinforcement - I am a liberated, capable, intelligent women, or I am when I am not stoned out of my mind and in pain all the time, and Judy is a liberated, intelligent woman WITH A FREAKING DOCTORATE,  but even so, when we talk we find people looking behind us for the grown-up (gggggrrrrrr, incidentally) - so I hope things will get more bearable soon.

In amongst all this, the ShadowCat was, on Friday evening, seen to have a huge wound on his bum, and had to be snagged when he came in on Saturday morning (no, he is not allowed to be outdoors overnight) and swept off to the vet to be treated.

Did I mention that yesterday was Judy's birthday? Quite possibly the worst birthday ever no?

The envy of Sisyphus

I'm sure things aren't meant to be quite this hard. I had to call the out of hours doctor again last night - I was sick and fever-y, and had very bad tummy pains. This time, by way of variety, they sent us along to an out of hours clinic in Oxford, which was, I suppose, preferable to waiting in the house for someone to (possibly) turn up. Preferable for me, anyway; maybe less so for Judy, who doesn't like driving in Oxford, especially at 1.00 in the morning. Anyway, the doctor there wrote me out a prescription for some new stuff. Hurrah!

Today we went out to get it filled. It took nearly four hours, five different chemists, a call to the Sobell House Hospice helpline on a mobile fast running out of charge, and a consultation between pharmacist #5 and the out of hours clinic - which, of course, had a different doctor on duty by then - to get it done. Actually, it still isn't the exact prescription, the pharmacist got the doctors to agree to let him dispense something similar. God bless Woodstock Road chemists for services above and beyond, but is it any wonder I get stressed?

On Tuesday, when everyone gets back to work, I'm going to phone the Macmillan nurses and see whether we can get a check done to see if I need ascites drained again. I hope not, because it really hurts, but then again, so does pretty much everything. I also want to see if they'll consider giving me my first dose of chemo on the ward in case of side-effects. I was fine last time, but I was also a lot healthier last time. Well, no, that's not true, I had the chest problems then, but my stomach wasn't so bad. Anyway: chances are they'll say no, but it's worth a shot.

I wonder how many people just give up and die of cancer because they're tired of having to bloody well fight all the time?

Little things

I really wanted my lunch today. You can't imagine what a relief that was, after several days where the most I could do was choke down a piece of toast. And (whisper it) my innards are behaving a little better, though that's usually subject to change without notice.

We've found a thing for recharging my MP3 player in hospital - basically a plug with a USB port, which is only logical - so that's going straight into the go bag. Of course, all this is for a hospital stay that is now not going to happen, but it's almost bound to be useful in the future.

I had to ring JobCentre Plus this morning. I'd had a letter from them to say my medical certificate had expired. Well, no, it hadn't, my doctor signed it on 12 January for 6 months. So I sent their form back, along with a copy of the certificate. Then, on Saturday, I got the identical letter again. I decided I'd better ring them this time. After about 20 minutes of holding music hell (I am going to find a way to travel back in time and kill Vivaldi), I got through to someone. Apparently they can't accept certificates for that length of time. So I'll have to get my doctor to write me a new certificate, and then send that on. *sigh*

I'm seeing my GP tomorrow, to discuss the panic attacks and the new medication I had from the emergency doctor, so we can do the certificate then.

No other major crises. I've spoken to the doctor in charge of the clinical trial and explained to her why I felt I couldn't do it, and she seemed okay. So then all I had to do was wait for confirmation of the regular chemo - and, hey presto, I got a phone call from the chemo clinic this evening, to give me a date.  It'll start on 15 May: three weeks on paxitaxol, one week off, another three weeks, and that's it. Inconveniently, that period covers both my birthday (a low-key one this year, I think) and Bruce. I may have to see if we can get our tickets altered to disabled ones; I remember how lousy I felt on chemo last time, and that was with two weeks off between treatments.

Still, I'm not complaining. You never heard a woman so happy to be starting chemo. For one thing, the sooner we start, the sooner it'll be over - and this time, we'll keep on top of them to make sure I get the aftercare I need - and, for another thing, just having a date and knowing that things are moving, might help with the panic.

Day trip to Yarnton Garden Centre today. Do we know how to live, or what?