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?

The kindness of strangers

People send me cards from time to time. Sometimes they're people I don't even know, other than from the internet.


I got one of these today, and the timing couldn't have been better; I had another panic attack last night, and was in a bad state. Luckily I was able to see an emergency doctor this morning, and now have diazepam. I feel much better, and a bit stupid and embarrassed. There is absolutely no logic to these episodes, but no matter how much I tell myself that, I can't convince my own mind.


The panic attacks are not really surprising, I suppose - when I told the doctor I had increased cancer levels, had had my surgery cancelled, and was now waiting for more chemo, she said "you must have been devastated". Yeah, I guess that's pretty much the word. But there's nothing to be done about it; and when I do go on chemo, I know I'll get the best treatment the hospital has available. Still, I woke up at 4 this morning with my little heart pounding away, just like exam jitters, or driving lesson phobia, or vertigo, and it would not stop.


It didn't altogether help that the emergency surgery is in a tiny Portakabin. The waiting room was so tiny, I had to open the door and stick my head outside, and the examination room was not much bigger, and I had to ask to have the door left open.


It's not fun. Sorry to bang on about it. I was all heroic-like for the first few months, I think I'm in the 'something's gotta give' phase now.


And spare a thought for poor Judy, who has to deal with all this at first hand. I honestly don't know what I would do without her.


Now: onward! Excelsior, and that sort of thing.

(As if.)


We visited Sobell House, the hospice and day care centre affiliated with the Churchill, yesterday, btw - to talk to a doctor there, and to take a look around. I wasn't hugely overwhelmed, but I suppose it's one more group of people to turn to. Only not at night or at weekends, when you really need someone to turn to ... As far as the activities go, the only therapy I would really like is hypnotherapy, which they don't offer. They do do massages and yoga, but those are pretty fully booked. There's also 'music therapy' and 'art therapy', which don't inspire me. I once worked for a company that published a Musical Bingo game for the old and feeble; I wasn't expecting actually to be playing it just yet ...

Better days (I would like some)

- Major panic attack Sunday night
- Three-hour wait for out-of-hours doctor
- Discovery that there is only one out-of-hours doctor for North Oxfordshire almost triggers another panic attack
- Routine appointment with oncologist on Monday morning
- Nausea, headache, hurty tummy
- Asked if I could lie down
- Got to lie down for the next two days in bed on hospital ward
- Totally unprepared, had to send Judy home then back again to pick up clothes and wash stuff
- EKG, X-rays, CT scan, ultrasound, stomach drain
- No sleep. Bajillions of sympathy to the poor lady with pneumonia, but ...
- Not much fun, but, as the tummy draining doctor said,
- "If anything goes wrong, you're in the right place"

None of this was much fun, actually. However, the good news is that my oncologist came to see me, put her hand on my arm and looked intently into my eyes and assured me they "hadn't given up yet".

So I should bloody well hope.

Although ... although you're not supposed to say so, sometimes the thought of just dying quietly in my sleep is quite attractive. But shhhhh! Don't quote me. Everyone thinks I'm being Terribly Brave. Poor fools, little do they know. Inside, I'm screaming.

What a difference a day makes

Seriously. Yesterday I couldn't get arrested - not that I was trying to get arrested, but the Churchill had gone all sullen and uncommunicative, painted its bedroom ceiling black, and was playing My Chemical Romance on an infinite repeating loop; today I've been beating them off with a stick.

It probably goes without saying that nobody got back to me on the chemo/surgery question on Monday; I wasn't really expecting them to, so I didn't worry too much. Besides, I was asleep all day, and I do mean all day, for some reason, so I wasn't worrying too much about anything. But when I hadn't heard from them by mid-afternoon on Tuesday, I started to get a bit irritated. They may have all the time in the world, but I bloody well don't! So I phoned the Macmillan oncology nurses and got their answerphone - you always do get their answerphone - saying they wouldn't be getting back to anyone till the next morning. Grrrr. So then I tried the number on Sean the Sweater God's letter heading and got ... someone, I don't know who, who said she'd ask the nurses. I said I'd tried that, and best of luck to her, but she clearly had a more direct line of communication - I suppose all she had to do was walk down the corridor and kick them - because one of them actually did phone me back shortly afterward.

It's going to be chemo, alas. I was all geared up for hospital; I had a whole stack of nice, easy to read books all ready, I'd ordered some pyjama bottoms from Tesco (class, class, nothing but class), I was in the midst of organising cards and pressies for all the birthdays that were going to happen while I was out of commission, and I was looking forward to making sexy Cesare's better acquaintance - oh, yes, and I was looking forward to having Mr Crab cut out of me, too - but all in vain. Alas again, and also: woe.

So I said meh, okay, or something along those lines. Quite honestly, given their track record to date, I suppose I should be grateful they're treating me at all. Besides, I had stomach pains from hell yesterday, and wasn't really up to coming over all heavy-handed like. Not that I ever do. And even if I did, what would be the point? It isn't actually anyone's fault, least of all the nurses'.

I did bitch a bit to my GP when I saw her yesterday morning. I'd made the appointment to discuss my medication - my prescriptions were due to be reviewed and I wanted to make damn sure I didn't lose my codeine lifeline and, while I was there, I got her to add Oramorph to my regular scrip. So I took the opportunity to tell her that I was ever-so-slightly, just a little less than pleased with the Churchill, and thought they'd seriously dropped the ball on my treatment. If they weren't going to do anything else in the meantime, they really should have done a monthly blood test to make sure that things hadn't gone wobbly. I mean, if I hadn't happened to have gone in for that emergency drain, when would they have found out there was a problem? At the surgical pre-op, I suppose, which would have left me with practically no warning at all. Still, that horse is way out of sight now, and here am I with this useless padlock in my hand, so what're you gonna do?

While I'm on the subject of people being useless, I got a letter from the jobcentre yesterday to tell me that my medical certificate's about to expire and I should get a new one if I don't want to lose my benefits (£60 a week, if you recall). Which, trust me, if it had've been, I would've done. But it isn't. The most recent one is dated 12 January and has a six-month duration, so I don't know where their heads are at - though I could make a pretty good guess.

Today, though - today I think I've been voted the hospital's Little Miss Popular while I wasn't looking. Proof positive, if any were needed, that they haven't found this blog. The day started out with a call from a Macmillan nurse. Not the ones from the oncology department; this is a whole different tribe of Macmillan nurses, who inhabit Sobell House at the Churchill and do I know not what. Well, no, that's not quite true: I do know one thing they do - at least, I know now. They have a clinic at my GP's surgery - my own GP, at her surgery ten minutes up the road from me - every Thursday.

I wish someone had thought to tell me this, oh, any time at all in the almost-a-year since I got sick.

Well, now I know. And they had a slot vacant for tomorrow afternoon, so I shall drift on over there and see what that is all about. It may be helpful. It may be rubbish. It may merely involve the distribution of pamphlets, and you know how I feel about bloody pamphlets.

Then I had another phone call, this one from Dr Nicum's secretary, asking if I could come to Shibani's chemo clinic next Monday. I said no, I wasn't sure, it was terribly inconvenient and I thought perhaps I'd rather go get a manicure instead. No, okay, I didn't really. And lastly I heard from a random nurse who wanted to discuss the clinical trial Shibani was talking about the other day (I think I'll just plead guilty and be done with it): she'd been reviewing my records - a feat in itself, as half the time the Churchill can't find them when they need them - and said it looked as though I'd be eligible for the trial. Which is nice (what happens if not?!), but, I think, that will need to be discussed and sorted out on Monday. Sorted out insofar as the Churchill is capable, that is.

I did wonder, while I was talking to my GP, whether I should ask to have my treatment transferred to the Horton, in Banbury. But. That would probably just lead to even more delays; and there's no guarantee that they'll be any more efficient than the Churchill.

On the bright side, at least I'm not paying to let anyone kill me.

(My line manager has just sent me a newspaper article about HIPEC treatment, which is rather lovely of her. It constantly astonishes me how wonderful my various colleagues, and former colleagues, are being. I'm sure I was never that nice to them! Anyway - HIPEC: I'd read about it before; someone on the Mac site had directed me to it, I'm afraid I can't remember who, and I did ask Shibani about it last week, but she didn't think my cancer was suitable for it. She may be right, but Shibani is the chemo guru. I'm going to ask about it again next time I see Sean and his sweater.)

And, completely unrelated to anything that has gone before, this "magical hippie wedding dress" came up on Regretsy today. They were taking the piss out of it. I don't know why. I'd wear it like a shot.

But then, I am now in a permanent blissed-out Oramorph haze, and don't really give a damn about anything.

Which is probably just as well.

When I get to the bottom I go back to the top of the slide

It was a funny week, last week. Not that they're not all a bit strange these days, what with the way everything has to revolve around cancer, in pure defiance of Galileo, but mostly what I do is spend my life sitting around, usually feeling guilty about sitting around and being sure that there ought to be something terribly useful and meaningful I could do if I could only just think of it.

Last week, though ... well, for a start it was Easter, so Monday was pretty much Sunday. And we had Lynn staying - which is a good thing, I hasten to add, we're always glad to see her, but it does alter the dynamic of the house, if only because it makes our rude cats so terribly grumpy. Tuesday and Wednesday were entirely taken up with hospital stuff; Thursday was an unapologetic duvet day; and on Friday we had my brother visiting in the morning, and then the Gentleman Caller in the evening. Again, I'm not complaining, I would like more days when something worth mentioning happens, but it made for a rather full week.

Hospital: well, the hospital trip was primarily to drain the ascites that had been building up in my tummy, but it doubled as a useful fact-finding mission for the long stay that I potentially have ahead of me. I've established, for instance, that pyjama bottoms would be useful to wear under a hospital gown, drains permitting of course; and that the tea trolley on that ward makes its final round ridiculously early, so I'm going to have to take a flask in and get Judy to fill it with hot water before she leaves; and the menu hasn't improved since September, when I was last in, so I may also have to ask Judy to bring me in a care package on the evenings when, for example, the vegetarian option is a Quorn sausage casserole or a cheese sandwich. That's assuming I feel like eating; and that's assuming that I even go into hospital ... but I'm getting ahead of myself.

Tuesday's stay started out well. The Jane Ashleigh Ward was almost entirely empty, presumably because of the bank holiday, and they gave me a bed in an empty four-bed bay, next to the window. Had I but known, I would have begged them to put me in a side ward ...

Everything moved at its usual snail's pace. The ward doctor tried to put a cannula in my hand, scraped me off the ceiling, and went for my elbow instead. After a lot of waiting, a porter turned up with a wheelchair to take me down for a CT scan. Once that had finally happened, I got taken back to the ward, only to find that I'd just missed (a) lunch and (b) the tea trolley. Damn! But they give you snack boxes if you miss a meal, which generally contain more than I eat in a day, so I wasn't about to starve to death; besides, with a tummy full of ascites, it's pretty hard to eat anything. And then there was more waiting. Looooots more waiting. Mr Tozzi, who's scheduled to do my surgery, dropped by to see me, which was nice, but has unfortunately resulted in my being unable to quote anything he said without turning into Chico Marx. He has long, dark hair and a Vandyke beard, and I shall love him and hug him and call him Cesare Borgia. Somewhere else along the way the ward doctor popped up to ask if I was sure I wanted the drain. Huh. I'd been there for several hours by that time, so I wasn't going home without it! I said something along those lines and, some time later yet, along came a couple of doctors and a trolleyful of equipment, and in went the drain.

It didn't actually go in as easily as that. I wish! On the other hand, it wasn't as painful as the chest drains I had done last year - there was neither screaming nor fainting involved. On the other other hand, it was quite uncomfortable having it in, and the discomfort didn't wear off as I got used to it. It was a bloody nuisance, too: the wound was just above my right hip, trailing several feet of tube that ended in a clear bag. It didn't have a carry handle, and was terribly in the way. I think I shall ask one of my craft-minded friends to crochet me a little tote bag for next time. It made sleeping very difficult, too, but since sleep, as it turned out, was not to happen that night, that didn't really matter.

The bay had filled up over the course of the day. First came what I thought was a middle-aged lady, who turned out to be a remarkably well-preserved 70something, whose first words were "I look pretty chirpy for someone who's just had an operation, don't I? That's because I haven't had one!" She'd been in pre-op - on nil by mouth, of course - all day, and had even made it down to anaesthesia, I think, before they told her that the op before hers had run into difficulties and they wouldn't be able to do her. Now, I think they should have made her the first patient of the following morning. But that would be logical. She ended up spending the night in the ward, not knowing what was going to happen, and eventually went home the following day with her operation rescheduled for next week. She had a lot to say about this - unsurprisingly - and, in fact, a lot to say about many things, and I'm afraid I rather threw Judy to the wolves, here; I wasn't up to much conversation, and it was obvious they had a lot of Youth Justice-y sort of things in common. Though there was an odd moment when I was dozing, and I was listening to Judy talking about some woman who'd been having a terrible time with chest problems and cancer and chemo and all sorts, and I thought, gosh, poor cow ... and then realised she was talking about me ...

Patient #2 had had breast surgery, and was mostly unconscious for the duration of Tuesday, although the words "Blue nipple" did escape through her curtains a couple of times. She managed to annoy me on Wednesday by whining about how she didn't want chemo because it would ruin her hair. In a word, lady: tough. If you'd rather have cancer, then go right ahead! But I put it more nicely than that. Honestly I did!

And then there was patient #3. Who whined and moaned and grunted and groused and bitched and yelled from the moment she came on the ward till the moment she left. Including all night. And yes, I do mean all night. I do believe that I counted every breathing moment. I don't know her name, but I think we should call her Lucky. Lucky my arms aren't any stronger, because if they were, she would've been trying to breathe through her pillow before 2.00 in the morning rolled around.

What was wrong with her? Best I could tell, she'd had her gall bladder out. She went home the next day, anyway, so it can't have been anything majorly major. And yes, I daresay she was in pain. So was I in pain, and so was breast cancer lady, but we didn't share it with the entire postal district!

Wednesday finally happened, bringing drugs and coffee, and the hope of release. I'd drained nearly five litres over the course of the day, and was feeling a lot less tight around the stomach as a result. I had also just about reached the limit of my tolerance, both for the drain itself and also for the cannula, which was still in my arm for no readily apparent reason. It wouldn't have been much use, it'd got caught in my sleeve several times and must've been bent all out of shape (it wasn't the only one), but there it was, and there it stayed.

The Churchill has, in theory, a 'home for lunch' policy: they aim to release you before 10.00 am. If ever you find yourself in the Churchill, do not, I beg of you, put any sort of trust in this. They let you go if and when they ever get around to it. I think we finally got out of there around 4.00 in the afternoon. I got de-tubed somewhere around 1.00 pm, which was a tremendous relief - the dressing the nurse used was so huge, it was like having a sanitary pad strapped to my tummy; then I had to wait for the pharmacist, and for my release letter. And also, the nurse told us, Dr Nicum, the chemo specialist, wanted to talk to us.

Whatever for, we wondered. But soon we found out. (I say 'soon'. 'Soon' by Churchill standards. Within a couple of hours, or so.)

Hi! said Shibani. I've been looking at your blood results. I'm afraid your CA-125 levels are elevated again.

Oh dear, I said. How badly?

They're over a thousand, said Shibani.

THEY'RE THE FK WHAT?! I said.

You mean they're back to what they were before the chemo? You mean I might just as well not have had the chemo? You mean that I went through four months of pain and worry and disgusting tastes in my mouth and baldness and exhaustion and mammoth inconvenience for myself and everyone around me, and it was all for absolutely bleeding nothing? Is that what you're saying?

And - stop me if I'm being ridiculous, but ... - could this, perchance, have something to do with the fact that I finished my last chemo at the start of January, and it is now well into April? Is it possible that if I'd had the operation at the end of February it would have taken out the cancer before it could start to come back? Is it, Shibani, is it just remotely possible, that, between the chemo doctors and the surgery team, someone dropped the bloody ball? Could that have happened?!

This conversation didn't actually happen, of course. What I really said was, "Oh, dear."

The upshot is that Shibani wants to do more chemo ("How do you feel about a clinical trial?" "No, I'd prefer a regimen that's been proven to work, thanks") and cancel, or at least postpone, the surgery. They're going to discuss it at their team meeting on Monday, and let me know.

I can hardly wait.

This is why Thursday was a duvet day, and it's also why I have not been in a very happy mood the past few days. I wasn't looking forward to surgery - in fact, I was dreading it, especially as Cesare confirmed I would probably end up with at least a temporary poo bag - but I was thinking of it as the beginning of the end. Of Mr Crab, I mean, not of me. Now we're back to Square One. And Square One, not to put too fine a point upon it, sucks.

Under pressure

Funny old thing, that cancer - yes, indeed, I see you all laughing already. Here I am with a tummy full of foreign bodies doing their best to mount a coup d'état against my internal organs, but a lot of the time I don't really feel all that bad. Then - of course - I feel like a terrible fraud and a hypochondriac and a Burden on the State and lord knows what-all else.

Then there are days like today when one just wants to beg for merciful death.

That may be a little over-dramatic. Not much, though. I've had pains in my stomach - worse pains than usual, that is - for the past couple of weeks, and have been spending a lot of time curled up on the sofa, clutching a hot-water bottle. It's quite like the old days, when Lady Pains used to make my life a misery at least once a month, and sometimes, if they were feeling particularly vicious, twice.

We figured that this was probably ascites building up again. I had a lot of ascites when I was first diagnosed - that was how I came to be diagnosed, in fact - but the chemotherapy pretty much knocked it on the head. I would say I'm glad it was good for something, but actually it was good for a lot of things, for eg, getting my CA125 levels down into triple figures. I'm due for major surgery in three weeks - she said carelessly, as though she were not pooing herself at the very thought - and was hoping I'd be able to hold out till then, there's a limit to how many holes I want people making in me after all, but 'twas not to be. Last weekend I reached the "I wonder if I should speak to the Macmillan nurse?" stage, and by Tuesday I actually went and up and did it. Then I wished I'd done it sooner, as she wasn't able to get back to me until this morning. Still: I was very relieved when she did.

So this morning I packed an overnight bag, just in case, and Judy drove me up to the Churchill. Where we waited. And waited. And waited some more. We were there for just under four hours, with a total of maybe a productive half-hour out of all of it. But, eh. Better'n nowt.

Today was a bit of a triple whammy, pain-wise: the ascites, which is bad enough on its own, plus *cough* poo problems, over which I shall draw a discreet veil; plus the waistband of my leggings was really digging into my much fatter than usual tummy! Owwwww ...

The doctor, once the Macmillan nurse had finally unearthed him, had a good old prod, and I amused myself by taking bets on how long it would be after he stopped poking that my flab would stop wobbling. Sometimes it was up to five minutes. (That's a fib, btw.) They reckon there's definitely fluid in there, which is good, really - it means I wasn't wasting their time, or making a fuss over nothing, and it also means they can sort it. They didn't keep me overnight, but I'm going in on Tuesday for a CT scan and a slow drain, which will entail an overnight stay. That works out okay: I didn't really want to go into hospital just before a bank holiday, and I can cope with an extra few days' pain if I know something's going to be done about it.

I quite neglected to tell you all about my lovely, albeit unplanned, trip to Oxford a couple of weekends ago - when I fell over and grazed my knees as though I were five, not 56 - or about Judy's graduation ceremony last Thursday - when I almost weed myself in the streets of Luton. Not that it would make much difference to the streets of Luton, which are pretty seedy, but I could do without these Tena Lady moments. I think perhaps I should stop going places. It's too hazardous.

On the insult to injury front: I have three, count 'em, three lovely Easter Eggs, one from Thorntons (it says 'Hilary' on it. Actually, the icing has smudged, so what it says is 'HilBLOBy', but, as you'll see from the above, that's perfectly accurate) and two from Hotel Chocolat. Can I eat any of them? No, I cannot. I can eat toast, omelettes, oven chips, and tinned soup, and very boring it is.

As soon as I have been drained, I intend to gorge. After which I shall again be the shape I am now, but for a much more enjoyable reason.

And now I am away, for I hear the Oramorph calling - which may imply that I have already taken more than enough. I see myself in future years rather like an 18th century poet, reposing on my fainting couch, up to my eyeballs in laudanum, composing dreary verse with which to torment future generations of schoolchildren and making impractical plans for a pantisocrital society. Which I believe means one in which everyone wears pants. And so I should think.