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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.
So much for the Churchill being a centre of excellence for cancer treatment. No wonder you've been down and exhausted, your mind must be working overtime & your emotions shot to pieces. If they phone you tomorrow, or if you phone them, let us know the outcome won't you? I feel so infuriated on your behalf, though that's no consolation to you obviously. Like Clare, I wish ...
Loads of love & big, careful hugs,
What a f****** nightmare.
Big hugs and rage on your behalf.
The more hospital experiences I have either personally, or hear recounted by others, the more I think we live in a world of demented beings sent forth to torture us in our beds. I sometimes wonder if there are actually very few ill people and they employ actors to make us so miserable we hurry up and get better to get out of there, or die (for the same reason)
I wish you had said what was in your mind, but of course we don't do we? I am just as bad and I don't even have the excuse of being English...
I think I said all the sweary words to you elsewhere and I suspect if I said what I wanted to say on here, the moderators would need to borrow your fainting couch and be revived with smelling salts...
I hope you get some 'good' news after Monday. Good, as in cancer 'good' cos lets face it, in our world, it's all crap news isn't it really?
I remember rejoicing to my brother that my liver scan was ok. He said I'm just freaking out that you have cancer in your bum, and you are worrying about it being somewhere else!'
Like I said, its all relative.
Though in your case, rocks and hard places spring to mind and I don't know what would be the best news (apart from the obvious, we made a mistake type thing) I think in your position you might still want the op. Though of course, there is the poobag thing then. Like I said, rocks, hard places.
At this point you are to insert all the swear words imaginable and some you can't even imagine. actually, I am going to say it in Viking cos I need to get it out of my head... . moderators, I really wouldn't try google translate on this one ok?
jävla fan fan fan skita jävel cancer sparkar sin jävla ass in i nästa vecka. Fitta.Jjag älskar min vän Hilary och du är en wanker oäkta bit pissa och jag önskar jag önskar att du skulle knulla rätt ut och dränka dig i en pool i din avföring.
There. oops I forgot we share a word ;)
I like the idea of your Borgia Van Dyke surgeon. I feel he should have a big hat and cape though.
All the hugs to you and some more and I'm here with you, swearing and kicking all the way...
Little My xxx
ps I just thought I would do google translate and see what happened! I am crying with laughter now..... x
My dear Hilary,
What a truly bloody awful ordeal you have gone and are going through!!!!! Yes, it bloody well, pissflappy, bollocky sucks to f**k and beyond. Other than that outburst I can only send you the biggest hugs ever not in a tilty way you understand, they are huge genuine huggy hugs for a brave lady whose battling on no matter what. DID YOU HERE THAT CHURCHILL SO GET YOUR ACT TOGETHER YOU FOOLS.
Wish we could come up with some ideas to fill your days though and I do wish we all lived near to have good times together. Do you know, that cancer street soap with us all in it would be just the place to hang out.
I'm so so sorry, that's awful! I think I have dust in my eyes on your behalf. I wish there was something that we could do to get them to pull their fingers out.
Sending you lots and lots a lots of love and hugs
Hello Hilary - sorry I'm so late with this.
This whole situation sucks and it felt like a knife going through.... I'm feeling a bit dusty eyed too.
Hope tomorrow brings news that you can hang your hat on.
Sending you hugs XXXXXXX
I didn't mean to make anyone cry! Heavens, I don't think it's that bad. It's a bit of a setback, but I'm sure it'll all get sorted out.
Plus I got prayed for today, so I reckon I'm sorted.
Thank you everyone, for your lovely comments, and for being so caring! I shall now proceed to alienate you all by telling you that I have another Easter egg now, plus loads of mini-eggs and things, from work. I have to stay alive for quite a good long while just to get through all this choklit ...
A bump in the road, I'm sure. I keep telling myself that I am glad that I have cancer now and not 40 years ago when it was pretty much a death sentence. Of course, I could have had it 40 years from now when they might have a cure!
It is a bit of a rollercoaster ride though, isn't it? The problem with doctors is that they are the experts and we have to trust them and believe what they say and have us do is for our best. But they screw up, too. At least my doctor told me that he felt really bad that he mis-diagnosed me. Doesn't sound as though you will get that satisfaction. It probably wouldn't help much at this point, anyway.
As I have said before... choklit is good for you!
I am posting this for you because it made me laugh till I snorted. Hope I am not offending any Germans out there.
Bloody hell Hils,
I too wish you could have told them exactly what you thought of their treatment and inability to communicate with each other, plus Cruton is right, your GP needs to pull their finger out and get your pain sorted, this sort of thing makes me so F..KING mad!!!!!!!!!!!!
Sending you a gentle hug xxxxx
Here's hoping that today they will decide to take a positive step in the right direction regarding your treatment ......... it's about time someone got their act together in that hospital !
Love and hugs, Joycee xxx
*hugs* and thank you! to everyone who posted after I posted last. It's been a crappy day today, I've been asleep for nearly all of it. Such a waste, if you think that I may not have all that time left.
Anyway, I had enough energy to work on my stalker skills, and so I bring you the only photo I could find of Cesare:
Ooooooh, I'd let him operate on me :)
I tried stalking a photo of GC and never found one. I suspect his shiny face is too lovely for computers and may shatter the screen or something.
Hope you hear some good news today
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