This is old news now but, as I've said before, there's no point in keeping a cancer blog if I don't keep it up to date. (There isn't much point to it either way, but let that pass.)
So, I can't be bothered to do the wibbly-wobbly timey-wimey special effects. We are going back just over two weeks, deal with it. Also, this is going to be loooooong.
*ahem* *clears throat*
Right. When we last left Our Heroine - that's me - she was just about to go into the Churchill (which is in Headington, near Oxford, for those who have enquired. Oh, yes!) to have fluid drained from her chest, and then to begin chemo. Or was she??
This was Wednesday, 14 September. On the Monday, I had seen both the chemo and the chest specialists: chemo-lady had been all gung-ho to start the treatment right! this! minute!; I was firmly of the opinion that I was far too ill to do any such thing, a theory that was borne out by the lovely Dr Naj, who discovered that the fluid he had drained out of my left lung, or where my left lung ought to be, the week before had flooded right back. He seemed a bit miffed about this. Imagine how I felt! So he told us, quite distinctly, to report to the chest care day clinic at 2.00 on Wednesday for surgery.
Sorted, eh? Um ... no. On Tuesday we had a call from the chemo department to tell me I had a bed in Oncology for Thursday. I've said it before and shall no doubt say it again: CHURCHILL HOSPITAL, CANNOT YOU LET YOUR LEFT HAND KNOW WHAT YOUR RIGHT IS DOING?? Judy asked the Macmillan nurse to sort this out and get the damn doctors to talk to one another. I don't know whether she managed this or not. Then, on Wednesday morning, literally just as Judy was leaving the house, we had a phone call from the Churchill to tell us to report to the Geoffrey Harris Ward at 12.30. This? Pas possible: Judy had a how-to-deal-with-redundancy training course that morning, and wouldn't be back here until at least 12.00, never mind getting me to the hospital. I went into a state of flat panic: it's hard to describe, but it's as if my chest and innards all locked up. Remember, I already couldn't breathe, so this was super-uncomfortable. I managed to drag myself about the house and do the things that need to be done pre-going away - I can't bear leaving the house for any time and leaving dirty washing in the basket, for example - and Judy skipped the last part of her seminar, came home early, and whisked me off to the hospital.
We checked in, as instructed, at the chest day clinic. Which is closed on Wednesday afternoons. Oh, Naj, I am disappoint! But, luckily, the receptionist actually knew what was going on - I consider this little short of a miracle - and directed us to the OCDEM building.
Have I mentioned that I was in a wheelchair, with Judy having to push me? Or that the chest clinic is a good ten minutes' walk (or wheel) from the main entrance? And that the OCDEM building is at least another ten minutes beyond that? Well: I was, and they are. That's a lot of pushing. I tried to convince Judy that the exercise would make up for the Zumba classes she's missed. I'm not sure she was buying it.
So, anyway: finally, we get to the Geoffrey Harris Ward. There is, of course, no bed for me there. We sit in the dayroom for an hour or two, and wait, and wait, and wait. Eventually a wheelchair (a different one, with a porter) appears, and we are returned all the way back to where we first came from, to Naj's clinic in Radiology, where, thank god, we finally got some action. (Um. Not like that. Ew.) The action in question involves me lying on my side - "So this time, if you faint, you're already lying down," said Naj - while they put a drain into what they kept referring to as my chest but was actually, if you ask me, my side, between two ribs. And then attached it to a bucket, which promptly started filling up with what appeared to be but, in fact, was not, delicious raspberry coulis.
Cue porter, and return - trundle, trundle - to Geoffrey Harris where, wonder of wonders, miracle of miracles, they had sorted me out a bed. A bed in a side ward on my own, moreover, which was a vast relief; I don't want to sound like a horrible snob (too late!), but the scene in the main ward was positively Breughellian. Scary! Anyway: my room had a little air conditioner, and its own loo and shower, and even a tiny fridge. Coo er gosh, posh.
It was lucky it was a (relatively) nice (if fugly) room, because there I stayed until midway through the following Wednesday. "What happened to whisking you straight into chemo, Hils?" I hear you say, and I reply: fk knows.
The week passed as follows:
Wednesday (remainder of): lie in bed, stare at ceiling, chest drains.
Thursday: two trips - one morning, one afternoon - back to Radiology, once for an X-ray, the second time for an ascitic drain which didn't happen as there were only patches of ascitic fluid, not enough to drain. (My guess? The majority of it had somehow worked its way up into my lung, that's how it filled up so fast. I do not know whether SCIENCE will support this, but I don't see how else it could have happened.) Anyway, I was quite relieved: one drain at a time is enough for anyone. Return to ward, lie in bed, stare at ceiling, chest continues to drain. Judy receives letter inviting me for a CT scan next Wednesday. Um - guys? I'm here, already ...
Friday: lie in bed, stare at ceiling, chest has now almost ceased draining. May I just mention how bloody painful it is every time they flush the line? Random doctor appears, administers lovely, lovely morphine, yum!, and then tips talc into the drain (Naj has assured me they do not use Yardley) which will, allegedly, glue the lung to the chest wall, thus leaving nowhere for the ascites to run, baby, nowhere to hide. Morphine! Yay!! Drain, disappointingly, remains in place. I am v tired of having to take my bucket with me everywhere I go, plus I have managed to kick it over twice.
Saturday: lie in bed, stare at ceiling until quite late at night when WHOOOSH! there is VOMIT! and lots of it! Nurse is unable to administer anything to relieve this until it has been prescribed by a doctor. Of a doctor, any doctor, there is no sign. Vomit until I can vomit no more, then finally, mercifully, fall asleep.
Sunday: nurses ("Is this wise, sir?") remove drain. Hurrah! No more bucket! They tell me I'll be getting another X-ray. This fails to materialise. And, in theory, I am now ready to move to Oncology. Hah! Lie in bed, stare at ceiling.
Monday: lie in bed, stare at ceiling. No room at the Oncology inn. Judy receives letter at home giving me an appointment for chemo as a day patient - Dr Nickum had been quite clear that, as it was my first treatment and I'd been so ill, I should stay overnight for observation - on Friday. (Later, she discovers several messages on our home phone advising of same. GUYS! I AM IN YOUR OWN DAMN HOSPITAL, CHECK THE RECORDS!!!) Encore du vomit, this time during poor Judy's visit. "Told you I was ill," I say proudly although, to be truthful, I think we've all figured that out by now. Super-incompetent nurse administers nightly blood-thinning shot (it's better than having to wear the socks!) that makes my arm swell up like a balloon, and also attempts to insert a cannula for a nausea shot, only succeeding in HURTING A LOT. Do not like this nurse.
Tuesday: lie in bed ... ah, you know the drill by now. Consider suggesting they do my chemo in a stable, except the Churchill probably doesn't have a stable.
Wednesday: remember that CT scan? Well, they decided to go ahead with it. Awoken far too early and forced to drink two litres of water. CT scan happens, including almost-painless cannula - I had been flatly refusing to let anyone on the ward (nurses, patients, cleaners, whatever) put one in - thus proving it can be done. Return to ward. Vomit up all the water. Somehow force down spectacularly unappetising lunch. Am informed that - can it be?? - Oncology is finally ready for me. Huzzah! Or is it? Transfer to Oncology duly happens but, once there, I am put in a ward - bed 42, which should have been a good omen but wasn't - and just left there for three hours, with my notes and my drugs sitting out in the open on the cabinet. I also didn't have a pillow. And I was throwing up as no person has thrown up before, or ever will again. (This is probably not true, but I was certainly very sick indeed.) I would probably be lying there still if Judy hadn't arrived and gone and grabbed a nurse from the front desk, who claimed they hadn't realised I was there. Yeah, that seems to be a pretty universal problem, doesn't it, Churchill Hospital?
So: once finally officially on the ward, I get cannulated again - again, not too painful, and they put it in my forearm, not my hand, which is way better - they administer an anti-nausea shot, not before time, and promise me chemo tomorrow. This turns out to be a bit like 'jam yesterday'. Am feeling nostalgic for the good old days of lying and staring at the ceiling. Which is lucky, because ...
Thursday: random doctor appears and informs me that they will need to check the CT scan (they couldn't have done that right away?) and take more blood before I can have chemo. Lie in bed and ...
Friday: today I shall finally have chemo! Oh, glory hallelujah! But. They have not yet ordered the drugs, which will therefore not be with us until midday. It's a five-hour procedure. It could be a long day.
(Later) Chemo happens. It isn't painful. It isn't even uncomfortable, particularly. It is a bit weird. And very boring. Judy points out that the hospital got their own way after all: I had chemo on Friday, just as they said. "Not as a day patient," I argue, feeling that even the tiniest victory is, well, a victory. I lie on my back and stare at the ceiling, and worry about side-effects ...
Saturday: ... unnecessarily. I feel fine. Not even any vomiting - although, mind you, I have already done enough vomiting this week to last me a lifetime, thank you. Judy arrives. We wait. Nurse appears with big bag full of DRUGZ, all for MEMEMEMEME!! "Have you had your little red book?" she asks. "The Thoughts of Chairman Mao?" I wonder. I know the NHS is, quite literally, a Socialist construct, but this seems extreme. But nyet. This is my Chemo Diary, in which I am to record treatments and side-effects. The nurse helpfully enters the date of my next treatment: 15 October. On returning home, we find that this is a Saturday, and feel that this is improbable.
Yes! Returning home! We do it! Oh my god, I have never been so glad to see my own HOUSE and my own ROOM and all my pretty THINGS and my CATS and to be able to have a proper BATH and a cup of tea when I want it instead of having to wait for the damn trolley, and have PROPER FOOD (oh, hospital food, so like unto the school dinners of my youth - and so particularly hard on vegetarians), and, and, and ... Also, I believe that I have, in the past, used in my writing the phrase 'the hushed tranquillity of a hospital ward'. If I ever do so again, please: shoot me!
There is (clickety-click) no place like home. Especially when you do not have to share said home with an old lady with a pneumatic bed that breathes all night in a spooky sort of way, or with (ew!) sick people!!!
It was not all bad: Judy visited every evening, once with the Gentleman Caller and once with our friend Sabine (who brought choklit), and my brother came up from Bristol twice. And I had Java Bear for company. I also had my MP3 player, several Georgette Heyer novels and Bill Bryson's At Home, both, in their different ways, ideal for a long period of inaction and brain-death, and a puzzle book. The problem was that, as the expected five days dragged on and on, my MP3 player ran out of battery, I stopped being able to focus on reading, and I came to the conclusion that if I ever saw another puzzle I would scream. Worse: I started to run out of nighties and, even worse than that, knickers. By Friday I found myself in the embarrassing position of having to wear black pants under a rather diaphanous white nightgown. Not a good look.
Perhaps the strangest of all the strange things that happened was on Friday night, when the trainee nurse looked at my pen - a gag gift from lovely friend Joan that features a photo of Mr Josh Charles - and said, "I like your pen." "?" I thought. "He's the best thing about The Good Wife," she said. "???" I thought. "I saw Hairspray the other day," she said, "he was one of the dancers." "STOP IT!" I thought, "STOP IT NOW, THERE IS FANDOM AND THERE IS HOSPITAL, AND NEVER THE TWAIN!" "Yes," I said, "It's sad, I know, but I do have a bit of a crush on him." "Oh well," she said cheerfully, "my sister's 28, and she's still obsessed with Boyzone." NOT THE SAME THING, NURSEY. NOT THE SAME THING AT ALL!
I've been home for five days now and, touch wood, no major problems: some tummy pain, but that's to be expected, that's where the evil Mr Crab lives; I'm tired, but when am I not, and fuzzy-minded ... ditto. It could have been a lot worse, and I know I'm very lucky. I don't want to be a selfish cow but, again - too late! - but I hope I stay that way.
Today is the first day that I have been sufficiently un-fuzzy to write all this up. Well: I did warn you it would be a long, hard one.
Ooooooh, Matron!
FormerMember
Hi Hilary,
1) Oh what a torrid time you have been through, must have been awful for you. Big hugs.
2) Churchill, is that in Oxford, sounds like a right load of novices running the place, how awful for you.
3) How the hell do you remember so much, I am amazed!
I must say I did enjoy reading your post, I hope that is not a bad thing, it took me on a real emotional rollercoaster. I do hope that you can have a much more better time ahead.
Sorry about the vomit Hilary, but you did make me laugh! I'm with you on hating hospitals. Last time I was in, I shared a room with 3 elderly ladies, one of whom dribbled everywhere she went (and I don't mean from her mouth). I left the hospital with MRSA and felt glad to escape with my life so now I try to ensure anything I need done gets done as a day patient at worst! It's bad enough having to sit in the chemo ward for 7 hours, never mind be an in-patient for several days, so you have my sympathy with the reading, puzzles and MP3, which is the kit I take with me to every appt. During those 7 hours, I'm not allowed to move other than to go to the loo and I actually get to the stage where I want to just run screaming (or rather lurch screaming) from the suffocating boredom. In the last 3 months, I've read about 10 Georgette Heyer, a couple of John Grisham, and a lot about Lung cancer, so the thought that reading (and I love reading) as one of only a few options for escaping boredom, leaves me feeling depressed, but full of admiration for your ability to laugh about it!
I'm glad you're now back home and can just relax and do your own thing. Long may it continue!
Hi Hilary... don't go away for so long again! Glad that despite kicking the bucket twice, you are back home safe and sound with your things and people and books and cats and I am so with you on that one... So glad to have internet and be able to say to you too...
Phew, where do I start?
I am envious of your facilities- fridges and that but not of their organisation.
To say I hate being in hospital is putting it mildly. First time I discharged myself, got on a bus and went home. Had to come back in 5 hours later of course, but felt good. Second time begged what do I have to do to get out of here? Did it and left early.
Last time GC told me I would be in 2-3 days. I believed him. It was 6 days.. 'well you wouldn't have gone in if I had said 6 would you? he said when i told him he had lied... hmmm. It was the food and boredom that got the better of me.
Thought you said it contained vomit...? looked quite clean to me.. was expecting lumy green streaks across the blog. Oh well, it was entertaining all the same. If one could actually timewarp I would wonder if you were the lady opposite me when i was in... she vomited her way through the week and every meal time while the other lady opposite (bit old and senile) would pull her pants down and do a crap while we ate- in the chair, on the floor etc. And I wonder why I don't like the places. What did you do to get the private room? Probably all that raspberry coulis I guess.
Hope the chemo is not making you feel too rubbish and remember when the grown up books get too much (they did for me) the Moomins are always waiting and the Hattifatteners and Snuffkin et al somehow make a lot more sense when you have cancer..... and of course Little My cos she is the coolest of them all (ha ha I would say that eh?)
that was almost a blog in reply... that's what happens when you can't speak for a week.. so much to say
Big hug to you and one for Judy for being a star and ones for the cats cos they need them too,
Tim - I don't really have an eidetic memory, I started keeping a cancer schedule of what happened (or didn't) when some time ago, and Judy kept it up while I was in hospital. Yeah, the Churchill is in one of the suburbs of Oxford - Headington, mostly famous for the Headington Shark. I can't fault the actual treatment - when it happened; it was all the hanging around and waiting, and all the admin crossed wires that were such a pain.
I enjoy a long, hard one in the morning myself, and that's why I do the Times crossword puzzle every day.
Ann - the shared ward in the chest department was a bit like your experience: there was one old lady who was, apparently, a Traveller, and who, from what we overheard, kept on deliberately weeing the bed so that she wouldn't be sent home. The old lady in the breathing bed in Oncology had to have a commode, but thank god they at least drew the curtain!
MRSA, OMG! Have you kicked it now? They were, I'll say this for them, really careful at the Churchill. Unfortunately, this meant that one woke in the morning in a delightful fug of rubber mattress, disinfectant, and sweat - but still, better than MRSA. Almost anything would be.
I've always been an avid reader, but there is something so draining about hospital: you take in all sorts of things to do to keep yourself entertained, but in the end you just end up ... well, lying and staring at the ceiling.
Are you a Georgette Heyer fan? When I was able to read, I found her ideal.
Little My - I have to go away sometimes so that people will miss me. I wasn't expecting to be gone for ten days, though! It wasn't much fun at the time, but at least I can look back on it and laugh not, albeit rather hollowly.
Oh, the food! Allegedly they had a Week 1 and a Week 2 menu, but they must not have thought that anyone would stay in that long because both menus were pretty much identical. My #1 vote goes to the day when the lunchtime veggie option was cauliflower cheese and the dinnertime one was macaroni cheese. Most days you could at least get a sandwich (woohoo, hold me back) if you didn't fancy anything else, but there wasn't even a veggie sandwich that day. FAIL, HOSPITAL, FAIL.
I wiped the vomit off before I posted. I am thoughtful like that.
Thanks for being so thoughtful with the wiping off Hilary... but then you have to say it did contain vomit, but doesn't now.... not that i am a pedant or anything....
SANDWICHES???? I am moving to Oxford.
No luxuries here in Wales... just unidentifiable splodges on plates when they realised I was there and needed food which took 2 days... The food was so bad that it became a star in its own right.. I would take photos of it each day and text them to my mates and how we laughed... sometimes we would play guess what this is meant to be... as you say, books are hard to get through and sniggering at your food beats staring at the ceiling and beats crying about it... i got food parcels sent in eventually....
Yes, we miss you, but we can say that anyway when you go to the shops, so you don't need to go to hospital..... Ok?
