The corner of the admissions/waiting area I’m in is the corner with the TV mounted on the wall. Next to the TV is a Post-It note.
“9/3/2020 Fix clock here.”
This does not inspire confidence.
I had my initial assessment on 23 December and should have been in within 31 days. Today is day 68. But I got a phone call a fortnight earlier asking if I was free to attend (If? Like I’m going to say no) so here I am.
The lack of specific information, though, has nearly caught me out as I was convinced I was going to be a day patient. Nothing in the call-in letter suggested I wouldn’t be; I haven’t had any food since 8pm last night, drank 250ml of water at exactly 6am, presented myself to the Admission Lounge on the second floor at 11am… got told to go back the Day Centre for admission as the letter was wrong.
Check in, get changed… and wait.
Hermes failed to collect my Amazon returns twice, but they gave me the refund anyway and left me with the goods to dispose of as I saw fit – so I dragged out one of the dressing gowns with me as I hadn’t found anything better. Plus, my iPad to keep myself amused and to annoy everyone at work with, and my phone in case the battery ran flat on the iPad.
At some point towards the end of Bargain Hunt the anaesthetist and surgeon turn up to talk me through what will happen. I still find it incredulous that we do this verbally, with only the piece of paper being the one you sign to show you’ve understood the process as written confirmation. As many have noted before, I don’t always pay attention when people tell me things. And the list of questions I’d thoight of beforehand to ask were in my bag – but, fortunately I remembered them all.
Actually, there was an unexpected question. What is a catheter? Last time I was in hospital was 48 years ago and it’s not as if I watch hospital dramas or fly-on-the-wall series. I do know a nurse, but it never came up in conversation. Having got the answer I slightly wished I hadn’t asked.
Oddly, underneath the TV are a couple of posters which explain what happens while you’re in the centre. Why these could not have been included in the information sent beforehand I know not; having read them, and had my conversations, my main concern now is that it’s apparent that I will be staying in overnight. This will come as a relief to the friend who offered to stay overnight in case I had any issues but does mean my out of office email is wrong.
Mmm Mmm Mmm Mmm
The waiting room slowly empties, to the point where I am the only one there with no-one to talk to. Not that anyone was talking to anyone else anyway, but even the nurses have stopped looking in. I’m there so long that someone comes in to clean the tables and chairs and put out the gowns and other items for the next day’s patients. Even the TV has been switched off, possibly because the afternoon schedule includes Doctors, and they didn’t want us worrying.
Then, at last, 4pm comes around and a nice man comes to escort me back up to the second floor. Straight to theatre we go and I swing myself onto the bed to be prepared witha canula and suchlike. Then follows one of those conversations that I just love about my life.
One of the nurses makes note that it’s just 4pm and apologies that I haven’t anything to eat for 20 hours. I mention I’m sort-of used to it because of the volunteering I used to do, including with Leeds United Ladies. One of the nurses they know plays for them. It’s the same name I know; I think she started just as I was leaving. I mean, what are the chances? I also mentioned the cadet I know who is also a nurse, but they don’t know her. Oh well.
“Okay Gary, just breathe normally for me,” says a voice, as a mask is fitted over my face.
“Okay Gary, how are you doing?” says a different voice.
I look at the clock in front of me. It’s now 5.10pm and I’m in Recovery 1. If I was supposed to count backwards from 10 while they knocked me out, as others have said happens to them, I wholly missed that bit.
I’m feeling a bit hyper thanks to the drugs, but also feeling pretty immobile while the catheter is in me. I can see a tube coming out from underneath my gown, and a rather dodgy-coloured liquid running through it. What happens is, after they remove everything they find in your bladder you get an in situ form of chemo (Mitomycin C), which is much better than having it run through your veins and affecting the rest of you. Afterwards, one tube pumps in liquid to disperse it and the other tube draws it away. Quite clever, but I’m glad I was unconscious for most of that.
As if by magic, the surgeon appeared.
It turns out that the one growth he was expecting was two growths, one small one very small. But he got them both out.
Did I mention I was drugged up, and that as a rule I tend not to take things in when people tell me important stuff? I think I managed to say “Oh” but that was it in terms of comprehension. With a rigid cystoscopy you see more because you can use a better camera. Really, really glad I was unconscious for that bit.
After an hour or so when it became clear there was no adverse reaction to what had gone on and that the catheter was doing its job, I was wheeled into Recovery 2. Much easier than it sounds, as while hospital floors are smooth there are what I called speed bumps; the metal strips under doors, including on lifts. Every time we took one of those the catheter bumped with me, which was just weird.
But finally I arrived at my destination for the night as was offered tea and toast. I don’t get the toast thing at all but after a 24-hour fast it’s most welcome. Unfortunately it turns into mush while I’m chewing, and it’s a bit difficult to swallow as my throat is still sore from having a pipe down there during the operation. I don’t care… it’s food, I’m still alive, and I can eat!
Round about this point, the drugs wore off. Despite the noise as the nurses change shift my head sinks into the pillow and I drift off… but only for a few minutes, as I need to get up and change to my actual bed for the night, not the one I arrived in.
It’s rapidly approaching 10pm… lights are being dimmed and we’re all being checked to see if we’re comfortable. My blood pressure is taken. Two days earlier when they did the pre-operation checks it was 150/90. That morning it was 165/95. Now it’s dropped to 130/something.
God shuffled his feet…
Then I make a rookie mistake. Do I want some pain medication? Actually, no. I feel fine. Better than fine, all things considered. I haven’t even been sick in the bowler hat-shaped bit of cardboard that they sent me out of Recovery 1 with. The other men on the ward take some, like old lags on the prison ward stocking up for later. This decision will come back to haunt me later, but I’m blissfully unaware of this as I settle in for the night. I opt not to have the curtains fully drawn though, just at the sides. It feels too closed-in for me and I’m just far too nosy.
Sleeping is, of course, impossible. I’m on my back and don’t want to turn over in case I disturb the catheter. I’m sharing a ward with four other men of a similar age and we all snore – at different times. One patient doesn’t have a catheter but does make regular trips to the toilet at night. And the bloke opposite has breathing problems. Severe breathing problems.
And then, at 5am, I’m semi-woken in order to have the catheter removed. I sure she said “6am” last night but there you go, I’m not going to complain… until it comes out. It’s a very weird sensation. Once the four of us have expressed our discomfort at our removals in four different ways the lights start to come up and it’s time for breakfast. Tea and toast. And water, because we can’t be released until we’ve passed water on our own. A friend who is a month or two ahead of me in her own cancer treatment warned me that this would happen, but she didn’t say you have to pass water twice. Perhaps that’s just for us with bladder cancer.
As if by magic, the surgeon reappears.
Somehow I get over my surprise and actually remember that he’d said “two growths” the evening before, which I ask him about. One was one centimetre or so, the other (on the opposite wall, perhaps worryingly) a few millimetres. Both looked to be fairly superficial – the best I could get him to commit to. Obviously the growths have to be sent away for analysis (two weeks), then the clinical team has a chat about them (one week) then I get called in to hear the results. Sounds good.
This optimism lasts until he reaches the next bed and says something similar about superficial growths… but I’m still counting it as good news.
Less good news is that I’ve been chugging back water, and my body has finally decided the tank is full. Specimen bottles are made of cardboard too these days so off I trot to do the necessary. Then I suddenly – and literally – double up in agony as my bladder empties. No-one warned me about that. Should have stocked up on the pain killers, as whatever I then asked for seems to have little effect 90 minutes later when I make my second trip.
One of the nurses kindly gives my bladder an ultrasound and says there’s about 100ml still in there but things seem to be running fine. I frown; from listening to other conversations I know that we had to pass 100ml each time. So how much did I pass?
“About 300ml the first time and 250ml this time.”
I push the water jug away. I think I’ve had enough.
I think I’ll disappear now
The main thing is that I’ve made my two donations and they look fine. So I’m free! After having my BP taken one more time… now up to 140-something/something. But, of course, there is one more important piece of up-front information I still haven’t been give; I need someone to look after me for 24 hours after I leave theatre. Fortunately, the friend who is giving me a lift home (and who would have stayed overnight if I’d been a day patient) was available to spend a few hours with me to make sure I was okay.
Which I generally was, until I had to pass water, and doubled up in pain each time, and for the two remaining occasions that day. For me it was agony; but as my sister said “You’d think the boy had never had cystitis.”
By the next morning things were better, and I was back at work. Or my dining table, anyway. I was due in the office but it was busy there; just as well, as I discover that the usual workplace sitting posture is not great when you’ve had work done on your bladder. Everything scrunches together. I also forgot to drink while working on the laptop (as normal) which meant I passed a lot more blood than I was expecting to that evening.
This is not me being a martyr, by the way. I’m on a contract; if I don’t work I don’t earn. And there’s no heavy lifting involved.
So now, we wait. Again. Smart money is on a six-part course of in situ chemo (more pipes) but I might get lucky and an All Clear, with just the three-monthly check-up for now. But we can worry about it at the end of the month.
Gary’s top tips
One. Assume everything will take twice as long as you’re expecting. I thought I’d be a day patient on the Tuesday and back at my desk on Thursday; I should have written Wednesday and Thursday off. Better to go stir crazy.
Two. Take the pain killers when offered.
Three Keep your list of questions to ask with you at all times, and remember to add a few more as you get more information.
Four Buy some large cushions. I’ve been in this flat for eight years now and still don’t have any; they would have been useful to put under my feet when trying to recline and relax.
Five. Pack headphones and a charger or battery pack. You’ll get bored very quickly.
Six. Wear some tracksuit or jogging pants for the first few days. Keep things loose.
Bonus tip. Watch out for that first bowel movement after your fast…