Well I was feeling pretty rough when I woke up in the morning, having cried myself to sleep the night before. Mostly reliving the terrifying, horrible events of 18 years before when I delivered two stillborn baby boys on my living room carpet. I was surrounded by ambulancemen, a midwife, a GP and my husband. This year I was alone, but still a trip to the hospital was on the calendar. I should have been celebrating my firstborn becoming adults.
I went to work for a couple of hours then Betty, my mum for the day, took me to the hospital. The urologist was running about an hour behind so it was a long old wait. We managed to entertian ourselves with magazines, sudoku and the odd crossword.
Not a stranger to endoscopy, but usually I've had to endure the awful prep to clear out my colon and half starved for two days. This time all I had to do was NOT wee. Given my problem is weeing, I managed quite well.
The nurse sent me off to go an MSU (mid stream urine) which took me approximately forever, of course. It tested +blood and ++leucocytes indicating erm...well I was bleeding and my body was trying to fight nasty things in that area. Quelle surprise! I got changed into the gorgeous back to front gown with missing strap on one side. She went through my relevant history - repeat UTIs as a child through to adulthood, a couple of pyelograms (x-ray, injected with contrast dye as with a CT, then x-rays every few minutes for an hour). The whole cancer thing, the fact that it was a suspected radiation caused stricture. I asked how likely it was that the dilation would be done that day if it was in fact a stricture and nothing more serious (cos having your wee hole close up, that's fine isn't it). She seemed a bit confused about this. Uri might have been up for stretching my tubes, these guys were not.
Into theatre and a chat with Sam, Uri's Boston equivalent I guess. I confirmed that actually, apart from three attempts with three different antibiotics to kill of a particularly nasty UTI shortly before my cancer diagnosis, I'd escaped them. I did have radiation cystitis and my flow has gradually deteriorated over the last 3 years. It was a bit strange lying on my back, for sigmoidoscopies/colonscopies it's lie on your left, knees to chin.
So he applies the local anaesthetic - no stinging, just felt cold. More discussion of my treatment to date and my symptoms. I told him about my J pouch, he didn't know what was..........or maybe he was trying to distract me by asking me what it was?
Then he goes in with the camera..................or not. The camera won't go in. The camera is tiny and fits into all normal humans, but not me. I could tell it wasn't going in, cos it hurt. He ended up using a catheter to stretch it before trying the camera again. I felt it, but once in, it was OK. I was relieved to see inside my bladder there were no tumours, nothing that looked wrong. Although there was a lot of debri floating about in the saline they flushed in. This is because I've not been emptying my bladder properly. Sam asked if it was because I was worried if I drank too much, I'd have more problems with my J pouch leaking - erm....NO, it's because I FIND IT HARD TO WEE. Honestly, he couldn't get the sodding camera in, I told him I had to force it out, and I do mean FORCE it out. Since I've known what the problem might be I've made even more effort, because I'm not a fan of kidney infections.
They don't do female urethral dilations under local anaesthetic in my hospital apparently, they only have male dilators, unless they get them from general surgery theatres. Sam seemed to think I'd be a bit mad to have it done under anything other than a general anaesthetic. He asked if I had any worries about a general, erm no, just want the damn thing fixed asap please.
Out of theatre, and my bed was wheeled over to the other loo so I could empty the saline and get dressed. OMG.
The temporary dilation with the catheter was amazing. I haven't peed like that for months, if not years! Fecking hurt though, and obviously it was pink wee. It continued hurting for a good few minutes, as expected.
The nurse went through everything again and I was given a massive tablet - antibiotic, to reduce the risk of infection which is a risk after cystoscopy, given my history I'm a bigger risk. I'm now on the waiting list for Sam's general surgery list so he can give my urethra "a good stretch". It makes me shudder. Sam also gave me a prescription for a different oestrogen cream, since I've been waiting for the Premarin to become available for three weeks.
I was tearful because of my babies, I was tearful because I didn't have a tumour. I was tearful because I'd hoped they'd fix me there and then, but I just had to wait even longer. Betty took me back to work to pick my car up and I asked Paul if I could go home. Lets face it, I would just have sat and cried and got through the mansize tissues and done little else if I'd stayed.
At home I had no bread, so just had scrambled eggs, no toast. I drove to the surgery, got there, realised I'd left my prescription at home, drove back, picked it up and back again. Emergency supplies from the Co-op and back home to cry again. And wee. And bleed. And hurt. And cry cos it hurts.