Nine days on...

It's been nine days since the Botox injections into my bladder, and it has made a difference. I'd say it has reduced the pain about 20%. I'm a lot more mobile, I can walk short distances without too much pain, and it doesn't hurt as much after I've been moving around a bit. I don't have to spend the rest of the day in bed taking painkillers, and having a TENS and a hot water bottle permanently attached to me, after attempting a short walk. I even managed to walk to a park near where we live for a BBQ on Monday, and only had to pop back to use the toilet once!

However I still feel pain as the bladder fills, and my pelvic floor is still always tensed up because of the pain. I can relax it temporarily when I do some Qigong (a version of Thai Chi), as you have to focus on movement and breathing at the same time. I do the exercises that benefit the kidneys and bladder, and fatigue. I'm glad I gave it a go and went to classes last year. I'm usually very critical of a lot of new age healing stuff, most of it is utter bullshit. But it really made a difference. Even when I forced myself to go after a bad pain day, it would take about 10-15 minutes in, and I'd forget about the pain, it eases off the more you do. But obviously I can't spend all day long doing Thai Chi.

I won't see my consultant for a couple of weeks yet, but he said before that if the Botox didn't have the desired effect, then he might consider nerve blocks. Still, I'm glad I had it done. I just hope it lasts. Although if I have it done again, I hope they leave me under anaesthetic a bit longer, I don't want to wake up in that much pain again!

But just side-tracking for a moment, I got my rescue cat from Cat's protection on Easter Sunday, and she's absolutely gorgeous. She was treated badly and came to them in poor condition, and was there for two months as no-one wanted to take her on. She's very skittish, but very loving. The first day she was with us, she spent 10 hours under the bed until she'd come out. Then when we went to bed, she got in with us! Spend all night snuggled into the pillows between us. It's very satisfying watching her trust us more and more, and she's a welcome distraction from all our troubles.

I'll post again when I hear from the consultant. Hope you are all having a good day. X

Botox injections

Yesterday, I went to hospital for day surgery and had Botox injected into the Trigone. And what a surprise, me being trouble, it hurt like hell when I woke up! I knew all the nurses and doctors there, and that was the only thing stopping me punching one of them for being so bloody patronising. Luckily, one nurse who has treated me in recovery three times now and knows me well, clocked me, gace me some morphine She administered triple my usual dose. Why do these things always happen to me?

After 10 agonising minutes, and lots of painkillers, it finally started to ease off, and I was sent back to the ward after about an hour under observations.  But then the indwelling catheter they had put in blocked. The Sister wouldn’t believe me, saying no, it’s draining and it’s clear. I had brought my saline and syringes with me, and thought sod you then, I’ll do it myself! I asked her to get me a sterile plastic bowl, and laid it all out. It wasn’t in particularly sterile conditions but I did the best I could, soaking my hands and table in alcohol gel. And yes it was blocked. I pulled out a whole syringe full of mucus.

The Sister was astonished, saying she’d never seen or heard of that before (despite me telling her several times I had a NEO-bladder, NOT a normal one and how it worked). This has happened before and should have been in my notes but wasn’t. To give her credit she did write this in my notes so (hopefully) next time I have surgery that they are to do regular saline flushes, even if it appears to be clear and draining. I have a max capacity under anesthesia of 400ml, 200ml when conscious. I don’t want it to rupture!!!

My discharge note said the procedure had gone without incident. Did it fuck!!! I had my anaesthetist and one of the Urology surgeons come back in to check on me after all my shouting and thrashing when I woke up.

Anyway, a day later and I’m sore, and my tummy is swollen but otherwise okay. I can’t really tell if it’s worked yet, I was told it could take up to two weeks, if at all. So I’ll have to wait. I should be seen in outpatients in 4 to 6 weeks time. Hmm. I’ll take that with a bucket of salt. I took the indwelling catheter out when I got home last night. I didn’t want any bugs to take hold after my less than sterile saline flush. I’ve been drinking lots of water and the evil cranberry juice. The stuff still irritates me. I was a bit antsy last night and couldn’t settle – the drugs wearing off I guess – and went on a cleaning spree of the house. Today I’ve been snoozing all day. In fact my other half has been asleep on the sofa for the last 20 minutes so I’d better sign off and go to bed. I’ll update you if there are any changes. Hope you are all as well as you can be. X