My neuro urology appointment (a specialism within medicine that looks after how the bladder and brain work together) got off to a very wet start this morning. But the liquid being spilt wasn’t wee, it was tears.
I’ve been having increasing issues with my bladder over the last year or so and they’ve been having a really disruptive effect on my sleep. This morning I had a long-awaited hospital appointment which offered the hope of a solution.
Over six months ago I agreed a treatment plan with my Neuro Uro consultant that involved a mix of medication and the practical step of seeing if I could self-catheterise. This would mean I’d have a way of emptying my bladder quickly before I went to bed at night. No one was sure if I’d be able to do it safely or independently but my consultant thought it was worth trying and so asked the specialist nurse to see me.
After yet another night disrupted by a lot of super slow weeing I arrived this morning for my much-anticipated appointment. The nurse at reception took my letter – and told me that it wasn’t a catheter clinic but a flow clinic so all that would be happening today was the repetition of a test done several times before. I burst into tears, not quiet tears but noisy floods as the pressure of months and months of disrupted sleep took its toll. I’d come expecting to take a step forward in the plan and when this seemed unlikely, a wave of desperation and disappointment engulfed me.
The nurse quickly ushered me into a side room, we talked some more, I calmed down a little, and then I did the flow test. Initially the nurse seemed sceptical about my ability to self-catheterise, concerned that my tics would make this impossible, but after a discussion with the consultant it was once again agreed that I should give it a try. Both the nurse and the consultant reassured me that they wouldn’t send me away without any help.
The big question was whether I’d be able to manage the catheter myself, whether I’d be able to do it with the help of my support worker Debbie, or whether I’d need her to do it for me.
The nurse introduced me to the kit I’d be using which, much to my amusement, is called ‘Speedi Cath’. We talked through what needed to happen and Debbie and I agreed who’d do which bit, and then with the nurse’s supervision we gave it a go.
It took a while for us to get the hang of it and find the right hole, but after a few goes it was in and the Speedi Cath bag slowly filled with wee. The nurse was really pleased with how well we’d done and seemed happy that we could manage this together. She went from thinking I wouldn’t be able to do it at all to suggesting I should do it when I was going to be out and about, or before going to theatre shows. She sent us away with a load of kit and an agreement to check in, in a week, to see how I’m getting on.
Despite the upsetting start I left the appointment feeling more hopeful, so many thanks to the nurse and consultant for responding to my distress with kindness and support.
It must be easy for medical professionals to forget that what might be a routine clinic for them may well be something a patient has been waiting months and months for, and on which a lot of hope is pinned.
Debbie and I have just used one of my SpeediCaths to do a bedtime empty, and I’m proud to say we achieved it at our first attempt.
I’m now going to settle down for what I hope will be a much less disturbed night. But not before my tics have a few last words for the commode.
“Don’t worry commode, you’ll get a redundancy package.”
“Don’t worry commode, you can always be a deckchair.”
“Commode, it’s not all over until SpeediCath sings.”