D is for DISASTER!
All I can say is God love Jack, he is so squeamish but really came through for me this morning.
I’ve had many a catheter fall out, balloon burst or tube block but today’s timing was disastrous after a week of phone calls to various members of my urology team at the QE after my next catheter change had been cancelled due to Covid-19. Ordinarily, district nurses are first on the scene with pain relief and a green light to make my way to A and E. Once there, we have a long wait while my bladder fills, the spasms worsen and the urologists are called to try and make space in theatre for me.
We’ve had such a good run with my catheter changes of late; my Aunty Sharon and my urology consultant have worked on a bespoke plan for me to come in as a day patient, receive a cocktail of medication plus local anaesthetic (with a puff or two of gas and air) and have my changes done there and then - out in the same day! After nearing 100 general anaesthetics (a large amount of these used for catheter changes) the new plan really has been a breakthrough for me.
If my changes aren’t performed every 6-8 weeks we run into serious bother - life threatening bother. The truth is, without my catheter changes, I wouldn’t be here!
Due to Covid-19, NHS secretaries across the UK have had to cancel non-urgent appointments. My catheter change fell into this bracket not because of its non-urgency but because I have it done in a day clinic where usually non-urgent matters are dealt with so, unfortunately, I slipped through the net. My consultants secretary has been in touch last week and very apologetically told me that this coming week she would have a date ready for me to come in to a ‘cold’ non-corona area of the hospital where I could meet with my consultant who will then change my catheter.
My catheter is due a change this week. This morning, it decided to make an early exit and fell out while I was in the shower. Due to my current district nurse team offering no ‘on site, at home’ support (you guessed it, Covid-19 again), I was left with two options, dose up and head to A and E (a no - go in my opinion, given the current Corona climate) or dose up and try and fit a child size catheter in at home.
1 hour, 2 tramadol, diazepam and some cyclazine later, we managed to fit a small size 10 catheter in and secure it (for now)! To say I am relieved is an understatement! I know now that this week will bring about an unprecedented amount of calls and emails to the hospital to get myself in to have the correct size catheter fitted but I know that I have managed to bide myself another few days without retention as I am managing to drain slowly (due to the catheter being so small) but surely - it’s the small victories hey guys!
D is for disaster - chronic illness is permanent and does not take a break from interrupting your life, not even on easter sunday, not even to make way for a pandemic.
Written 12th April 2020