Blog 2 - Pre-op

20-06-2010


This week has been somewhat eventful. Despite being careful I must have caught an infection when I changed my leg bag Tuesday morning, and by Tuesday night I was in agony. I normally have a spare pack of antibiotics for occasions like these, but they weren't shifting it. Ordinary cystitis is only meant to sting when you pass urine, but when you have IC as well...I can't even describe it. I wouldn't wish it on anyone. I was considering calling an ambulance, but I knew from experience there is nothing they can do for the pain.They don't like to give out morphine at A&E for a disease they don't understand. So I held out till morning and a GP prescribed me some different ones, which after 24 hours started to make a difference.


I still haven't heard back from my consultant. Both my GP and myself wrote him a letter two weeks ago informing him of how quickly I've deteriorated in such a short space of time, and requesting my operation is moved forward. He has another two weeks to respond before my GP takes it further. In my meeting with him in March this year, he said that the wait for a cystectomy would be 8-12 weeks. However he put me on the non-urgent list which means I won't been seen until 6 months after the initial March 2010 appointment.


I have managed to get out and about this weekend. I made a special cushion out of a couple of pieces of foam for travelling in the car, to make it more comfortable. It takes the pressure of your crotch and stops the vibrations of the car causing so much discomfort / pain.


I've been wondering what I could do after my operation to raise money and awareness for some of the charities that have helped me out in recent years. I was thinking either a skydive - and I'm terrified of heights so it wouldn't be easy for me, or maybe kayaking around part of the coast. I'd have to get myself really fit for that...but then I have 3 unwanted stone I want to burn off! If anyone has any good ideas let me know.


I'm going to leave the blogs here for now until I find out a definite date for the surgery, as other than my deteriorating health, I nothing more to tell you that you don't already know. I will keep checking in with the other message boards though - girls you know who you are!


Speak soon,
Sicknote. X