Monday morning - hospital for 8am.
Straight to trolley 4 (yes trolley, not bed, they don't have beds in day surgeries or endoscopy wards) and admission process, BP, temp, calf size, noting PICC line and existing pain relief, allergy to morphine etc.
Surgeon came to see me - still struggle to understand what he's saying due to his appalling accent. After some negotiating - ie me explaining YET again that I cannot keep having an invasive, high risk of infection, general anaesthetic procedure every 6 months for the rest of my life. I will be on chemo for a minimum of 6 months - given my poor neutraphil experiences previously. My condition will not improve over the years, it will decline (if the rest of my medical team are correct that is - and for the purposes of arguing for what I want, I take their line of thinking). So instead of follow up in urine flow clinic in 3 months, after which time I'll already be experiencing difficulty weeing due to regrowth of scarring, he said 4 - 6 weeks. AND agreed I can be taught to use a catheter to keep it open once or twice a week, thereby reducing the requirement for dangerous, costly anaesthetics and antibiotics which strip my digestive system of the healthy bacteria I'm desperately trying to preserve.
En route to theatre, we passed Mr A, the man who gave me the last three years of my life. I said hello, not sure why, I just do that when I see someone I know! He actually came to find me and held my hand in both his to see why I was in. I can't believe that man. The theatre admission nurse also recognised me and that my hair has changed - Clare admitted me in March for this procedure also. She said to keep the colours, they really suit me - why is it so hard to tell people it won't be here for long, why is the thought of losing our hair such a tear jerker? Is it because it's such an obvious submission to the drugs, an outward sign to the rest of the world that "yep, I'm sick, real sick"?
Anaesthetist was brilliant - if my kids needed an general, I'd want him to do it. He did give me a mahoosive bruise in my right hand - choosing not to use the PICC line avoiding such bruising and pain, but to be fair most medics haven't got a clue what to do with them. He asked what I'd do if he gave me £50K - pay off my mortgage. £500K? Spend the rest of my life travelling and doing everything I can't do now. I mean I'd pay for someone to prepare me the best green drinks and vegan food and not worry that I can't face it and need to try something else because I can't afford to throw food away. It was touch and go with the canula and the distraction was due to the beating he had to give the veins - after a sharp intake of breath he declared it "rescued". In the ante room one of the students attempted to put a BP cuff on my PICC line - having just been told about it. I looked at him and shook my head saying "You don't really want to be doing that on a PICC line do you?". He looked sufficiently embarrassed and confused and was told - right arm then, observations please!
For the first time I didn't need the bear hugger and hair dryer and was out of recovery about an hour or so after I left the ward. My drip finished and about half a metre of the tube had my blood bleeding back into it. Eventually they capped it off. A nurse had to go downstairs to the cafe to get me suitable vegan food in the form of jacket and beans. Apparently I had to eat, drink and wee before they'd let me leave so I ate about half of it.
When the butcher posing as a plumber did this to me in March, I had a huge vaginal swab soaked with blood, passed small clots of blood when passing water and had a catheter left in. This time, not even a pad. Nothing. There was a small amount of pink and obviously pain, but that should be gone in a week.
Two lots of antibiotics in hand and sis took me home feeling kinda wobbly (lying that yes of course I have someone to be with me for 24 hours). I managed to cook, despite pain and wobbliness figuring I'd better do it before giving into the desire to sleep.
Bit of a dull day really!
Weekend Reading, 7.16.17
4 days ago