Went in on the 7th September let out for a day around the 16th then back in til 26th - I did stick my head round this new door a couple of days ago but it seemed too much like hard work - someone had rearranged the furniture...sorry.
Hope everyone's alright and heading in the right direction. I didn't have internet in hospital so no blog so not sure where to start, really :) In no particular order - met lovely What Now lady on my ward which was pretty cool I thought; Hickman line #1 inserted (not too bad, local anaesthetic), first round IVE chemo started and almost completed when line started leaking over my new pj top- finished IVE with cannula as line out of commission; visit from 'plastics' doc to check no tissue damage from leakage. X-ray showed line way out of position, hence the leak so Hickman Line #2 inserted on opposite side. Surgeon not impressed with positioning of first one he tells me. Line #2 leaks all over another new pj top that night swollen neck around the site where the liquid had collected. Fortunately I realised almost imediately (stinging/burning/wet sensation) and 'sprinted' down the corridor with my drip to get someone to switch it off. Repeat x-ray/visit from 'plastics' doc - we think we'vw got away with it. Again. Next day go for another lineogram where they inject dye to see where it goes! Not impressed with their attitude (this never happens was about all they could say not "This never happens but we're going to find out why it has and fix it" which would have been easier on the ear. Turns out they'd sewed through one of the tubes fixing it into place! Oh and I was allergic to the dressings...
So for a while I looked like the Bride of Frankenstein with plasters, red, blistered skin, stitches etc all over my neck/chest :)
I've spent too much time thinking about this - I'll write it out as fully as I can somewhere else as I'm (understandably) not 100% convinced by what they've left me with. My consultant is loathe to send me for yet another line so fingers crossed that the little tube that's left will do the job (I know, he wouldn't suggest it if he didn't think it would work, but...)
Main thing is we got the drugs in so they let me home for a day's rest before my blood dropped. Car broke down about half a mile up the road so waited for the breakdown guy - got home in the end. I found this funny. I'm sure bumpy ride got my system 'moving' tho so Hurrah! Some ridiculously expensive, tiny valve was to blame by the way...
Back in to isolation room because blood crashed right on cue - neutropenic so wide open to infection. In my own bubble really - music, reading etc - just waiting for blood to rise. Got all the way to day 13 (mwahaha) and toothache started - worse than any cancer pain so far. Sh*t. Face swollen like a potato on one side. Codeine sorted pain. It didn't feel like an abscess because I could still brush my teeth without hitting the roof. Maybe an opportunistic infection cos of neutropenia - whatever the cause I was on about 6 different antibiotic / antifungals and am off to get a tooth extracted tomorrow (they mentioned another 2 which might allow a similar thing to happen in future! Fact is, if they're going to get in the way of treatment whip em out but bl**dy ell I wasn't expecting that. Woke up at 4am with stabbing pain at top of shoulder and lesser pain further down side - couldn't move in any direction at first - rang doctor for advice who thought it might be to do with meds but should be fine in 48 hours! Managed to manoeuvre myself with help and got another couple of hours sleep - it's better this morning but feeling achey/bruised rather than stabbing. Doc thought it might be pleurisy. Ho, and if you will, Hum.
Also got to go in for virology tests on blood (prior to stem cell harvest) and get the last of Hickman stitches out tomorrow. I think I'll be allowed to recover at home before going back in for round 2 next Tuesday... here's hoping it's boring and straightforward.
Haha, here's me 'just dropping in to say hello'...
love to all
kx
ps. can't see a preview button so apologies for any mistakes or nonsense
