We seem to have spent most of this week back and forth to the hospital for one reason or another
Monday/Day 18
Follow up meeting with Onco this afternoon to check on side effects etc. We saw her Registrar first, she was very pleasant but couldn’t really answer our questions about the “bizarre” HER2 positive results (actually she’d not even read the notes so floundered a bit). Anyway she rightly went off to get Onco to speak to us but left her computer screen on so we were able to write down the exact findings the lab had reported. It seems I have rather unusual chromosone 17 signal patterns which are difficult to interpret but the report concluded by saying there was clear evidence of amplification. We then double checked with Onco that she was satisfied with the report and that the chemotherapy et al is indeed necessary - b*gg*r it is 👹
Just a quick side note on what a small world it is (I won’t bore you with the whole story) someone I knew as a child through my Dad being a church organist, has been friends with Onco and her husband for years and played the organ at their wedding.
Tuesday/Day 19
Back to the unit for 09:00 to have a PICC line fitted. Given the amount of times a needle will need to be poked in my arm, either to give chemo or take blood, Onco recommended that I have a peripherally inserted central catheter. Finding suitable veins is always a problem plus the chemo drugs actually damage the smaller veins over time but this method means the toxins are delivered straight into a larger, more central vein and pumped round the body quicker. It all seems to make sense but nonetheless I wasn’t looking forward to the procedure which involves a thin tube (catheter) being inserted into a vein in my upper arm and then threaded through the vein to somewhere near my heart 💔
Actually stuck up on the wall in the treatment room, is a step-by-step guide to fitting a PICC line 😁
The procedure was marked on my Schedule as “senior nurse led” - no doubt a euphemism for “letting a trainee loose” so during the preliminary chat I explained what had happened with the wire insertion before the operation and the rummaging that had gone on.
After searching for ages without success, senior nurse finally found a suitable vein, except it was very close to an artery and even trainee looked scared 😱😱😱😱😱 Really glad I’d voiced my nervousness as it was quickly decided that senior nurse would actually stick the needle in and then let trainee do the rest - excellent plan.
It wasn’t painful as I’d had a local, but once again I could sense something being poked around within my arm. I didn't watch too much in case it made me feel feint so I concentrated on the Where's Wally poster stuck to the ceiling.
They say a picture speaks a thousand words so with permission from staff each time Ian has now been tasked with taking some snaps along the way as my arms aren’t long enough for selfies (no I will not be getting a selfie stick 💩)
We’ve been given all sorts of dire warnings about leakages and infections plus I’m not allowed to get it wet!
When we came out we bumped into a lady we've seen on just about every other visit and she was in for her PICC line to be fitted and wanted to know what happened. I confirmed it wasn't at all painful and told her there was a picture on the ceiling to look at. This lady is West Indian and probably mid-70s so I was somewhat amused when she immediately asked "oh good, is it a nude?"
Wednesday/Day 20
Showering involved wrapping my upper arm in cling film and to a degree it was successful (only slightly damp) but we’ve decided that with the amount of cling film I’ll get though in 15 weeks of showering (min 105 showers) I might as well buy a specially designed cover. Also I won’t have to wait for Ian to be home to wrap me up!
Back to hospital at 12:30 for the PICC line to be flushed and bloods taken, only a half hour slot but the unit was really busy so we were ages.
Thursday/Day 21
The Limbo PICC cover is a great success, fairly easy to put on and totally waterproof.
A rare day off from all things medical, except .......... I’ve been having tooth problems and because of the complications the bisphosphonates can cause have decided I better see my dentist. Also if I do have an abscess then with a low immune system, any infection could spread rapidly (not exaggerating just heeding the warnings of neutropenia sepsis we’ve been given as my next FEC is due tomorrow).
Typically Pumba was on holiday but another lovely dentist saw me and she’d been through chemo herself a couple of years ago so totally understood my concerns. Anyway, after a lot of poking and prodding, she decided there was definitely no signs of infection but probably the tooth nerve was slowly dieing off and if it started to give me too much problem she thought it could be successfully treated without suspending the bisphosphonates - obviously we’d need to get Onco’s agreement.
Much relieved I headed off to catch up with Ian and walk a golf course watching our gorgeous granddaughter play for Kent (she won her match but Kent lost overall). With my hair still coming out in clumps I have some quite bald areas at the front, so not wanting to scare anyone I kept my “Baker Boy” hat on all day which was OK but rather itchy after a few hours.
And then tomorrow (Friday) we’re back to hospital for the second FEC - really, really, hoping the side effects are the same (or better) however I am of course PFTWHFTB 🙏🏻
