Mother, wife, friend, daughter, sister. Love the sea, books, sport & fun. I’m also an incurable thyroid cancer badass & am prone to being sweary.
bang slap in the middle
Joined July 2009
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Seem to have massively dodged a bullet & am being allowed home today. Still along way to go in terms of getting my kidneys up & running & persuading various oncologists not to give up on me. But I survived. I cannot thank you enough for all the lovely messages, prayers and rabbit
Things are a bit shite right now. In hospital with sepsis. Kidneys aren’t working properly either. Unlikely to be able to restart treatment & accessing trials will be hard given kidney issues. It’s looking like the end of the road unless someone can pull a rabbit out of a hat. 💔
Update on bathroom gate: not 15 minutes after my tweet (in which I tagged Casa Del Cov) Matron arrives at the foot of my bed. Thought I was in for a royal bollocking. Instead I got profuse apologies. And then all hell broke lose. Staff everywhere moving everything, tidying shit
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up. She actually said you cannot treat patient bathrooms like a storeroom. You have to check the bathrooms, you’re expected to pick stuff up. She was quite Mrs Trunchbullesque. I was quite pleased with myself until Wingman pointed out id just pissed off everyone in a 2 mile
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Doesn’t look like I’ll be restarting treatment anytime soon. Kidney biopsy tomorrow to see what’s causing issues. Working assumption is nephrotic syndrome specifically minimal change disease. Treatment involves 6 weeks of steriods. I can’t be off treatment that long. I’m utterly
Remember this? Well just been asked if I’m showering today. I said I’d like to but where. In the toilet says the HCA. I say, have you been in there? She says just move all the stuff across. Me. Where to? She says just the other side of the room. So they’re happy for an immuno
compromised patient who is currently unsteady on her feet to moving dirty towels, sick bowls (not sure of status) used gowns as well as shifting equipment. I’m going to say, this wouldn’t pass any risk assessment. This trust/ward is very clearly struggling. @nhsuhcw
The showering arrangements. Trip hazards a plenty, dirty used towels, soggy vomit bowel. I haven’t seen a cleaner all day now I think about it. It was the HCAs & nurses clearing up lunch. No one changing or making beds. Is this unique to Casa Del Cov or is this a wider problem?
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Absolutely seething. Am in hospital (suspected PE became a chest infection but that’s by the by). Healthcare assistant has spent the entire shift drinking tea, looking at her phone & chatting about how shit bank staff are. When a patient does approach her (she never goes to
check on them. God forbid) she looks them up & down, determines they’re a piece of shit & speaks to them accordingly. She saw & heard me sobbing. Been sat in a chair now for 17 hours & no sign of a bed. My back is excruciating. She glared at me & muttered something disparaging
Just full on stacked it cleaning the house, tripping over a box which I left on the floor. Think Ive managed not to break anything but the snotty tears of fury, hurt pride, fear & yes, some pain were plentiful & loud. Like a toddlers. I do like to stress test my body. What a knob
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Highlights from the chemo suite;
1) it smells like rotten eggs which is nice given most patients in here prob feel nauseous
2) man watching overtly racist material on full volume on his phone. Won’t turn it off. Security inbound
3) am the youngest person here. Again.
Been denied travel insurance as my cancer has progressed. They need to see a “period of stability” before they will consider insuring me. FOR FUCKSAKE-its not too much to ask to book a holiday with my family like a normal person, is it? Cancer = gift that keeps on giving.
7 hours sleep in the bag with no pain, minimal nightsweats, no gastric issues. Got some topical pain patches which seem to be helping the bone pain in my hips. I feel like a new woman! Sleep is an underrated, yet crucial part in helping cancer patients deal with their illness.