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Overactive brain stopping me sleep - PET scan.

239 replies

ThemysteriousH · 14/02/2024 03:05

I’ve been really poorly recently. Whole load of different problems - too long to list - under various specialties, had different biopsies, scans, I’ve lost count.

I posted on here a while back about having this weird niggly feeling something was wrong and I thought I was going mad, but I was told to mention it.

Today I had an appointment and told various things were abnormal and I’m having a PET scan. Being a HCP I know exactly what this means (looks for malignancy’s)

I feel strangely calm about it, I’m not going to think of the what if’s and different scenarios, I’m just grateful I’m being looked after. What will be will be, but at the same time I’m only 32 and a lone parent.

The only emotion apart from the calmness I feel, is disappointment at some of the medics I’ve seen the last few months who dismissed me or said I needed to lose weight.
I’m lucky I’ve an amazing GP who’s really been a massive advocate & reassured me it’s not “in my head”.

Just wanted somewhere to write it out. I don’t want to bore anyone IRL with it as I know everyone has their problems.
My brains in overdrive, I’m so tired but can’t sleep.

OP posts:
ThemysteriousH · 30/04/2024 22:46

Thank you so much @NeonHalo & @Zippedydoodahday that’s really kind. Bit of an essay coming up sorry.

Bit of an eventual day, more answers than questions again.
Had transport pick me up 7am, since being unwell I have these random spells where I get sweaty and really sick - I think it’s related to the cardiac problems.
So I’m stuck the side of the dual carriageway vomiting, the driver is refusing to take me and getting ambulance transport (he was a car) to take me so I stood there being sick/waiting.
It was windy so the sick ended up on my hair/clothes, it was awful 😢

Finally get there and turns out it’s changed to a virtual. The consultant wasn’t on site, I took the call there in a corridor with no signal and kept cutting out.
I asked about bone marrow instantly, she said it’s abnormal but not qualified to interpret it so didn’t want to give the wrong answers. It kept cutting out but there was mention it’s been sent for genetic tests and has outstanding results left and I need more tests.

Autoimmune wise I’ve still to keep off some of my medications (I was having a once weekly chemo injection to dampen my immune system that was stopped when I was an inpatient),
As she wants my heart under control. Still trial and error with the medications and the cardiac monitor tests keep coming back abnormal.
Something about urate levels, liver (I don’t drink), clotting screen abnormalities but it kept cutting out so never properly heard.

I thought I’d have had a phone call back a while later once I was home but I never.
Oncology day unit can’t bring appt forward because not all results from bone marrow back & consultant wants to see me.
Still dealing with what ifs so not going to think about it until there is certainties.

I then had to wait for ambulance transport rather than the car transport back because of being poorly - felt so guilty 😢

OP posts:
Zippedydoodahday · 30/04/2024 23:13

Oh my goodness. You poor thing. I hope you're feeling better for getting freshened up now you're home at least. Given the mix up, and that you couldn't hear what was being said, I'd suggest getting on the PALS in the morning to ask for a followup phonecall with the consultant to allow you to better understand what was being said.

Please don't feel guilty, it's not your fault it was changed, and you've had a horrid day. Hope you're tucked up in bed after such a hard day.

ThemysteriousH · 01/05/2024 08:49

I have emailed the secretary who’s normally on the ball so I’m hoping to get a reply, I’m gutted I didn’t get the appointment as such. She is a excellent consultant so I think her secretary should arrange something but I’ll contact PALS if not.

I opened a case with PALS back in February regarding my endocrine surgery being cancelled what would now be 4 times and now completely cancelled. They’re meant to reply within 30 days with a resolution but still waiting. They’ve said it’s complex when I’ve complained that the complaint hasn’t been sorted 🤣

I had quite a lot of sleep once home & last night, exhausted now too. DS has a birthday party on the weekend so hoping to get well for that.
I don’t normally do parties as I tend to spoil them throughout the year, but they’ve been amazing the past few months.

Thank you for your kindness. It feels such a lonely time and I really appreciate yours and everyone’s responses 💜

OP posts:
Grenola · 01/05/2024 14:42

My my gosh, I cannot believe your back luck with appointments. The amount of errors u have been subjected to is crazy.
The upheaval of going to jus sick in the corridor in the phone. Cannot imagine how stressful that was..... And to have ooen ended news and now answers. Genetic results are notoriously long too.
I guess at this point no news is good news. But no plan is unsettling for u.

I bet being off the immunisupprssant is actually making u feel rotten isn't it.

I hope that someone can lead in your care better an bring all the soecialists together because it seems there are multi organ issues but may be a systemic cause. I just good they aren't missing anything while they piece the jigsaw together.

I'm sure as a nurse with lab experiende that u have a good understanding of what be going on. Ur u ever want to discuss a on a more medical/scientific level don't good back or message me.

Hope u continue to sleep and rest and nourish your body x

BetsyBobbin · 01/05/2024 20:39

I'm so sorry to hear about the appointment. You have nothing to apologise for

You really need to get on PALS case which I know full well it's difficult atm. Not only you need energy to get on with your life but also to battle all the incompetence. I'm so sorry, wish I could do something on your behalf

ThemysteriousH · 05/05/2024 00:24

Grenola · 01/05/2024 14:42

My my gosh, I cannot believe your back luck with appointments. The amount of errors u have been subjected to is crazy.
The upheaval of going to jus sick in the corridor in the phone. Cannot imagine how stressful that was..... And to have ooen ended news and now answers. Genetic results are notoriously long too.
I guess at this point no news is good news. But no plan is unsettling for u.

I bet being off the immunisupprssant is actually making u feel rotten isn't it.

I hope that someone can lead in your care better an bring all the soecialists together because it seems there are multi organ issues but may be a systemic cause. I just good they aren't missing anything while they piece the jigsaw together.

I'm sure as a nurse with lab experiende that u have a good understanding of what be going on. Ur u ever want to discuss a on a more medical/scientific level don't good back or message me.

Hope u continue to sleep and rest and nourish your body x

It’s just been bad things after bad! Last weeks bloods were bad too.
Because of my heart rate too they don’t want to put me back on DMARDS or my hydroxy. My LFTs are deranged too and I don’t drink.
I have always had raised ALP but now I have raised AST.

I may take you up on the offer of the message. I will see how this weeks appt goes 🤞 x

OP posts:
ThemysteriousH · 05/05/2024 00:30

BetsyBobbin · 01/05/2024 20:39

I'm so sorry to hear about the appointment. You have nothing to apologise for

You really need to get on PALS case which I know full well it's difficult atm. Not only you need energy to get on with your life but also to battle all the incompetence. I'm so sorry, wish I could do something on your behalf

Just listening and being here throughout has meant the world to me honestly.

I’ve not had a chance to think of my health really, had horrible news Wednesday that one of my best friends had died. Unknown cause, suspicious death found publicly 😔
We both had our DC’s one day apart with each pregnancy. Which is mad!
She missed her sons.
I have just been in a world of grief going through the motions and taking painkillers when my pains been bad.
Haven't really eaten, felt it today with dizziness etc so had a milkshake.

Sorry to come here negative again.

Have a lovely bank holiday :)

OP posts:
Grenola · 05/05/2024 07:52

@ThemysteriousH its just so much isnt it to get your head around and peice together.

sending you a virtual hug and here if u need it x

Grenola · 05/05/2024 07:53

Also deeply sorry you have lost your best friend xxx

ThemysteriousH · 07/05/2024 23:29

@Grenola thank you so much, I’ve just been in a state of shock and grief. I didn’t want to go to my appointment today.

Best news for bad news - So I had my bone marrow results, they showed cancer cells/and abnormalities within the bone marrow. I’ll be honest it was a lot of information. The lovely oncology nurse I’ve had throughout, saw I didn’t understand & she took me to another room and she explained it all.

Its a newer, rare, cancer and my samples need further investigation to see what treatment targets it but it won’t be anything invasive.
These results can take a further 6 weeks!
In the meanwhile I’ve got to have 2 infusions, had a blood transfusion today.
It’s something to live with and not to be scared of. I asked her would I die basically and she said no.
She said although it’s rare it’s not aggressive and a “good” cancer to have. Treatment can be as simple as tablets, chemo injection weekly & blood count correction treatment when needed.
ObvIously I know things can change but I actually feel really positive. I had the more waiting but I’ve an answer.
I understand it’s for my safety and to get the right targeted treatment.

I have multiple chronic conditions so it’s just something to add to the list & I am so lucky really this has been picked up.
I’m unsure of the 2 infusions I need in the next few weeks it’s gone out my head, was a lot of information, but they are going to send me the summary letter to bring along to appointments.

Thank you all so much for being on this journey with me, it’s been a long, scary one & I don’t know how to feel?
I feel a fraud and like it’s not a “real cancer” because I don’t need aggressive chemo & radiotherapy (yet at least). 🤍

OP posts:
Grenola · 08/05/2024 14:45

Listen, u are NO fraud!!
I am sorry u got this news. It is cancer, and it needs grieving and all the feels over processing it. How shattering for u.
mainly because it’s just something else to add to the whole health picture for u.
Will they do stem cell or similar? Or IVIG I think it’s called. U may need a port for good access if its regular.

i am glad u now have a diagnosis at least and a treatment plan in development.

I hope they consider your other health conditions when putting care plan together and also hope they stop dicking u about eith app’s.

sending u love, if the sun I shining where u love get 10 mins in the sun eith your eyes closed and deep breaths

xx

ThemysteriousH · 08/05/2024 22:57

I guess I feel a fraud because there’s so many people battling cancer as a death sentence and going though such invasive treatment whilst for now I should be okay.

I think they said stem cell, I’ve asked for the summary to be sent to me & I’ve an appointment with my endocrine surgeon Friday.

Ive had central lines when I’ve had lupus flares or had community treatment (because I’m an awful patient 😅) but yes it could be a port.

Had a phone call asking me to come in Sunday for a CT pelvis, it’s at a hospital away as that was the soonest a lot, luckily my dad is taking me 😌

Thank you for your support as always @Grenola, I hope you’re ok xx

OP posts:
Grenola · 09/05/2024 09:39

Morning :-)

ok sounds like they are ‘on it’.
i know travelling and apps are draining but it will ease your mind to know they are getting a systematic picture of inside your body. I can imagine your mind is going away with itself as to any kind of possibilities.

chronic illness is hurrendous to manage and it really takes its toll, and yes cancer patients finding for survival are obviously getting it worst than most. But getting health stability isn’t a competition and what u have and go thru on a daily basis is tough…having the resilience u need and dealing with constant pain is a battle of the mind and no small feat. Add in this acute illness threat u face which may end up chronic, being a lone parent and loosing your friend, every single one of your feelings are valid and feel then all. Be easy on yourself. I've heard those words for years, 'be kind to yourself' and I've kind of said yeah ok. But it's taken me so many years to really understand what that means and how to actually do it.

I've always been preoccupied by how other live, and if they are happy and managing ect..... But there is no normal or benchmark ect.

Just do u, however that is and always reach out to those u trust. Even connections online ate totally valid and meaningful.

I am fine, the sun is fueling me and I'm getting they a huge list of annoying diy things! It's time and money isn't it. But seeing the boys play out give me job. I've testers in this house all winter and it's doing me good being out xx

BetsyBobbin · 10/05/2024 10:12

Hi OP,

Sorry I've only just seen this.

I can't add anything to what Grenola said but one thing you need to work on is your self esteem and your sense of worth. Please, stop thinking you're a fraud just because your cancer is not "as bad" as some others. It's bad for you and that is the bottom line.

I urge you to start working on yourself, how you think of yourself, your self esteem and sense of worth. Please look for some free resources on the net, search free therapy, but please do something. I can only speak from my own experience but when you see yourself like that is often the result of trauma and abuse. Speak to your GP, please ask for help. You're never a fraud or less deserving than anyone else. ❤️

ThemysteriousH · 15/05/2024 03:11

Hi @BetsyBobbin,
@Grenola

Sorry I’m useless at replying, I just hide away and ignore my phone but this is a space I can talk and that’s thanks to your kindness 🫶🏼

So I’m a bit baffled - work are giving me the silent treatment. I couldn’t make the meeting and emailed, text my boss, nothing, radio silence. Messages are in the group chat from management so I know they’re about.
I will send another email. It’s making me really worry that they’re trying to get rid of me.
I have said I’ll go back on shortened/phased return.

Had some blood & platelets today.
Endocrine surgeon appt went terrible. I’ve cried since when I went Friday. My dad is coming to appointments, he’s refusing to operate on my endocrine tumour even though it’s benign it’s massively impacting my life with mood/memory/fatigue & I’m hypercalcimic again which it can cause.
He said whilst I’m under heamotology oncology it’ll never be done - knowing I’ll always be under them.
The letter he wrote to my consultant said I was “angry, bitter, anxious, having no understanding, desperate for surgical intervention”. Even my heam/oncol consultant was shocked today as he’d actually gave the go ahead this entire time!

PALS got back to me saying they’ve seen I had an appointment and I was disappointed by the news and there is nothing they will do.

Hope you’re both ok and enjoying the lovely weather?
Both my DC have been playing in the garden it’s been lovely 🥰

I have had a reaction today to what I’ve had, I’ve come out in blotches all over my arm (cannula was in hand), I’ll see tomorrow what it’s like, I’ve taken an antihistamine. I don’t want to report it and then have it stop any treatment I need.

Thank you as always 🫶🏼

OP posts:
PalomaJaneintheDales · 15/05/2024 04:11

Hi OP,
I just came across your thread and read it all. Just wanted to say that you sound like such a lovely person. I hope your health gets sorted out asap and that you get fair treatment from work, and I'm praying for you and your children. 🌻

Grenola · 15/05/2024 08:20

𝙼𝚘𝚛𝚗𝚒𝚗𝚐...

𝚂𝚑𝚒𝚝 𝚜𝚘𝚛𝚛𝚢 𝚞 𝚑𝚊𝚍 𝚝𝚑𝚎 𝚛𝚎𝚊𝚌𝚝𝚒𝚘𝚗.... 𝙳𝚎𝚏𝚒𝚗𝚒𝚝𝚎𝚕𝚢 𝚝𝚎𝚕𝚕 𝚝𝚑𝚎𝚖 𝚝𝚑𝚘. 𝙶𝚒𝚟𝚎𝚜 𝚊𝚛𝚎 𝚑𝚊𝚛𝚖𝚕𝚎𝚜 𝚋𝚞𝚝 𝚒𝚝 𝚖𝚊𝚢 𝚋𝚎 𝚝𝚑𝚎 𝚜𝚝𝚊𝚛𝚝 𝚒𝚏 𝚊𝚗 𝚊𝚗𝚒𝚙𝚑𝚒𝚕𝚊𝚡𝚒𝚜 𝚊𝚗𝚍 𝚝𝚑𝚎𝚢 𝚖𝚊𝚢 𝚓𝚞𝚜𝚝 𝚐𝚘 𝚊𝚑𝚎𝚊𝚍 𝚋𝚞𝚝 𝚊𝚕𝚜𝚘 𝚛𝚞𝚗 𝚑𝚒𝚐𝚑𝚎𝚛 𝚜𝚝𝚎𝚗𝚐𝚝𝚑 𝚊𝚗𝚝𝚒 𝚑𝚒𝚜𝚝𝚊𝚖𝚒𝚗𝚎.

𝚈𝚘𝚞𝚛 𝚎𝚋𝚍𝚘𝚌𝚛𝚒𝚗𝚎 𝙳𝚛 𝚜𝚘𝚞𝚗𝚍𝚜 𝚊 𝚋𝚊𝚐 𝚒𝚏 𝚋𝚊𝚕𝚕𝚜 𝚒𝚏 𝚞 𝚊𝚜𝚔 𝚖𝚎. 𝚂𝚒𝚗𝚌𝚎 𝚠𝚑𝚎𝚗 𝚒𝚜 '𝚋𝚎𝚗𝚒𝚐𝚗' 𝚊 𝚝𝚑𝚛𝚎𝚜𝚑𝚘𝚕𝚍 𝚏𝚘𝚛 𝚜𝚞𝚛𝚐𝚒𝚌𝚊𝚕 𝚒𝚗𝚝𝚎𝚛𝚟𝚎𝚗𝚝𝚒𝚘𝚗? 𝙸𝚜 𝚒𝚝 𝚒𝚗 𝚊 𝚍𝚊𝚗𝚐𝚎𝚛𝚘𝚞𝚜 𝚙𝚕𝚊𝚌𝚎 𝚝𝚑𝚊𝚝 𝚖𝚊𝚔𝚎 𝚜𝚞𝚛𝚐𝚒𝚌𝚊𝚕 𝚒𝚗𝚝𝚎𝚛𝚟𝚎𝚗𝚝𝚒𝚘𝚗 𝚍𝚊𝚗𝚐𝚎𝚛𝚘𝚞𝚜? 𝙸𝚏 𝚗𝚘𝚝, 𝚊𝚗𝚍 𝚝𝚑𝚎𝚛𝚎 𝚒𝚜 𝚜 𝚌𝚕𝚒𝚗𝚒𝚌𝚊𝚕 𝚗𝚎𝚎𝚍 𝚏𝚘𝚛 𝚒𝚝 𝚛𝚎𝚖𝚘𝚟𝚊𝚕, 𝚠𝚑𝚒𝚌𝚑 𝚝𝚑𝚎𝚛 𝚒𝚜 𝚝𝚑𝚎𝚗 𝚓𝚞𝚜𝚝 𝚝𝚊𝚔𝚎 𝚝𝚑𝚎 𝚋𝚞𝚐𝚐𝚎𝚛 𝚘𝚞𝚝! 𝙰𝚝 𝚝𝚑𝚒𝚜 𝚙𝚘𝚒𝚗𝚝, 𝙸 𝚠𝚘𝚞𝚕𝚍 𝚋𝚎 𝚌𝚘𝚗𝚝𝚊𝚌𝚝𝚒𝚗𝚐 𝚝𝚑𝚎 𝚕𝚘𝚌𝚊𝚕 𝙲𝙲𝙶 𝚘𝚛 𝚎𝚚𝚞𝚒𝚟𝚎𝚔𝚜𝚗𝚝 𝚘𝚛 𝙽𝙷𝚂 𝙴𝚗𝚐𝚕𝚊𝚗𝚍 𝚊𝚜𝚔𝚒𝚗𝚐 𝚠𝚑𝚊𝚝 𝚞𝚛 𝚘𝚙𝚝𝚒𝚘𝚗𝚜 𝚊𝚛𝚎 𝚏𝚘𝚛 𝚊 𝚍𝚒𝚏𝚏 𝚌𝚘𝚗𝚜𝚞𝚔𝚝𝚊𝚋𝚝? 𝚆𝚛𝚒𝚝𝚎 𝚝𝚘 𝚊 𝚏𝚎𝚠 𝚘𝚝𝚑𝚎𝚛 𝚘𝚗𝚎𝚜? 𝙳𝚎𝚝𝚊𝚒𝚕𝚒𝚗𝚐 𝚝𝚑𝚎 𝚊𝚙𝚙𝚛𝚘𝚟𝚊𝚕 𝚘𝚏 𝚘𝚗𝚌 𝚊𝚗𝚍 𝚑𝚎𝚊𝚖 𝚝𝚎𝚊𝚖𝚜 𝚎𝚌𝚝. 𝚄 𝚗𝚎𝚎𝚍 𝚝𝚘 𝚠𝚑𝚊𝚝 𝚞 𝚌𝚊𝚗 𝚝𝚘 𝚖𝚊𝚒𝚗𝚝𝚊𝚒𝚗 𝚊 𝚖𝚞𝚌𝚑 𝚑𝚎𝚊𝚔𝚛𝚑 𝚊 𝚙𝚘𝚜𝚜𝚒𝚋𝚕𝚎 𝚏𝚘𝚛 𝚜𝚘𝚖𝚎 𝚠𝚎𝚕𝚕 𝚋𝚎𝚒𝚗𝚐.

𝙷𝚘𝚠 𝚑𝚘𝚛𝚛𝚒𝚋𝚕𝚎.

𝙸𝚗 𝚝𝚎𝚛𝚖𝚜 𝚠𝚘𝚛𝚔, 𝚞 𝚑𝚊𝚟𝚎 𝚜𝚑𝚘𝚠𝚗 𝚠𝚒𝚕𝚕𝚒𝚗𝚐, 𝚞 𝚑𝚊𝚟𝚎 𝚌𝚘𝚖𝚖𝚞𝚗𝚒𝚌𝚊𝚝𝚎𝚍, 𝚊𝚐𝚛𝚎𝚎𝚍 𝚊 𝚙𝚑𝚊𝚜𝚎𝚍 𝚛𝚎𝚝𝚞𝚛𝚗 𝚙𝚕𝚊𝚗. 𝙽𝚘𝚝 𝚜𝚞𝚛 𝚝𝚑𝚎𝚢 𝚌𝚊𝚗 𝚐𝚎𝚝 𝚛𝚒𝚍 𝚒𝚏 𝚞. 𝙹𝚞𝚜𝚝 𝚔𝚎𝚎𝚙 𝚌𝚑𝚊𝚜𝚒𝚗𝚐 𝚝𝚑𝚎𝚖 𝚊 𝚒𝚝'𝚜 𝚎𝚟𝚒𝚍𝚎𝚗𝚌𝚎 𝚒𝚏 𝚢𝚘𝚞𝚛 𝚠𝚒𝚕𝚕𝚒𝚗𝚐𝚗𝚎𝚜𝚜 𝚊𝚗 𝚙𝚎𝚛𝚜𝚒𝚜𝚝𝚎𝚗𝚌𝚎.

𝙸'𝚖 𝚐𝚘𝚘𝚍 𝚝𝚑𝚊𝚗𝚔, 𝚠𝚛𝚒𝚝𝚒𝚗𝚐 𝚝𝚑𝚎 𝚖𝚘𝚜𝚝 𝚋𝚘𝚛𝚒𝚗𝚐 𝚊𝚜𝚜𝚞𝚋𝚐𝚖𝚎𝚗 𝚒𝚗 𝚚𝚞𝚊𝚕𝚒𝚝𝚢 𝚒𝚖𝚙𝚛𝚎𝚟𝚎𝚖𝚎𝚗𝚝 𝚒𝚗 𝚝𝚑𝚎 𝙽𝙷𝚂.... 𝙼𝚊𝚢𝚋𝚎 𝙸 𝚜𝚑𝚘𝚞𝚕𝚍 𝚞𝚜𝚎 𝚞 𝚊𝚜 𝙲𝚊𝚜𝚎 𝚜𝚝𝚞𝚍𝚢!?

𝙱𝚛𝚒𝚗𝚐 𝚋𝚊𝚌𝚔 𝚝𝚑𝚎 𝚜𝚞𝚗𝚜𝚑𝚒𝚗𝚎 𝚙𝚕𝚜..... 𝙻𝚒𝚏𝚎 𝚏𝚎𝚕𝚝 𝚋𝚎𝚝𝚝𝚎𝚛 𝚊𝚗𝚍 𝚎𝚊𝚜𝚒𝚎𝚛 𝚠𝚒𝚝𝚑 𝚝𝚑𝚎 𝚜𝚞𝚗.

𝙰𝚛𝚎 𝚞 𝚋𝚊𝚌𝚔 𝚏𝚘𝚛 𝚒𝚗𝚏𝚞𝚜𝚒𝚘𝚗 𝚝𝚘𝚍𝚊𝚢?
𝚇

ThemysteriousH · 17/05/2024 09:43

PalomaJaneintheDales · 15/05/2024 04:11

Hi OP,
I just came across your thread and read it all. Just wanted to say that you sound like such a lovely person. I hope your health gets sorted out asap and that you get fair treatment from work, and I'm praying for you and your children. 🌻

Hi!
That is so so lovely of you to say. I think I’m hypersensitive as I’ve read your lovely comment and I’m here crying (happy tears!), so kind of you.

Thank you for the prayers, I need as many as I can get 🙏 I do feel blessed & grateful for life.
Grabbing any moment I feel okay to make memories with my sons 🥰

Thank you again 🫶🏼

OP posts:
ThemysteriousH · 17/05/2024 09:52

Grenola · 15/05/2024 08:20

𝙼𝚘𝚛𝚗𝚒𝚗𝚐...

𝚂𝚑𝚒𝚝 𝚜𝚘𝚛𝚛𝚢 𝚞 𝚑𝚊𝚍 𝚝𝚑𝚎 𝚛𝚎𝚊𝚌𝚝𝚒𝚘𝚗.... 𝙳𝚎𝚏𝚒𝚗𝚒𝚝𝚎𝚕𝚢 𝚝𝚎𝚕𝚕 𝚝𝚑𝚎𝚖 𝚝𝚑𝚘. 𝙶𝚒𝚟𝚎𝚜 𝚊𝚛𝚎 𝚑𝚊𝚛𝚖𝚕𝚎𝚜 𝚋𝚞𝚝 𝚒𝚝 𝚖𝚊𝚢 𝚋𝚎 𝚝𝚑𝚎 𝚜𝚝𝚊𝚛𝚝 𝚒𝚏 𝚊𝚗 𝚊𝚗𝚒𝚙𝚑𝚒𝚕𝚊𝚡𝚒𝚜 𝚊𝚗𝚍 𝚝𝚑𝚎𝚢 𝚖𝚊𝚢 𝚓𝚞𝚜𝚝 𝚐𝚘 𝚊𝚑𝚎𝚊𝚍 𝚋𝚞𝚝 𝚊𝚕𝚜𝚘 𝚛𝚞𝚗 𝚑𝚒𝚐𝚑𝚎𝚛 𝚜𝚝𝚎𝚗𝚐𝚝𝚑 𝚊𝚗𝚝𝚒 𝚑𝚒𝚜𝚝𝚊𝚖𝚒𝚗𝚎.

𝚈𝚘𝚞𝚛 𝚎𝚋𝚍𝚘𝚌𝚛𝚒𝚗𝚎 𝙳𝚛 𝚜𝚘𝚞𝚗𝚍𝚜 𝚊 𝚋𝚊𝚐 𝚒𝚏 𝚋𝚊𝚕𝚕𝚜 𝚒𝚏 𝚞 𝚊𝚜𝚔 𝚖𝚎. 𝚂𝚒𝚗𝚌𝚎 𝚠𝚑𝚎𝚗 𝚒𝚜 '𝚋𝚎𝚗𝚒𝚐𝚗' 𝚊 𝚝𝚑𝚛𝚎𝚜𝚑𝚘𝚕𝚍 𝚏𝚘𝚛 𝚜𝚞𝚛𝚐𝚒𝚌𝚊𝚕 𝚒𝚗𝚝𝚎𝚛𝚟𝚎𝚗𝚝𝚒𝚘𝚗? 𝙸𝚜 𝚒𝚝 𝚒𝚗 𝚊 𝚍𝚊𝚗𝚐𝚎𝚛𝚘𝚞𝚜 𝚙𝚕𝚊𝚌𝚎 𝚝𝚑𝚊𝚝 𝚖𝚊𝚔𝚎 𝚜𝚞𝚛𝚐𝚒𝚌𝚊𝚕 𝚒𝚗𝚝𝚎𝚛𝚟𝚎𝚗𝚝𝚒𝚘𝚗 𝚍𝚊𝚗𝚐𝚎𝚛𝚘𝚞𝚜? 𝙸𝚏 𝚗𝚘𝚝, 𝚊𝚗𝚍 𝚝𝚑𝚎𝚛𝚎 𝚒𝚜 𝚜 𝚌𝚕𝚒𝚗𝚒𝚌𝚊𝚕 𝚗𝚎𝚎𝚍 𝚏𝚘𝚛 𝚒𝚝 𝚛𝚎𝚖𝚘𝚟𝚊𝚕, 𝚠𝚑𝚒𝚌𝚑 𝚝𝚑𝚎𝚛 𝚒𝚜 𝚝𝚑𝚎𝚗 𝚓𝚞𝚜𝚝 𝚝𝚊𝚔𝚎 𝚝𝚑𝚎 𝚋𝚞𝚐𝚐𝚎𝚛 𝚘𝚞𝚝! 𝙰𝚝 𝚝𝚑𝚒𝚜 𝚙𝚘𝚒𝚗𝚝, 𝙸 𝚠𝚘𝚞𝚕𝚍 𝚋𝚎 𝚌𝚘𝚗𝚝𝚊𝚌𝚝𝚒𝚗𝚐 𝚝𝚑𝚎 𝚕𝚘𝚌𝚊𝚕 𝙲𝙲𝙶 𝚘𝚛 𝚎𝚚𝚞𝚒𝚟𝚎𝚔𝚜𝚗𝚝 𝚘𝚛 𝙽𝙷𝚂 𝙴𝚗𝚐𝚕𝚊𝚗𝚍 𝚊𝚜𝚔𝚒𝚗𝚐 𝚠𝚑𝚊𝚝 𝚞𝚛 𝚘𝚙𝚝𝚒𝚘𝚗𝚜 𝚊𝚛𝚎 𝚏𝚘𝚛 𝚊 𝚍𝚒𝚏𝚏 𝚌𝚘𝚗𝚜𝚞𝚔𝚝𝚊𝚋𝚝? 𝚆𝚛𝚒𝚝𝚎 𝚝𝚘 𝚊 𝚏𝚎𝚠 𝚘𝚝𝚑𝚎𝚛 𝚘𝚗𝚎𝚜? 𝙳𝚎𝚝𝚊𝚒𝚕𝚒𝚗𝚐 𝚝𝚑𝚎 𝚊𝚙𝚙𝚛𝚘𝚟𝚊𝚕 𝚘𝚏 𝚘𝚗𝚌 𝚊𝚗𝚍 𝚑𝚎𝚊𝚖 𝚝𝚎𝚊𝚖𝚜 𝚎𝚌𝚝. 𝚄 𝚗𝚎𝚎𝚍 𝚝𝚘 𝚠𝚑𝚊𝚝 𝚞 𝚌𝚊𝚗 𝚝𝚘 𝚖𝚊𝚒𝚗𝚝𝚊𝚒𝚗 𝚊 𝚖𝚞𝚌𝚑 𝚑𝚎𝚊𝚔𝚛𝚑 𝚊 𝚙𝚘𝚜𝚜𝚒𝚋𝚕𝚎 𝚏𝚘𝚛 𝚜𝚘𝚖𝚎 𝚠𝚎𝚕𝚕 𝚋𝚎𝚒𝚗𝚐.

𝙷𝚘𝚠 𝚑𝚘𝚛𝚛𝚒𝚋𝚕𝚎.

𝙸𝚗 𝚝𝚎𝚛𝚖𝚜 𝚠𝚘𝚛𝚔, 𝚞 𝚑𝚊𝚟𝚎 𝚜𝚑𝚘𝚠𝚗 𝚠𝚒𝚕𝚕𝚒𝚗𝚐, 𝚞 𝚑𝚊𝚟𝚎 𝚌𝚘𝚖𝚖𝚞𝚗𝚒𝚌𝚊𝚝𝚎𝚍, 𝚊𝚐𝚛𝚎𝚎𝚍 𝚊 𝚙𝚑𝚊𝚜𝚎𝚍 𝚛𝚎𝚝𝚞𝚛𝚗 𝚙𝚕𝚊𝚗. 𝙽𝚘𝚝 𝚜𝚞𝚛 𝚝𝚑𝚎𝚢 𝚌𝚊𝚗 𝚐𝚎𝚝 𝚛𝚒𝚍 𝚒𝚏 𝚞. 𝙹𝚞𝚜𝚝 𝚔𝚎𝚎𝚙 𝚌𝚑𝚊𝚜𝚒𝚗𝚐 𝚝𝚑𝚎𝚖 𝚊 𝚒𝚝'𝚜 𝚎𝚟𝚒𝚍𝚎𝚗𝚌𝚎 𝚒𝚏 𝚢𝚘𝚞𝚛 𝚠𝚒𝚕𝚕𝚒𝚗𝚐𝚗𝚎𝚜𝚜 𝚊𝚗 𝚙𝚎𝚛𝚜𝚒𝚜𝚝𝚎𝚗𝚌𝚎.

𝙸'𝚖 𝚐𝚘𝚘𝚍 𝚝𝚑𝚊𝚗𝚔, 𝚠𝚛𝚒𝚝𝚒𝚗𝚐 𝚝𝚑𝚎 𝚖𝚘𝚜𝚝 𝚋𝚘𝚛𝚒𝚗𝚐 𝚊𝚜𝚜𝚞𝚋𝚐𝚖𝚎𝚗 𝚒𝚗 𝚚𝚞𝚊𝚕𝚒𝚝𝚢 𝚒𝚖𝚙𝚛𝚎𝚟𝚎𝚖𝚎𝚗𝚝 𝚒𝚗 𝚝𝚑𝚎 𝙽𝙷𝚂.... 𝙼𝚊𝚢𝚋𝚎 𝙸 𝚜𝚑𝚘𝚞𝚕𝚍 𝚞𝚜𝚎 𝚞 𝚊𝚜 𝙲𝚊𝚜𝚎 𝚜𝚝𝚞𝚍𝚢!?

𝙱𝚛𝚒𝚗𝚐 𝚋𝚊𝚌𝚔 𝚝𝚑𝚎 𝚜𝚞𝚗𝚜𝚑𝚒𝚗𝚎 𝚙𝚕𝚜..... 𝙻𝚒𝚏𝚎 𝚏𝚎𝚕𝚝 𝚋𝚎𝚝𝚝𝚎𝚛 𝚊𝚗𝚍 𝚎𝚊𝚜𝚒𝚎𝚛 𝚠𝚒𝚝𝚑 𝚝𝚑𝚎 𝚜𝚞𝚗.

𝙰𝚛𝚎 𝚞 𝚋𝚊𝚌𝚔 𝚏𝚘𝚛 𝚒𝚗𝚏𝚞𝚜𝚒𝚘𝚗 𝚝𝚘𝚍𝚊𝚢?
𝚇

Morning Grenola,

Apologies I’m so slow replying atm, I seem to just be avoiding my phone. Been super tired too.

I was super naughty and haven’t told them about my hives but my GP has my on a strong dose of antihistamine because I’ve had random itching for about a year (with no rashes) so I’ve a bit of a stick here.

Endocrine surgeon has really knocked me, out of everything it seems the smallest problem but it has a big impact on me. Tbh it feels like I’ve been medically gaslit.
My calcium levels are continue to rise and I don’t want it to get to the point I need hospitalisation for being hypercalcemic.

Work - that’s a drain. I’m going back on a 22.5 hour contract and phased return in June it seems. Still on the absence/disciplinary route and want to nip it now. Also a bit of routine & distraction will be good, I like my work family (just not management 🙊).
I should be your case study 😂 I’d cause you so much work with my complexities!

Next infusion is Tuesday but bloods today because of abnormalities, Tuesday weekly they’ve got me in :) I have bloods again an hour before it.

Weather is nice here! How is it with you now?

I have my sisters wedding 2 weeks today and still no outfit!! X

OP posts:
awkwardanduncomfortable · 17/05/2024 14:21

@ThemysteriousH please tell them about the reaction - it could be from the platelets - not the platelets themselves necessarily but the solution they are in, platelet reactions can be really nasty and usually get worse each time, they will likely just premed you with hydrocortisone and piriton next time but the reactions can be horrible so I would strongly advise you let them know! Or you'll end up stuck in longer than anticipated!
People can end up needing washed platelets or HLA matched platelets so it is important to be taken seriously x

Grenola · 17/05/2024 18:11

I second @awkwardanduncomfortable pls tell them

@ThemysteriousH never apologise for slow reply….. this is your thread my love for u anytime time u need it xxx

the weather been glorious and then just suddenly clouds have gone black and it’s threatening to rain.

I’ve had a strange week…. (My rambling might distract u!) working on these assignments… and anticipating exam results for my last clinical exams and had three docs apps. I keep getting wierd facial rashes and red marks around my eyes and swelling since November. Dr finally did bloods and referred to derm who said refer to an allergists/immunolgist. So that’s all been happening. Found I have severely low b12 and folates and low basophils and eosophils which indicate I had an allergic reaction. Will see what they say!?!

I’ve finished my drafts for essay and presentation. And Monday I start a 6 week placement in intensive care. After that I qualify!!! Paediatric nurse… then my job is on a large neonatal surgical ward. That’s me!!! Hope that hasn’t bored u but mainly distracted u!!
in other news…. I’ve thrown myself into intenrtw dating… I usually hate the thought of it! But thought sod it and I’m chatting to three men and I keep getting them mixed up 😂😂😂 not made for it!

x

BetsyBobbin · 20/05/2024 11:59

Hi OP ☺️

I'm sorry I haven't replied to your latest posts but I'm having a bit of nightmareish time here myself. But nevermind me.

I second everyone's advice, please let them know about the reactions. Glad to know you'll be on a phased return but get your union rep up to date with your case because you know, HR is going HR, they're never there to defend you but the employers. I'm still here, wishing you all the best and rooting for you 💕

Grenola · 25/05/2024 18:49

Hey…. Don’t feel the pressure to reply but just know I’m thinking of u and hope u getting thru the days and juggling everything ok x

ThemysteriousH · 09/06/2024 00:52

Hey all, sorry I’ve just been an emotional mess.
Sick last week until it became blood (think it was a throat tear), stressed about work, just about everything & felt bad coming to whinge!

hope you’re okay 🫶🏼

OP posts:
Grenola · 09/06/2024 06:49

Sending love, sounds the pits and don’t ever worry about moaning ect. U got to let it out somewhere xx

up early and out ready for a long shift in PICU. X

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