Overactive brain stopping me sleep - PET scan.

[ThemysteriousH]

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.

Good luck with your scan tomorrow, OP. I’ve just caught up on the thread and it sounds like such a tough time for you. But the one thing I will say, is that I’ve had a lot of female friends talk to me about their health and I hear this again and again and again from women who are genuinely sick, who have been in hospital for various reasons, who feel so sick that they can’t do their normal activities: they feel like a fraud, or that it’s either 1. Their fault or 2. All in their head. Please know that none of this is true. Just because doctors are not communicating well with you (I hope some of them have), or because they don’t sometimes communicate well with each other (especially when you’re in hospital) does NOT make you a fraud. You are unwell, you are very deserving of whatever is needed to make you well, and I hope the scan is the next step in that process.

This is such a wise post!
@ThemysteriousH please read this a thousand times until you understand that you're not a fraud. Good luck tomorrow 🙏

Glad to see you're able to rest at home now OP. Have they given you an emergency injection to carry in your handbag for the Addison's? And explained the "sick day rules"'i.e. if you are sick you will need to double your dose, in some cases they say to triple dose. Good luck with you scan!

How was the scan OP? Hopefully it went as planned. One step down and over. Hopefully your feeling a bit better

I’ve been told absolutely nothing! Just given my steroids to take every day - I don’t want to search it up because the experience my aunty had was awful and she died young 😞

@5YearsLeft that means a lot, thank you. I suppose I have felt “gaslit” a lot and I don’t use that lightly. That’s history now though.

@DyslexicPoster @BetsyBobbin all done! I’m glad it’s done but wasn’t the best experience personally but time to move on and take what comes.

That's good OP. No idea what a PET scan is like. I've had a few MRIs and they aren't fun. I imagine I'm locked in a toilet with a broken photocopier and washing machine next to me. There's always a point where you think "nope, that's it, I'm done now" but overall its fine. Better places you could be that's for sure.

@DyslexicPoster it’s so weird! So I had to fast 8 hours before and my appt was 1700 and by the time I’d sorted DC and school run it was too late to eat when I got home 9:30am so I was hangry!
It was a 4hr round trip with 2 hours there. So left at 3pm and got home at 9pm, my dad was tired so I didn’t ask him to stop for food on the way back (he ate whilst I was there).

Dye gets injected and have to lay flat and not move for an hour and it was in a small cubicle in a portacabin, really claustrophobic and no music etc, then the scan was 45 mins. The staff kept calling me my middle name as they couldn’t pronounce my first name & spoke to each other in front of me in different language (ie whilst cannulating me) and laughing - I’m an overthinker anyway and felt really overwhelmed. The sedative I was told I could have initially was declined.

I then stood up too quick, felt so dizzy and hadn’t eaten since yesterday, this was at 7pm, but was ushered out the door and I slipped down the slippy steps in the dark and landed on my bum and just cried 🤣
It was a hospital (very big!) I’d never been too and was in some random park bit so when I rang dad to get me he had to look a while & I had a bruised ego and bum at this point!

New day tomorrow! I’ve got home and had a tub of Ben & jerries instead of cooking 🥴

That’s a right ramble sorry I’m in a sugar coma haha!

Im quite anxious outside of my own environments (thanks Covid!) I’m only okay at home and local hospitals - where I normally work, obviously off sick currently.
So that contributed to it too.

Just rtft and didn't want to read and run.
Sending you a massive hug and handhold!
I really hope you get the full diagnoses soon so they can start getting you better xx

When will you get the results, OP?

Hi @ThemysteriousH sorry to hear you had a bad experience but at least it's done now and fingers crossed and prayers for a good result 🤞🏼

And remember, you are not an inconvenience, you are a person who deserves to be treated well.

I hope you get the Addisons confirmed or ruled out quickly. Please don't panic if it is confirmed, I'm sorry to hear what happened to your auntie. As long as you take your daily steroids and carry an emergency injection kit etc you'll be ok. The endocrine nurses are great at explaining it all. Sometimes new patients get missed due to being diagnosed by a different clinic. Do ask about emergency injection kit and training, if it is confirmed as Addisons. Hope you get some answers soon.

@IHateLegDay thank you so much 🫶🏼

@TheShellBeach well I don’t know now as my referring consultant has the whole of March off and doesn’t work Wednesday’s so the results are going to my amazing GP too.
BUT she’s now off sick this week, I had a voicemail cancelling my appointment whilst I was there.
I know once she’s back she will get in contact as I get random regular check ins, I’m blessed to have her as a GP.
So basically I don’t know 🤣

@BetsyBobbins thank you so much, you’ve been really supportive :)

@NoodlesandDoodles she had tumours from a young age with it and limited treatments and then unfortunately had a “crisis”.
I’ve got a months worth of the steriods, my cortisol tests and 24 urine collection were abnormal. I had one bad night whilst in hospital with my BP and had emergency steriods, fluids & bloods.
Apparently the fluohydrocortisone is the correct treatment, I’ve an endocrine appt coming up (I’ve a parathyroid tumour) but been asked to have another appt sooner.

Good lord @ThemysteriousH your PET scan experience sounds beyond awful. I feel really angry that the staff were so uncaring . And as a HP yourself it must have been worse because you will have known that it's not the standard of care you would have given , especially talking to eachother in another language. That has to be a disciplinary offence?
I can see you crying at the foot of the stairs .
Thank heavens for B&J !

I have a friend in Suffolk who has lots of hospital visits and it's really brought home to me how many people have to travel for hours for treatment.
Portacabins staffed by people bussed in from London miles away for some procedures.

@amberedover1 it was awful, it was all an agency/private company from what I can tell. They’d come from a place 6 hours away (Around London area).
I tried to make convo too but wasn’t even answered, it was just unpleasant but I’m glad it’s done. Sore today from falling & guilt from the ice cream 🤣

Yes I was completely oblivious how much travelling happens! And then the lack of communication too. We are still mainly paper based not electronic, so my notes are always lost between the 6 (!) hospitals I attend & my results can only be viewed electronically within the health board that it’s done by?

Had a phone call that a letter has been typed up for my consultant and posted today.

Consultant has all of March off and wanted it done before then but I’m taking it as a positive that it’s coming in the post and hopefully the phone call from secretary was a courtesy call?

I asked did it say it was all clear then and she said she couldn’t decipher the medical terms but I’m there’s an appointment with a colleague of my consultant arranged.

So shall I take it as a good thing? 🤞

Hopefully, fingers crossed 🤞🏼

But make sure they send a copy of the letter to your GP and also to you. If your GP gets the letter before your appointment they can clarify the letter for you and what it means. Good luck 🍀

Had a random a letter in the post today for a “mixed clinicians” appointment scheduled for -Yesterday! & at a hospital a couple hours away 🙃

Rang the appointment centre and they said it wasn’t arranged by them. So a bit confused.

At least I’ll have the letter from what seems to be my “main” consultant tomorrow, hopefully.

That's random. Everything crossed for a boring letter

Letter never came today, haven’t been sleeping with anticipation, don’t even think it’s worry I think it’s just he unknown.

Even moving furniture in the night kind of tired 🙃
I’m at the point of being delirious from lack of sleep!
Dont mean to keep updating. It’s just like a diary for me at this point

Keep talking on here, we can wait with you. Knowing the state of the post office you could get the letter at any random time.

If I wake up in the night I struggle to go back to sleep. Can you sleep a bit in the day? Once the sun comes up and it starts getting light I can normally sleep easily then. Hopefully you be exhausted to find some sleep tonight.

@DyslexicPoster thank you so much, I can’t even explain how much that means 🫶🏼. Don’t really have many people IRL and I don’t really talk to them about my health anymore.

Yes the post office is rubbish isn’t it! I really hope I have it Monday as we don’t get post Tuesday’s for some reason!

Normally my normal medication helps, took a sleeping tablet and slept 2100-2300. Got a good Netflix series on.
I didn’t even go to my sisters “bridal shower” today as I don’t feel up to it.
Hopefully I can sleep in the AM like you said, I don’t have DC then either as they’re going to church and Sunday dinner etc with family.

Picked up my sick note yesterday which stated, “acute pericardial effusion & pericarditis, addisons flare, awaiting PET scan & treatment plan”.
The dr who wrote it was a bit enthusiastic 😂
Signed me off 2 months not 2 weeks. Hoping I improve soon as work helps my mental health.

Sorry just rambling now! I will update when I know anything, enjoy the rest of your weekend ☺️