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.

Oh OP, I'm so sorry to hear this. You need someone to speak on your behalf who escalate this with senior staff. You need to be maybe moved to a better hospital. I'm praying for you 🙏

I hope you see the right Dr on the rounds in the morning. The hopefully you get a plan

Back to CCU after being downgraded. Absolutely gutted.
No answers given, just told to wait to see consultant tomorrow - cried my eyes out, away from home missing DC and my cat!

Honestly , this is so cruel. Just moving sick people around like packages when they're feeling awful and are at their most vulnerable.
I know staff are overworked and often thin on the ground but is there none who could talk to you a little.

I’m just so drained. New diagnoses seem to constantly come my way, seeing different specialists that won’t take charge so I’m going to write a list (my memory has been awful recently) and go from there.
Im having no IVs now so going to try get home and have portable telemetry.

The funny thing is - I’ve still not had the PET scan! I’ve been told it’s been authorised though.
There’s only 2 machines in Wales (so I’ve been told) and one is broken down.
I’m happy to have it as an outpatient and wait as I know their is so many people who are worse off than me and would need it quicker!

I'm really sorry to read your update.I hope at least you're home where you'll be more comfortable and get some rest .
I'm shocked about the only one PET machine being available in Wales .It's truly scary now that the NHS is so overstretched and in such a bad state .
If they think you have Addison's ,is this now being treated ?

If your feeling really drained, record the Dr convos on your phone. Make voice notes on your phone via dictation. Then re listen when your up to it and make notes. Only PET scan available is very scary

OP, sorry to hear that. You've mentioned your dad, do you think he could come to the hospital and talk to someone on your behalf with a clear had?

I feel so much better being able to rest at home, I’m being sensible and not pushing myself too much.
I have been, I’ve been started on a special daily steroid for it. Worried about the weight gain but if it helps I’ll do anything!
I’ve been taken off one of my lupus medications temporarily because it can affect the heart. It’s just confusing all the different things now 🤣

That is such a good idea! I will do that from now on. I’ve asked for a copy of the letters sent to the GP also.

It is scary, there could be someone who needs it a lot more urgently than me and not able too quick enough 😔. They are rejecting out of country referrals too as there was talk about me going to a “centre of excellence” in Bristol (I think?) as I’m complex and that was rejected due to funding. There’s no way I can afford it privately.

Yes, he’s really good and normally accompanies me when he can (work permitting).

Unfortunately he’s a really horrid bout of Covid which has left him bed bound. He’s fit & healthy, never poorly, bless him.
Bad timing but can’t be helped! I’ve been sending medicine and supplies through Amazon prime for him ☺️

This is in Samsung notes. Just tap on the mic, chat away and it types for you. Same on other apps. The mic is there and types. It's not 100% accurate. You need to say "full stop" "new paragraph" but once your finished, just quickly change the nonsense parts and leave it. You only need to understand it, it's not for gcse English. Great for me if I need to type lots. To record the Dr just find voice recorder on your phone and that will record audio which you can listen back to when your feeling better.

Also pop questions onto a note on your phone as they randomly pop into your head. Then you can remember them when you see the Dr

Scan on Tuesday.. good news! (I think?)

That is good news. Knowledge is power. Then you know what's going a bit more as they rule things in or hopefully out

This is good news, praying for you 🤣

Oh my God, that was supposed to be a praying hands emoji, what is wrong with me? Sorry!

That made me laugh! I needed that 🤣

I agree 100%! I’m taking it as a positive thing, it could show things are benign, think the worst and anything more is a positive!
Thank you for the advice on recording things too.
My GP has been amazing and been checking in, I’m really lucky.

@ThemysteriousH flat to be of service 🤣

It's great that you're GP has involved and supportive, please keep us updated

@BetsyBobbin your autocorrect is funny 😂

Oh my Goodness, again!

Sometimes I just think it's taking piss out of me, honestly 😬

@BetsyBobbin I can imagine it gets “ducking” annoying! 🤣

Well, at least I'm making you laugh 🤭

@BetsyBobbin you have! Thank you ☺️

Scan day tomorrow. Really nervous. Also having weird feeling of being a fraud having one :/

Good luck! You're doing the right thing