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.

Tuesday is good news. Nothing worse than waiting around.

Your poor son. Sounds like a horrible time all round. I just pray that things start looking up soon and the universe sends you a break. Is there something low effort you look forward too after Tuesday? Get some popcorn and a film night with ds?

I'll be thinking of you on Tuesday, OP.
I'm not surprised you're feeling anxious.

Thank you, I’m hoping Tuesday comes around soon. I’m glad it’s an AM appointment!

It’s a long story but I’m alone until Sunday when I will have DS then & got to chapel so my minds going busy.
Trying to distract myself with Netflix but I can’t concentrate- same with treading. I’ve lots of house things I can to but I can’t do much physically before feeling rotten.

Ive started therapy recently which has helped though and a good distraction too :)

Happy Easter weekend 🐣

I'll be thinking of you on Tuesday, I'm glad they brought the appointment forward.

Did you get to manage to change the other ones that were on the same day?

Thank you Betsy.

Depending on timing - yes -hopefully-

Thurs I’ve pre-assessment locally at 8:45am but need to be at the other hospital 90 mins away for 10:40 so if I’m out at 9:20am then it can all be sorted.
I’ve my dad “transporting” me about luckily.
I’m praying already it goes smoothly!

Then the following Thursday my endocrine tumour will be removed - I’m telling myself it won’t be cancelled again!

Would audiobooks be any use if you can’t focus on reading. When my mind is whirling too much to read and to fall asleep I find listening to really easy listening books.

i call them popcorn books, total fluff but very easy to get into. If you have Spotify some subscriptions include audiobooks.

Sending positive thoughts for next week.

Thats a really good idea@OhBeAFineGuyKissMe , I’ve never listened to one before. I will give it a go!

Its officially Monday now so in my head there’s only one more day to go 😌
Very nervous but I’ve been needing to know what I’m dealing with.

i use these headphones Amazon link which you can sleep in, if I am really struggling to sleep I play gentle ambient music which makes a big difference.

Exactly, you can't live not knowing. Tuesday is just a few hours away x

Sending you love and a handhold! We'll all be here for you xxxx

Thank you so much. I’m so nervous.

Have to bring DC with me. My eldest is 11 and very old/wise for his age. Youngest is 7 with ALN so won’t realise what’s going on.

Im hoping they can sit outside and just go on their phone - although I don’t want to be that parent whose children are glued to devices! I don’t have much choice though.

It’s at the oncology day unit which shouldn’t be as busy as an outpatients I’m hoping?

No one is going to be judging you because the kids are on their devices, if they do they're twats. Please don't worry about that. Sending prayers 🙏

Thank you I hope not 🙏
Just want to get it over with.

Ill update once home tomorrow, thank you for being on this journey with me @BetsyBobbin 🫶🏼

Left with more questions than answers.
Told that my PET scan showed malignancy’s involving my bone marrow - news to me.

Not given any diagnosis or treatment plan just told I’ve malignancy’s. More bloods taken.
Bone marrow biopsy 17/4.

Ive my big endocrine tumour removal 11/4 so thought they’d wait a while for me to recover from that but apparently not.

The Doctor that does it only has a list on Wednesdays and is off from today until the 17th.

The consultant I saw (and the team with him) said he will be the one all along this “journey”.
The nurse specialist was so lovely, has given me her card and will be there for the bone marrow.

I had prepared myself for today and thought I’d get told what’s what, have a treatment plan and I’m coming away with more questions. Cried with frustration, that’s all I feel right now. Frustration and numb.

Sorry to hear this. You must be so up in the air. At least the 17th isn't too far away. I'd stay away from Google and try to distract yourself if you can somehow. When do the dc go vack to school? It's Easter here until around the 16th. Big hugs

I'm so sorry to hear all that but I guess they can only give you a definite answer and care plan after the biopsy. There could be different kinds of malignancy so they need to know what they're dealing with before saying one thing or the other. That, of course, doesn't stop you being upset, angry, frustrated, the whole lot.

There are so many kinds of advances in treatments today! I know it's easy to say "don't worry" because you will. But try not to spiral. Try to keep your head focused on the situation at hand, a moment at time. I'll come back later, sending you a massive hug Xx

I'm very sorry you're facing this. It sounds so frightening.
I'm glad you've got the nurse specialist though.

Thank you all 🫶🏼
I just just understand how I’ve come away feeling even more confused.
I relied on today for answers and a plan but come away more confused.

I feel physically sick sat here knowing it’s growing in my body as time goes on and having no treatment 😔

That sounds so tough on you. The 17th will soon be here. Try to keep distracted as much as you can.

I’ll feel better tomorrow, I just pinned my hopes on having more knowledge today and know the plan going forward 😔

Ive my big op now on the 11th (which has been cancelled FOUR times) so I’m looking forward to getting that done. That’s a 4- 6 week recovery.

This Thursday having nose sorted and pre op assessment for the 11th all in one morning 🙈

It's natural to feel that way, you were hoping for answers that didn't come. They will come soon though.

In the weeks to come it will be busy and you have to keep yourself focused and well rested to be able to cope with everything so please look after yourself.

What I said about being present works for me ( most of the time at least). If I'm having an anxiety/panic attack, I need some sort of distraction. If you find yourself overwhelmed, overthinking and catastrophizing, bring yourself back to the present moment, ask yourself what can you do to divert your attention from the mental mess. Do you have energy to do a bit of light cleaning with some music blasting on? Maybe play a game with the kids, watch a film or series with them.

Did you sort your pay with your employer by the way?

I really hope so 🤞

Thats a good idea about trying not to castrasrophizing (Sorry I can’t spell it) things, I’m trying to get back into reading again. Had a lovely film night with DC yesterday.

Tomorrow I’ve got one of the important days. Youngest DS is coming along; he’s glued to me as I keep having these vomiting/passing out episodes. I reassure him I’m fine but he has ASD so it’s hard for him to rationalise.
He will be fine with his phone/headphones luckily.
I feel guilt me being like this is affecting him.

Im angry I was “normal” (albeit with my autoimmune issues) until Dec and now I’m scared to go anywhere because of how I feel 😔

Thats my rant for the day haha!

Regarding pay basically no - they’re sticking to me being on half pay :/

Are you claiming PIP?

You need to speak to your union again because they're doing you dirty with the pay. I know that you obviously have a lot on your plate right now but please speak to someone. Call Acas. Do you have a community project, CAB, or any kind of advice centre accessible to you? As a last resort email and call HR and ask them for a copy of their sickness policy.

Same advice goes for PIP. It's paramount to have your finances sorted when you have health problems. Let us know how you get on. X

I’ve put a claim in 🤞