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.

[thaegumathteth]

I'm sorry you're going through this - I think the numb feeling is normal. Did they give you any indication of what their findings mean so far?

Remember a PET scan isn't just for cancer and either way, as you say, it's good you're being taken seriously.

Speak to someone in real life if you can, I'd always want friends and family to come to me. Sometimes though personally I don't want to talk about things cos it makes it real? And that's ok too I think in the interim.

[ThemysteriousH]

I’ve had abnormal white cell count and a lymph node biopsy, had a gynae biopsy and bowel ones, all within weeks, as well as cancer marker bloods which have come back “positive”.
Had the phone call Friday to go in today to see an amazing consultant.

So many things have been mentioned that I don’t think I even really listened, I had a CT chest/abdo/pelvis straight after the appointment that they’d arranged for me so I am so grateful.
The only thing sticking in my head is the PET scan.
I know I’ve other appointments with various specialists upcoming now.

I did ask my dad to come along, he’s a massive support for me, but unfortunately he couldn’t, and in hindsight I should’ve written things down.

You're so right though, I’d want my friends to come to me. I just hate the thought of being a burden when I know everyone’s struggling with the current climate.

I know either way, I should be grateful to have the scan and I’ll know more after.
She did say they’ll have an idea of treatment options, but as you say could even be non-cancerous 🤞

[ThemysteriousH]

I’ve been called into hospital (2.5 hours away) to stay as an inpatient and have tests as the ones I had have come back abnormal so the consultant wants me to stay in so all specialists can see me and get me sorted.
Feel so bad for my DC.

Handhold please 😔

[thaegumathteth]

How old are your DC? Do you have someone they can stay with? Don't feel bad - you need to look after yourself and you're doing all the right things.

Please reach out to friends and family if you think it would help.

Practically make sure you take cash, phone charger, headphones, a warm cardi, warm socks, book, snacks, a large water bottle & if you have one that keeps stuff cool even better.

[itsgettingweird]

Here to handhold.

You're going to be in the right place and they want to get you sorted so hang onto that for now.

Can you FaceTime D.C. from hospital so they can see you're ok?

[FatArse123]

Here is another hand hold.

[5YearsLeft]

What a kick in the arse, eh, OP? I’m so sorry, and I’m sending you all the positive thoughts that I can. But most of all, I’m so sorry that you had to essentially “swim upstream” and fight against the system to get them to listen to you. That niggling feeling that something isn’t right (except if someone has health anxiety, obviously, which is very difficult in and of itself) is damn important for women. It’s the reason why “a sense of impending doom” is a symptom for women for heart attacks (it might also be for more diseases now?).

I know you said you worry about burdening friends when everyone is struggling right now, but honestly? Sometimes helping our friends, being a support for them, gets us out of ruminating on our problems. Yes, it can feel scary to be worried for a friend, but it can feel a whole lot better to know you’re actively supporting them and doing what you can to help.

I know you haven’t mentioned how old your DC are, or how old your father is or whether he’s retired. Hopefully they can look out for each other while you have a short stint for tests in hospital.

Also… Ive always hated hospital. Make sure you take ear plugs (if you see this before you go), and things to entertain yourself, plus snacks that don’t make you feel sick, if you’re having any stomach trouble.

I wish you all the very, VERY best and hope that you’re home soon with more answers so you can make whatever plans you wish.

[thaegumathteth]

How you doing?

[ThemysteriousH]

Thank you so so much for the lovely messages.
I’ve not been too great, very low BP (85/60) and heart rate 120+ so having fluids. Small clots found on CT scan. On heart monitor too so being looked after well.

Been a weird day and still not really clear on things. The “main” consultant who’s organising my care and specialties said to expect at least a week, but a nurse said she’s been told I’ll be a “long stay”. I suppose I’ll find out more in the AM!

Considering I’m at a hospital I don’t know, the staff have been absolutely fantastic, I can’t fault the care. I’m having hourly obs and endless cups of tea. I feel very lucky in that everyone I’ve come across has been so nice.🥰

Can't wait to hear the plan now tomorrow, I really want to be home but apparently it’s easier to coordinate my care this way. I’m looking at the PET CT as something to rule things out rather than diagnose!
This hospital doesn’t do them so that’s a test that’s another hour up the line again.

Thank you for the handholds - DC are 11&7 but my youngest has additional needs, eldest hyper emotional. Just got to show them I’m okay ☺️

[thaegumathteth]

Glad the staff are nice and they seem to be very on the ball. Are you on a ward or do you have a room?

It's tough isn't it? I had sepsis when my kids were those ages and I too felt guilty even though obviously I couldn't help it! Retrospectively I tell myself that having tough experiences in childhood is a good thing if handled well. Builds resilience and all that????

Hope you manage some sleep and the food isn't too bad.

Fingers crossed for a plan tomorrow. Will your dc be able to visit?

[ThemysteriousH]

Dad is 62, works full time & has so much on his plate. I’m blessed to have him.

Not a good relationship with family, especially mum and sister, religion differences, I’m the rebel and black sheep 😂

They’re good with DS though, even with our strained relationship.
I think being a lone parent I feel so guilty as I’m their constant if that makes sense? I’ve danced with death a few times (not now hopefully!), so the fact I’m in hospital automatically worries them 😔

[Lucylou07]

Hi OP.

Are you in the UK? It's 3am. You must be shattered.

I have nothing useful or relevant to say but am awake so thought I'd send some support.

Your BP reading took me back. That was where my blood pressure used to sit when I was pregnant. Makes you feel grot, doesn't it

[ThemysteriousH]

@thaegumathteth

Glad the staff are nice and they seem to be very on the ball. Are you on a ward or do you have a room?

It's tough isn't it? I had sepsis when my kids were those ages and I too felt guilty even though obviously I couldn't help it! Retrospectively I tell myself that having tough experiences in childhood is a good thing if handled well. Builds resilience and all that????

Hope you manage some sleep and the food isn't too bad.

Fingers crossed for a plan tomorrow. Will your dc be able to visit?

I have my own room but they’ve added a trolley in with a male as there is no room for him so it’s a small space and quite awkward. He’s made it clear he’s not happy to share with me.

Bless you that sounds awful and it’s so hard to get over. You’re right about resilience though!

Not really been hungry but had a constant supply of tea! :)

I’ll feel better with a plan, it’s been a mad 48 hours. Unfortunately no visits due to being 2.5 hours away 😔

[ThemysteriousH]

@Lucylou07

Hi OP.

Are you in the UK? It's 3am. You must be shattered.

I have nothing useful or relevant to say but am awake so thought I'd send some support.

Your BP reading took me back. That was where my blood pressure used to sit when I was pregnant. Makes you feel grot, doesn't it

Hi, yes I’m in the UK, my sleep isn’t great, having regular obs too (not their fault) so it’s hard to nod off but just had a lovely cup of tea!

Oh gosh that must’ve been awful in pregnancy!
Yes I feel dizzy and just “meh”. I dread standing to go to the loo as the room spins and I get clammy but I don’t want to make a fuss!

[Lucylou07]

You can advocate for your needs without making a fuss, remember. The last thing you need is to fall and have a bump.

Hope you get some rest

[ThemysteriousH]

@Lucylou07

You can advocate for your needs without making a fuss, remember. The last thing you need is to fall and have a bump.

Hope you get some rest

You’re so right. I just feel a fraud, there’s so many people that need this bed more than me.

Just looking forward to a plan!

[BetsyBobbins]

Hi OP, just wanted to say I'm praying for you 🙂

[BetsyBobbins]

Hi OP, any news?

[ThemysteriousH]

@BetsyBobbins

Hi OP, any news?

Hi, apologies for the slow reply, it was an awful night.
BP dropped even further, was slightly scary.

Saw a new dr who basically said it’s because I was dehydrated and it was night time and I’m on a telemetry so don’t worry 😂
Heart rate still sitting at about 110+ now but blood pressure better at around 97/55. Tried telling the Dr today BP is normally high, I was made to feel awful like I am a hinderence.
He said everything isn’t a major “acute” problem so I can be having procedures done as an outpatient and that he can’t interpret the complex things.

I’m done fighting & being told different things, I’ve no energy for it.

[BetsyBobbins]

I'm so sorry, you had a bad night. Also, it's so frustrating to fight incompetent doctors, they can make you feel like a mad person but you have to stand your ground. It would be a good idea if you had a relative or a friend that could speak on your behalf (because understandably you are tired and weak).

It's so annoying that we have to fight time and again just to be heard. I'm sending all the good vibes and positive energy to you ❤️

[BetsyBobbins]

Also, please consider complaining to PALS because I could hear his patronising tone from here, this is no way to speak to a patient. If you have enough strength, please speak to a nice nurse and mention that you are "thinking" of complaining to PALS because you weren't taken seriously and and you didn't appreciate the way you were spoken. I bet if there is a rumour (because the staff sure talk amongst themselves) of a patient thinking about lodging a complaint, the next doctor who comes along will take a different approach. I know this sounds a lot but we have to make ourselves be seen and heard. I placed a complaint against a locum GP in my practice because he was absolutely atrocious and incapable of reading a blood test. At the end he's just said "Ok, what do you want?" and I ended up having to guide him, which should be the other way round actually.

Stay strong and stand your ground, I'm praying for you

[thaegumathteth]

That sounds rubbish - could you ask to speak to someone else? What do the nurses say about your BP? sometimes I've found nurses much more knowledgeable and sensible

[DyslexicPoster]

I bet by shift change they will change their mind again OP. How annoying to rush you in, then talk like that. Its not like even wanted to be there!

[ThemysteriousH]

Sorry I’ve been MIA, been on CCU.
I feel so so much better today!
I had such a down day Friday being kept in the dark and again feel the blues creeping in.
I have been started on medication for addinsons disease (something my aunt died of young a few years ago so understandably worried).
Have blood thinning injections for my mini clots.
Still some tests outstanding but I need to get out of here so I’m hoping they’ll let me home with telemetry tomorrow 🤞

Thank you for the kindness shown.

[ThemysteriousH]

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!