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.

Please keep writing if it helps you. We're here thinking of you and hoping for the best 🙏

Thank you @BetsyBobbin , I really appreciate it. It’s nice to have somewhere to come and write about it ☺️

Waiting is the absolute worst , torture.
Have you checked your NHS app ?A digital copy of the letter might have been uploaded there .
Hope you get some rest today.

I don’t have an NHS app, we don’t have it where I live 😔
I’ve had a good sleep this AM luckily 😊

That's good to know that you had a good night ☺️

Double check the NHS app, go to your App/Google Store and see if you can find the official NHS app, download and register, the worse it can happen is to not have anything on it. Let us know when you hear something

Unfortunately they don’t have it for where I live
😔

Post came - no letter. Consultant now on leave for the month and secretary can’t tell me over the phone & my GP is off poorly 😞

That's rubbish. Hopefully it will come tomorrow. I wonder if your gp got a digital copy? However they normally send letters to my gp I the post.

I hope you caught up on your sleep in the end

@BetsyBobbin I've just googled and apparently the NHS app is only available i England and the Isle of Man .
Perhaps the OP lives Wales/Ireland /Scotland ?

Yes, I think she's based in Wales as far as I gathered.

Yes I’m rural wales 😔 apparently I’m too complex for any of the other GPs to speak to me so I have to wait for mine to come back, but it sounds like she’s on short term sickness.

We don’t get post here Tuesdays (I have no clue why!) so looking like Wednesday :/

Skin of my nose (?!), spleen and liver picked up on scan.
Feel numb. Expected a letter to say it was all clear because it was a letter.

I'm sorry to hear that.

Did they give any more information in the letter such as future appointment dates with the consultant(s) or further exams?

What does that mean?

Having the patch of skin removed off my nose 2nd May - first available urgent slot (it’s a bigger hospital a few hours away that covers all of S.Wales)

I’ve hepatology Thursday for a special ultrasound & referred to Birmingham? A good 7 hours away 😬

Then heamotology need to have some input? Don’t know why.

Then a plan will be made. More waiting. Just got to get on with life for my DC and take things as they come: Doesn’t help I had a formal work review for my absence today 😔

A work review for just one absence? That is not on! Are affiliated to a union? If not I urge you to speak to Acas. I know it's one more thing on your plate don't let work do that to you.

I know it's easier said than done but take each day as it comes. I know it's not good news but also might not be the worst either.
We're here sending you strength 🙂

I'm so sorry you've had this worrying news.

Yes, a “long term sick” review, been off since mid Jan - not by choice! I’m fiercely stubborn, but my body is letting me down doing the simplest thing.
That’s what is so frustrating, I want to be in work, the routine massively helps and I actually really enjoy it.
Im with the RCN but my union rep had a bug and couldn’t come, they had the right to carry it ahead still due to the short notice so I went.
Gone down to half pay but health is worth more I’m learning!

Thank you for your kindness, it’s a bonus that it means my endocrine & ovarian tumours are benign (I’m assuming because they didn’t flash up).

How awful, @ThemysteriousH

Are you claiming PIP at least?

@TheShellBeach I’ll be honest I haven’t as I’d feel a fraud but I think I need to face facts.
I have applied for DLA for my youngest nearly 5 months ago though so I’m hoping that will come sooner 🤞
I’ve been with the NHS a long time so I assumed I’d have had full pay a bit longer.

I couldn’t think where I remembered your username from, then realised it’s a thread where we were giving advice to a young mum.

You can get PIP even if you're employed. I expect you know that?
Get advice here:
https://www.benefitsandwork.co.uk

I had it a few years back but I rang and closed my claim as I was a lot better, so I do need to claim again, I’ll make it my priority tomorrow, I need to do it for the sake of my DC too.
I’m too proud and stubborn for my own good sometimes!

I’ve started a list of little goals, I am going to see if there is a cancellation slot to have my nose (I find it oddly funny - it would be me that has it on my outer nose 🤣) sorted any sooner.

So sorry op that it wasn't better news, if by chance you get referred to Bristol instead, especially as an inpatient, I can pop by and keep you company as I know it's far for visitors. I'm fairly close to both hospitals. Same goes to any Mumsnetters struggling being sent here from far away - I had a couple come to dinner and use my washing machine and shower once via here ... I know what it's like to be sent miles away

@mitogoshi that is so so kind of you, the world needs more like you 🫶🏼
I know one of my surgeons is actually based at Bristol and comes to 2 hospitals in Wales for a specialist type surgery, I’ve actually asked for funding previously but it’s hard to get out of country funding because he comes down periodically. I don’t really get the funding/political things tbh!

Sorry to hear this. It sounds like your not really getting anything firm to process. So crappy to telly out half a story really. I hope your gp and or consultant reappears asap with a opinion and a plan.

Also crappy about work. Definitely supply for pip and try to sort out your union. Some days I swear what you really need is a ton of chocolate and wine and some magic ability to pause life and go hide or hibernate. I'm having a horrible time, nothing in comparison to you and I do think about running away a lot. In reality I'm at the chocolate and sticking my fingers in my ears. Not like me at all. I'm very proactive. But I'm realising it's going to play out what ever I do. I prefer to be in control. A short period of being inert might a nice luxury. So exhausting chasing so many things

Half pay seems to have come about quickly. Are you part time usually? I'm NHS in Wales and I have 4 months full pay and 4 months half pay. Been there 4 years.