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.

Ah you’ve reminded me - I did ask for the copy and actually wasn’t sent it!

My sick note expired bank holiday so waiting on new one, the hassle I’ve had 😢

Im with the RCN (royal college nursing) union so I’ll get in touch.

Feeling a bit overwhelmed, I’ve my nose procedure tomorrow but before that I’ve pre-assessment ready for my operation next week.
Im praying my bloods etc are okay it’ll be cancellation number 5 if not.

Im dreading the bone marrow biopsy too 😭
Just so many appointments and procedures and I want to hide.

The consultant asked me yesterday do I get fevers along with the night sweats and I said sometimes - typical I have one tonight! It’s 41.1oC, being sick, just feel crap 😔 & super guilty for whining again

You're entitled to whine, whine away if it makes you feel better x

It does make me feel better but I do feel bad at the same time to be negative constantly.

My endocrine tumour removal booked for Thursday has been cancelled - FIFTH time.
This is the one I’ve desperately wanted out for ages as it affects weight/mood/hormones and things, it’s benign (most likely) but it’s been debilitating.
I thought I was having a breakdown a while back, had crisis team intervention, it was a really dark time in my life but physically feeling unwell too - I’m so lucky my GP just happened to run a few extra blood tests as she knew this was unlike me & that’s how it was picked up.

My mental health still isn't great but I’m always working on it. My memory suffers a lot which causes frustration.
My surgeon said many others diagnosed older are actually on the pathway for dementia testing - scary.
I’m also the youngest he’s seen it in - I’m special that way 😂 (unlucky more like - but optimism eh!)

Cancelled due to miscommunication yet again.

I’ve not got out of bed since I came home yesterday due to feeling low about it.
I felt unwell anyway the last couple days but this is another blow.
PALS already are investigating it and that’s how this new date was secured. It’s a shit show.

Had my time and confirmation letter for bone marrow biopsy, asked a few different people each said no if someone will come as I’m fricking scared. I know how painful it’s going to be.
The oncology nurse I met the other day will be there but it’s not the same is it 😔

New day tomorrow! Have a lovely weekend and thank you so much as always 🫶🏼x

You're really going through it 😔 I'm so sorry it's been cancelled again! Sending you a massive hug and a handhold xx

@IHateLegDay thank you I appreciate the handhold & hugs, much needed 🥲

This just seems a massive mental/emotional rollercoaster added as a bonus on top of everything else 😬

Provisional date 25th April but I’m not getting my hopes up anymore, I can’t afford to feel like this a 6th time.

Anyway, new day! Last weekend before my boys go back to school. Have a lovely weekend all & thank you as always 💜

Still keeping you in my thoughts, OP.

Thank you @TheShellBeach, you’ve been a great support. Wishing you a good weekend :)

Ffs, I can't believe it's been cancelled again. You said PALS is investigating but it seems you need someone external on the case to spring them into action.

Could you ask your GP to write/call them saying it's imperative to have this done asap? If not your GP, some sort of advocacy service. I know it's super difficult because you have zero energy as you're feeling so ill but it's bordering on parody now. Cancelled five times? No, not acceptable, they need a kick up the arse. If I wasn't as deaf as I am I would volunteer to call them and put it into very clear terms what they need to do next (phone convos are difficult without the equipment I use for work).

They found this online but I'm not exactly sure it's the right service, I just typed "patient advocacy service Wales", maybe you could give them a ring on Monday. I beg you not to be embarrassed to ask for help or to think you're bothering people. You need help with all of that, be your GP, your dad, an advocate, anyone really. You need support and there's absolutely no shame in that.

I'm praying for you 🙏

I found it, not they, not sure where the they came from (my autocorrect taking the piss out of me as usual 😐)

I forgot to post the link, I think I need more coffee

www.llaiswales.org/have-your-say/raising-concern-about-health-and-social-care-services

Thank you I appreciate you looking into what I can do. I will do anything I can!

My GP is amazing, she’s contacted surgeon before and had such an arsey reply it really quite upset her. Her really undermined her.
This was after the second time in Jan.
Since then we’ve jumped through all hoops that have been put in place. I’ve an appointment with GP 15th :)

I need to chase PALS up as they’re meant to look into and have a resolution within 30 days and it’s been longer than that.

You can never have enough coffee ☕️🤣
Thank you for your prayers and support as always @BetsyBobbin 🙏

I'm so sorry it's been cancelled again. Based on recent similar experience I highly recommend both emailing the CEO and contacting your MP and asking them to intervene. Having waited over a year and with multiple cancellations the op was done within a fortnight of contacting both of the above. Particularly if you explain your wider situation I'd hope they'd be sympathetic.

It seems utterly bizarre that an MP chipping in should.make a difference, but it really can.

That’s a really good idea! I shall contact MP.

I selfishly thought working within the hospital/trust (it’s a small one, everyone knows everyone!), that I’d have better care.

It makes me worry about those who can’t advocate/chase for themselves.

That's crazy, OP! What reason have they given for cancelling it this time?

Basically lack of communication, the secretary found a letter from 8/1/24 where the surgeon wanted more tests. They were done straightaway.

I have since had dates given and cancelled last min so this one has baffled me. My notes keep getting lost but there’s an electronic system.
Not sure if it can be viewed in separate trusts.

They want confirmation from the surgeon himself he’s happy to operate (he’s the one that gave the go ahead!) but he’s on annual leave until the day before the theatre list so they’ve given my slot to someone else 🙃
From what I can gather anyway!

Me again, using my post as a diary almost now as it’s the only place I have to vent.

My mind is in overdrive again & the closer I’m getting to the bone marrow biopsy, the more scared I am.

Work is massively affecting my mental health. Being pressured into all these different absence meetings & escalation. Each one is a step closer to being medically sacked basically. Even though occupational health have said I need to be off.
The next meeting has been arranged the day of my biopsy - which I obviously can’t attend. I made them aware before that it was happening that date.

This is probably really identifying but I’m hoping not. It’s my safe space 😞

God, I'm so sorry to hear all that. But let's go bit by bit.

I don't think all trusts can see each other's data automatically. With the system I use at work, I can only see my own Trust's data. If I want to access NHS national records, it won't let me. There's a way to do it but you have to ask permission and state your reason for it and speak to IT.

Our clients usually send us letters they have received from other professionals in their network. Ideally, whenever there's a test result, clinical letter, whatever, all professionals involved in the clients care should be copied in but sometimes it doesn't happen. If you have copies of all your letters it's worth taking them with you whenever you go to other trusts and asking admin to scan and add them to your records.

Now, you need to speak to Acas, your union rep but before all that you need to have the sickness policy in hand. Don't let them do that to you.

Just wanted to jump in. I am so sorry you are going through this HR issues in too of juggling so much.

Please make sure u have a rep in every meeting u have wirh hr and out your concerns in email to them. Capture everything. Explain to them you feel. Bullied and descrinibate against during a time of extreme illhealth. Giving u even more stress when u need to be healthy.

At this point I don't think u should be trying to tackle this, someone should be doing it in your behalf. Get acas and RCN involved ASAP. How dare a health organisation be so dam unsuporrive of avute ilhealth. It's hurrendous how heskthcate staff are treated. We give everything we can to care for people and then when we need it, we don't get it back. Or even our basic rights.

X

@BetsyBobbin I thought as much & feel I’m being given various excuses. I rang and left a message with the manager of the waiting list clerk and he assured me the team member would ring back - she didn’t.
Ive been emailing for a paper trail but they just get ignored now, I can tell I’m annoying them! 🙈
That’s such a good idea regarding letters!
I will ask can I obtain some of them.

@Grenola I really need to sort it like Betsy has said. I will get on it today, I feel so disheartened about it all.
I would do anything to be in work right now - it’s what helps my mental health & I hate not being physically well enough, so it’s a kick in the teeth they’re being like this 😞 I need to be proactive in fighting now!

Had an iffy couple of days and haven’t replied back to my email from them but I need to sort it and not bury my head like usual! X

I'm just so sorry ubhave this to do deal with too, on top of the health challenges.

I'm late to nursing, graduated at 40! I went into it knowing to have my own back and management are not there for u. Such a shame isn't it

X

@Grenola never too late! I personally have found that those who’ve had more life experience are better - maybe slightly controversial opinion 😳

The lack of support is madness. I can see why many turn to agency. I’ve been burnt out a few times but addicted to the adrenaline.

I didn’t end up replying to my work email for the next sickness meeting, too overwhelming, I feel so let down.
Im quite “different” & opinionated which doesn’t help me being liked by management!x

Big day tomorrow - they’re doing bone marrow biopsy/lumbar puncture.

endocrine tumour op permanently cancelled by a surgeon I’ve never met, been so deflated.

Work are having me come in for a formal sickness review, meeting 2, 3rd meeting = dismissal.

My mental health is at an all time low

Gosh I'm so sorry. Wishing you luck for tomorrow.

Have you spoken to your union?

I'm wishing you all the best tomorrow.

Re cancelled op, they need to give you a reason, can't cancel out of the blue like that. Please get your GP on their case.

After your biopsy you really need to get on top of things re work. Did they send you a copy of the sickness policy?

Thank you so much 🙏

Its at the point now I’m thinking of saving for a private consultation with the original surgeon I saw - his secretary is the same as this other one & she won’t pass on a message :/ I’ve sent yet another email to PALS and no response.
I need to ring them rather than email now I think.
I just wanted to make sure I had a paper trail.

Yes I’ve viewed sickness policy and if I’m honest it’s really vague. It doesn’t actually name specific time frames for the 3 meetings.

I have spoken to the union & having a rep come along with me. They’ve upped the panel from 2 to 4 🥲
Occupational health have said I’m not fit for work or redeployment but I still have to attend these.

On paper with everything I’ve got and symptoms I have, I shouldn’t work, but it helps my mental health so much as silly as it sounds.

Thank you for listening to my rants, I think I’m almost just using this as a diary now so please don’t feel you have to reply when I’m here whinging away 😅