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.

@RubyTurtle you're not the OP, are you? Why are you trying to flog stuff?

@BetsyBobbin what did I miss? 🙈

How are you doing after today?

@Grenola I was okay when I got home but since about 9pm the deep pain is quite sore.
They had to do it twice as it wasn’t in the right spot the first go 😢

Hope the biopsy went ok?
Are you resting today? Or are work dragging you in?

I can't get my head around them dragging u over the coals for this. Do u have an official diagnosis and evidence. To ram in thier face? Maybe you should shave your head to give them an actual visual Symbol of illness (this is abti ng he and cheek comment, not meant offensively)??!!!!

If you ar headed into work I hope u have someone with u. If I was close I would for sure fine and advocate for u x

Sorry to hear about the biopsy and the pain. Have you got some strong painkillers with you?

Re the deleted post, some cheeky f replied to me impersonating you and trying to flog some "natural meds", whatever that may be. I reported the post and it was deleted and hopefully they banned the CF.

I'm like Grenola, what your work is doing is borderline constructive dismissal, please talk to your union, provide them with all medical documentation. My trust has something called a guardian service, it's an independent thing that can intervene when you have that kind of problem. I spoke to them once regarding a bullying situation at work and they were very helpful.

Hi both,
thank you as always 🫶🏼 home resting and aching, I feel a wimp feeling it so much. I thought I’d be okay today.

I have my meeting next week, I’ve emailed and left a message for my union rep, I’m not going along.

They’ve seen my reports for my diagnoses & occupational health report (which have access to my GP records also).
I have a feeling they’re going to go down the dismissal on the grounds of not looking fit for work for the foreseeable & unsuitable for redeployment 😔

I am signed off, I have a few appointments coming up that are important regarding what my future treatment looks like & then the results appointment for my bone marrow biopsy isn’t until 3 weeks away as they want some sort of extra tests on it?

Hi there.
Please ask your union rep to reschedule the meeting and not to cancel outright, this will give you more time to think and act. Also ask her to get in contact with your trust and ask them to forward her the sickness policy. Several people mentioned here that the first six months at least are full pay and I suspect that your trust is the same. I know you have zero energy (and quite rightly) but I'm begging you to keep on top of that because what they're doing to you isn't right at all. If they carry on with that you may as well have grounds for a lawsuit in the future but, frankly, no one wants or needs that kind of hassle.

Hope the pain is better today x

Hi there, any news about results?

Hi @BetsyBobbin , sorry to have disappeared.

I seemed to have spiralled a lot with my mental health.
So results day isn’t until 7th May but I’ve a rheumatologist appointment next Monday, 30th, so I’m hoping some results from the biopsy’s should be back by then.

I know they do various tests on the samples and some should be quicker, but then I also know that no hospital in our trust processes bone marrow samples so I’m unsure if that will delay it having to have them transported.

Regarding work, meeting tomorrow, sons poorly so I’ve sent an email early evening, but I physically (mentally) don’t feel I can leave the house.

Thank you for checking in, I hope you’re ok x

Morning.....
Sorry the results will be slow to come thru. Must be hard waiting.

If you are too poorly to attend the meeting, which surely they should expect given your signs off sick with some rather sacred potential diagnosis over your head, they should try to accommodate this with a zoom meeting? If they do, try and record it for evidence.. Even just voice. I don't trust them one bit. U have to try and catch them breaking process. If they have or do break process this means their dismissal won't be legal

Good luck, keep your chin up, hope your son feel better soon x

Agree with Grenola, record everything.

It's a good thing that you have an appointment with the rheumatologist soon, like you said maybe some of your results have come through already. Wishing you and your DC feel better soon x

Thank you both, you’ve been amazing. I don’t really talk about this to anyone IRL and just seemed to have shut myself away.

Im making sure regarding work that everything is via email so I’ve trace. I know I need 7 working days for the meeting to be rearranged so it gives me a little time & hopefully I’ll have had some results from the bone marrow then.
It hurts because anyone that knows me knows that I need work for my mental health. With many of my conditions I could’ve stopped years ago but I push through the pain as it has a positive impact mentally which I need.

Actually managed to wash my hair and do some housework without feeling like I’m going to pass out so that feels an achievement.
Going to build up strength again hopefully :) x

Morning,

I'm glad you are finding some little drops of motivation to keep moving.
I can totally relate to needing work for good mental health. I struggled so much with post natal depression. And afte load of therapy and councellinf I realise all my self worth was tied up with work and feeling good eniugh and getting validatuon. It's so hard to unpick that.

Since retraining as a Nurse I have to be so good with my boundaries and slipping into the track of overworking ect. I'm a single mum to three boys and my youngest is disabled. I'm perpetually tired and exhausted. So I go from doing too much to hernittibg. And then I loos Mt stamina and have to build it up again. It's a cinstabt cycle. I know it's totally different to ur situation, but thought I would share my thoughts on it

I had a little cervical cancer scare they year, only pre cancer. But the realisation of hoe utterly alone u are apart from parents is scarey and hollowing. I just ha myself. I had well wishes but I had to really reachbiur and be totally vulnerable to friends and I felt that I shouldn't have to work so hard time have someone checking in wirh me so I shut down and closed ranks. And I'm fine and got the all clear but I'm not isolated with not really sure what or how a healthy friendship looks like. I give and probably too much therefore I expect too much
It's hard being an adult!!

I hope this nonsense distracted u for. Fe mins 🤣 I'm tired 😴

Hi @Grenola,

Sorry for such a slow reply, I’m rubbish at times!

PND is awful, I feel for you, it’s a weird feeling & confusing when we’re automatically taught to be “happy” post partum.

That sounds really tough with work and 3 sons, I have 2, so can’t imagine the stresses of 3, work and having a disabled one but they sound very blessed to have you 🥰

How did you get through the stress of it all? It must’ve been such a worry for you 😔
how are things now?

how do you find nursing? X

Morning @ThemysteriousH
well in terms of managing stress, I just go from moment to moment and not let my mind jump ahead. In terms of reevaluating my freindships I’ve just had to accept that other people are different and from here on in I will mirror what they give me. That way I keep more of my energy for myself and then hopefully won’t need them as much anyway! I have a good councillor ive had for years so I know the safety net is there ……an email away.

If u can get a councillor u can access over the phone then that may help. Someone to talk to really does release some feelings.

oh, and I also have a cry if I need to and give myself some grace if I feel a bit like a failure!!!!

i love nursing, but it’s the same as friendships I think. Can be toxic if I don’t look out for myself and put my boundaries in so I don’t over work myself!!

how are u feeling health wise?

That’s good advice @Grenola , I’m going from day to day. I deffo have lost a few friends - since Covid really I think?
I was avoided like the plague even when restrictions lifted because they were scared to catch it and I was around it in work & I worked throughout so didn’t have the “nice lockdowns” that perhaps others did?

Ive recently started therapy, she’s lovely, it was a bit strange to begin with as she works for the crisis team so I knew her professionally but also personally from when I had a blip a year ago and needed them.

I’m learning boundaries at work and have deffo been burnt and restarted almost!

I feel okay apart from overwhelming tiredness, one day last week I slept 20ish hours in 1 day. I have pain in my ribs and lower bone pain in legs but that’s been going on a few months.

I have a rheumatologist appt tomorrow so I’m hoping she will have some results 🤞 it’s a hospital away at another trust but I’m hoping that the computer system is playing ball!
Other than that next week is the week of seeing heamotology & surgery.

zhope you’re okay :)

Hi OP, good luck for tomorrow and please don't forget to take whatever documents you have in your possession with you so they can make copies if they don't have them in their system. Fingers crossed 🤞🏼

Hi @BetsyBobbin,

Thank you so much, good idea.
I made the mistake of ringing the cancer day unit to ask have my results come in. The lady said she needs to talk to a colleague and will ring me back, I rang at 4pm and heard nothing back.
Suppose I wanted to know were they clear or if they’re ready but I have to be more patient.

I had a letter in the post asking for me to come an hour earlier on the 7th for my bloods to be taken and some results back before my consultation. I think that’s standard practise though.
I’m not sure if I mentioned I worked as a lab tech for overtime/experience for a few years so I know when we had pods come in from CDU they’d be processed within 20mins - the blood count at least.

4.5hrs to go until hopefully some answers,
I haven’t slept 😬

Morning,

Good luck today, hope you at least get some difibitive news. And that your pain is managable today

X

Thank you so much 🫶🏼 I appreciate the message. I’ll update if I learn anything new - I’m hoping so, couldn’t sleep 😴

I’ve been following your thread and hope you got some answers today 🙂

Thinking of you OP.