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.

That really doesn't sound right, does it?

@ThemysteriousH I urge you to seek legal advice. I know you're based in rural Wales but if face to face advice is not available to you please ring every helpline under the sun and also your union, explain that your rep was off sick and couldn't make it to the meeting and that was the outcome, ask them if this is ok. We pay the union so they can help us when we need, it's not a free service, please don't be afraid to ask.

I would wait a bit more so you have the full diagnosis and all the correct paperwork to apply, this way they can't say that you haven't sent all the paperwork or worse, reject your claim and you'll have to start all over again.

When I applied for Pip the advice that I had was to say what my worst day was like, because everyone has good and bad days but if you write all the good things they're not going to give you anything, will they?

Hope you get to see someone who can give you more information soon.

I’ve been with the NHS 6 years maybe more?

I think the universe or whatever is out there is looking down on me, had my DS2 backdated DLA in my bank when I woke up - I was told Monday their would be at least another 3 weeks before a decision was made!

I’ve slept the most I have in days so I’m going to look into my pay etc today.

After 6 years, it’s 6 months full pay and 6 months half pay isn’t it? You need to get in touch with your work and sort that out but you should be absolutely fine for money for ages yet.

I think they took her for a ride but hopefully OP will have enough energy today to go after this, I'm rather incensed on her behalf quite frankly

I’m sure it’s 6 months full pay after 5 years as standard so OP will be ok financially. It shouldn’t take much to sort it out, it’s standard sick policy.

I’ve emailed asking for payroll guidance, on the intranet it says what you’ve all said on here.

I had emergency spinal surgery 14 months ago (caused by work) and had 2 months off then, not sure if that makes a difference?
I should’ve taken longer!
And it’s not within the same financial year.

They were 100% pushing me to quit yesterday (this was before my results), I felt so deflated. I didn’t have my children during the pandemic through the fright of it all, I worked 6 shifts a week, gave it my all, to basically just this.

I had emergency spinal surgery 14 months ago (caused by work) and had 2 months off then, not sure if that makes a difference?

As far as I know it’s a 12 month rolling year so if you had 2 months off, 14 months ago, you should pretty much be back to full entitlement now. Definitely not half pay after 6 weeks anyway.

Good news (ish!) - my endocrine tumour is being removed 2 weeks today, just had the phone call! Had it a while and been so unwell even though it’s benign on the PET-CT. It’s quite big surgery.

Then the specialist regarding the patch of cancer (the admissions officer said query BCC?) will be removed 4/4 as I need at least 2 weeks between.

Hepatology specialist scan today.

So all things are in motion on the way to being fixed! :)

That's great news, things are starting to happen. I'm happy that you're going to have that done soon. 🙏

Any news on the pay front? Did you get to get any more information and speak to someone about it?

Thank you, and thank you for your support throughout 🫶🏼

Yes sent email and rang payroll, they’re adamant, I’ve asked for the policy

Read the policy carefully once they send you. Or, can you find it in the intranet? Ince you get hold of the policy ring Acas and speak to your union too and see what they say, don't let this one go 👊🏼

@BetsyBobbin I won’t, I’m such a pushover, I’m still waiting for overtime from Xmas day 2020 🙈

DS2 has been accepted for DLA so that’s positive.

Happy to hear about the DLA but don't be a pushover, if not for your sake for the sake of your kids, don't let them get away without paying you right.

I definitely won’t 🤞
My endocrine surgery that I was called about yesterday and given the date 21/3 has been cancelled again. 4th time. Feel so deflated

Oh god, did they give you a new date at least?

26th April, I cried so much, she’s moved it to the 7th - hopefully.

Have to do another pre assessment because of my hospital stay.

So April is busy!
3rd - pre assessment
4th - nose procedure
7th - tumour removal. It impacts my hormones and memory etc because of the location, I can’t wait to be normal again.

As always thank you Betsy for your support. I don’t have much, if any, IRL.

I hear you re support, it's very tiring, that feeling of having to spin multiple plates and being afraid to drop them. But we're here, sending you good energy and hoping you conquer it all 🙏👊🏼🤞🏼🍀

Hopefully the surgery won't affect too much of your memory and that's one issue delt with.

It's OK to drop plates. I have three kids with ehcps. One is in transition for 6th form, one has just transitioned to secondary. My youngest has an emergency annual review on Friday in which I think they will expel her. I have done many SEN tribunals. I complain a lot. But recently I feel like my fire has died. What will be on Friday I can't control. I will deal with it on Friday. If its on fire right in front of me I will put it out at that point. I can put away my sword knowing I can pick it back up any day I choose. When I'm stronger.

All that matters is staying well, getting better right now. Everything else ( except your pay maybe) you can put down. Get better and be sure that your worry / fight another day totally under your choice, you set the rules.

Tick off your three appointments and just focus on them. The rest, you deal with when you choose. You have got this. One thing, one day at a time and before you know it, it will be done and behind you.

So sorry I’ve not replied and be MIA.

My son ended up needed an emergency appendectomy and having sepsis so it’s been a mad few weeks.

Had a letter in the post today - heamotology oncologist at the cancer day unit.
I’d almost forgot about everything as being mum comes first.
I think it’s the first time I’ve really cried.

Only thing is - all my appointments are on the same day all in morning all across 4 hospitals throughout S.Wales 🤦‍♀️

The oncology one I’ve a direct number on the letter but no answer, rang central appointment line regarding others and it’s now a long wait if I rearrange any for that speciality. I’ve not worked out what I’m doing yet.

I'm so sorry to hear about your son and hope he's on the mend!

Sending you a massive hug. You're really going through it at the moment 🙁
What a complete mess they've made of your appointments. Is there a consultant leading and coordinating your care?

Golly, you've had some bad times lately!
I hope your son is better now and that you get better news soon.

You poor thing. You really are having a horrid time. Are all the appointments with the same trust? I wonder if PALS could help sort if?

I'm so sorry to hear about all of that. Hope your son is on the mend now.

You seriously need help with all of that. Like a PP poster said PALS isn't a bad idea . Is there an advocacy service that you can reach out to? They can speak on your behalf. You can ask your GP as well to help coordinate the appointments. If they have an ounce of sympathy they'll help you. Please don't be embarrassed to ask for help. Sending good energy and praying for you 🙏

Hi OP, how's it going?
Thinking of you

Hi @BetsyBobbin

Sorry I’ve been quiet, Ive felt a bit meh since having the letter and seeing it in black and white that I’m going to the oncology unit has hit me a bit.
They've moved it to Tuesday so that’s not too bad, less of a wait :)

hope you’re ok, thank you for checking in 🫶🏼