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.

Just read your whole thread. Gosh you've had a terrible time of it. Well done for sticking with it! I'm so sorry that your workplace hasn't been supportive. I'm glad your cancer is treatable; horrendous that you can't have the operation for the endocrine tumour. Can you change consultant under Right to Choose?

@Grenola you've been so kind to me and I became aware I could be emotionally draining with my negativity so just kind of kept it in.
My friends death has hit me hard - our children were both born a day apart & it’s being treated as a murder.
I think I had a bit of a delayed reaction to everything, it wasn’t until I was offered macmillan counselling I thought, oh shit!

Bless you I hope your shift flies! Think of the extra Sunday pennies and take your breaks! (Easier said than done, I know) x

It’s certainly been a whirlwind, my brains struggling with it all, it’s the waiting between each stage that’s been the worst!

Re endocrine there’s only 3 surgeons in Wales and apparently it’s a “collective decision” so I’m stuck. Meanwhile my levels are increasing rapidly rather than the slow steady increase over the last few years.
Im a bit unsure what to do as all my consultants have written to them & now PALS say there is nothing they can do.

Work - that’s a whole other stress, I think I’m going to do a slow phased return but I’ve found my social anxiety (on top of my normal!) is unreal. I can’t even go to a supermarket, only hospitals. So that and getting some fitness back I need to practice on.

Thank you for taking the time to read, I know it’s become super long! 🙈 all my whinging! 🤍

@ThemysteriousH please you are not a drain. If I didn’t or don’t have capacity I won’t read ect…. But I do have capacity so please message away.

i really wasn’t that long ago u lost your friend and being unwell will have delayed your grief a bit. Just feel everything I need to when u do. Life is so hard at the moment for u and nobody expected u to be dealing with all this shit show in anything other way (except HR!!!!!).

what does this week hold for u? I am hoping not much travelling to apps and some rest and hope your son (think it is son!) is ok because I can imagine the death of friend is impacting him too Spesh if he is friends with her child.

life is shit and hard and relentless. Some seem to glide thru, and others have a sliding scale or shitness!!

XX sending love

@ThemysteriousH please don't you ever think that you're a drain or whatever. You've got all the right in the world to complain. Please feel free to come here and vent as much as you want.

You’re so kind 🫶🏼
IRL everything just seems so hard and lonely and I hate being like this, it’s not me.

So I had my boys sports day yesterday which was lovely, I haven’t managed to go for years and it was my eldests last one as he goes to secondary in Sept!
Today I have a gastro appt at a hospital a few hours away. It’s quite late, 4pm, but hospital transport are still taking me which I’m so grateful for!
Then next Tues is the dreaded day of staging & plans going forward (& my return to work?!)

My friends death has hit them hard, especially my younger one, they both had LD but had a lovely friendship 🥺
Eldest has unfortunately been hearing all the rumours as the circumstances were pretty gruesome & everyone loves gossip as it’s such a small town 😔

Not been feeling too great I’ve been aching really bad and night sweats. I found a really interesting article case study on the correlation between my endocrine tumour/myleofibrosis and the affected blood tests and you’d think it was me! The pt had the endocrine tumour removed and it slowed down the progress of the CA! I know the endocrine surgeon won’t listen though 😔 but I’m going to bring it up next Tues.

How was your PICU shift? X

Thank you so much Betsy, you’ve been amazing since day 1 of my whinging however long that was!

I'm thinking of making a blog so it’s somewhere to document my journey physically/mentally (my anxiety/social anxiety is the worst it’s ever been).
That way I’ve an outlet. I do write diaries but it doesn’t do much!
Hope you’re well x

Morning

I'm coming to the end of a night shift... A heavy few weeks in Picu. I'm tired!

My son is also starting secondary school in September and it's stiring up a lot of emotions! Such a big move isn't it and it's making me reflect a lot.
I still feel sad we didnt make it as a family tbh. Milestone eh!!

How u feeling?

I really think you need a new team to manage your endocrine stuff, one that is proactive and will remove the tumour and see how it is impacting on your wide heskrhbissues. I cannot believe he doesn't want to improve your quality of life anyway, let alone help manage your new condition too.

Keep sharing anyway, and. Blog is a good idea! I did one for a while when my youngest was born and was in the NICU and I got his diagnosis of down syndrome. It gave me about outlet but also helped me to share things with everyone in one place but sending people the link xx

Hi @Grenola,
I take my hat off to you - I really couldn’t do PICU, you’re such a star ⭐️
Has it settled at all?

oh my goodness it’s so emotional isn’t it! It’s a mad few weeks now of leavers concerts, transition days, sorting uniforms!

My youngest (with ALN) has been poorly off and on over a month, everyone told me I was over reacting and he just didn’t want to go to school (he’s been bullied for his differences and tics) - turns out it was a UTI and turned into a kidney infection so the mum guilt is unreal. On 3rd lot of antibiotics for him 😢 I asked his dad when he was there in half term back in May to get him checked out and was called neurotic.

Health wise I think the boys have kept me busy but in the background the pain im feeling is awful.
Still lots of mishaps and bad luck with my care. Countdown has moved to 16th July for a whole host of reasons.

I finally started the blog! Only done a couple posts and not many followers but the comments from people that I don’t know (like yourself and Betsy) have been getting me by.

That must’ve been so hard having a child in NICU 😢
DS2 needed it but only for a few days, jaundice - and something I’ve never mentioned IRL, but withdrawals due to all the medication I was on. Something I actually wasn’t warned about! Back then I wasn’t in my profession either so it was new.
Just seeing all the other poorly family’s made me want to help, I felt awful we took up that space.

Hope life is going well - and the next few busy weeks with our primary school leavers (😢) go well! H x

Hi OP, how are things going with you? X

Ooo I'm so glad you listen on here as j couldn't find the thread to check in!

Hope your ok xx

I’m not too bad thanks, it’s been a chaotic few months of treatments and constant testing, October things look to calm down.
Thank you both for checking in, so sorry it’s taken me ages to come on here and update x

More to the point, how are you feeling?** X

I've just read your whole thread and oh my goodness you are one resilient cookie!!

I now feel terrible about complaining about the (very minor) issues I have when you're going through all of this

Did you ever get anywhere with your PALS complaint?

I hope your work are treating you better now

I just want to say that I think you're amazing, you sound like such a lovely person and I'm hoping you're having a better time of it now xx