Yesterday, I found out that ... and I'm scared.

[GoodnessKnows]

I will be brief as I feel like I've entered a time warp where my brain has frozen, incapable of long sentences:
Had hip pain and have been waking at 3am most nights with back pain (not terrible) for about 1-2 years.
Thought I needed a firmer mattress.
Finally went to consultant.
Two MRIs and an X-ray later, I was ushered into a private room having just been told that a large tumor is at the base of my spine.
They called me back in within one working day of the second MRI.
I'm now waiting for a biopsy which will be on Wednesday or Saturday of next week - to determine its 'nature'.
Scared
Shocked
There was talk of chronic bone erosion in the lower back as a result of this thing. Also discussion of nerve paths and tumors, rare cases and cups of tea.
Now, lying awake as usual in mild discomfort, I'm in utter shock and disbelief.

Yes it does but can't identify with the symptoms apart from nerve sheath tumour and suspicion that it's fibromatosis. Don't know whether that's same as neuro version. I'd think so.
How is la France, sausage?

Hahaha
Thought Sauvignon was a posh sausage, hence calling yuu'sausage'. You'll hereby be known as Wino

I can live with 'Wino', it's very appropriate!

They can clinically diagnose NF1 if you have two out of six criteria. I have plentiful cafe au lait birthmarks, and groin and underarm freckling which is what made them immediately suspect it (they spotted the cafe au lait birthmarks on my 6month old DD and asked if I had them. I am 42 and had these my whole life and never knew they were indicative of a genetic disorder!) but as both my DC have these birthmarks, and my dad it indicated something. Fortunately they did genetic testing to confirm it rather than just clinically diagnose even although I did meet the criteria.

Sorry for waffling, but to cut a long story short it might be worth asking for a genetic test (depending on what the tumour is). I had never heard of neurofibromatosis before but it is the most common genetic disorder in the world and 1:3000 have it. I found lots of support on the inspire forums (they have forums for lots of different things, not just NF1).

I had to wait three months after the doctor said he suspected it until I could get an appt with the geneticist, and then another 10 weeks to get the blood test results and I have legius syndrome not Nf1.

There are lots of positive stories of NF1 on the net, I spent six months googling myself into a frenzy and speaking to lots of people online as I thought myself and my two babies had it. The centre for Nf1 is in London (and one in Manchester too I think)

I know you don't know yet but I just wanted to offer a hand hold and say if it is Nf1 then there is help and support out there xx.

Ps, I also have 10+ lumps under the skin and they weren't sure if these were neurofibromas or lipomas.

Thank you so much. I have no unusual freckles etc. so I'm confused. Only info on one of the nfs and said there's be lumps on skin. Anyway, iF it's fibromatosis I'll mention this to consultant.
You must have been beside yourself with worry. Desperate. Big hugs for that- I know it's too late for them bit I'm sure they are still needed after such a traumatic and extended period of waiting. I'm getting used to the waiting game too.

Wino it is then ;)

All my lumps are under the skin, not on top which caused confusion too.

The worst part of it all was the thought that I had onpassed this condition to both the DC (they each have more than six birthmarks). I hated myself and was in a right state about it. I couldn't concentrate on anything for half of last year and became very withdrawn and anti social and spent pretty much all my maternity leave stressed and crying. It turned out ok in the end but I will never get that time back.

If you do have à form of neurofibrimatosis 1 or 2 then you will have got this,far in life without knowing which is à positive. From what i can gather the more serious cases can start at puberty when changes in hormones start.

What really helped me strangely was doing colouring in! It really took my mind off things doing colouring in for grown ups!! DP didn't want to discuss it (very much why worry till it happens but I am the opposite!!)

I know I am waffling but offering a hand hold xxx

Yup, Goodness, how's it going today?
Your choices. Looks like between a rock and a hard place, so won't say anything until you know what you're facing.
I hope you are not too painful at the moment.
I went to see DS2 in the panto last night. It was the last night so he (the Dame) pulled out all the stops. Lots of dyslexics are actors aren't they? It seems at last he's found his natural habitat, on a stage.
I hope you're getting lots of visitors, and your children are reassured that you're on the road to recovery.
Just to let you know I haven't deserted you!

Thinking of you.

Lovely to 'see' you three. I've forgotten your pseudonyms already. Dyslexic people are often very creative and hone their articulacy through the spoken word and entertaining, art, sports (if no crossover with dyspraxia), etc.
dame sounds fabulouso! How proud u must be

Helza. You're spot on. I thought the rock would be bad but now I've heard about the hard place, I think the rock may be preferable.

Multiple messages as nooooo memory at the mo so looking back at your lists.
Youretheonkyoneiknkw, thank gd I've just opened my scaredy cat eyes wide enough to read that you have NF. Can't remember whether you have 1 or 2. Could only see symptoms for your type inline. Lumps, colours, etc. don't think I have that. But if turn out to have fibrimastitis, would it be the sane? It's a nerve sheath tumour. What're the symptoms of the other NF? Scared to ask

Hi, Goodness, it's so funny what goes through our heads in this type of situation. What if it's this and what if it's that? Would I prefer this to that? We end up doing all kinds of bargains and compromises within ourselves, and going quite dotty. It's almost a relief to find out what it actually is, because then you know what can be done about it.
Thank you for your insights about dyslexics. It must be so frustrating to know you are clever and all that, but not be able to show it in the usual way of writing reams of essays. I was an Art Teacher, a subject which was a great relief to some of my students as it relies on a whole other set of skills to most subjects.
Which reminds me, better go and do some drawing!

I thought I'd had a good day.
Walked unite a lot - albeit like an old lady, not so faint, great BP, friends visited. Now this:
I've been sitting in the loo for an hour enough trying to push out poo number two (in a week) to now know it's helaemarroids. Bad case. From drugs causing constipation. It's shit. Literally.
Laying on bed feeling v low.
Waiting for doc to examine my bottom!

I know I've got to see wee doctor (chronic stress incontinence), physio, bloods guy (calcium, Vit D, thyroidy stuff), back man, tumour man, etcetera.and am waiting for results to see whether I bed to meet Rare Fucking Aggressive cancer treatment-needing tumour Lady... But now, I've got great big mega-poo sized haemorrhoids.
These ones ain't gonna shrinky dink away in a hurry, apparently. Nurse reckons it'll be treatment necessary for it.
Felt so happy today. Been making so much progress. Upset. Could burst into tears. But no ones here to give me a hug.

Goodness - just wanted to say that I am sorry you've had a tough day after you felt you were making such good progress. Hugs to you and hope you get a good nights rest and that tomorrow will be a better one for you.

Thank you. Xxx

Oh dear! I hope tomorrow is better than today turned out to be.

Day ended on a high. Walking
Visitors
Less dizzy
BP good

Last night: hell

Pain
Waking every 30 minutes
Stayed up waiting for bum inspection (suspected horrendous haemorrhoids)
Doctor arrived at 1.30am
Told it's tags
Waking every 30 mind after that with nerve pain.
Still in pain
Apparently this is my reward for having done Physio and walked.
Can't keep eyes open and know I have to do Physio today. Twice. Lengthy. Can't move for tiredness. Exhausted
My gd I feel like a truck has hit me

Sorry you've had a difficult night. Hope the physio gets easier and pain relief is effective. (gentle hug)

Oh Goodness, I am so sorry you have had a rotten night. My hand is still here for squeezing x

Oh you poor thing, I'm here for hand holding duties, also sending love and strength for the day. x

How's it going Goodness? Are you bearing up?

Goodness I'm worried about you . From your posts here and on Tamoxifen thread you sound as though you're getting increasingingly depressed .

And I relate to that scary ,abandoned feeling about being discharged home .
Make sure you quiz them/pin them down about who ,when etc to phone if you have concerns .
And it doesn't sound as though they have your pain under control - this really should be a priority before they discharge you .

I feel that you will really not want to go down this route but please don't rule out the idea of anti depressants . You have so much to contend with at the moment and they will help . And if you're anything like me staying clear of one substance because you're worried you'll get addicted will only lead to your clever body finding a substitute to cling to as an alternative .

Forgive me for posting this and I appreciate it may offend you ,I just want you to get some help .

Thank you everyone. Please don't worry, Ginger. I'm using MN and a secret FB group that I've created as my particular 'keep out of the lonely black hole' antiDs. They're working. Can't say that they're not addictive though! Lol

Since my last post, we figured out (dragged out of nurse who'd fobbed me off that meds hadn't been decreased) that I'd not opted to take the quick acting painkiller that may be what had helped me to sleep the eve prior to 'every-thirty-minutes' night. I wasn't in pain when it had been offered, so had declined.
Took it last night. Wahey! 5.5 hours.
Will do so today. So let's hope!
Once I'm stable and ready to PURPOSELY reduce certain meds., I'll inevitably go through that sort of thing again and have to backtrack to discover what does and doesn't work/ what my body is ready for.
I'm thinking if keeping my stabilisers on, for now. Today is my first day home (arrived at 5pm).

I must stress that before hospital, I wouldn't even take a paracetamol unless I'd had a rare and most awful headache. It'd drive my family nuts!

Now, here's my DAILY MEDS MENU:
(IF NEEDED. Up to 4 x a day (every 2 hours LEAVE ONE for night) oxynorm. Already charted)

*On empty stomach as wake: 1x Omeprazole
8am.
Gabapentin x 1.
Paracetamol x 2
Thyroxine x1
Oxycodone x1
Movicol x1 or 2 sachets
AFTER Banana. 1x ibroprufen

12pm
Paracetamol x 2
Movicol 1 or 2 sachets

After lunch:
1x ibroprufen

2pm Gabapentin x 1
Docusate-sodium x 2 caps

8pm
Oxycodone x1 MISSING from Saturday!!!!!!!!!!!!!!!
Paracetamol x 2. MISSING COMPLETELY
Replace: Wednesday 8am oxycodone 5+10
Replace: Wednesday 8pm 10pm ALL.

10pm
Gabapentin x 1
Amatriptyline x1
Paracetamol x 2
Docusate-sodium x 2 caps
Senna x 2
After banana. 1x ibroprufen

Just before sleep:
Oxynorm x 1

I should've come home and rested, non?
Non.
This is a copy of my loooooong and boring secret FB friends group post. It explains what I've been having to sort out since being home - not able to lay down all day:

I am on a LOT of medication.
I think that I showed you a photo earlier.

I'll post at the end of this thread my daily menu of drugs and you'll get a glimpse.

I arrived home (had to stop car to take emergency painkillers but fine other than that) and was anxious to pop in to doctor's surgery en route. My objective was to ensure that the tablets (the majorly important nerve pain ones) don't run out on Sunday, leaving me with nothing to take from early Monday morning. They're on,y prescribed for 5 day periods as they're 'high controlled drugs' (addictive).

Sorted. Felt very organised. Until I realised that the hospital had discharged me with NO PRESCRIPTION for the ONLY quick acting nerve pain drug that I have - which also is the one to top me off (complete with jitters) and LET ME SLEEP fir 5+ hours vs being woken in pain that increases severely and rapidly every 20-30 minutes. This does not lend itself particularly well to getting any form of sleep.

It is going to run out in TWO DAYS. The doctor, if he HAD the prescription sheet from hospital, wild take a minimum of 24 hours to process it in readiness for the pharmacy to dispense. The pharmacy do not stock these drugs and would need to order them in once they have RECEIVED the prescription from the doctor. It will not happen in two days. This is why they ought to have sent me home with 5 days' worth of it and ... have it listed along with the page-long list of others.

I called RNOH to explain and politely ask for/ demand that they provide more than two days' worth of this drug AND put it on the list of those for the doctor to prescribe.
"You've been discharged now, so you'll have to go to your GP."

I stated clearly that this was their responsibility and absolutely impossible. Nothing. They told me they'd get the General Manager call me back. He has not.

Silly error on their part? Possibly. The drug omitted from the list to pass onto the doctor has the same name as a slow-release version. There are two slow-release ones in different doses to make the required 15mg (a 10 and a 5mg).

I'm sure that I've 'lost' mist of you by now.

In short: no medication after Friday to allow me to have pain relief or to sleep. And no prescription even for the slow-release one beyond 5 days. J

It's a MAJOR error.

But NOT THE FIRST today.

A bag of drugs was eventually brought to me. I asked, overwhelmed, whether they'd explain what to take and when - which were optional and which were important. Veronica (Senior Nurse) did do so. I do love her!
On going through it, it occurred to me that she'd not mentioned the names of the two/ three nerve pain meds. I raised this and she agreed... they were missing.
What if I (yes, I) hadn't noticed this? Oh my gd. I've experienced this pain and ...

It was rectified but they'd only put one of the nerve pain drugs on the amended list for doc. and packed me off with insufficient quantities. The 5 day ones were going to end in a Sunday. It's Thursday tomorrow, so unless wonders had been worked, nothing would have happened in time fir me to have medication.

Anyway, I've been busy. Still no call from RNOH. Once discharged, that is it. Find your own physio and pain team, too.

I AM EXHAUSTED. And angry.
Again, I ask myself:
'What DO people who are shy, old, young, unaware, drugged up' DO?'
I both fear and feel for them.