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Original poster

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

606 replies

GoodnessKnows · 12/12/2013 02:53

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.

OP posts:
Dollfaced · 06/01/2014 23:47

Glad it helped even if it was just a little Goodnessknows.

Original poster
GoodnessKnows · 06/01/2014 23:57

Xxx

OP posts:
Original poster
GoodnessKnows · 07/01/2014 11:43

Called secretary to be told that unless results go through to day, my consultant will be away from tomorrow (spend of day) until 22/1/14. Aaaaaaargh. The waiting!!!!!!
They wanted the op to be carried out within a month. Now, looks like that ain't gonna happen n I'll not been have my latest MRI results for a while. I'm naturally anxious to get these back since they found something v nasty last time and this one was to check for anything in the rest of my body :0(head, neck, chest, upper spine). Unimpressed. More time standing on the plank. No way backwards. Don't much want to go forwards (scared of op.) but it's scary and unsettling standing. Feel wobbly.

OP posts:
helzapoppin2 · 07/01/2014 13:03

Goodness, how frustrating! I hope they manage to come up with your results , but I guess you are resigned that you may have to wait.
I had a PET/CT whole body scan a few years ago. I remember having to drink something that was not unlike warm soap suds!
I remember that "standing on the plank" feeling, it was even this time of year!
Anyway, just wanted to hand hold, and will mentally wish them to hurry it up!
You are a brave, strong person! Hang on in there!

Original poster
GoodnessKnows · 07/01/2014 13:27

Thank you, Helza. One consultant rang me. Didn't know other one was off on leave after tomorrow n that if be left dangling. He'll chase it up. I'm so glad he called me. Waiting.

OP posts:
helzapoppin2 · 07/01/2014 13:40

Glad they're on it! Hand holding.

BehindLockNumberNine · 07/01/2014 16:27

Glad they are on to it. What did the consultant that rang you have to say? Hopefully he was able to give you some answers.

Glad the scans were not too bad. I am hugely claustrophobic so the thought of it makes me shudder. Well done for managing a little sleep too!

We are all here with you in spirit Flowers

ancientbuchanan · 07/01/2014 19:57

Holding your hand to keep you steady on the springboard ( not plank) to better things.

Original poster
GoodnessKnows · 07/01/2014 23:08

Ancient, I do prefer the thought of a springboard vs plank. I certainly gave my ups and downs. Lol
The consultant didn't know that the other surgeon (they'll be operating on me together) was about to go on annual leave. He told me he'd come back to me with The Results (most recent MRI and CT) AND the op date.
I'm waiting to hear.
Familiar. But it was nice of him to call.
I told him, towards the bed of the conversation, that "I'd appreciate that as it's almost 12pm and I've not managed to shower or dress and I'm sitting on my bed with my 6 yr old in his room." As my voice wobbled, he got the picture.
Dreading school run 'How was your Xmas?' questions. Want to song (to the tune of 'a partridge in a pear tree': 1 X-Ray, 2 CT scans, 3 MRIs and a biopsy that was inconclusive. I think it 'works'. Try it. Catchy!

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Original poster
GoodnessKnows · 07/01/2014 23:11

Behind & Helza, much appreciated. Xx

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ancientbuchanan · 08/01/2014 09:36

I say

ancientbuchanan · 08/01/2014 09:38

Bloody phone.

I.say ' bit mixed but lovely to be with the family. At least we were/ were not affected by the weather"

Truthful and steers out of dangerous waters.

gingeroots · 08/01/2014 10:22

Goodness just quickly read this thread . Good Lord what dreadful timing - Christmas ,holidays ,leave .
So cruel on top of everything .

Just wanted to say - I had big scary op in August . Oesphageous and part of stomach out .Prior to op was terrified ,fixated on things that had been mentioned ( plus loads that hadn't ) like NG tube sewn into nose ,waking in intensive care ,thirst etc .

What I found was that the anticipation was far far worse than the reality .
I was dopey though not aware of being dopey at the time IYSWIM and not really aware of loads of stuff that I thought would be terrible .For instance I was woken in IC and still had ventilation tube down throat from op but I was barely aware of it .

The staff were brilliant - yours will be too .With complicated ops they have highly trained staff looking after you ,staff who will want to keep you calm and comfortable . Not least because that kind of patient is much easier to deal with ! And the surgeons will be really interested in your care and your progress and will keep a close eye on your treatment post op .

Crossing everything for early and good results from your latest tests .

Original poster
GoodnessKnows · 08/01/2014 20:57

Thank you, Ginger. I hope that you're okay now!? Thank you so much for your most confirming and supportive comments.
No results today. But I'm. Successfully getting on the nerves of the secretaries. Not my objective - but kind of inevitable.

OP posts:
itsnotreallymehonest · 09/01/2014 01:50

Don't worry about upsetting the secretaries, I am sure they are used to it, and they would be doing exactly the same thing if it was them.

Original poster
GoodnessKnows · 09/01/2014 05:56

I hope that they understand and realise that. I feel such an irritating fool scary time I call (daily when way using for results and consultant is away/ about to go on leave).

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gingeroots · 09/01/2014 10:25

Goodness - your GP might be crap regarding your diagnosis so far but will understand that anxiety and lack of sleep are not good preparation for a major op .

You need to sleep ,sedatives /sleeping tablets will help . The new ones have no hangover effect ,Nytol and Kalms both make you feel a bit dopey in the morning IMO .

I hope the secretaries know your situation .

Consultant on holiday !!! Surely there'a a system for delegation in cases like this ?

Original poster
GoodnessKnows · 09/01/2014 11:28

Can get results while he's away but he's the surgeon to operate with the offer one.
Just treated myself (thank you DH) to a head, back n neck massage. Feeling wonderful. Results better come today. Fingers crossed - but feeling better while waiting after that treatment. Only ever dove that on hen day and on special holidays ;)

OP posts:
gingeroots · 09/01/2014 11:54

Massage great idea . Well done both of you .

Original poster
GoodnessKnows · 09/01/2014 21:49

It really was. Came out to the sound of refurb. drilling in the spa rooms. Reminded me of the MRI I'd had twi days previously and took me right back to it. But it was still wonderful.
Really wonderful.
I waited, to no avail, for the MRI results today.
Nothing
I called his secretary twice. She said I wasn't to call her - that she'd call me as soon as she had the letter and would email it to me.
Nothing
He's now on annual leave until 22/1
I want the op date and the results of MRI number 3
Horrible. But then, I don't want the op either. I just want to crawl back into the state of ignorance I was in 4 weeks ago. But I can't. It's wait and be anxious, confused and in disbelief. Or have a date and get this terrifying show on the road.

OP posts:
gingeroots · 10/01/2014 09:11

Oh that's torture ,I'm so sorry you've not heard .

It seems wrong they can't give you a date for the op as you're having it regardless of results . Could the other surgeon at least give you an idea of dates ,if not specify one in particular ?

What thoughts on sleeping tablets ? Nag ,nag . Feel free to ignore me - you are so entitled to do and say exactly what you like !

Original poster
GoodnessKnows · 10/01/2014 09:29

I'm not into sleeping pills and will reluctantly but readily take painkillers when necessary. I'm trying meditation CDs and aps and have ordered great speakers in a headband.
I agree re irrelevance (as far as I can see) of op date to MRI ct results. I'm thinking it's rubbish and tempted to make sexist comments about men being only able to focus on one thing at a time. But I didn't and would never say that. Of course.

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Original poster
GoodnessKnows · 10/01/2014 09:54

I have a date.
28th January.
My DH will be in India.

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Original poster
GoodnessKnows · 10/01/2014 09:56

He's changing that to be home on 25/1. An anxious week.

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Tobermory · 10/01/2014 09:58

Goodnessknows, just read your thread. Sososo sorry that 'this' is happening to you and the lack of date for the op must make it worse.

I recently had an op, not as serious as yours....no morphine for me.
But I can emphathise with the issues around waiting for dates and was messed around quite a bit. Once I was in though (nhs) it was very busy but the care I received was very good.