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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:
Original poster
GoodnessKnows · 29/12/2013 23:01

Thank you. Planning to listen to the meditation cd again ;)

OP posts:
revivingsnowshower · 29/12/2013 23:53

Hi I hope I didn't annoy you or your dh with my answer to your aibu. If I did please forgive me I wish you both all the very best, and hope you are getting along together ok. Please keep coming on for support and let us know how you are getting on.
To cheer you up i found another funny thread if you missed this one funny
Cake and Wine to you and your dh x

Original poster
GoodnessKnows · 30/12/2013 05:27

Hi Reviving. I'm a bit confused. Did you just look me up to see what was actually going on for me (and for my DH & family) and feel bad about your response on another thread?
All pointers to amusing threads are most welcome, by the way.

OP posts:
Original poster
GoodnessKnows · 30/12/2013 05:32

Reviving, I wasn't at all offended. It was a good idea, thank you.

OP posts:
Rosa · 30/12/2013 08:34

Hows is the meditation CD going ? Does it work and how are the nights? Must be hard to keep up a 'fron't infront of the Dcs?

Original poster
GoodnessKnows · 30/12/2013 08:54

Fell asleep to it again last night. Have been awake since 5ish. Not bad (all relative). But tired. Should've listened to another one ...instead of going on MN then. My DCs are active and little so there's no time to be too honest about my feelings. It's like not having time to drink 'that tea' or go to the toilet. Mummies' needs go in hold. Lol it's around others who I don't know I'll find it hard, I imagine.

OP posts:
cjel · 30/12/2013 09:32

Morning GOODNESS, Only just found your thread and am useless as have no advice to give but didn't want to read and run.
Hope you feel ok this morning.xx

revivingsnowshower · 30/12/2013 12:43

I know my post on aibu wasnt exactly offensive but i started to think after posting maybe i should not butt in. I know you asked but i generally like to stay out of peoples little disagreements with their partners. I don't think people always appreciate my advice on such matters lol. But glad you are still going to keep posting on this thread as now i know about your situation i would like to know how you are doing.
one thing with littlies it is easier to reassure them if you put a brave face on. My dd is 9 and when i had a bad back she was really worried i was worse than i told her and would end up in hospital.

Original poster
GoodnessKnows · 30/12/2013 14:10

Thank you cel and reviving. Good news is: they gave the biopsy results. Bad news: they won't tell me.

OP posts:
Original poster
GoodnessKnows · 30/12/2013 14:12

I've an appointment to see a second opinion guy tomorrow. Someone I've heard great things about. He'll have the results as I've asked consultant 1 to pass them to him. I feel like I'm managing my own anxiety by doing this work. I'm convinced it's benign as they said it looked it and I can't concede it's anything else. Thing I'm worried about is the op and ... all that it entails

OP posts:
revivingsnowshower · 30/12/2013 14:28

Great idea to see second opinion guy. In this unusual case you want to be sure you are getting the best treatment. Also as you say at least you are doing something. To be honest best they don't just give you the results but discuss with you in person. You may need some clarification of the result.

Original poster
GoodnessKnows · 30/12/2013 14:42

True. But if it's benign, I'd like at least to not have to worry about that aspect. Secretary says she's going to ask him to call. After 4pm when he pops in. Waiting Smile

OP posts:
ancientbuchanan · 30/12/2013 14:45

Op,

Read this and want to wish you the best tomorrow. My experience with seriously ill DH and Ds is always go for a second opinion and pref from a teaching hospital where they seem more prepared to think laterally and be honest about what they do and don't know.

On pain relief, be aware that amitriptylene can trigger epilepsy. But with a shattered leg, sciatic pain and damaged coccyx I found a tens machine useful. Radios 3 and 4 are quite soothing in the wee sma's. You will be able to time the dawn chorus after s bit....

Will light a candle in my mind for you tomorrow.

ancientbuchanan · 30/12/2013 14:47

Check when you are speaking to him that he has passed the results on, sometimes there are glitches.

cjel · 30/12/2013 15:51

Smile waiting with youx

Rosa · 30/12/2013 15:52

Bet you are sitting glued to the phone. Fingers crossed

Original poster
GoodnessKnows · 30/12/2013 18:12

Consultant who organised the biopsy just called me. Hooray!
He (rare tumour man) can work with the consultant I've heard good things about (neurologist and 'spine man') and is more than happy I meet with the neurologist, as I'd arranged, tomorrow. Phew! Bloody phew! Says wait times at RNOH are worse than at Wellington but place is up to me. They can only be sure that it's not a nasty v aggressive cancerous tumour. He doesn't know whether it's benign or malignant though as is v difficult one to test without first removing it. Huh? They'll only know it's not malignant for sure when they remove it. They won't know until op whether or how much it's intricated itself in nerve sheaths. If possible, they'd like to remove the whole thing. How can they not know whether it's cancerous? Biopsy Man told me that it (tumour) was made up of same substance all the way through so they only needed to take a sample from its edges. Either it is or isn't. If it's not a nasty aggressive cancerous one - are there friendly ones? Casper the ghost types? Hmmmm Don't get it.

OP posts:
revivingsnowshower · 30/12/2013 18:27

So glad they phoned and that the two specialists will work together. It does sound strange they cannot say if tumour is benign from small sample, but perhaps they look at how it is growing or something to tell this. But at least it is not the very aggressive kind. I hope you can get some proper answers soon and the op can be arranged soon. Wishing you lots of luck x

cjel · 30/12/2013 20:04

I think sometimes they don't like to say fro sure incase there is one cancer cell hiding in the middleConfused

It sort of sounds good news though doesn't it? How are you feeling?x

ancientbuchanan · 30/12/2013 20:26

Good, excellent that they got back.

There are nasty aggressive and plain nasty.

And benign but inconveniently sited, and benign where it doesn't matter.

I've had to get into this.

With any luck it's benign but inconvenient, it doesn't necessarily sound as though it's the last, I'm.afraid. But they should be able to shrink, remove etc.

Very very best if luck. Can you take a list of questions with you that you know you will want answered? That way you can check you have covered much of what you want to discover. I email updates and question in advance to our consultants, usually.

Will be thinking of you.

Rosa · 30/12/2013 21:46

Good that they can work together - two heads and all that. Good that its not a nasty aggressive one... They don't want to say it is a benign one incase on removing they find its not... So what time scales are you looking at for the OP??
Some answers and you can maybe get some more tomorrow....write them all down even the ones you think silly.
Double crossed fingers for you....

Original poster
GoodnessKnows · 30/12/2013 21:52

I'm writing (adding to) my questions. I'm also hoping that the appointment isn't a 15 minuter as we may be there for some time, despite them knowing nothing more than they did before! Thank you for your responses. My head is to full and cloudy to remember your 'names' but I may well be in touch with those of you who have offered tips. In fact, all tips welcome!!!!

OP posts:
ancientbuchanan · 31/12/2013 16:28

Hope it went well.

Don't forget to use us as a safety valve if you need.

Original poster
GoodnessKnows · 31/12/2013 22:35

Thank you. Just come home from the rainforest cafe. Lovely evening. Had a lovely time. Excellent man. Total faith in him.
Biopsy was inconclusive. They want it out so to be sure of what it is/ isn't. Hmmmm
I have to have an MRI if my entire body (1.5 hours) and a CT scan on Monday. They want to operate within about a month.
I do feel happy and more confident having the new guy on the job. He can't operate alone at RNOH. If I have him alone I would be operated on at The Wellington. If I want to be seen at RNOH, he'd need to do it with the other guy who is wonderful too but not someone who I've heard has done this little jobby in this location before. So I'm not sure what to do as man 2 is more than capable single handed. But Wellington doesn't have as good a reputation. Anyway, am a bit nervous about the lengthy MRI and CAT. Hope to gd they don't find any other nasties! I'm glad they're checking though as it's made me a but paranoid.

OP posts:
ancientbuchanan · 31/12/2013 23:42

Don't worry about the MRI and cat. I have had to have quite a few if both. Although the clanking sounds are boring and a bit intrusive, I close my eyes and use it as me relaxation time. Sounds odd, but if you are full on work/motherhood.etc you don't get much time where you can either think or just sort of doze without thinking. At one of the hospitals I go to you can have the radio or music on which also helps.

Sounds as though they are being eminently sensible. If you can get him, albeit in partnership, in the hospital you prefer, is that the better option? You could go on the net and discover opinions ( but avoid Dr Google).