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.

I don't mind being called Madi - I am pretty bonkers & you may have inspired a name change for 2014!

I have had a lovely day - just me & DH, low key but still special - it's our 29th Christmas together!!!!

Wow. 29th. That's fabulous.
I'm pissed off. It's. 3.30 and I've been up for a while with hip ache that's rapidly going to be renaming itself hip pain.
I'm annoyed. I'm lying here wondering what the hell is wrong with my hips seeing as the tumour is in the bottom of my spine. The bone at the sides of my hips has slimmed down over the last few weeks along with this achey pain on the arse stuff that's been keeping me awake for months now. I'm fed up. The consultants were not interested. They care about the tumour and getting that out. It's their priority and they weren't interested in the real reason for me visiting.
Grrrrr. Having seen the chronic bone erosion, im wondering whether it's safe to lie on my ( aching) sides. So many questions racing through my mind. I haven't even had an appoint mn with my GP since initial diagnosis with the consultants when I was turfed out with the news. It's shit. Took my consultants' letters to the GP surgery and hit a call from my doc to say 'sorry - we could never have known. I can't even spell it as it's so rare but if there's anything I can do'.
Yes there is. SEE ME ffs. Hold my hand. Tell me it'll be alright. I didn't want to waste his time by making a face to face appointment after that as .. what can he say / do quite frankly. I'm angry and feeling desperate. The consultant I've been redirected to is an expert in knee replacements and tumours vs spinal degeneration and rare tumours. I feel I have more confidence in choosing a hairdresser. I have heard of another but won't have the results before my first appointment with him. I'm in the shit here. Help!

Shot in the dark but is the hip pain connected to the tumour as you said it it is pressing on nerves ? Have you any form of pain killers nurofen etc and have they told you dosage to take? If the pain is getting worse then they should give you something to help. No you cannot 'suffer' for the next 10 days until they discuss. maybe yes call your GP. And ask for better pain management .
Hope you managed a nice day and your dc were spoiled and appreciated being spoiled...
Get downloading stuff so you can watch in the night hours and try to take your mind off things .. I know easier said than done.
From DD - What did the fish say when he swam into the wall ? - Dam !

Loooove the fish joke.
They say it may be. I just remembering the image of the bone erosion and worry that the ache is weakness in the bones and that they'll snap. Riduculous I know it's such a long wait to hear this care plan. 8/1 I reckon. Grrrr
I will make appointment with GP as soon as surgery is over Xmas.
Are you hanging a lovely Xmas? Remembered everything you need?

Having. Lol

Hi, Goodness. I'm sorry to read about your worrying condition. I don't know much apart from what you've said, about your condition,but I do know about waiting for results, esp over Christmas and it's PURGATORY!
Try not to let your thoughts run away, but I agree that from what you do know, you shouldn't be left without recourse to some painkillers.
I was having tests for breast cancer over Xmas a few years ago and thought all kinds of things, but really only knew anything when I got the results.
I can only offer some handholding and say when they come up with a "plan" for you to rid you of this blimmin tumour you'll probably go into a different mode and feel a bit more proactive. You're doing everything right at this moment. Try, if poss, to enjoy Christmas and take it easy.
Love, Helza

Thank you Helza. How are you now?

Thank you Helza. How are you now?

Tip top, Goodness. I was living in America, there with hubby's job. First post 50 mammogram I found out I had breast cancer. I had a lumpectomy before Christmas and chemo and radiation after. It was a "subdued" Christmas. That was 2008/9, so I'm up to the five years all clear now.
It was hard going, but sooner or later it's all in the past and that's a good feeling!

I just wanted to say, that as with most medical problems, you will benefit from the acres of knowledge and research they've made in treating your condition. I can't promise a perfect outcome, but it will be the best possible, and you sound in really good hands.

I am sure there is a better painkiller for you goodness on the backpain thread a few people recommended amitriptaline for leg pain due to nerve damage and said it helped them sleep through the night and if you can take this it might be worth asking your dr.

Helena, it's so heartening to hear you're doing well and have the 5-year all-clear. I'm in rather a negative thought Soave at the moment (it's such a rare tumour, is this the right consultant, etc.) but you're absolutely right about progress, etc.

Helza not Helena. Blummin' auto correct. Lol

Reviving, thing is that I dint have ANY pain now really. It's a moderate ache. Like bruised muscles. Not worthy of any painkillers. The pain is emotional and mental: when I wake aching at night, I know and think about what it is. I'm really anti pain killers n sleeping tabs as I've an addictive personality and don't want to become dependent. I'll take medical advice after the op though.

Goodness, you've said a few times that you are a drama queen and feel you are being self-centred. To me you seem incredibly well balanced.

Good luck with the results.

Always someone here to chat, or hand hod.

Fionas. Thank you. Means a lot. Really does.

Oh I see goodness I got the idea it was the pain waking you up. The middle of the night is the worst time for worrying and pain as nothing to take your mind off it. I expect you are right to avoid painkillers as much as possible, but don't suffer if you are really bad. If you really cant sleep it may be better get up for a bit and get a heat pad or hot bottle to put on your hip, have a warm drink and maybe do something to take your mind off things.
Hope your Christmas is still going well x

Thank you. Having a lovely Christmas. It's really lovely to have arranged to see people and do nice things with the children. Takes me out of myself and it's great. Evenings are hard. Tonight, I've armed myself with a pillow speaker and DH is putting a meditation on my phone. Fingers crossed!

Goodness, it strikes me that you would really benefit from some more sleep. Night after night you are up at silly-o-clock posting your fears. It must be so lonely for you.

I second the hottie for aching. It really works. For very safe occasion asleep aid try Nytol tabs. Not the herbal ones. They contain antihistamine and really can help especially with a large glass of wine.

Also, your GP has offered help...get on the phone on Monday morning and get an emergency appt to discuss all this. Ask for support, please.

Am I correct that you have concerns that you may have been referred to the 'wrong' consultant? If so, when you finally get to go along it's perfectly ok to say 'naturally I am anxious that the top expert in the field should be treating me, please can you help me with this?. With something this rare it's highly likely that the tumour will be discussed with the MDT and the best specialist consulted. There is no problem at all with asking the question.

I hope you can get through the waiting as best you can with lots of support and chocolate.x

Matilda, you're bang on with all of your observations. I'm contacting my GP on Monday morning it ask.
Is nytol herbal the one with antihistamine? If so, I'd consider taking it. I have rashes at night on my legs so it may help with that, too.
I'm going to raise the question with the consultant when I finally get to see him, too! It's likely not to be until 8/1. Ridiculous. Why did they get me to do the biopsy knowing I'd not be given the results until 8/1. It'll be almost a month of waiting. Grrr. I think that boxes to tick (turnaround times) in this instance, are more important that emotional states. If I've not been contacted because it's benign, at leeeeeeast it'd have been considerate to gave told me about that but. In the meantime, I've lost my balance in a couple of occasions and been hanging loans that shoot from my back straight down into the back of my ankle. Seeing as this was one of the questions (pains in your legs) when I first met the consultant (to which I said "No.", and the concern was the unknown: is this A) benign and B) intricated in the nerve sheaths as well as the spinal cord, (the latter is definite), I'm ... concerned. They said if nerves weren't affected, they hoped to remove the tumour completely. Recovery has a better chance if tumour us less than 5cm, you're young and it's removed completely. Mine is 5.1cm (MRI indicates), I'm 41 and ... I'm unconvinced that the nerves aren't affected now.
The MDT meets about cases such as/ including mine on Fridays. Last week's was cancelled. I honestly don't know whether I'm panicking over nothing or should be seen straight away but Xmas is preventing that. Either way, nothing I can do but enjoy Christmas, try not to shout (or cry) too much and ... go to see The Railway Children.

Sorry, I wasn't at all clear there. It's the normal Nytol tabs in the blue box that have antihistamine. I find them good for occasional insomnia.

I would imagine it's perfectly possible that you are getting some minor nerve impingement from your tumour due to its size. It doesn't necessarily follow that the nerves are actually involved IYSWIM.

Such a total drag that you are left in limbo here. Enjoy the Railway Children. A fantastic excuse to have a little sob as the girl cries 'Daddy, my Daddy'. Making me sniff now!x

Lol. It is, isn't it. There's a time and place for everything ;) looking forward to it. It IS awful waiting, but at least I'm getting to spend lovely quality time with my family before the plan is presented and commences.

Another lurker here. You sound lovely goodness and I reckon I'd be feeling exactly the same as you. Am glad you can come on here and let your feelings out. No real advice to offer but I am rooting for you!

Thank you, juggle. Not being so lovely at times, more recently. Lol. More shouty and nit so great at screening my RL language around my children. Guess I'm feeling emotional and on the edge a bit. Hey ho. Feel like I'm being haunted by a very bad dream nightmare

That's ok. You are allowed. Better to show your children what real feelings are than to pretend I reckon. Hope you get a good nights sleep tonight.