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.

Firstly, please excuse my multiple mini-responses. I can never remember every name and message and don't want to leave anyone without a response as each one means so much to me - hand holding much appreciated and all comments help me to go a little less... nuts and to feel far less alone.
Turnips, I can see that you were awake in the early hours again. Working shifts or bot yet settled into 'mormal' sleep routines?

Rudolph, thank you. Isn't it awe rid state to be I though? How are you now? I hope that you're 100% now. Do they need to be monitored?
I had a molar pregnancy (nothing like BCor what I have now) as tumours didn't turn cancerous, thank gd. But, being monitored for over two years was ... shitty enough. I remember the relief when it was stopped. Unless I fell pregnant again, they said there wasn't a chance of reoccurrence (tumours growing). Two children, a girl and a boy - enough. And now this. Shitty shit. Can you hear the self-pity? I'm embarrassed to type this stuff but it's how I'm feeling.
I got to sleep in a bit today- and when I woke up, I did worry and lie awake frightened, but not for long. Instead of waking at 2-4 or from 4 onwards, I woke properly at 8.30. 8.30. Hooray.
My mum n dad have the children overnight. Really lovely of them. I asked. I was going out of my little mind last night - desperate to get out n be normal while I physically FEEL normal - vs sit, worry and cry.
Went to cinema. Was quite good (Mr Banks). This morning, self-assessment tax forms and present wrapping. Yay! Lol
My DS is being adorable, writing Santa letters I his 'bestest writing' (which I'm so proud of as he had to ch age schools - suspected asperges and was treated like poop at his (not so) 'outstanding' state school.
My DD is just a chocolate button. And I hope to be here running after and playing with them as time goes on. I worry about them seeing me feel down or crying/ ranting at DH. Latter pretty normal.

Results. Results. Results. Biopsy was. 5 days ago. Wednesday. 7-10 days. So it's Rok early. But I want to call the consultant. I want to complain.
How can the deliver The News and then it go so quiet.
If it's really as dangerous, serous n urgent as I've understood, why no hand holding? Not even a 'pack with a helpline'?
Maybe it's my misunderstanding. A mistake on my part. In a drama queen and scaredy cat. I've got it all wrong. Surely. I'll call. Or not.
If they call, it'll be an unknown number. My phone now has the evil ability to deliver news from Them.
The Unknown.
And of course they'll not tell me on the phone. Not even I fits good news. Good news. There's a thing. Good news would be: benign, easy to remove, negligible risk. Please gd, it's benign, but the rest ain't been painted that way. Sounds awful but I find it hard to see wheelchairs at the moment. Gd I feel bad to say that. There it is. I've gone full circle. Hate myself for being negative and up own arse but hate this situation more.
I DONT WANT THE RESULTS
Then I'll have to have the op. I am too scared. I am too rubbish. Please don't tell me that I'm strong. I'm scared. Please don't tell me that I'm brave. I cry. Please don't tell me that I have to have a risky op on my spine and will wake in intensive care with a chest brace to keep me flat. I'm ... not good at this stuff. Most stuff like that happens to people as 'a surprise'. Maybe that's better?

Hand holding from a lurker. Thought of you last night in the early hours. No one can take away what is happening but we can accompany you on the journey. Take care.

Goodness, handholding here from a lurker too. Have been following your story but not known what to say. How crap is that!
You write beautifully, especially your last post. Very poignant and from the heart. Keep doing that, it must be therapeutic. And perhaps keeps it as a reminder in months to come so you can see how far you have come.
Because you will get there my lovely. You sound strong and capable.

Sending unmumsnetty hugs x

The waiting really is the worst.

I got sleeping tablets from the doctor. Two weeks at first, when I got my cervical cancer diagnosis, then they gave me two weeks after my op while waiting to see if it had spread. They warned that they wouldn't give more as they are highly addictive, but I eaked them out by not taking them every night, cut the first stronger ones in half, and made them last quite a while. They were a godsend. To know that I could take one and that would be it, till morning was wonderful. Ring your gp and ask for him to leave a prescription out for you.

Fortunately they cut all mine out and I didn't need chemo or radiotherapy, but I know how the worry absolutely consumes you. You might forget for a couple of minutes but never for long. It hangs there like a weight on your shoulders permanently.
I had to tell my kids, as I could not even attempt being cheerful. I would never have been able to hide it from them.
I remember being in tesco and thinking, at anyone time there are loads of people with the weight of the world on their shoulders, and I was just normally oblivious to it. I wanted to shout it out in the aisles.

Once the op happens, at least you are moving forward. The waiting is just awful. Wishing you all the best.

Hi hope you are having a good day today. I'm glad you got a chance to go out yesterday.
I read earlier you were a bit worried at how your dh would cope with looking after the kids. My dh has had to do a lot recently when I hurt my back. Even though we normally have a rather unmumsnet approved division of jobs where I do nearly all housework and childcare he really took it all on well. He is very organised and had a system going in no time, even though it did involve a bit too many microwave meals. You may be surprised how your dh gets on when he has to.

Dd has been spending a lot of time with me sitting in my bed watching DVDs as I wasn't up to much playing, so I think you definitely are right to want to get the kids out to activities so they don't get bored, but we quite enjoyed our DVD watching but dd was happy to go and play with a friend for a change.

Wishing you good news very soon x

Forget this 'strong' ideal you feel you should/ need to achieve. We are all far more complex than that. I highly doubt anyone at all would feel strong about your current situation. That's because it's pants. So if you feel like weeping or worrying out loud you please go ahead.

Try to think in very short timescales? An hour, maybe. So avoid over thinking stuff you can't control if you can. I think in your position I'd be trying to get practical stuff done to avoid the dark thoughts. I'm a big avoider, though.

Thinking of you muchly. Your kids sound a joy. Cuddles are pretty comforting.x

Apparently results likely to be through n discussed on jan 3rd. If before, they'll let me know. :( doesn't mean they'll let me know that day. More likely to be calling me day after that once they've decided on the 'care plan'. This feels like a 'couldn't care a less-plan' but it's cos of Christmas.
Shit isn't it.
Happy 2014.
The waiting us the hardest... apparently.

In one way bad, but at least you get to enjoy Xmas at home with the family. I know what you mean about it seeming like it has all been conveniently put off, but they wouldn't do that if it was an emergency so that could be slightly reassuring.

It sounds like the tumour is benign (as they suspected) if they are leaving seeing you until January 3rd.

It also sounds like they will be working behind the scenes to put together a surgery / after care package - the care plan.
So that, when you see them on the 3rd, they will tell you surgery on x date, hospital from y date to z date, recovery to take x amount of time.

So I think, you can breathe out slightly (much easier said than done, I understand) and try to enjoy Christmas.

And we are all here over Christmas to hold your hand as and when you need it.

I guess so. I won't be seeing them on the 3rd. That's when the disciplinary team (London Sarcoma Service) next meet as their next meeting isn't until then because if Xmas. It's down to them what happens next. I'm hoping, like you, that no news is good news in terms of it being benign (please gd). But really, with the Xmas holidays, there's too much room to worry. I'm jolly well enjoying this Xmas as much as I can - completely AND I'm going to absolutely spoil the pants off my DCn as all those pressies I've been keeping up my sleeve are coming out!

Ah, ok, sorry, I misunderstood, thought you would be seeing them on the 3rd.
Either way, the fact that they have not called you in suggests it is not malignant.
Not that that in any way lessens what you are going though.

Be kind to yourself, enjoy Christmas as much as you can and take time to process everything. And if that means crying into your trifle so be it!

Lolling. I'll enjoy it, I'm sure. Just a backdrop of intrepidation re the op. as it's gone into my spinal canal and all that. Trifle, Christmas pud, children, great TV and pressies will be a wonderful distraction!

I hope you get spoiled rotten, too. You deserve a lovely few days.

Then get planning for some down time, any box sets you've missed? Books you always meant to read? Stock up the iPod with good stuff to listen to? Listening books good if reading too much like hard work.

Take care.x

Matilda, all recommendations welcome. Comedy n drama are my faves. I love Curb your enthusiasm, Ab Fab type stuff - but not Miranda, Outnumbered, TOWIE & MIC (in small doses), brothers n sisters, etc. not keen on crime or gore.

Madmen. All 5 series, back to back...lasted me a few gorgeous weeks.

Great. Can I ge them all on my iPad? I'm a v new-to-iPad person.

No news sounds like good news xx

In terms of it being benign, I'm hoping so. In terms of the op, it's complicated and serious.

Yes of course, but does benign mean no extra treatment (or do they still use radiotherapy to shrink?) Don't worry about replying - just sending you positive vibes for a straightforward op (as straightforward as it can be) & quick recovery

Goodness, I used to work in a breast cancer clinic - we didn't just deal with cancer, though, it was a clinic which dealt with all growths in the breast, whether malignant or benign.

The Multi-disciplinary Team meetings are really the gold-service way of dealing with this sort of thing. It means that you get lots of experts reviewing your images, deciding what the best course of action is.

It is a surreal experience for many patients, because we are given the 'Casualty' and 'Holby City' TV scenarios where someone has symptoms, is tested, has treatment and discharged all in one episode. The reality is somewhat longer. Our breast cancer patients would attend a rapid access clinic, get their diagnosis the same day, but have to wait up to two weeks to get an appointment where they would be told 'the plan'.

What you can be sure of, is that at all times the Team will be looking for the treatment that is the most effective with the best recovery process and speed, and the least trauma to your spinal region.

Try to have faith that you will get through this, you will get the treatment you need and you will have the care you deserve.

De-lurking to hold your hand and send positive vibes.

Your story strikes a chord because I was awaiting a diagnosis when I got married. I so well know the fierce feeling of wanting to make everything alright for everyone else because of the occasion. Not sure am making much sense as need to go to bed but everything crossed. X

iHigoodness, don't worry about your posts - we are all here because we care and want to support you. This is the place where you can be completely honest about what you are feeling and not have to worry about protecting the people you love.
Your kids sound lovely, and I normally completely over order everything from Tescos!

How are you now, Rudolph?