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.

Hi Goodness, was just checking in to see how you're doing. Hope you're managing to get some rest

Thank you. It is scary to be pushed through ... feels like I'm in the equivalent of an ambulance. Saw two consultants in one go as a priority case, squeezed between people who's waited months for an appointment.

Hi Sticky bean. Thank you for checking on me. I'm awake in bed, teary and scared with a barely achey back (negligible discomfort) but full knowledge and a vivid imagination of what every little ache is. I'm scared - but comforted greatly by hands being held out to me. So many questions. Only being told The Next Step. Makes me scared of the storm ahead.

Thank you. Your experience of the initial stages really resonates with mine. It helps not to feel so alone. Even if you're not in my particular 'isolation chamber of freaking'. I hope that you got through yours unscathed. How did : what has panned out for you?

DH just left the room as my shuffling about to avoid feeling uncomfortable, muffled crying and internet surfing as disturbing his sleep, understandably.
I have some frightening questions in my mind:
Will I have to have this op
When
How painful will it be afterwards
Can't I just run away- I'm not in pain at the moment and nobody never know and could live normally
Will it be cancerous
Will I have chemo
Will I lose my hair
Will I end up with a wig
Where can I get really lovely ones
WILL MY CHILDREN BE AFFECTED
Can't I just pretend everything's ok
Can this be happening to me
Will I be able to take my son to school and daughter to nursery
Will I be wheelchair bound, gd forbid
Will I lose the sense of when I need the loo, gd forbid
Appropriate run on to last freaking-out comment : shit, shit, shit

Write this list down and take it with you to your next appointment. I guess once they have a few more answers they will be able to fill you in more. Step away from Google especially at night time as the night monsters make everything worse.
Wishing you strength and very much hoping there will be a positive putcome for you.

Thank you, Rosa. Haven't been googling. Just MNing. Thankfully, a MN has pointed me in the direction of a spinal surgeon who specialises in tumours and may well have successfully operated on a rare one such as mine.
Time will tell now whether it's, please gd, benign and how complicated the extrapolation/ removal will be as it is embedded within/ around the nerves controlling continence, sex drive ( underused anyway), etc.

Hello Goodness I'm so sorry to read what you are going through. My DS was diagnosed with an aggressive brain tumour just two weeks after suffering very mild symptoms. I couldn't and still can't get my head around the fact that my son was so ill and yet at school on the Monday, in hospital on Tuesday. I've given up trying to get my head around it.

I kept a diary from day one. I wrote all my feelings, any questions, visits, appointments, what DRs and nurses said, when medication should be given/when it was. Any one who sat with DS also had to fill it in, including food and fluid intake, wees, poos, vomits. This meant I did not have to carry all this information in my head. There was written evidence of what was happening so that everyone knew the score.

It also meant that midnight questions flying around could be written down and remembered the next day rather than me crying and trying to remember what had kept me awake.

I hope you get your accurate diagnosis quickly so that the appropriate treatment can start. This waiting period is extremely anxious.

Macmillan are a great place to start. They will have heard all these questions before and can help you sort out priorities and also practical things like benefits and childcare.

Hugs!!

Ghost, m not sure whether it's benign yet. Please gd it is. I don't think I have a 'right' to call Macmillan if not or while it's unknown. I'd live to be able to contact some sort of support group for those whose tumours are rare and, please gd, benign but dangerous.

Mini, how is your son now? It's such a whirlwind and a shock. How are you doing now? Must be almost worse to be a parent. I'm going to use a diary at your suggestion. I think it's something that could really help. Thank you.

I'm sorry you have had this shock.

I'm not sure if this is helpful, but my mum has had surgery for a tumour on her spine. Hers was cancerous - a secondary from earlier breast cancer - and was on her neck (so rather different in those respects to what you have been told). The risks of surgery were similar to those that have been mentioned to you and she was given a 1% risk of paraplegia, which terrified her. She had radiotherapy to shrink the tumour before surgery and then the surgery itself. The tumour was causing the bone to crumble, so the surgeons put in loads of screws and built a sort of cage around the remaining spine to support it. It looks like Frankenstein on the x-rays! She does say that it aches always (sorry) but she has made a good recovery and regained most but not all movement in her neck. This was all about 7 or 8 years ago and she is going strong! It has all healed very well and the scarring is not obvious at all. Airport security always requires some extra checks though as the screws set off the alarms and I think the staff are puzzled that they are in her neck!

Her surgeon was a bit rubbish at explaining things, but clearly he did a good job! She has had a brilliant outcome.

Incidentally, I clearly remember the day of diagnosis (it was her father's funeral - we had to leave early as we got a call from the hospital, which had just got some test results back). We were all completely bewildered and shell-shocked, so I do understand how you must be feeling now.

Goodness I am sure Macmillan do help at this stage too. But I know what you mean I am sure there is somewhere to help at this stage. I just don't know where.

In the meantime Hugs!!!

Dr Google says these are almost always benign,that only one percent could become cancerous??
I never heard of it,that's why I looked.
Hope it's all ok anyway.

Google is a wonderful and terrifying thing. I've been referred to the London Sarcoma Clinic ( I think it's called). Doesn't look quite so good if you google that.
I'm literally watching the phone in wait for someone from The Team who are discussing my case today. They'll give me a code for my insurance company (thank gd), place, date and time for the biopsy. I've requested that it be done under a general as I'm so scared. They've agreed to but it'll be tricky as it's at same time as jabjbv a CT scan. What's that?! Over the last two days, I've learnt to spell 'benign' as, please gd, it will be. Ice also come to dread night time. Waking up with the 'What's What's' and the 'What Ifs'.
The waiting is horrible.

Despite all this, I'm going to go to a local kids thing where they'll have fun and I'll see a RL friend who's now worrying about her own hip (an achey hip was the reason I first went to see someone). Lol
We will take the children to Santas Grotto. A lovely distraction.
Every little ache reminds me if the nightmare that wakes me to tell me it's true. I also now am noticing tiny niggles and wondering whether that and my tiredness is something bigger - or just mummy/stuff. I feel for my husband. I worry about my children (only just 6 and 3).
I wonder whetjer I should book their next party now. So negative!
My son broke up from school at 12pm today. As usual he wanted to run towards the car park. I usual let him (safe little path). Today he wanted me to run with him. I did. But I cried as I ran. Just a bit. Cos I wondered how long I'd be able to do this for and whether I'd be able to in the future.
I hate myself for having such negative and self-pitiful thoughts. But they're there. Better out than in.
Dreading waking alone with my thoughts tonight.

Dear OP
Sending you much strength at this time.
I have recently recovered from a similar situation and my life is now returning to normal. Schwanommas are benign, so fingers crossed your tumor will be a schwanomma. My tumor was also benign, and this was the best possible outcome. Please gather around yourself a support group, afew close friends you can text/call any time of day or night to comfort you. This was so helpful to me.
Take care XXXXX

goodness I think you are doing amazing, but it is just the right thing to keep going as usual as much as you can. Fit in lots of fun where you can. Arrange things ahead if you want to. I won't say don't worry but try not to assume the worst.

goodness you're doing amazingly & people that care for you will be there for you xxx

Thank you. RL friends are being great. It's actually amazing to realise how many friends I have as I've always been friends with individuals vs a group. I have a few friends I feel I can distribute my worries amongst. Night times I wouldn't want to wake them just because I'm worried. So Mn will come into its own. Hopefully, I'll be able to read other people's stuff vs focus on my own and the uncertainty / anxiety of it all. Thankfully, I've made an appointment with the guy a kind MNer recommended. That's so comforting as, until now, it's all been happening TO me vs me behind able to control anything or be proactive.
Hopefully, I'll be able to put it all out of my mind and sleep well tonight. I've started to write a little journal of questions/ concerns.
Sukima, mine is in my lower spine. It's unsure at the moment as to how entwined it is with the nerve sheaths. It's also rather large (5cm). It's corroded much of the bone in the area it's grown in. It's gone into the bone and through. It's complicated. Please gd it's benign. They didn't call today, as I'd hoped after their team meeting, to tell me when the biopsy will be. But it'll need careful extraction in the safest way possible.
A lovely friend told me that I ought to visit a holistic spiritual centre. She said that positive thinking is vital. Hmmm

Oh OP, you sound so worried :(

Not sure of the ins and outs of it, but my BiL had surgery for a tumour at the base of his spine last year. First he knew about it was when he hurt his back at work lifting something, and thought the ongoing pain was down to that. When he finally saw the doctor, they thought it was a prolapsed disc, but MRI said otherwise. It was in a very awkward position apparently and he was given a 70% risk of some form of spinal problem. He came through the operation just fine and the tumour was benign. He is now back working, and has no lasting problems, thankfully.

I know its hard but try to stay positive, and use whatever support is there for you locally. Take Care xx

Hope you manage to sleep well tonight

Thank you GoodKing. So reassuring to hear that he's fine, working and with no lasting damage. Had the tumour eroded much bone?
Rosa, I'm up at scary-o'clock. This is the worst time of day. I wake up with normal v mild achey back and realise it's true ... tumour, biopsies, operations, bone erosion in spine...
It's when I feel teary. Day time is manageable as can speak to someone or distract myself (be driven nuts by DC). I've heard a few 'good news stories' and have am excellent surgeon/a on my case. Just this bloody waiting game. Want the wait over - but then again, once it's over, the next step (biopsies And operations) is when the 'fun' will really begin. Think scary stage is probably easier. Lol
;(

Oh GoodnessKnows - I know looking forward must be terrifying at the moment - not a lot to look forward to in terms of biopsies and operations but at least when those are being done you will know action is being taken.

All this waiting and not knowing must be agonising because you can create a million (awful) scenarios in your head. At least once they have decided on a plan of action and know what it is they are dealing with (it does sound very likely it will be benign) then you can really look forward to a future of recovery and start planning some lovely things to do with your family. I know this is too far ahead but I just wanted to remind you that as well as all the awful scenarios that you might (quite naturally, I would be the same!) be imagining there are also some really good ones too.

MN is great for random night time rambling. Why is it night multiplies your worries by a million?! I have bouts of insomnia and even the most trivial of worries become mountains at night.

Take care and keep posting, there will always be someone around.

Sorry the night monsters were in action again . Hope that Monday morning you get the phone call and the date fixed. Sounds a good plan to get driven mad by the dc this weekend . How is the journal going?

Thank you. Yes. Night time worries are far worse. Think it's cos I wake up realising it's actually true - not a nightmare. Then I can feel it and can't get back to sleep (bit of ache in hip n back). And there's nothing to do and No one to talk to. Thank goodness for Mn.