Hi YorkshirePud,

Welcome to the forum and I promise everyone is very gentle on here

I'm sorry to read about your recent diagnosis and understandably, you are shocked by it all.

I think most of us on receiving our diagnosis go through various stages of emotions from shock, anger, disbelief ("why me?") and everything in between!

Personally, when I was initially diagnosed (bowel cancer) I had feelings of shock and disbelief, but as time has gone on I have become more 'accepting' of the illness I have. This phase of acceptance developed once I had the full picture about my diagnosis, prognosis and treatment plan. It was the unknown that stressed me out more!

As you get more information about your treatment etc, please keep us posted so we can try and help support you through each step.

I'm sure you've got very supportive family and friends, but this forum is a great place to offload to 'virtual others' who fully understand what you're going through. A lot of us get things off our chests here rather than feeling we're burdening our nearest and dearest.

Take care and post / chat anytime,

Hugs Jo xx

Thank you so much for replying Jo.  I am feeling very sorry for myself really and there is a lot of "why me" questioning!   I have looked into the treatment etc a bit on the internet but i am just worrying about all of the risks and obviously terrified of having my skull cut into!

The surgeon said the operation will hopefully be within 6-8 weeks so apart from telling close friends and family other people are unaware and I am just trying to carry on as normal, so sometimes it seems like there is nothing wrong and it hits me like a ton of bricks when I remember!

My husband, family and friends have been brilliant but even though they are very sympathetic they can't really know how I am feeling!  So it is nice to find this forum.

I am trying to be very practical thinking and brave about it but I'm a mess inside!  I know there are many more people in a worse situation than me so don't want to sound heartless, but is good to get it out in the open.

I hope your treatment is going well xx

Hi. I have a (hopefully) meningioma too! It's so nice to "meet" another person with one because I haven't found anyone else with one!

I'm 46 with two children aged 10 and 11. At the beginning of last year I had a lump on my neck which the dr said was probably nothing (in view of my age and the fact I don't smoke) but after various tests the consultant told me that I had tonsil cancer and they'd also discovered that I had a brain tumour! I had chemo and radiotherapy for the cancer and the brain tumour was put on the back burner as they believed it was a benign meningioma.

I first saw the neurosurgeon in May and he was so blasé about it all! He said I would have to have an op to have it removed within 5 years. I was really scared so I know how you are feeling. I went back in September and they said they could do it straight away. As I wavered, they put it off for 6 months. So I psyched myself and, when I went back last month, I was expecting to go ahead but they then said I could put it off for a further year as it hasn't grown and I have no symptoms. So that's what I agreed to.

Part of me just wants it out although I agree that the op sounds grim and you can't drive for at least six months after.

Have they said whether they will be able to remove it all?

Although I was really scared at first, I have now come to terms with it but you don't have long to get your head round it all do you?

You're right though, it could be worse as it is apparently the better brain tumour to have!!!

Debbie

Hiya Debbie, its good to hear from you, sorry to hear you are going through the same thing though!

I wouldnt settle for anything less than the best kind of brain tumour , my surgeon said I could wait too but I would rather just get it out as soon as possible as its going to happen anyway and I don't want to start getting symptoms before they do anything.  He was very straight to the point about it too but it makes me feel better as it is just routine for them.  My surgery is going to be complicated as the meningioma is also in my jaw so the maxio facial surgeon will also be involved and I am a bit worried about how my face will look afterwards, hopefully they can do some constructive surgery to correct it.  He said they think they will be able to remove it all but i might need radiotherapy if not.

Its a bit of a pain not being able to drive but I am lucky as I get the train to work and live 10mins walk from our nearest town and the train station so its not like i will be stuck at home (good job with toddler!).  Although I suppose I won't be at work for a while anyway.  My mum has offered for us all to stay with them for a couple of weeks afterwards as my husband is self employed so we can't afford for him to have lots of time off to look after me and the kids.

I am terrified of having the operation, it sounds horrific but hopefully there won't be too much scaring and he said they won't have to shave my head and it sounds really trivial but it made me feel a bit better!  I am really worried about the risks though (stroke, fits etc) but worrying doesnt help anything really does it.  I have never been away from my boys for longer than 2 nights either so the thought of that is upsetting me too.

So are you just leaving it for another 6 months now then? Do you have any symptoms?

Things are just carrying on as normal now for me really until the operation, I have my pre-op on Thursday so hopefully can get a date after that.

Have you told your children about it? my oldest son is 6 next week and so will obviously know something is wrong and he is quite sensitive anyway, I feel bad that he has to go through it all!  There is just so much I am worrying about I can't concentrate on anything at the moment!

Charlotte x

Hi Charlotte,

I'm so glad you've been contacted by Deb. Chatting with someone in a similar situation to yourself can really be mutually beneficial.

I hope you don't mind me making a suggestion, but I saw in your post to Deb that one of your boys is six so presumably in Year 1 at school?

You might have already done this, but it may be a good idea to let his school know about your personal circumstances - how much or how little information you share is obviously up to you as is who you wish the information to be shared with.

I work in an infant school and when we are aware of pupils who have things going on at home which may lead to them being a bit 'wobbly' from time to time, the staff are able to offer them the extra support they need.

I'll be thinking of you on Thursday when you go for your pre-op. I hope it answers some of your questions and calms some of your worries about the operation.

Take care, Jo xx

Thanks for your advice Jo, yes my son is 6 next week so in Year 1, we have parents evening on Thursday so I thought I would let his teacher know what was going on then and for them to keep an eye on him.  He is sensitive anyway so I'm sure he will be effected by it.  Hopefully him spending more time with his grandmas and friends who will be looking after him a bit more will take his mind off things.  I am not going let the boys see me in hospital as I will probably look horrendous so hoping I look a bit more normal when I come home after a few days so I don't scare them!

I am really not looking forward to the pre op as things seem back to normal at the moment (well as normal as can be) so I think it will just hit home that it is really happening and I will get upset again.   But hopefully things will start moving with regards to my operation date then.

Charlotte x

Hi Charlotte

Have they said how long your op will be? I didn't get a chance to ask that.

I go back for another scan after a year unless I have any symptoms in the meantime. They said it's very slow growing and so nothing should happen and, if it did, the first thing would be loss is smell so I keep sniffing everything!

I decided not to go ahead now partly due to the risks and partly having to tell the kids. Telling the kids I had cancer last year was heartbreaking although they dealt with it amazingly well. My son goes to secondary school in September and my daughter takes her 11 plus so I didn't want to upset them.

I agree with Jo that you should think about telling the school. My kids' school were great and they arranged for my son to have counselling because he got upset a couple of times.  Kids are resilient though and yours will be fine once they get over the initial shock.

Good luck with the pre op.

Love

Debbie

Hi Charlotte,

Hope the Parents' Evening and pre-op went ok.

If you feel like off loading, please do, but no pressure.

Hugs, Jo xx

Hi,  the pre op was fine thanks but after things being back to normal for a week it upset me as it was a massive reminder of what's to come.   I feel like I've got so many questions too and not going to see the surgeon until the operation.   I think I will try and ring him and have a list of questions I need to ask.   We didn't mention it to the teacher as thought we would wait until we have a date for the operation,  my son doesn't know about anything yet so we will just need them to know when I go into hospital.   He got a glowing review though  

I was out with my friends for a few drinks last night so tired and emotional today and worrying more than usual I think!

Hope you are having a nice weekend X

Hi Charlotte,

Apologies for not replying sooner, but work and hospital appointment have filled past few days!

So glad your son had a glowing report!

A night out with friends eh? Good for you! Though I know how you feel when it leaves you feeling a bit jaded the next day!

Hope you've managed to contact your surgeon and discuss your questions - have you been assigned a specialist nurse? They are often a good port of call for questions you may have.

Hope you're having more 'up' days than 'down'

Thinking of you, Jo xx