Hi all,
I am new to this group. Didn't realise that this kind of support was on offer for myself, daughter and family due to poor communication throughout the journey.
My daughter is 8 years old and has Meningioma of the optic nerve sheath. I am particularly, feeling alone through what I feel is a crazy time (the last 3 years). I don't know anyone who has/had this so am struggling with feeling like someone understands how I feel.
Obviously, we are told that the tumour is stable and has not grown but I don't know whether I'm out of my depth abut amongst people who are maybe going through something that is more serious, but I feel like I am struggling. We have had medical problems since 3 months old, no support and feel like I am finally cracking.
The hospital are telling me after a recent MDT meeting that surgery is not the preferred treatment option after convincing us that it was prior Lockdown? It took the family alot of thought and weighing up the risks etc to come to the conclusion of surgery but feel like this is being taken away.
I am hoping someone/anyone can offer me any advice etc.
Hi and welcome to the online community
I'm very sorry to hear all that you've been through over the last few years. It must be a lot to deal with so I can understand why you might be feeling the need for support.
I haven't been in your position, as I was the one with cancer, but I noticed that your post hadn't had any replies yet. By replying to you it will 'bump' your post back to the top of the discussions list where it'll be more easily spotted.
It must be horrible having been originally told that surgery for your daughter was the way forward for you now to be told it isn't. I'm not sure that anyone in this group is going to be in a position to offer you any advice about this unfortunately. Could you request a meeting with your daughter's consultant so that s/he can explain the reasoning behind the latest decision?
Wishing you all the best
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi
Thanks for replying to Cerys1990 with your own experience.
You are right that it's against the Community Guidelines to signpost people to social media sites. This is because "there’s no guarantee groups on Facebook and similar social networks are moderated and safe so Macmillan ask members of the Community to refrain from signposting or linking to these networks."
How are you doing?
P.S. I love your username and read the explanation in your profile 
"Never regret a day in your life, good days give you happiness, bad days give you experience"
