Hello, newly diagnosed with a 1cm parasagittal meningioma

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Hi everyone,

I feel a bit of a fraud posting on a cancer forum, but these forums seem to be the only place to talk to others in my position. I was initially diagnosed with a suspected pituitary adenoma due to high prolactin levels and was referred to an endocrinologist who ordered an MRI and prescribed Dostinex/Cabergoline, which I have been taking weekly. The Dostinex has made me tired, slightly spaced out and headachey.

Anyway, I had the results of my MRI scan back this week and whilst they didn’t find a pituitary tumour, they did in fact find a 1cm parasagittal meningioma. I think I’m still in shock to be honest. I was not expecting anything like this at all. I’m a secondary school teacher and haven’t been able to drive on the Dostinex, so have been off work since the 29th January. I was thinking of going back to work prior to my meningioma diagnosis, but now I’m just at home, feeling worried and bored.

I do live in Ireland and I know there are Irish forums, but I’m British and thought it would be ok for me to join a UK online community. I know my GP said I’m being referred to a neurosurgeon, but I don’t know what to do with myself at the moment.

Obviously, I’m mentally not in a great place and would probably not be much use at work, but I’m desperately bored at home. I love teaching and really miss my normal life before my diagnosis.Work have told me to take my time and get my health sorted before I even think of returning.

I’m just wondering if there is anyone else in a similar position/situation? I just feel like my life is on hold at the moment and that I’m no longer in control.

  • I was teaching at  higher Education College from motor vehicle technician to a teacher enjoying teaching my love for automotive. Because of my tumour it has robbed of all memories of teaching etc. I have been visited by colleagues and even two students who got in touch because I changed their lives. 
    So hopefully you will get a positive response from your treatment. It’s been over four years since my operation and chemotherapy, what was stopped because it wasn’t working. I now take it one day at the time enjoy seeing my children and their families. Be here to see my now five grandchildren is number one reason to keep living . At the moment they don’t understand cancer and they only know me like this. To them this is grandad. I love my teaching career and yes missing it, but I have a new life now.

    All the best try to be positive.

  • I’m sorry that your tumour is no longer responding to treatment, but thank you for giving a response to my rambling.

    I just want my life to be normal again, but I know really that it won’t be. I’m going to speak to my GP tomorrow to get everything clear in my head regarding my neurosurgeon referral and what happens next.

    It’s nice to be able to link in with people who can understand and empathise with how I’m feeling about my situation.

    Alys

  • Hi AlysJ

    a warm welcome to the online community. Glad you found us. No need to feel a fraud. We're all here to support each other whatever the cirumstances.

    My own experience lies in supporting my late husband through his stage brain tumour journey so an entirely different scenario to yours.

    The time period between diagnosis and speaking to a neurosurgeon/consultant is a scary time as there are so many unknowns regardless off tumour type and state. There's some great info in the main body of the website that might help here Just been diagnosed? | Macmillan Cancer Support One thing I would suggest is that you write down any questions or concerns you may have ahead of your appointment and take those notes along when the time comes. These appointments can feel quite overwhelming so the notes can act as a script and help keep you on track and ensure you don't forget to ask something that is important to you. Remember there's no such thing as a silly question. If its bothering you, ask has always been my rule of thumb.

    Work can wait. The important thing here is getting you back into a good position so take what time you need. Be gentle with yourself as its all such a lot to process. I found journaling a great support so perhaps that's something you might want to consider.

    This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now though I'm sending you a huge virtual hug. 

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm