Newly diagnosed

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i all. I am a 39 mum to three boys in Devon (ages 12, 10, 7). It’s my 40th on 5th April. I developed an awful headache with vomiting, stiff neck and nausea early March and ended up in A&E with query meningitis. MRI revealed sig abnormalities on my brain and swelling. I had a biopsy and got my results this week after an agonising wait and was told stage 3 or 4 GBM (tumour right temporal lobe) but waiting on final staging for another week. Our world has come crashing down. It was a complete shock and from nowhere. I had no signs before this and was very fit and active. Running regularly. I have tried to take back some control joining support groups and the BRIAN app and researching for a second opinion and looking into keto etc. It’s all such a shock and I am so sad for my family, husband and our three boys. I am really struggling to sleep at the moment which isn’t helping too. I have booked an appointment with MacMillan on Saturday. My husband is struggling and I don’t know how best to help him. He’s not talking about things. 

  • HI Devonsands

    a warm welcome to the group. So sorry to hear about all that's going on. Life's too cruel.

    My husband was diagnosed GBM4 in Sept 2020 (he was 50) and like you it came out of the blue. He's a fitness freak and a marathon runner.

    Nothing prepares you for a diagnosis like this. It's a real  emotional rollercoaster ride for all concerned. It sounds as though you have a strong positive attitude and that's a beautiful thing. Keep hold of that positive mind set.

    I hope your appointment with MacMillan helps. They should be able to offer details of the support available for all of you.

    Everyone reacts to things differently and takes their own time to process the news. I'm sure your husband will talk in time but you know him best. Keep the communication channels open. My own husband rarely talks about what he's feeling etc and it does make things more challenging for our two adult children and I. Men seem to be less willing to open up at times like this. MacMIllan are here for your husband too so he too can reach out through the online community or give them a call.

    This community is a safe and supportive space. I've personally drawn a lot of support from it over the past couple of years. There's always someone about who gets it, someone to listen, hold your hand and offer that virtual hug when its needs. You're not alone, We're here for you - both of 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.

    I've written a few community blogs for this community over the past year or so. Perhaps the first one might help your husband to open up. here's the link (+) Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

    For now though,take this one step at a time. Focus on what you actually know rather than the what ifs. Stay away from Dr Google- he's a scary dude. Everyone is unique and the impact is unique too. Our situation was terminal from the start and after an ocean of tears, we got our heads round, My husband's initial prognosis was 12-15 months. Over 32months later he's still here and still running. (Although that's curtailed a bit these days). Last year he ran 2 marathons and a total of over 2800 miles...so keep running!

    Sending you all a huge virtual hug and lots of positive energy. Stay strong.

    love n hugs

    Wee Me xx

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

  • Hi Devonsands,

    So sorry to hear your diagnosis.

    I felt particularly compelled to respond to you as your diagnosis - although I know you're waiting for the full results - it sounds similar to mine. My tumour is an Oliglodromina grade 3. I was diagnosed on 4th June 2021 after having a seizure. I won't go into everything that I have done since then on here, but if you would like to get in connect with me, I would be more than happy to describe the journey I've been on after nearly two years, the mistakes I've made along the way, but I have researched a lot using sources like Macmillan, forums, diet and many other "unconventional" forms of treatment. And fortunately, I'm probably at the best I have been at in a long time.

    But no rush, speak to the experts first, take on the information they give you, then start your journey.

    But please, feel free to connect with me anytime.

    Kind regards,

    Aaron.

  • Thank you so much for such a helpful and positive response 

  • Thank you so much for taking the time to respond. I would really like to talk to you when I know more and to hear about your experience! I am due to get all the makers and staging back this Thursday so will update then. Take care.