DMG Diagnosis

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Hello everyone,

Yesterday, a best friend of mine was diagnosed with a grade 4 diffuse midline glioma, following an MRI and biopsy. He is 34. As you can imagine, we are all devastated, and I have been trying to do any researching into it since his first scan a few weeks ago in the hope that, if it is DMG, there might be something that can be done. Most of the information online is about childhood brain tumours with little info and stats about what happens in adulthood with this sort of diagnosis, so I am finding it quite tricky to understand. He goes to oncology today (28/3/23) and then will start radiotherapy and chemo at some point very soon. As a friend, I am trying my best to be strong for him and support him and his partner, but I feel completely lost inside and am struggling to continue with daily life since all of this started, particularly because there isn’t very much online out there about this illness. I hope this is okay to post here, I know I am not the one going through this myself but I don’t feel I can talk to anyone else about what’s going on and am just writing in the hope that, if nothing else, there may be some people on here who are also dealing and fighting this and wouldn’t mind sharing their experiences with me, or have any advice as to what to do as a friend. Thank you all so very much for listening to me. Very best wishes. 

  • HI

    a warm welcome to the online community. Sorry to hear about your friends. Life's too cruel

    I am supporting my husband through his stage 4 glioblastoma journey, He was first diagnosed in Sept 2020 but I remember only too well the rollercoaster of emotions in those first few weeks as we tried to grasp what was going on. 

    Something to bear in mind here is that everyone is unique and everyone's body reacts differently to their own situation. In my husband's case his tumour is/was in the area of the brain that controls speech and language meaning that his symptoms are cognitive rather than physical.

    A diffuse midline glioma is not one I have come across before. I checked the main website to see what information was there. Here's a couple of links that you might find helpful

    Glioma brain tumour | Macmillan Cancer Support

    Emotional support for family and friends | Macmillan Cancer Support

    I also found this link

    Diffuse Midline Gliomas Diagnosis and Treatment - NCI (cancer.gov)

    This group 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 offer a virtual hug when its needed. You're not alone. Personally I've drawn a lot of support over the past few years from this community. There's another group you might want to explore Family and friends forum - Macmillan Online Community

    For now, please try to stay positive. Be led by what your friend needs or wants from you and focus on the known facts, not the what ifs. Take it all one step at a time till you know what they're facing. It's a rollercoaster ride so don't be surprised if you go through every emotion in the book. It's allowed. It's the strongest most resilient among us who show those emotions so its ok to cry.

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

    love n hugs

    Wee Me xx

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