Recent diagnosis

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I am a middle-aged male and have recently been diagnosed with an aggressive brain tumour, a glioblastoma (grade 4). When I first got the diagnosis I was overwhelmed, I could cope at all. I kept breaking down in front of health professionals and acquaintances when I discussed it with them. I felt scared but I don't know exactly what I was scared of. I think it was just the uncertainty, and the combined weight of all the terrible stories I've heard about cancer over the years. There was also an element of shock, because I've always tried to keep fit and eat healthily. I never thought cancer would get me. But from what I've read, my understanding is that cancer starts when a healthy cell mutates and becomes cancerous. I wanted to know why I had cancer. I thought it might be because I have a history of epilepsy, which means I have banged my head a lot over the years during epileptic seizures. But the doctors told me that head injuries are not known to be linked to brain injuries. So I guess I just got an unlucky mutation.

The tumour is multifocal: it has branched out to to other parts of my brain.

I am currently having radiotherapy, which I am finding quite difficult. I had expected radiotherapy to physically tire me out, but that hasn't happened. I had expected tired and weak muscles, but instead I just find I need more sleep. It's really hard to get out of bed in the morning. I also feel physically removed from myself, as though I am outside my own body and watching someone else. I believe this may be a result of the brain swelling that radiotherapy causes.

I also get confused more easily, I keep forgetting things and I get lost in places I once knew well. I even have trouble telling the time on a cock face with hands, so I've started using a digital watch because I find it easier to tell the time from that. Just to be clear, I think these symptoms are linked to the tumour itself rather than the radiotherapy.

I'm on a steroid, dexamethasone, to reduce the swelling of the tumour. This seems to have worked, because when I was first admitted to hospital I had symptoms of nausea and confusion. The nausea has now gone and I think the confusion has reduced. However, one of the side effects of steroids is an increased appetite. I have been eating much more--which I can't honestly say I'm displeased about--but I think I am likely to put on a lot of weight.

  • HI Swift

    a warm welcome to the group. Sorry to hear about your diagnosis.

    My husband (then aged 50) was diagnosed GBM4 in Sept 2020 and the neurosurgeon said it was jut bad luck. There were no known health issues or attributable causes...it's just one of those things.

    He coped really well with the 6 weeks of oral chemo/radiotherapy but by about week 4 was really tired. That fatigue lasted for about a month after the treatment finished. He was also on  dexamethasone but decided he didn't like them and took it upon himself to just stop taking them. Definitely not an advisable course of action! His CNS at the time gave him a right "mummy" lecture!

    His tumour has affected him mentally rather than physically. He still runs most days, goes to the gym and cycles but don't ask him to go tot he bar for a round of drinks or to read something - that just doesn't work any more. His short term memory is all but gone. 

    Something I've come to realise is that everyone is unique and that these tumours impact folk in different ways. He's far exceeded the medical team's expectations. 

    This group and Glioblastoma multiforme brain tumour forum - Macmillan Online Community are really safe supportive spaces so please reach out anytime. There's always someone around who gets it, someone to listen and someone to hold you hand.

    It’s always good to talk so please remember 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 I'm sending you a huge virtual hug. 

    Take care

    Love n hugs

    Wee me xx

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