Very recent brain tumour diagnosis.

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I'm sorry any of us have to be here, I lost my wife just before Christmas to lung cancer, possibly thru the process of grieving, I have not been listening to my own body trying to warn me of my own health, I have just had a brain tumour diagnosis, (this week) if I had paid attention this could have been discovered a few months ago, hopefully not to late! So far I've been told it's primary, it's location affects my speach and a few fine motor skills, I'm going to have to go thru this basically alone, yes I'll have family support, but no one at home at the end of the day, nights on my own, I've been doing this since my wife died, so used to being alone, but now, I'm ill it will be so much worse.

  • I’m so so sorry to hear your situation  - to have this news just after losing a loved one.. You sound pretty clued-up about what’s happening but you can never have too much help, so it’s good you have family. A phonecall, a drink with a friend, or a community chat makes all the difference when you live alone, at least in my experience.

    Drop in and keep us posted - I was diagnosed with a Stage 4 Astrocytoma two years ago and am still stable luckily. There’s no certainty in this game, but I’ve found ways to stay happy, I don’t push myself, and I take help when it’s offered. I hope you find something that works for you, and I’m sending you all my best wishes Heart

    look after yourself x

  • HI Blighty553

    a warm welcome to the group. Sorry to hear about your wife's passing and now your own diagnosis. Life is too cruel sometimes. It is all too easy to ignore our own health when we're looking after and then grieving our partners.

    You sound quite philosophical about your situation but I'm glad you reached out to us here. This is a safe and supportive space. 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.

    As you comment it's very early in your journey here. I'm guessing that you'll have a follow up appointment in the not too distant future to discuss the plan. (I've been down this road supporting my late husband - you can read the gist of that tale in my bio) At this point can I suggest that you take time to write down all the questions you might have, anything that you're concerned about- there's no such thing as a stupid question - and take those notes to your next appointment. These early appointments can feel so overwhelming. If you have your notes they can act as a script and help keep you on track. Just a thought.

    For now though, I'm sending you a huge virtual hug and lots of positive energy.

    love n hugs

    Wee Me xx

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

  • Hoping someone can explain a little of this to me?

    Mass involving the corpus callosum and bulging into the frontal horns of the lateral ventricles bilaterally includes a butterfly glioma and lymphoma, likely intrinsic high grade brain malignancy?

    I know I will get a better diagnosis from the Neuro-oncology consultant when I see one, but a little now would help me?

  • So sorry to read your post. My brain cancer has caused me loss of about 15 years on memories plus balance. Can not remember nothing about my time in hospital etc. My son has shown me pictures etc. So don’t know the medical term all remember when my x wife and family were fighting to get me home, the consultant said I had three months to live. That was nearly six years ago, my son thought I would never see his at time new born twins. Got pictures of me holding them in Hospital with tubes etc everywhere. Now they will be 6 in three months. Wife said she was leaving in Xmas , after thirty plus years of marriage. That was heard she thought to get to this place. 
    so now living in a flat mainly on my own cooking and looking after myself. Got three lovely kids and six grandchildren which visit, take me out when they can.

    Have a care team who come in for a hour twice a day. To make sure I am all okay.

    Best of luck with your journey and it sounds like you will have a good family and friends around you. I am just turned 60 so loss of working etc has been hard. But old works colleagues have visited. 
    Stay positive and beat this horrible condition. 
    If you want please stay in touch especially if you think I get help in anyway on your journey . 

    All the best Graham 

  • I wish I could help more, but I don’t want to mislead you with wrong information. You probably already know that a high grade malignancy is more aggressive, with 4 being highest, but there are many other factors such as where it is located, whether it’s treatable, how you respond to chemo and radiotherapy, your general health, and mutations of the gene which can make a big difference (they’ll need a biopsy for this).

    I found it helpful to take a friend with me to my appointments, and a notebook - there’s a lot of information and it might be a while before you get it in writing. Then you can do your own research, or get a medically minded friend to do it. 

    Hope you can stay positive whatever happens, at least some of the time - 

    all the best to you,

    Alex x

  • Hi

    I totally understand your need to know more. Not knowing is a 1000 times harder than knowing but I would beg you to be patient until you speak to the neuro-oncology consultant. They are the person who is best placed to give you clear advice on your personal situation. Everyone's situation is unique and even if you read something online, that might not fit the criteria of your situation.

    The members of the group are not medical professionals. We can only speak from personal experience or experience of a loved one's journey. That said there is some generic info on the main body of the website. Here's the links

    Glioma brain tumour | Macmillan Cancer Support

    Brain tumours | Macmillan Cancer Support

    Please remember though that this is generic information.

    Having travelled this road with my late husband, I would encourage you to be patient with yourself here. Please avoid Dr Google - he's a scary dude! This is a journey to be taken one step at a time.

    love n hugs

    Wee Me xx

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

  • Thank you again, I've just had sudden set of bad tremors and my speach went really bad, called 111 they sent paramedics, we agreed to wait for my first appointment rather than returning to hospital, probably just a temporary blip while the steroids start working properly! 

    1. So the plan for me is, straight to palliative care, nothing to be done, I have weeks, I'll just make the most of it now, eat and drink, especially my good wine rack, why waste it Wine glassJoy
  • That sounds like me , chemo etc not working. I with family said enough, with 3 months verdict from consultant when home to like you eat and drink. Nearly five years later still here.

    Had a hospital bed installed with palliative care etc. Now back cooking and looking after myself. Yes it’s hard but for my family they still got a dad and granddad. 

    All the best enjoy every day.

  • For some reason a doctor at the hospital gave information to my gp that wasn't 100 % accurate, I saw the head consultant yesterday, he thinks I'm healthy enough and strong enough to have a go with a big hit of chemo, if nothing else, it might give me some more time, fingers crossed eh!