Brain Cancer

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Hi, I'm really struggling at the moment, I'm 41, just had a brain tumour removed and starting radiotherapy next week followed by chemo. I can't talk to anyone because all I do is cry! I'm not scared for me, but for my five and 13 year old.I also have dvt following surgery and I'm scared the tablets will cause a bleed on the brain, so just feeling really down in the dumps.

  • Hi CarrieA,

    a warm welcome to the group. Sorry to hear about all that you're going through. It's scary and all the emotions you are feeling are perfectly normal so please don't be too hard on yourself here.

    I'm supporting my husband through his stage 4 brain tumour journey. He was first diagnosed in Sept 2020 so it been a long rollercoaster ride.  He suffered post-surgical blood clots but they were in his lungs. He too was prescribed blood thinners but had no issues with brain bleeds while he was on them. Just be careful if you cut yourself while you're on them. He fell a couple of times and grazed his knees and didn't realise he was bleeding! Men!

    He also coped really well with the treatment, He had 6 weeks of oral chemo/radiotherapy in combination. His only real symptom was fatigue which set in around week 4 and lasted for about a month after the treatment ended. His only other complaint was that the radiotherapy mask was tight and the nurses kept squashing his nose!

    This group is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed I'm confident other members will be along shortly to share their words of wisdom with you. You're not alone. We're here for you.

    For now, take this one step at a time. It's a lot to come to terms with (understatement of the day!) and it takes time. Let those emotions flow. It's the strongest most resilient people who show their emotions, By showing them, even if it is to cry, you're processing them and not bottling them up. You're coping so much better than you give yourself credit for. (You'll just need to trust me on that)

    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, I'm sending you a huge virtual hug and lots of positive energy. Stay strong. Breathe!

    love n hugs

    Wee Me xx

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

  • Thanks for your reply. It's so tough, I lost my mum to bone cancer when she was only 46, I never want my kids to see what I had to see, that looks inevitable now. I just can't see a light at the end of the tunnel at the moment. I would try ring but no words would come out. I suffer with nose bleeds especially if I cry so trying not to because of the thinners! It just seems to be one thing after that other at the moment. The surgeon seemed happy with the tumour being removed but still said I will probably only live another five years and it's absolutely terrified me and the future of my family.

  • The option to call the helpline is there if and when you feel ready to talk to someone. Take this all one step at a time. It sounds as though its still early days so baby steps first.

    The surgeon being happy is a positive. In my limited experience of supporting my husband and through interacting with others in this community, prognosis are best guestimates by doctors based on published averages, No one here is average everyone is unique and these things impact everyone in their own unique way. 

    I don't want to give you false hope but when my husband was first diagnosed we were told he had 12-15 months. Those 15 months "expired" at the end of Nov 2021. In 2022, he ran two marathons, went skiing to France and appeared as an extra for Outlander. In Feb 2023 we moved into the palliative care phase and were told he had "a few weeks, 2-3 months at most". He's still going strong! Physically he's defied all the odds and is planning a 50 mile cycle on a tandem bike with his friends for tomorrow (Don't ask - my heart's in my mouth over that one!) His symptoms are cognitive/mental and are more like dementia than cancer. 

    Stay positive. Take each day as it comes and focus on the facts as they present themself and not the what ifs.

    love n hugs

    Wee Me xx

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

  • Hi CarrieA.  I'm looking after my husband who has been getting treatment for GBM4 since January 2023.  Keep on writing if you don't feel like you can say the words just yet  As WeeMe said you can reach out to MacMillan for both emotional support and practical support.  Your clinical nurse specialist should be able to offer practical advice, too.  It has been hard for me because I"ve always considered myself an independent person, but I've found at times I needed help on many different levels.  I couldn't keep everything to myself if I wanted to.  Being connected with friends and family has helped.  Things like taking my husband to some of his appointments, planning a trip to the seaside, or just going out and grabbing a coffee and chat can help.  That being said, sometimes reaching out to someone who is outside of the situation helps because you don't need to worry about holding back to spare the feelings of family and friends.  For me, this forum has been an invaluable resource because other members have been there or are currently going through it.  Sending hugs your way.