Glioblastama 4

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Hi, I am looking after my brother who was diagnosed in May 2022 with 3 glioblastamas, he had terrible headaches and was confused, not sleeping, locked himself out of all bank accounts and credit cards, plus many other scary things. He lived on his own at the time, divorced and moved to his own house. The symptoms and changes in his behaviour were a mystery to me and as we were living an hour away from each other I couldn't understand what was happening to him as I didn't see him all the time. I realised something wasn't right and drove over to find him in the back garden looking like he hadn't washed or eaten for quite a while. He had terrible headaches and was very confused. I packed a bag and took him home with me and a day later he vomitted badly and I realised I should call an ambulance. They finally scanned him after 3 or 4 days and gave us his diagnosis. Since then we have a consultant in Guildford who started him on radiotherapy, oral chemo and steroids amongst other things. He then became diabetic which was brought back under control by more medication.

Life has turned upside down since then, it seemed the Dexamethasone destroyed his general well being. He had bad falls, couldn't walk we had to get a wheelchair to take him to hospital appointments as collapsed on one side and fell. He spent 3 months in bed and then got Pancreatitis and clots on the lungs. Back into hospital spent a week diagnosing and treating. He came out and has continued with oral chemo for 11 months in total so far. Last months MRI showed new tumours and they suggested Avastin alongside Lomustine (another chemo). He is already changing, he shuffles around, staring, short tempered, and becomes angry quite quickly, I guess there is more to come. There is another MRI in 3 weeks and I am dreading the results. A surgeon has suggested he could operate and remove the largest tumour on the right frontal lobe, although initially we were told surgery wouldn't be possible. I am terrified of the risk of surgery for him as it is not a cure and wonder what quality of life this would give him. He hasn't got much of a one at the moment.

I am heartbroken at the thought of losing him and hope I find the strength and patience to care for him on his journey. I am so desperately sad at times I find it hard to pop out and see people getting on with their lives out and about doing everyday simple things and feel envious. It has taught me how precious life is and I will keep fighting for him.

It sometimes helps to write things down and felt I wanted to join others who are going through a similar journey.

  • HI Thimble

    a warm welcome to the group. So sorry to hear about all you and your brother are going through. Life is too cruel.

    I'm supporting my husband through his GBM journey so I can empathise with what you are going through. G was first diagnosed in Sept 2020 so we've been riding this emotional rollercoaster for a while. 

    This 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 that virtual hug when its needed. You're not alone. We've got you.

    You might want to explore a couple of the other groups within the online community- Glioblastoma multiforme brain tumour forum - Macmillan Online Community and Carers only forum - Macmillan Online Community. I've personally drawn a lot of support from these.

    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.

    You're right- writing things down does help. One of my own key coping mechanisms is journaling. Sometimes when you see it all written down on the page it takes away a lot of the fear of the situation. You might want to try it.

    This is a gruelling ride so please make sure you are taking time for yourself too. Taking "me time" isn't selfish, its essential to help you keep your own wee batteries charged. I get that catching up with friends who are happily moving on with their lives can be tough but there's a lot of therapeutic value to be found in those coffee/wine catch ups too. Even a quick walk round the block can help.

    For now though I'm sending you a huge virtual hug and lots of positive energy. You are coping so much better than you give yourself credit for (you'll just need to trust me on that). Stay strong.

    love n hugs

    Wee Me xx

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

  • Thank you so much for your reply. I have read about your journey and my heart goes out to you on how amazing you are. Not only are you keeping your family together with your strength you are also helping so many others with your wonderful words and empathy.

    I will take time out just hard as my parents are 91 and 90 and mum disabled they also need my care. It’s just sometimes as I’m sure you know when they change it’s hard to be quiet when they are so angry or so very different to how we know them.

    you are also doing an amazing job and your husband is found so well great he has his passion of running to channel some of his frustration and thoughts into. Wishing you well on your journey too I will stay in touch.

  • I’m so sorry for your brothers troubles and problems you’re encountering. It is a cruel horrible disease. Wee Me said it best and this is a good place to vent and find support. I hope all goes as well as it can ( hugs )

  • Thank you WJ so nice to be able to share