Hi everyone!
Posted this in the gmf forum but wondered if anyoen could help here too...
My (26) mum got diagnosed with a glioblastoma (aggressive brain tumour) in autumn 2023. She's since had surgery to debulk the tumour and has been undergoing radio and chemotherapy. Initial prognosis was 12-15 months with treatment.
She's doing well but has quite intense changes in her mood - some days happy to be there with me and others can't find any joy or happiness in anything. We also lost her mum (my grandmother) just before Christmas so it has been an especially difficult time. I love my mum wholeheartedly - she is the most caring and loving person i know - but she's not a generally happy person and that can make things extremly difficult at the moment.
My father is doing most of the caring and i take her to the hospital a couple of times a week. He seems to be very unemotional about things and just keeps saying how numb he feels. He is snapping at her a lot which is both understandable as she is being moody and hard work at times, and horrible to see because she is going through so much.
Recently i've been really struggling with just how angry i am about the situation, and how unfair it all feels. We haven't had a prognosis meeting with the doctors since the initial diagnosis and treatment plan, and whilst the doctors keep telling us its going 'well', its hard to know quite what that means. My mum doesn't want to know so I can't ask in any of the meetings we have with them.
My parents are both uninterested in finding support outside of the three of us. My friends and my partner have been lovely but often just don't know what to say or can only really understand the sadness, not the guilt, anger, confusion and sometimes hilarity that comes with this situation. At the moment I am struggling to cope with things - does anyone have suggestions of where they've found support? There seems to be so many options out there of phone lines and centres to go to that I can't work out where to start and whats for family/carers like me rather than for patients themselves.
Also struggling to just keep going with everyday tasks - doing the dishes just feels so irritatingly small and constant at the moment. Any advice on how to let the anger out?
Thanks all
Hi Porgiepie welcome to the forum and I am so very sorry to hear what is happening for you all and how that is leaving you feeing, but little wonder with all the changes and uncertainty around for you all. MacMillan are there for everyone including the Carers and happy to talk with people like you who are both struggling and not knowing where to turn to so please do give them a call and have chat. 08088080000.
I hope things start to ease off a bit for you but its good to talk so pick up that phone and call, they are open from 8am -8pm 7 days per week.
gail
