My dad was suffering from seizures at home the Friday before Xmas. He was ambulanced to A&E and admitted. Initially they diagnosed encephalitis but on Xmas eve we were told he had brain cancer. All communication stopped over the holiday period. Meanwhile he has been moved on 4 different wards and has been very confused and hallucinating. They have now moved him to a dementia ward. Luckily I managed to speak with a lovey macmillan nurse today and she gave me the confidence to speak up and advocate for my dad. He was not getting the care he needed. Last night at 3 am he was confused whilst in the loo and became agitated so they called security on the ward. He is covered in bruises and is now petrified. We won’t get to see the MDT until Tuesday. It’s just seems a never ending nightmare
Good evening Sophs I am 61 dad and grandad. My tumour journey started the same as your dad my son tell me how bad I was when admitted to hospital for three months while they diagnosed my tumour. I can’t remember anything about that time, cannot remember operations, chemo or what I went through. My son showed me photos with tubes going everywhere. Apparently I told the consultant where to go, and would pretend to be a sleep when physiotherapist came around , i at first couldn’t sit up or walk. My son thought I would never see my two born grandchildren.
All I can say I know back living on my own in a flat, cooking and cleaning etc. Last scan shows it’s now inactive,. Sorry cannot remember name of tumour, or I’ve ever remember is the consultant getting all family in and telling us I had rare form of brain tumour, didn’t respond to chemotherapy so I stopped it and he telling us I had three months to live. That all I remember, and that was three years ago.
This horrible disease is still providing the doctors a pain.
Really hope your dad can come through your families journey and can come out the other side and can start to prepare to start a new journey which is what I am doing now. Really hope your dad gets all the treatment needed. Please keep in touch if you want.
Graham
Oh Graham that sounds awful for you but I’m glad you are on the mend. I just feel so helpless. My dad hates being in hospital and just wants to come home but my poor mum can’t cope with him. One more sleep until we find out what his treatment plan is. Thank you so much for reaching out it means a lot
Thanks for reply my x left me , she was having affair while I was in hospital for three months. So yea understand your mum’s thoughts, my son tells me my mood changed so much , I didn’t give mum any other option. This disease mucks everything up. I hate hospitals as well , horrible food, my family used to bring something nice in went they visited. Hope your Dad gets some good results and you all can worked together to get you all through this. Couple of years ago all I could see is darkness but now there is sun shining through the clouds. Keep strong and positive. If I can help in anyway please contact me personae email is grahamt56@icloud.com.
Oh Sophs, that sounds horrific treatment. Please make sure you raise a complaint on behalf of your dad.
There's never a good time to get a diagnosis but I can imagine it is more challenging to get answers over the festive period. In the meantime, take things one step at a time. Focus on what you know and not the "what ifs". It would be a good idea to write down all your questions, fears, concerns ahead of the next appointment. Take those notes with you and let them act as a script to make sure you don't forget to ask about something that's important to you. There's no such thing as a a silly question.
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 a virtual hug when its needed. You're not alone. we've got you.
For what it's worth, I supported my late husband through his 3 year stage 4 brain cancer journey and a lot of his symptoms were cognitive and very similar to dementia so perhaps the staff on the dementia ward might be more understanding of your dad's situation than in a general ward.
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 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
Thank you so much for your kind words and advice. Yes I’ve spoken to PALs today and tomorrow we should hopefully have a plan (if there is one) I’ve just got back from the hospital now and he seemed a lot calmer today. Thank you again. It means the world to know you guys are there
Oh Sophs I am so sorry. That's the path we walked too. (The gist of our story is in my bio)
Take time to process this but please also bear in mind that timescales are best guesstimates based on published averages and no one is average.
We're here for you. We get it. We understand. You're not facing this journey alone.
You might also want to explore this group Glioblastoma multiforme brain tumour forum | Macmillan Online Community. I personally drew a lot of support from it.
sending you a huge virtual hug and lots of strength.
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I’m so sorry, the only thing I remember about my cancer and apparently In hospital for three months until my son and x fighting to get me home. With three months as chemo etc failed. Three years later still here and now living on my own cooking cleaning etc . Hope my story gives you some hope. All my wishes etc are going to you and family. Please stay in touch and keep your chin up.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007