Cancer Research UK main site

Dad diagnosed with terminal brain cancer

rworthington1987
Offline

My Dad was diagnosed last Monday with a high grade Glioma which they suspect is Glioblastoma, appararently one of the most aggresive and deadly forms of brain cancer. They are reluctant to take a biopsy or operate on him due to his presenting symptoms and a risk of him being paralised and not being able to communicate with anyone ever again.. my dad has made it clear to all that he does not want that and any risk of that is not acceptable to him.

He is 71 and also suffers from low grade prostate cancer, aspestosis and T2 diabeties - he has a superpubic cathiter but current has a uti due to an abses in his prostate that burst... other than that he is strong for his age and has a healthy appetite (especially with the steroids!)

He was initially taken to hospital on 30th March 2019 with suspected stroke as he couldnt talk or understand much, after an MRI and CT they reported back that they had found a large brain tumor and we where sent off to meet with the nero-oncology MDT in St Georges Hospital - they gave us the news that they believe this is a high grade Glioma most probably Glioblastoma and said my dad has weeks to months to live if no treatment is given!

2 days before this happened I spoke to him on the phone and he seemed normal although he was half asleep watching tv...

Im struggling to accept any of it especially with how well my dad is now doing - he was released from Hospital this week after doing some speech and language therapy and is now walking around and being quite normal apart from a little confusion and he has slowed down quite alot, we also have to talk to him slowly and clearly so he understands or he gets lost quite easily.

He has done his first Radiotherapy consultation on Monday and had his head mould made on Tuesday this week ready for a 5 day a week course of radiotherapy lasting 6 weeks along with a pill version of chemotherapy.. st lukes have said that wont start now for four weeks (14th May 2019) but say this is normal!? Im not to sure what to expect over the coming weeks / months but am just doing all I can to research and try to find something to help him / extend his life as long as possible - if anyone can help with any clinical trials or new treatments that I may not have spotted, Id be really grateful to hear about them.

I have started him on CBD oil and that seems to be helping him out quite alot and definately helps with his anxiety and when he gets upset / angry about it all.

His initial prognosis was based on the brain scans and his inability to walk at all and hardly talk a few words, he has improved so much since then I cant accept that this is as fast growing as they have lead us to believe... I am praying they have got it wrong.

From what I have heard and read so far this is such a cruel and horrible form of the disese (all cancer is evil but apparently glioblastoma is relentless) and im shocked that so little is known about it - I can see he is not doing well but he is so strong and is just carrying on like normal... Im dreading the coming months but am doing all I can to stay strong for him and will fight this by his side everystep of the way.

If anyone can help us beat this or knows others that have please get in touch asap - thank you!

  • Offline in reply to grandslam

    Hi,

    I’m so Sorry o hear about your Dad and I’m glad it was peaceful . All I can say is i’ve been there and time does heal. Also you never ever forget and even 12 years on ( I was 26 when I lost my dad ) it still feels he is part of my life and my family. I still think about him every day . The sad memories go and you’re left with all the good ones . Just take care of yourself , be kind to yourself and give yourself time and spend time with people and time does heal,

    take care,

     

    Verity x

  • Offline

    Hi, I'm so so sorry about your dad. We lost our dad 2 weeks ago to the same cancer. Back in August 2019 dad was absolutely fine then his eye sight started to go! He wasn't well! Tests show he had brain cancer ! After a lot of tests!!! He died on the 25th April 2020. Dad came home 1 night and he only had morphine that night before he died.  No pain! Thank god! Because of covid19 we couldn't see dad but the nurses kept saying his good! Well the day they bought him home, he was not good! We have since had a meeting with the hospital and they basically lied!!! Dad wasn't good! And at no point was we told he was dying!! We can't argue because it won't bring my dad back!! But at least he came home for one night with my mum!! It's the worst cancer ever because it's so quick but in our case my dad didn't want to carry on without his sight or legs!! And at 75 he got to see us all married, grandkids and fantastic family holidays so I count myself so, so lucky!! But I still miss dad! ️ ️ ️

  • Offline in reply to Felic1985

    I can't believe almost a year on and I have lost my wonderful, amazing dad. Dad passed away on 7th May at a hospice, where he stayed for only two days. As I mentioned in my previous post, he said no to radiotherapy and went for oral chemo tablets. The chemo seemed to keep the cancer at bay and he managed 10 rounds but the steroids caused his sugar levels to spike and this caused big issues for him with his diabetes. We had a couple of hospital visits, with nasty infections that he managed to fight off, he was a fighter, but to be honest, the chemo and other medication really affected his mobility and this changed his quality of life dramatically, and quite early on! Dad was given 6-18 months and he made 14 months, we are so proud of him and his fight with brain cancer. Dads personality would change and he would become more aggressive when the steroids were wearing off, he struggled with his speech which got worse at the end. I would say the big turning point was when he started sleeping most hours during the day, this started back in January and I was concerned then. It meant we only had a few hours a day but we tried to work around that. The last 4 weeks of his life he was more confused and we knew the brain cancer had progressed, he went to a hospital and they increased the steroids but the dose was too high and not sustainable especially with his diabetes. They reduced the steroids, and it meant more confusion for dad. He managed well for those few weeks and we had some very special moments, as well as hard ones, and then dad deteriorated quickly, in a matter of days. He was in a lot of pain the night before he was admitted to a hospice, but otherwise he managed with some liquid morphine at home. He knew he was dying and his body was shutting down, he requested a hospice and within 2 hours the ambulance team had picked him up! I held his hand and comforted him but after we followed him to the hospice, we were not to see our dad again. The corona virus has meant no visitors, only one person who must be from the same house hold. Dad sadly passed only with nurses by his side, we will be forever indebted to those who cared for him and stayed with him until the end. He was a proud man and in many ways, I think was pleased to not die at home but be at home for as long as he possibly could. 
    I really don't know how I will ever be whole again, my dad was my world and we had a very strong connection. We worked together, holidayed together, he looked after my children and we saw him most weekends, the void is huge and the disbelief even now of the journey we have been on. Not sure I will ever get my head round it. How can life be this cruel, how can cancer take so much, in such little time. 
    I feel empty and numb inside and the thought of not seeing or speaking to my dad again, makes me sick to my stomach. 
    my dad was 65 years old. 
    Sending love and strength to anyone dealing with this beast of a cancer. 

  • Offline

    Hi

    I'm really saddened to hear your story. My father had a suspected stroke in November 2018 and was diagnosed with glioblastoma in January 2019. Like your father, he was taken into the hospital with a suspected stroke but was fine the weeks and months before.

    How it will affect him may depend on where the main processes are. The most aggressive part of the process for my father was on the right frontal lobe and originally he lost his speech but was otherwise fine. Over a few days (and before the diagnosis) his speech started to recover. Then in late December of 2018, he lost his ability to walk.

    My dad was a very determined man, his speech and ability to move both improved with the help of targeted physio. After radiotherapy, my day showed further signs of improvement physically, but his cognition dropped. Over the next few months, my father's speech and physical ability deteriorated. He passed away in July 2019.

    I think it really depends on where the main processes are in your dad's brain as to how this will affect him. Glioblastoma is a dreadful disease that takes our loved ones from us but one thing that really comforted me was that my dad never really complained of any pain with his illness.

    I know this response is quite late so I hope that you got to make some lasting memories with the man that you remember.

  • Offline

    I have been diagnosed with a stage 3 glioblastoma multiforme which is an aggressive cancerous brain tumour and arent expected to live for long. I know what he is going through and the only advice i can give is to support him and spend as much time with him as possible because having cancer is lonely.

    Also dont forget to look after yourself and if your feeling down then do something for you like watch a film or go home and have a bubble bath. dont feel pressured to spend all your time with him

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.