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Dad diagnosed with terminal brain cancer

rworthington1987
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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!

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    Guessing no one can offer any advice etc...?

  • in reply to rworthington1987

    Welcome to Cancer Chat, rworthington1987.

    I'm so sorry to hear about your dad's situation, this sounds like an incredibly difficult time for all of you.

    Hopefully other members who have have similar experiences will pop here soon to give advice and offer support. Until then I thought you might benefit from some information we have on our website about glioma in adults, to have a read please click here. There is also a page which addresses the type of support, both practical and emotional you (in this case ,your dad) can get when facing this diagnosis.

    I hope these links can be a bit of help during this rather trying period of your lives.

    Wishing you and your dad all the best,

    Renata, Cancer Chat Moderator

     

  • Offline in reply to rworthington1987
    Hi, I read your message and wanted to reply so joined this . I am so sorry your dad is poorly . My father had the same type of cancer , he sadly passed away in 2006 and was my world . He looked after my sisters and I as my mum had depression for years . I am 39 now and he died when I was 26. All I can say is that every situation is different and trust the doctors as I found that hard to do and made the whole time my dad was in hospital harder for myself and maybe for my mum and sisters ( I even wrote a complaint type letter when he did fall into a coma and pass away .) the doctors really did so much to help and were experts . My dad was in hospital for about 3 weeks before passing away from swelling and cancer after brain surgery ( a risk of surgery but not that common ) so it does effect everyone differently . My dad was never discharged and your dad does seem to be doing well . I researched trials and different treatments every night till I was so tired after hospital visits all day and never found a thing . All I can say is to trust the doctors as they are experts - they will know any new treatments or the best available for your dad . Please be kind to yourself and look after yourself and focus on spending quality time with your dad and let the doctors do the rest . Impromose yoi theu wikl dk everything they can . Although this type of cancer is so serious my dad I don t believe suffered too much , nore did he ask much about it or seem too scared about prognosis and Life expectancy etc . Treatment and how people react seems different for every patient . The doctors will help and will take such good care of him . Your dad seems a very special person to you . I am so sorry to hear you going through something so similar and wish it could be different . Please just treasure your time with him and let the doctors do their best . Sending you lots of kind Thoughts
  • Offline in reply to rworthington1987
    Hi Just just happened to log on as I got a message from the chat room that someone has replied to a message I had sent them 8 months ago. I wrote my reply to their post but never checked again to read her reply. We both were in the same positions with our fathers as you sadly find yourself. I would happily share privately what I sent her. I feel what I wrote was honest and frank. Like you I spent hours pouring over forums and reading about latest research. Sadly little can be done. A little time can be bought, but I believe there is no “cure” at the moment to this heartbreaking cancer. I will share if you’d like. Sara
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    Hello.  I too joined to respond.   My mum has just found out that her cancer has spread to to her brain (last week) and I think that we are both still in shock.  I have no words of advice as I feel we are on a similar road, and cancer is something that, as a family, we’ve not had to deal with before.  I just wanted to say hello.

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    My brother was diagnosed with a stage 4 glioblastoma in July 18... he was operated on within 48hrs and then had the chemo and radio which we now know hasn't worked all it's done is feed the tumour.. his mobility is bad and hes very angry.. hes also very swollen the last few days and looks yellow today and hes cold all the time it's awful to see him like this he doesnt wana know how long he's got but looking at him the last 2 days I see a look in his eyes I've never seen before and I'm scared hes only got a very short time left.. my mum has a very bad chest infection and shes had to stay away from him for over a week which is killing her 

    I hope you have better news than us xxx 

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    I am so sorry to hear about your Dad.  My Dad had the same, its so hard to let them go and I know I felt so angry at loosing him.  But the brain was kind and he felt no pain and would often drift off to sleep in mid sentence.   I cannot offer you a wonder cure, but on my experience the journey was quiet and peaceful and no pain, so while it is so hard to loose the one you love.  It was a comfort to know he knew we were there but went out of this world peacefully.

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    I’m so sorry to hear about your Dad. My dad is going through the same and we are all in shock and heartbroken. My dad is a brilliant man, so clever and dominant too, it’s heartbreaking seeing this horrible disease attack him. My dad is taking the oral chemo tablets but decided against radiotherapy. I worry how long this gives us but feel he made the right choice, as he was concerned how he would feel following the radiotherapy and quality to quantity is what is important to him. We can only watch and support, as of course, it is down to him.

    Wishing you all the best cor your journey ahead; you are not alone. Xxxx

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    Thank you so much to all who replied with your heartbreaking stories and positive wishes for my dad and myself. I havent had chance to get on here as have had a whirlwind of a time sonce posting.

    I hope to reply to everyone that responded to me as soon as I can.

    Sadly my dad took a turn for the worse on Friday and was readmitted to hospital bank holiday Monday.

    He lost his fight wih this terrible Disese at 9pm on the 10th May 2019. Im numb and feel so empty and lost.

    My heart goes to anyone having to go through this. Its so hard and so relentless. His death was quite peaceful apart from noisy breathing and hot and cold flushes he seemed in peace.

    All of the staff at the hospital and the paramedics that came to the house were so amazing im not sure how I will ever show them how grateful I am for the love, care and respect they showed my Dad.

    I imtend to reply to all the replies but need to take some time to process. I just wanted to say thank you to all that replied and gave me hope in the final weeks of my dads life.

  • Offline in reply to rworthington1987

    Hi. I’m so sorry to hear about your sad loss. Sadly your dad’s death was so very quick after his diagnosis. I can only hope that it was peaceful and that you and your family can take solace in the fact that he is at peace now. 

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