Brain tumour

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Hi, I'm new here. My Dad has just been diagnosed with a brain tumour this week. We have a meeting tomorrow to discuss treatment options & prognosis.... can anyone advise what questions we should be asking please?

  • Hi, I’m sorry to hear your Dad’s news, I hope you’re all managing ok. It’s a good idea to have questions ready - I didn’t, and left feeling quite confused.  

    take a notepad - it can take a while before you get the details in written form, so it’s best to take your own notes.  Maybe ask practical questions like, can your Dad be alone, can he exercise, can he drive, is there anything he should avoid? And tell them anything particular that you’re concerned about - don’t worry if it sounds silly, everyone’s different.

    getting a prognosis is hard in the early stages, but if the doctors are recommending an operation, you’ll know more after that. Just look after each other till then, and I’m wishing you all the best,

    Alex xx

  • Thank you for the advice, sorry you have had to go through it too. The hospital are arranging carers to help with dressing etc as he's very wobbly & gets confused easily. Carers will take the pressure of Mum & us. We were actually expecting a parkinsons diagnosis so to hear brain tumour has come as a real shock. I guess it's a matter of taking one day at a time

  • Really glad you’ve got help on the way - say yes to any help you’re offered, is my advice. You don’t have to stick with it if you don’t need it.

    One day at a time is right - I was diagnosed with stage 4 two years ago and am thankfully feeling well (after op and chemo etc) and enjoying my life. I’m sending wishes of good luck to you and your family - stay well x

  • Good afternoon I am 60 years my cancer started about five years ago. I have no memory of being in hospital for three months my son thought I never my two new grandchildren, he’s got pictures of me in hospital holding on the twins with tubes etc going everywhere. Five years now got strength back still very wobbly but looking after myself, cooking etc. Had a big package of care when I got to come home. The only thing I remember about hospital etc was sat in consultant and family when he said I could go home with a diagnosis of three months or less. Like I said five years later. Yes live has changed so much but with love of kids and grandchildren life goes on. About a year my wife said she was leaving, with a story that apparently I was doing knowing that I can remember anything about my life when this cancer hit.

    so yes the journey you are starting we will have it’s up and downs. Ride those waves as the calmer waters will appear .

    All the best with jour journey. If you need someone to talk to either let off steam or ask a question. Please stay in touch and nothing will shock me.

    Graham

  • Hi Hull Hiker

    a warm welcome to the online community. Sorry to hear about your dad. Not knowing the full facts is scary.

    There are no hard and fast rules about what you should ask. I'd recommend writing the questions down and taking the notes with you. They'll help you keep on track  during the appointment. Initial appointments can be quite overwhelming. Remember there is no such thing as a stupid question- if its preying on your mind at all, ask about it. 

    I supported my late husband through his glioblastoma journey for 3 years. In the early days the questions were more around what is it, what can be done to treat it, what prognosis are we looking at, what changes should we be concerned about, what happens next etc. In our case the neurosurgeon was very direct with us from day one and to honest I preferred that as we knew where we stood. (you can read the gist of our story on my bio)

    Ask about the things that are important to your dad and to you. Be led by what your dad wants to hear too. He might not be ready to hear whatever the dr has to say and that's ok. This is a scary time for all of you.

    Take it one step at a time.

    This is  safe and supportive space as you've already seen 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.

    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 I'm sending you a huge virtual hug and lots of positive energy. Hope the appointment goes smoothly.

    love n hugs

    Wee Me xx

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

  • Thank you for your lovely response  & sorry for the loss of your husband. I'm pretty sure I'll be relying on this group a lot in the coming weeks & months, it's good to know there's support out there

    Xx

  • Thank you Graham, glad to hear you are on the mend, that fills me with hope. 

    Take care 

  • Not a problem the word cancer spread fears. Okay I have got this far with the low of kids and my grandchildren. Taking a cocktail of drugs live has changed and I look at this a new start for me. Plus being able to talk to people on the start of their journey my story might help them. Like I said if want to chat about or let of some steam drop me a line on here.

    All the best. 

  • Morning Hull Hiker, 

    Been a few weeks not visiting the site, reading through some of my replies. How are things going in your journey, hope your Dad is progressing well. 
    My x wife has left the dh she left me for. She has changed so much since leaving him. She’s back talking to me and even visiting me with the grandkids. 
    Just remember that this rubbish is something that the medical professionals don’t have all the answers yet. 
    Be there for your Mum and Dad , yes he will change with all the treatment and if like me , I don’t like talking about my new friend called Vanderbilt. Yes I have named it and yes I’ve fallen out with it. At the moment we living on our own . 
    All the very best in your journey.

    One2many

  • Morning 

    Sadly since my first post we have received the worst news. Dad's tumour is inoperable & beyond treatment, he has been given weeks to live. He's been home just over a week & on palliative care. It's mainly family taking care of him with the help of a wonderful team of carers & nurses.