Help brain tumour

Hi Stoneyquine

So sorry to read about your mum and totally not surprised by your reaction. When my wife was first diagnosed with cancer I mistakenly wrote off people on palliative care only to discover it can just mean there is not a cure. In some ways my wife's cancer is not curable so her care could be called palliative but after 6 years we got to living with rather than dying from cancer.

Definitely get when you say about it not being your mum any more though when I think of my dad. His issue was not cancer but we lost him bit by bit and in some way felt totally cruel.

One of the questions often asked is "how long" and while the doctors can give general answers who is this "average".

So glad you found the way to post on here though, we all struggle sometimes more than others and perhaps feeling a bit more contact can make us all feel less alone.

<<hugs>>

Steve

Hi I am so very sorry to hear about your Mum, I understand exactly how you feel, I was told a few weeks ago that my Dad has lung cancer and metastatic brain cancer and probably a maximum life expectancy of around 3 months...there's nothing they can do, apart from giving him steroids to try and reduce the swelling in his brain...it was all so sudden and prior to that he seemed to be doing so well for his age, such an enormous shock, I'm really struggling with it too...sending you love xx

HI Stoneyquine

so sorry to hear about your mum's diagnosis. I can empathise with you here. My husband ( now 52) was diagnosed with a grade 4 brain tumour in early Sept 2020. It is an aggressive form of tumour (GBM4) but the neurosurgeon could operate to debulk the tumour at the time. Two days before the surgery, my husband had a seizure and to be honest the man I married disappeared forever in those few short traumatic minutes. 

He's not been the same person since but he's defying the odds and is still with us.

As Steve has already said there is an element of learning to live with cancer rather than dying from it. Receiving the diagnosis and getting your head round round all those terrifying medical words that are likely to be flying about takes time. It's SO overwhelming in those first few weeks. I remember it all too well. My advice for what's its worth is to write down all your questions and concerns, no matter how trivial they may seem, and ask them of the medical team. Personally I find it easier to cope when you know the truth (even when I don't like the truth) than it is worrying about the "what ifs". 

This community has been a huge support to me as I've navigated my way through the past 15 months or so. There are a couple of other groups that you might find helpful here too (I do). They are  Brain cancer forum - Macmillan Online Community and Carers only forum - Macmillan Online Community

In any of the groups you will always find folk who "get it" and are there to listen and offer a virtual hug when its needed. 

It’s always good to talk so remember 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.

Something else that's really important is to take time to take care of yourself. "Me time" is essential for helping you through this, even if its just 10 minutes to sit down with a coffee and a book or to take a walk. I also find journaling really helpful. 

right now I'm sending you a huge virtual hug. You're coping so much better than you think you are (trust me on that). Stay strong. Stay positive.

love n hugs

Wee Me xx

Thank you all so much.  It’s the not knowing that scares me.  In my “ordinary” life I am in control of nearly everything.  I make the decisions and know abs understand why those decisions are made.  I feel helpless. Angry and sad. No one knows the future but as long as mum is pain free and comfortable I will be eternally grateful.  

Thank you Wee Me. That's really helpful to hear about your experience. I'm very sorry your husband changed when he had the seizure just before surgery. But I'm also really heartened to hear that he is still with you over a year later.
I'm new here. My adult daughter is about to have surgery for an "aggressive" brain tumour.

Hi Stoneyquine - i completely empathise with you feeling in shock. we found out just over a week ago that my husband has stage 4 cancer its a real rollercoaster of emotions to go through. I've called the helpline twice - once for emotional support and once for some practical advice as my husband starts chemo tomorrow. Each time the person i have spoken to has been brilliant so dont feel worried about reaching out to them. They are more than happy to listen while you let your emotions out and it might help you feel a little better. 

thinking of you. 

Hi Firelight. 

Glad my words were a help. So sorry to hear about your daughter. Sending you lots of positive vibes for a good outcome from her surgery and sending you both a huge virtual hug.

Hang in there. Stay strong. Stay positive.

love n hugs

Wee me xx