NEW ARRIVAL

Hi I am new to the forum, I think I am looking for support as I am feeling frightened and unsure how I am going to cope or my family are going to cope when I pass.

I was diagnosed with Grade 4 brain tumour on the 30th May after surgery took 70-80% of the tumour away.  I started Radiotherapy on the 27th June and chemotherapy tablets on the same day I have been coping well with the treatment and am just starting to feel a little tired now.  I am on treatment 20 tomorrow with 10 more to go.

I had the remainder of my hair clipped off yesterday and am feeling cold and a little shell shocked by the look of me now but also feel strong that I did it in my own time and it was my decision. I had 'good' news a week ago that my cancer cells are strong methylated, i feel this should give me hope that I will live longer than a year (even though no doctor has said I will die in a year this is the statistics i have seen), and I am hoping this means I now have a fighting chance to live longer with the strong methylated cells.

As I am writing this I have so much confusion in my head and am crying as every time I think of it I just want to cry.  I did decide when I received the news that I would deal with one day at a time and positive mental attitude and I do have it the majority of the time but cracks are starting to show.

I have wonderful support all around me, husband, adult children, adult stepchildren, friends etc. but no one knows what I am feeling.

Hi Christine,

Welcome to the forum and so sorry to hear your news. I care for my my wife who has a GBM and we're 13 months in. Like you thankfully she was able to have surgery and treatment so I guess she was "lucky" but we know that it will return sooner or later.

Her tumour is methylated as well and I know the statistics are gruesome but she's still doing well with little signs of deterioration since initial diagnosis. The only thing we've had to do is put her back on steroids as her mobility started to really suffer when we stopped them.  

It's totally normal that you have your down days. My wife is super positive 90% of the time but there are times when you are reminded of the long term outlook and it's just too painful to ignore. This week we passed by the university in town and all the graduates were outside in their gowns and mortar boards. It's very unlikely she will live to see our children go to university (they're 15 and 13) and she was very quiet for the rest of the day. But like I say most of the time she stays in the moment and we have so much to be grateful for. It sounds like you have a supportive family, don't feel like you have to be strong for them all the time. They'll understand when you feel the need for a good cry.

There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this forum to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

Have you been offered any counselling at all? Either way it’s always good to talk so please remember you can 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.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

Wishing you all the best with the rest of your treatment and sending a virtual hug,

Chris

HI ChristineMc

a warm welcome to the online community. So sorry to hear about all that you're going through but I firmly believe a positive mindset plays a huge part here.

I've been supporting my husband through his GBM journey since Sept 2020.He had surgery to debulk his original tumour followed by 6 weeks of oral chemo/radiotherapy in combination then declined all further chemo offers in Jan 2021. He's a fitness freak (marathon runner) and has maintained his fitness regime as far as he could throughout. We are now in the palliative care phase as they discovered fresh tumour growth in Nov 2022 but he's far exceeded everyone's expectations throughout. Even yesterday he completed a  100k tandem bike ride with his friend in the driving seat. 

Something to bear in mind - it's the strongest most resilient people who show their emotions. It's ok to feel confused and upset. You've been through a lot and are still going through it but by releasing those emotions you are processing them and that's the healthy approach to take here.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer that 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 though I'm sending you a huge virtual hug and lots of positive energy. Stay strong. You're coping so much better here than you give yourself credit for. (You'll just need to trust me on that)

love n hugs

Wee Me xx