Glioblastoma stage 4.

Hello, Tashie here, self appointed voice of encouragement and hope. Diagnosed July 2024 , surgery in August then the 6 weeks radiochemo then6 months if chemo which ended in May. .Been lucky in I had no side effects , was able to work throughout and carry on with sports and hobbies. Fully understand the feelings of disbelief. I was very healthy before and I still am. 
incurable? Hmm…well what exactly is a cure? There are a lot of long term survivors.

first thing I did was update my will, get power of attorney done and make sure my cheerfully named death book was updated with all the information my husband needs if I go first. 
Now i am living. Another scan this coming Saturday, so Ive had to learn to live with it. Keep busy! Start a new hobby! Take care. 

Thank you for taking time to reply. I'm still not functioning very well. Headaches, unable to walk unaided etc.  Finding loss of independence difficult. I have made a will but not POA , I'll do that today, thank  you. I've started to document important things.  I'm a positive person generally but it's hard to focus or start new hobbies when you feel so poorly at times. I've now got blood clots to contend with.  

I know life isn't over yet and determined to be around for a while longer, I would just like a better quality of life for a while a guess.  

I should add, I was very poorly,  2 major unrelated surgeries,  and various other nasty illness for 4 yrs prior to this diagnosis,  so it's been bit of a battle lately.  

Absolutely you can scream and shout! I did a lot of that when I was diagnosed three years ago - I couldn’t exactly say how it helped, but not doing it was not an option. 

Surgery, chemo, radio, and then my brother died in his 40s a few months later, so life was a massive kick in the chest at that time..

BUT. I’m still here, despite being ‘incurable’, I feel ok, and I’m so happy to have learnt so much about life, to have tried new things, and to have people who supported me. Early days, so let yourself feel whatever you need to. You’ll find a way to get through it xxx 

Hi

a warm welcome to the online community. Sorry to hear about all that you have been through. Life's too cruel.

I supported my late husband through the 3 years of his GBM journey. Like you he had surgery followed by the 6 weeks of treatment then he declined all further offers of treatment. It was his decision and one I had to respect. 

Throughout his journey he rarely talked about how he was feeling. He cried a couple of times right back at the start when he was first diagnosed and when he told our children (then 20 and 22) but to the best of my knowledge he never screamed or shouted about his situation. He refused to accept any offers to talk to a therapist/counsellor. It just wasn't for him.

Everyone copes with this journey in their own way and there are no rights and wrongs. 

As you've all ready seen this is a safe and supportive space so please reach out here anytime as there is always someone around here to listen who gets it, someone to hold your hand and someone 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.

I would encourage you to get the POA in place as that can make a difference much further down the line. G put all those ducks in a row early on and we were able to put that aside for over two years  safe in the knowledge that it was there should we need it.

G was 50 when he was diagnosed and his reason for declining the offer of further treatment was that he wanted quality of life over quantity. That was just his way and I'm not for a second suggesting that it was the right way or if thing would have been better or worse if he'd taken further chemo. He was a stubborn man and it was an argument not worth having. He did however live a full life for as long as he was fit enough to do so. He was a marathon runner so he continued to run and ran PBs in all of his competitive distances up to and including marathon in 2022, he went skiing in France with our daughter, he spent a week in Paris with me, he had numerous boys' weekends away (I didn't ask too many questions about those). He even managed to get a part as an extra in series seven of Outlander because they needed someone to row a boat. ( long story there) I guess what I'm trying to say is he spent time with the people who mattered to him and he made memories.

For now though I'm sending you a huge virtual hug and lots of strength. 

love n hugs

Wee Me xx

Hi Pat,

I totally understand what you are going through.

I am stage 4 GBM diagnosed in March 25. Only 52, have 2 children and granddaughter.

Can't operate on mine, done 30 days radiotherapy with combined TMZ. That ended 30th May and I am still experiencing what they think is the effects of radiotherapy.

The exhaustion has been horrendous to deal with.Im on 2nd round of TMZ but as I'm unmethalated the benefits are low, I take supplements to help (Boswellia, CBD, etc)

I've cried in the shower. I only have so much that I can control.

I've learned to rest when I need to and conserve energy for when I need. I can only manage small things now, for example; a family meal out. I'm hopeful that it will improve, they tell me it should. They think the fatigue is from radiotherapy which they now say can last months.

It's scary, my only advise is to rest if you need to, don't overdo it, listen to your body, have small tasks only. Enjoy what time you can with your family.

I get angry and frustrated, I'm learning to let go of that. It's not easy but recognising these are real emotions and part of the course.

I try to make memories just now, ie, the zoo, meals, spa, theatre. Just what I can. 

I'm not sure if me sharing my experience helps. I've also been exploring my spiritual existence with reading and audio books. I learned reiki 1 last weekend which was a nice milestone. 

I wish you well. It's not easy, I hope you have good support, for me I have a few friends that have been a godsend.

Family are good but mine are struggling with what is happening. 

Thank you for taking time to reply, it has helped, a lot. We are obviously at similar stage, except i have had surgery.  I can relate to everything you have said. The exhaustion and fatigue has been horrendous at times. I do get out, albeit for short periods of time.  I'm making memories. What I can't physically do,  and i can't understand why is,  actually cry or express how devastated I'm feeling. I think i still haven't processed it and think they got of wrong. I like you have aa good support network,  thankfully in my family and close friends but yes, so hard for them.  I feel like I've let them down so badly.  I know i haven't but it doesn't stop you feeing like it. 

I wish you well too in whatever comes next.  Big hug.  X