Glioblastoma Stage 4

Hi AlexPB and a warm welcome to the Online Community, a Community that no one really looks to see themselves joining, and so sorry to hear about your dad’s diagnosis and yes, supporting someone on this journey can be lonely.

A cancer diagnosis can bring a lot of confusion, stress and many questions but talking with other people who are on the same type of journey can help a lot.

The Community is organised into support groups so you may want to start by joining our supportive Brain tumours group as you will connect with others walking the treatment journey both as patient or family.

Follow the above link then choose ‘click to join' or ‘join’ when the page opens. You can then introduce yourself, post questions or just  join in with existing discussions by clicking on 'reply'. 

You may also find our Carers only and Family and friends groups a great benefit as you will connect with others supporting family through their cancer journesy.

Its always good to talk and the Macmillan Support Services provides lots of information, support or just a listing ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

All the very best.

Hi BrainTumourSupport, I'm so sorry to hear about your dad. My kids are 20 and 23. Their dad, my husband, was diagnosed with a Stage 4 GBM in early Sept. Like your dad, he's had surgery to de-bulk the tumour and has completed 6 weeks of oral chemo and radiotherapy. We were given a timeline but everyone is different. He's due to get more ct scans in Jan and Feb and we'll have a clearer picture then.

The Carers Forum on here have been a great support to me over the past few weeks so like thehighlander says try reaching out there. 

We all feel alone, scared, useless, sad, angry..in fact every emotion in the book and then some.

It's a rollercoaster journey but be reassured that you're not alone. We're all here for each other. I'm not sure I have any words of wisdom for you- I'm still in shock too and trying to get my head round it all but it sounds like we're travelling a similar path so if I can help you I will.

hang in there

Wee Me xx

Thank you so much for replying. I’m so sorry to hear about your husband, it’s so scary how quick it can take over your life. How long was you given if you don’t mind me asking? My dad doesn’t want to know but I’m in 2 minds as I do but I don’t if you know what I mean. I agree about the emotions, I feel angry, upset, all the emotions you can think of and then some days I just feel numb. 
thank you very much, same to you if you need any help then I’m here. 
keep your head up 

Hi BrainTumourSupport, initally before surgery we were told 16-24 months. My husband is 51 and was/is really physically fit (He's a marathon runner) Post surgery that reduced to 12-15 months. After the scans that are coming early in 2021...who knows. Everyone is different.

big hugs

Wee Me xx

That’s so sad, I completely understand what you are going through. It’s just like a waiting game all the time wondering what’s going to happen. Keep your head up 

xx

It's so hard to watch while a loved one goes through such a crap time. My twin brother (23) passed away last week after an 18 month battle with a rare and aggressive soft tissue sarcoma. He joined the army and then the parachute regiment and after 2 years in the job, found a lump on his hand which quickly grew and spread. He was still working throughout his chemo which was incredible. None of the nurses, even the consultant thought he would be able to carry on working with such normality while going through something soo bad. We are soo proud of everything he achieved in his life. 

Sadly in the end his body just couldn't cope. He died of a condition which was caused by the cancer. 

I dont want to ramble on. But I guess my advice to someone watching a loved one battle cancer, is to spend as much time as possible doing things. Make memories. Because you don't know how long anyone will live. Never in a million years did I think that my brother would die from cancer. But he did. Everyone has to be prepared for that. I'm so glad that I got to spend this year in lockdown with him. 

Thanks

Aww I’m so sorry to hear that, he sounds like a true fighter, my thoughts are with you and your family, I am currently struggling with Christmas I’m trying to stay positive but the feeling that this might be his last Christmas just won’t shift at all.