My husband was diagnosed with a glioblastoma multiforme in February 2020. He was a fit hardworking builder until he had a seizure Christmas 2019 to start with the doctors said it was a benign glioma but only 5 weeks later it had turned to stage 4.
They operated to remove as much as they could but were only able to do a biopsy as they were worried they could do more harm than good
He coped well with radiotherapy and chemo and his tumour was stable for around 6 months, unfortunately it began to progress so he started on a more aggressive chemo.. after 3 rounds he had a scan and they found his tumour was still growing.
He has now stopped treatment and there are no other options available. He's only 54, we have 3 children aged 10, 14 and 15, its just so cruel.. within 6 weeks of stopping his treatment he has started with other symptoms such as numbness down his left side, slurred speech, headaches and a facial twitch
I'm trying to carry on as best I can, working and sorting the kids but its soul destroying seeing my husband like this... he wont accept help from anyone or services but then panic because he has no one helping when he needs it.. I dread what the future holds
Hi Sal29
welcome to the group. So sorry to hear about your husband's diagnosis and about what you and your family are going through.
I can empathise with you here. My husband (then 51) was diagnosed GBM4 in Sept 2020. He had surgery to debulk the tumour, went through the 6 weeks of oral chemo/radiotherapy then in Jan this year said no to anymore treatment. A decision I need to respect.
HIs tumour was stable until July and there are signs that it is growing/spreading. Unfortunately the hospital mess up his last MRI and the oncologist said "scanning abnormalities" meant he couldn't give us an update. Beyond frustrating! Our next round of appointments are mid-January.
Like you I am carrying on as best I can. I'm still working fulltime although luckily I can work from home. Our kids are older (21 and 23) but its so hard to watch everyone go through this journey. My husband won't accept any help either. Too stubborn for his own good. I suspect when the time comes though he won't have any choice but to accept help.
Please make sure that you take some time for yourself regularly, even if its just 15 mins with a book and a cup of tea/coffee. You need to recharge your batteries here and taking time for yourself isn't being selfish its essential to your wellbeing.
This group are really supportive. There are two others that I have drawn a lot of support from over the past year or so. They are Carers only forum - Macmillan Online Community and Brain cancer forum - Macmillan Online Community. You'll be warmly welcomed there too. There's always someone around that gets it, someone to listen and offer a virtual hug when its needed. It’s always good to talk so do 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.
Sending you a huge hug just now. Stay strong. You're doing so much better than you think you are - trust me on that.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
