Good morning everyone, my husband had a left peripheral vision problem on the morning of the 3rd of November, previously he can recall only 2 occasions of an eyesight issue but nothing too worrying. That day will always play in my mind over and over, l sent him back to bed and took the dog for a walk picking him up some migraine tablets. When l returned he had a severe headache so l decided to get him an appointment at our GP, unbelievably we got in the afternoon of that day, but cancelled as he was violently sick. He went to bed and called me upstairs around 3 hours later saying he could see a bright light and had a warm rush over his chest, he then had his first seizure, and was sick again. 111 said that if he could talk lift his arm, and his face hadn’t dropped l was not to worry too much !! But advised on calling and ambulance if it happened again, it didn’t and he slept all night. The next day his headache was intense and l called our GP again who said he was to go straight to A&E. 4 MRI/CT and a biopsy later, we were told it was a stage 4 Glioblastoma. We were told that without treatment he has 6 months with treatment about 2 years.He starts Chemotherapy and radiotherapy on the 18th, but is currently collating all his medical records to see if he can get some immunotherapy. Please can anyone else tell me if this is a good decision on his part or will it take too long to get him in treatment, and to just stick with chemotherapy and radiotherapy.? Lastly l need to say his personality has been robbed, he was so active and now he’s a shadow of his former self, we both look haunted. Glioblastoma is an absolute #*¥#%!? It’s stole our future hopes, and old age.
HI Lilyandreasmum
a warm welcome to the online community. So sorry to hear about your husband and all that has been going on. Cruel scary times.
My husband was diagnosed GBM4 in Sept 2020 following a funny turn while out running a few weeks beforehand. He forgot what words and language were. Did he turn round and come home- no he kept running, trying to read the name badges on the cars he was passing until things slowly came back. He was scheduled for surgery on the Wed but had a seizure on the Monday. To be honest, he's never been the same person since so I don't really know how much was due to the seizure or the surgery. Physically he's still in great shape. Mentally he's more confused and a bit like someone with dementia. We were told before his surgery that without it he had 3 months and with surgery and chemo/radiotherapy he had 12-15 months. And here we are 28+ months down the line....
I've come to accept that the timelines offered are best guesstimates based on averages. Everyone's experience is unique and the impact of the tumour unique to them.
This group has been a great source of support to me personally over the past couple of years so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone.
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.
With regards to your questions about treatment, after his surgery and the initial six weeks of oral chemo (TMZ) and radiotherapy, my husband opted to decline all further treatment. A decision that I had to respect.
In Nov 2022 the MRI showed that he has 2 new active tumour areas and 2 potential tumour areas. He was offered further oral chemo (TMZ) but again declined wanting to balance quality of live over quantity. He's a marathon runner and is still able to run daily so that's all he wants to do. I get it.
I'm sure there will be others along shortly to share their thoughts and wisdom on the various options on offer. Can I suggest that you write down all your questions/fears/concerns and take those notes to your next oncologist appointment to help ensure that you have all the answers you need to help you both make the best decision in your situation. These appointments can be emotionally overwhelming so the notes might also help to key you focussed.
Please make sure that you take time here for yourself too. This is a gruelling emotional roller coaster ride so please take time to recharge your own batteries even if its only 10 minutes in a corner with a coffee and a book. Taking me time isn't selfish, its essential to help you to be in the best position to support your husband here.
For now, sending you love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
