My husband had glioblastoma surgery 30th Dec to Left Temporal Lobe

My wife was diagnosed in june 2024, had surgery, chemotherapy and radiotherapy but in the summertime last year the Tumour began growing again. She is on 16mg of dexamethasone per day as well as a variety of anti-seizure drugs. Glioblastoma is brutal

Thank u for replying it does seem like an awful tumour.   May I ask your wife’s age ? We are 77 and it seems he is not suitable for radiotherapy. We are waiting for results on the tumour tissue to find out about chemo.  

My wife is 66. Some glioblastoma cannot be operated on due to their location, my wife's is in the speech and language area of the left temporal lobe. The radiotherapy took away a portion of field of vision. 

HI Lindy

a warm welcome to the group. Sorry to hear about all that is going on.

I supported my late husband through the 3 years of his GBM journey so I can empathise with what you are going through. He was 50 when he was first diagnosed in Sept 2020. 

Don't be scared at the thought of palliative care. That's the first thing I want to say.  We were handed off to the local palliative team (community nurses and community hospice nurses) eight months before G passed and without a word of a lie it was the best thing that could have happened for us at that point as a family. It lifted a huge weight off my shoulders as I now had a local phone number that I could call 24/7 and know that someone would be able to help. It also meant that the team, especially the hospice nurses and Dr got to know us as a family so that when the time came we were surrounded by folk who knew us and not by strangers. That made a huge difference.

G was prescribed steroids are various points of his journey and prescribed at varying levels. Those wee pills are a necessary evil in the journey. In G's case they made him nasty and he also ate everything in sight! He was on a high dose at one point 12mg I think from memory and that triggered steroid induced diabetes. The medical team will monitor the level of steroids required and won't leave your husband on a higher dose than is necessaery.

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 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.

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

Love n hugs

Wee Me xx

Thanks for your reply my husband’s was in the left temporal lobe as well.  The surgery removed almost all the tumour.   I am so sorry your wife lost some vision.   My husband is registered partially sighted to lose even more vision would have been awful for him.

Thank you so much Wee Me your reply is very comforting. My young grand-daughter rang me earlier today and I was telling her the Palliative Team were coming on Monday, she lost her other G’dad last summer and said how good and kind the team were to them all.   
It seems so sad that a necessary drug can make people so nasty to their loved ones.  
Lindyxx 

It doesn't necessarily mean that your husband will lose any vision, it depends where the radiotherapy is focussed. My wife has had jumbled speech for well over a year, but can solve a codeword puzzle in no time. She gets incredibly frustrated at trying to express the thoughts she is thinking but the words are all wrong. 

Hi BobbyChocolate  My husband is not having radiotherapy.  He does have speech problems like not being able to find words or taking a while to put a sentence together. It must be very frustrating for anyone faced with this problem as so many with these tumours seem to be.  

My husband chose not to be involved with the hospice until later but it was offered early on. They explained it was to support him through his treatment. He contacted them 7 months after diagnosis and had regular support from one of the team there. She then supported us all as things progressed. I understand how hard it is to be offered that support so early on. Take care