My husband has been newly diagnosed with Grade 4 Glioblastoma. He was diagnosed on May 14 2023 and had the operation May 16 2023. Before the diagnosis people were noticing that something was wrong with him - confused, vacant. He then complained of having tooth ache so we eventually got him to an emergency dentist 9 May 2023 and he had an abscess and infection for which they gave him 2 lots of antibiotics. He did not get any better and his symptoms got worse as the week got on. He was complaining of headaches as well. We went to the doctor on the Friday and they thought it was connected to the tooth infection. The next day he collapsed, and twice on the Sunday. This was when we called they ambulance. They thought he was having a stroke because his left side was effected - hence the falling down. Took him to hospital for CT scan which was when the tumour was discovered - approx 4.5cm. He was blue lighted to London Hospital the next day and operated on the Tuesday. I spoke to him that evening and he was totally different. We went to visit him on the Wednesday and he was looking totally different. Sitting up in bed and talking and seemed Ok. He was discharged the following Monday. Today 26th June he starts his 6 weeks of radiotherapy and chemo.
He is so laid back about everything, not worrying about anything. His work have been wonderful. His colleagues have been to visit and message all the time.
Welcome to the forum and so sorry to hear the news about your husband. I care for my my wife who has a GBM and we're 12 months in. Thankfully she was able to have debulking surgery and treatment so I guess she was "lucky" but we know that it will return sooner or later.
There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this forum to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.
Have you or your husband been offered any counselling at all? Either way it’s always good to talk so please remember you can 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.
It sounds like he's coping with it all really well and it does make a difference that his work are so supportive. My wife remains positive through it all and her work have been amazing.
Don't forget to take care of yourself as well. This period with all the trips for radiotherapy can be really tiring for both of you. I roped in a number of my wife's friends to share the burden and she enjoyed going out for lunch or a drink with them after each session.
All the best and sending you a virtual hug,
Chris
Hi
I'd like to echo Chris' warm welcome to the group. Sorry to hear about your husband's diagnosis.
My husband (then 50) was diagnosed GBM in Sept 2020 and like your husband it came out of the blue, he had surgery and that was followed by 6 weeks of oral chemo/radiotherapy. He opted to decline all further offers of treatment in Jan 2021 but I do believe his fitness and positive attitude have played a large part in why he's still with us.
We're a long way down the line and now under the local palliative care team. That said, he ran 10km this morning. His tumour was in Broca's Area of the brain so the vast majority of the symptoms are cognitive/mental rather than physical. It feels more like dementia than cancer.
As Chris has said this is community is a great source of support. It's a safe 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 that virtual hug when its needed. You're not alone. We've got you.
Please make sure you take time to take care of yourself here too. Don't underestimate how this has impacted you. It's a gruelling emotional rollercoaster ride. I don't mind admitting that after 34 months of this journey I'm exhausted mentally, physically and emotionally. So please take some "me time" and got for that walk, that coffee/cocktail with friends, read that book in the garden- take time to do whatever recharges your wee batteries here. It's not selfish- it's essential.
For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong. You're coping so much better than you give yourself credit for. (You'll just need to trust me on that)
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Having something to look forward to always helps. I hope the big day goes smoothly when the time comes.
I know what you mean about not knowing what to say to people etc. Folk who haven't experienced this journey first hand really don't understand it and if we're honest, we don't want them to understand it. I've replied a few times "He is. I am. We are." that's about as accurate as i can get some days!
I've written a few community blogs for MacMIllan over the last year or so. This one might strike a chord (+) “I’m fine”: how do you really cope as a carer? - Macmillan Online Community
As for working, I've been very fortunate in that my boss has allowed me to continue to work from home fulltime but there is a lot to be said for going into the office now and again to get a breath of normality. I hope you can reach a compromise with your line manager as I've found keeping working helps to keep me focused and gives me a sense of normality. Everyone is different though and there are no hard and fast rules here. We just have to do our best.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
