My partner has just been diagnosed with Glioblastoma. This came as a huge shock to both of us. He had a bad head for approx. 2 weeks and was very tired. I asked him several times to go to the doctors but he's very stubborn. He didn't get any better so I contacted the doctors. We were sent straight to the hospital, where we were told he had a brain tumour and it was large and aggressive. He had surgery and all went well, until yesterday when we went for the results and we were told he had Stage 4 Astrocytoma. I am absolutely devastated and heartbroken, I don't know how i will live without him. He is my everything and I'm so scared of losing him. Its so hard trying to process everything x
HI Apr08
a warm welcome to the group. So sorry to hear about your husband's diagnosis. Life's too cruel for words sometimes.
I can empathise with how scared you feel just now. I've been there. I supported my late husband throughout the three years of his Glioblastoma journey. He was 50 when he was diagnosed out of the blue with a brain tumour in Sept 2020.
For now, take things one step at a time. You're over two of the hurdles - surgery and the confirmation of the diagnosis. It takes time to recover from those so please be gentle with yourselves. Have the medical team mentioned treatment or what the plan is from here?
In G's case, he had surgery to debulk the tumour then about a month later went through 6 weeks of oral chemo and radiotherapy in combination. He coped really well with both and his only real symptom was fatigue which kicked in about week 4 and lasted for a month after treatment ended. After that he decided he didn't want any further treatment. He was offered a further 6 months of oral chemo (double the dose of the same drug but 5 days on and 23 days off) Those seem to be the standard protocols.
For where you are now though, please take time to process all of this. Avoid Dr Google as he's scary. Focus on the facts as you have been told them. Everyone is unique here and these tumours impact everyone slightly differently. In G's case , the symptoms were cognitive, more like dementia. He remained physically incredibly fit until the week or two. He was a marathon runner and was able to run right up until Aug 2023. He passed away in late Oct 2023.
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. You might want to take a look at a couple of the other groups on here- Glioblastoma multiforme brain tumour forum | Macmillan Online Community and Cancer carers forum | Macmillan Online Community. I personally drew a lot of support from all three groups.
I've also written a couple of community blogs that might resonate with you-
Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community
“I’m fine”: how do you really cope as a carer? - Macmillan Online Community
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.
I appreciate I've just thrown a lot of information at you.
For now though, I'm sending you both a huge virtual hug and lots of positive energy. You are coping so much better here 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
