This is Lisa and my husband is Dave. Last October he started having bad headaches which he put down to a VP shunt in his head. He suffers from epilepsy and has done since he was 17. He had all MRI and CTS and was told in February it was a glioblastoma tumor. They operated in march and got 95% out. He's going on 17th April to find out about starting chemo/radiotherapy. It has torn me apart as it's such a shock and he's only 59. He's been given 12-18 months average to survive. I still can't believe it as it came out of the blue. I've been off sick since Jan as I've had an operation on shoulder and arm so trying to return to work on 20th for 2 days a week which will be a welcome distraction from it all. How do people go on day by day
HI Pongo22
a warm welcome to the group. So sorry to hear about your husband's diagnosis. Life is too cruel for words at times.
I can empathise with the journey you are on. I supported my late husband through the three years of his journey. (You can read the gist of that tale in my bio) He was 50 when he was first diagnosed and after surgery was given 12-15 months. He coped really well with the chemo/radiotherapy treatment. He had 6 weeks of treatment and for the first week was told by the CNS to take the strong anti-sickness pills that she prescribed to help his body adjust even if he didn't feel sick. That seemed to help. The only other symptom he had was fatigue which kicked in around week 4 and lasted for a month after the treatment finished. His main complaint was that the radiotherapy mask squashed his nose!
This is a safe and supportive space so please reach out here anytime. I personally drew a lot of support from this community during G's journey. 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.
I've also written a few community blogs for MacMillan over the years that may help you. Here's the links
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
A GBM journey is an emotional rollercoaster ride for all involved so please take care of your wee self here too. I worked throughout G's journey, right up until the last week, and that did help provide a sense of normality but I was lucky to be able to work from home so perhaps going back to work for a couple of days a week will help you. It takes time to come to terms with all of this so don't be too hard on yourself if you have a bad day. They're allowed.
if there is anything I can help de-mystify for you, please ask. I'll be open and honest based on my experiences of supporting G.
I will say one wee thing about timescales that I've said many times on here. The are based on published averages and best guesstimates. No one average. Everyone is unique and this journey will last as long as it does. As I mentioned G was initially told 12-15 months in Sept 2020. He was stubborn beyond belief and stretched that out to 38months and a day.
For now though I'm sending you a huge virtual hug and lots of strength. You are coping so much better than you give yourself credit for here (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
