Hi , I was diagnosed with an inoperable grade 2 Astrocytoma 4 years ago at the age of 48 and have remained stable following radiotherapy and chemotherapy.
I now have scans every 6 months …. Awkwardly in June (my birthday) and December. Every time I am convinced the news will be bad and am so relieved when I am told that the tumour has not grown.
When I was diagnosed however most information pointed to a prognosis of a 5 year survival. I’m really starting to struggle with the possibility that my life may be coming to an end. 4 years have flown by.
Other than weight gain and fatigue I have remained pretty strong and sociable, but I can’t help but feel that all of those people that dashed to be by my side have drifted away as the initial ‘drama’ faded. I retired from my job as an Audiologist when my initial diagnosis led me to believe time was very short.
I live with my husband in Norwich and have close family all around, and some good friends but I am filled with a feeling of purposeless and anxiety. My children are 21 and 23 and moving on for work and travel and I spend alot of time alone….overthinking.
I wonder if I am alone in feeling this way ?
Hi Golly
a warm welcome to you. No, you are not alone in feeling this way. I think those thoughts are only natural.
My own experience is from the opposite side of the coin. I am supporting my husband through his stage 4 brain tumour journey. He was diagnosed in Sept 2020 and given a prognosis of 12-15 months. Initially the neurosurgeon had said 16-24 months prior to surgery. My husband is still going strong.
Something I've come to realise over the months as a member of this group and others within the online community is that nothing is set in stone. Everyone is unique. Every tumour impacts each person differently and those scary timescales are guidelines (best guesses based on averages and statistics).
I'll not lie- we're approaching that 24 month marker and that scares me... but its 9 months beyond where we thought we'd get to. Do the maths- that's quite a big % difference.
Long may your scans continue to show that things are stable. Carpe diem!
This group is a safe supportive space so please reach out here anytime. There's always someone around to listen who gets it. Friends and family are great but as you say they do have a tendency to "fade away" as time passes. That's not the case with this community. We're here for you and each other.
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 I'm sending you a huge virtual hug, love and light. Stay strong. Stay positive
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
