I didn't really know what title I should start with im in scotland and i 42 fairly fit happily married with a 3 year old. I recently had my tumor removed well 90% of it as anymore was effecting my left legs motor skills as my tumor was on the upper left side pushing on the right. It was only effecting my leg and arm.As being a left hander highlighted it more to me. I thought great 90% it's a good number and the tumor didnt look any bigger that a small plum or a shelled walnut. I got out of the hospital on a small dose of steroids and anti epileptic s feeling great.only to find a week later when going over the biopsy it was a grade 4 aggressive glioblastoma. When your told the average life expectancy of 18-24 months it does kinda floor you. And I guess it still hasn't sunk in. Keeping myself busy sorting out my financial side with life insurance and pensions ect. I think I might do more when my radio therapy starts next week for 6 weeks then chemo later on. It might do then. But looking forward to creating memories with my family seems to be my focus and drive at the moment. Gotta look forward to somthing I suppose.
Hi Sandman79
a warm welcome to the group. So sorry to hear about all you're going through. It's such a huge amount to take in and totally overwhelming.
My husband (then 51 and a total fitness freak) was diagnosed GBM4 in early Sept 2020. It was an out of the blue diagnosis following a funny turn he took while out running where he had issues with words and language. His tumour was about the size of a golfball and in Broca's area of the brain that controls speech, language and understanding. We're also in Scotland. Like you, he had surgery to debulk the tumour followed by the 6 weeks of oral chemo/radiotherapy. He coped really well with the 6 weeks of treatment. They warn you about fatigues from day one but it didn't really hit him till about week 4 and it lingered for about a month after the 6 weeks were up. He was offered further oral chemo in Jan 2021 but took the decision that he didn't want any further treatment. A decision I have to respect.
His life expectancy was slightly shorter than yours - 12-15 months. That timeframe expired at the end of Nov 2021 and he's still going strong. He's still running 6 days a week, runs about 70 miles a week. He's entered the Manchester marathon in April and is booked up to go skiing with our daughter to France in mid-March. He's also hoping to support his friend with part of an ultra marathon in June.
He just keeps looking forwards and I have to commend that positive attitude.
The initial diagnosis floored us all. He's never been one to talk about emotions and how he feels and that's not really changed. He can't understand why this situation impacts myself and our kids ( they're now 22 and 24). He sees this as "his" situation to deal with. By nature, he's a control freak so I shouldn't be surprised.
He too put "his house" in order financially including putting a POA in place. He got some sound financial advice, especially on the pension front which has freed up pennies to allow him to create new memories.
This group has been a great source of support and information to me as his wife. There's always someone around who "gets it". Friends and family are great but they don't always understand the situation.
It’s always good to talk so please remember 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 hope some of this ramble has been helpful/reassuring. It's an emotional rollercoaster ride for all involved. There's no right or wrong way to feel or to react to things . The journey he is on differs vastly from the journey I'm on and the journey our kids are on but everyone's emotions and feelings are valid here.
I hope that your treatment goes smoothly. If there's anything I can do to help, please ask.
For now, I'm sending you a virtual hug. Stay strong. Stay positive. Plan the schedule for creating those memories and have as much fun as you can. (Our latest fun event was axe hurling in Glasgow as family for my daughter's birthday- great fun and a great stress reliever!)
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
