Hi everyone. Just to introduce myself and my situation. I have just turned 55 this March. I collapsed/had a possible seizure late on Xmas eve and I was taken to A&E where an emergency CT scan on Xmas Day revealed I had a 40mm lesion in my left side brain. I had an MRI on the 27/12 which also revealed that I had a large 19cm lesion on my right kidney and lesions in my spine. The doctors informed me that it was most likely kidney cancer that had metastasized to my brain. However biopsies of the kidney and the brain (debulking surgery 24/1/25 90% NTR) found that they were in fact two different primaries unrelated to each other. The only complication from the surgery was right leg weakness and a loss of motor control in the leg which has led to a couple of falls. I can still walk OK but have to very careful walking on uneven ground and climbing gates/stiles etc. The lesion in the spine was just an hemangioma, the kidney cancer was chromophobe which due to its size was estimated to be up to 10 years old (still zero side effects from the kidney) and it cannot be treated while the brain cancer is being treated. I was given a median prognosis for the grade 4 GBM of 12 to 18mths. I completed the standard 6 weeks radio/temozolomide in middle April and was lucky in that I had little to no side effects. I have just started this week the 5 day double doze of temozolmide (last day today and touch wood still no side effects).
I seem to have been coping quite well mentally with the diagnosis but my wife C has been struggling a bit. She has Parkinson's and the stress seems to have made her symptoms much worse. Also our 20 year old son was diagnosed with a low grade glioma on the 23/12/23 (the last two Christmas's have been ruined with bloody gliomas). TBH I am more concerned with my sons situation than my own but my wife has two people to worry about and I really feel for her. Nobody said life is fair but sometimes you just wish the bad luck could be spread a little thinner. Fingers crossed I get a couple of years but whatever I get I will be grateful for. The oncologist has passed me fit to fly to France in June which was great news and surprisingly I am covered by my work travel insurance policy which I am sure as saved us a bob or two. Onwards and upwards!
HI GAC_1970
a warm welcome to the group. Thank you for sharing your story with us. There's a lot going on there for you all to cope with as individuals and as a family.
I supported my late husband through the three plus years of his GBM journey so I can empathise with you all, especially your wife. (you can read the gist of our tale in my bio)
It touched my heart that you are concerned about how well your wife is coping. As a wife at the time in the same situation, I reached out to MacMillan in Oct 2020. I wasn't sure what support or help I needed. I felt I just needed someone to hold my hand through whatever the journey that lay ahead of us was going to bring and that's what this community did for me. One group within the community that I personally drew a lot of support from was Cancer carers forum | Macmillan Online Community I'd like to hope that it could offer similar support for your wife.
This is a safe and supportive space for all of you and you're all more than welcome to reach out here anytime.There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We're here for you all.
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.
That's great that you've been give the ok to travel and you're right, your work travel insurance will have saved you a fair bit. G travelled to France twice in 2022 - once to go skiing with our daughter and then in the spring to spend a few days with me in Paris. Travel insurance was circa £300 for each trip. Have a fabulous time when it comes around.
For now though I'm sending you all a huge hug and lots of positive energy
Love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
