Chromophobe RCC primary plus stage 4 Glioblastoma primary

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 the left side of my brain (anterior parietal lobe). 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. Hopefully they can start immunotherapy on the chromophobe as soon as possible once the treatment on the brain concludes.