Hi, newbie, I'm 46, female and just got diagnosed with Renal cell cancer which has spread to the lung and two ribs. I'm angry, devastated, sad, afraid and feeling alone in all this. I spent 7 months being treated for Nephrotic Syndrome and had horrendous pain at times. I was told I was 'atypical' and should not have that pain. So self-medicated with paracetamol and essentially got on it with. Couldn't lie flat, so haven't slept in my own bed since May 2022, couldn't change gears or break so couldn't drive, couldn't raise my arm, but hey I was supposed to be grateful I had no protein in my kidney. Eventually I convinced them to get me a scan. Which low and behold, showed a 9cm tumour spread to my lung and ribs. I told them I felt vindicated!
My Nephrologist requested copies of any previous scans I had and what do you know, my tumour is glaring out on a scan I had in 2016 for unexplained anaemia and in 2018 before I got my gall bladder out. To be fair, although he never apologised for not believing I was in pain, he immediately ordered two types of morphine and instigated a complaint on my behalf.
Now its incurable and the urologist I saw for all of 5 minutes who broke the news tells me I have between a few months and up to two years to live. I saw him on the 14th of December and haven't heard from him or anyone else except Macmillan since. I did have the chest biopsy last week to determine what, if any treatment would help me but I'm still waiting.
I have a now of anger in my stomach, I can't eat and spent Christmas and New Year in hospital with hyponatremia. I believe they killed me twice already and the waiting feels like a third time. The urologist told me without treatment I wouldn't see Easter, he's known since the 30th of November the full diagnosis and here I am, still no treatment or follow up. I wake up everyday wondering hope much less time I have left since yesterday.
Is there any hope, my Urologist told me the numbers for more than 2 years are so small they are negligible?
Clinical trials? Black magic (lol), I'll try anything as long as its not in the hospital that killed me (I've been told I need to go to the Regional Cancer Centre in Belfast so that's one battle I didn't have to fight)
Welcome any thoughts, comments, positivity etc
