I don't know if anyone will even read this but I think it helps to spell it out. I have just spent 7 months on huge doses of steroids and a gazillion other drugs to counter the side effects after I was diagnosed with Nephrotic Syndrome in May 2022. Essentially my immune system got confused and attacked and almost destroyed both of my kidneys in a matter of weeks. At times the pain in my kidneys and ribs was horrendous. My nephrologist kept telling me I was 'atypical', that I shouldn't be in that amount of pain. He told me to go any buy Voltoral gel in the chemist! I was self medicating with paracetamol which didn't even scratch the surface. I tried everything from reflexology, a chiropractor, sports massage. Some days the pain was so bad I couldn't raise my arm, couldn't drive or even get into a car for weeks, I couldn't lie flat so I slept upright on the sofa for a few hours every night, my husband had to wash my hair, And nobody seemed to believe me. I saw my Nephrologist weekly during that whole time and his response was always 'yes, but you have no protein in your kidneys'. I couldn't have cared less about protein in my kidneys! So eventually in November, while he was on holidays, a junior, trainee consultant did a full examination and recommended a scan. I got it days later.
On the 7th of November, my Nephrologist told me I had a 9cm mass on my kidney and the cancer had spread to my lung and 2 ribs. My first response through tears was 'I feel vindicated'. He finally believed I was in pain and immediately ordered the short and long tec morphine. But worse was to be revealed. When he saw the size of the tumour, he requested copies of any scans and results I may have had in the past. I had one in 2016 when I was admitted to hospital diagnosed with unexplained anaemia and in 2018 when I was getting my gall bladder out. He explained that he was not trained to read scans for cancer but immediately picked up on the small mass on my kidney on both earlier scans. He was horrified to read that both had been reported as 'unremarkable'. The 2016 scan showed a 3cm mass which could have been treated and I wouldn't be in the horror I am today. My Nephrologist told me I was 'facing a massive fight and that the days ahead would be extremely difficult'.
So he red-flagged me to a Consultant Urologist who I met on the 14th of December. Mr X was the coldest, unempathetic man I have ever met. I sat down with my husband, a nurse sat at the far end of the notes taking notes or something. He asked me did I know why I was here, I said 'My Nephrologist made the appoint after a scan showed I had a tumour on my kidney which ad metastasised (had to look that word up and when I did, I knew it was bad) into my lung and two ribs'. He said 'Ahh yes, did he also tell you it was incurable, terminal?'. At that minute my world fell apart, I couldn't speak, my husband and I were both in tears. He said there would be a team meeting on the 22nd of December to discuss a way forward and that I need a chest biopsy to determine what, if any suitable chemo was available. I asked him how long I had and he replied 'between a few months and two years'. I don't remember anything else about the meeting. My husband asked him who did this to me and he raised his hands, said it was nothing to do with him and that we'd have to take it up with the hospital's radiography department. I simply couldn't think or article any questions so the whole thing was over in less than 5 minutes.
The nurse handed us a pack with a pile of leaflets and said she would be my key worker and away we went, both of us in shock and tears. Halfway up the corridor, I turned to my husband and asked him when do we come back, he whispered 'I don't know'. Same response when I asked him when I get a biopsy. We drove and cried for the next 7 hours.
Next day I had to tell my family, all I can say about that is that it was the hardest thing I have ever had to do. We are all still raw from my Dad's death at 62 after an 8 year battle with non-hodkins lymphoma.
I'll tell you the next part of my saga later, this has totally exhausted me. If anyone reads this, thank you xxx
