Hi, new to all this, husband diagnosed just before Xmas and waiting for kidney removal....seems to be taking forever to get a date :/ Feels like I'm staring into a black hole....
I was initially referred early September and after laparoscopy, scans and suchlike they had their MDT meeting end of October and I had the op at the end of November. There is supposed to be a maximum time limit of 28 days from referral to diagnosis and 62 days from referral to start of treatment I think. So do chase it up.. and insist on an answer. I found that polite but firm persistence over many things along the way was needed. The NHS is hugely overstretched and communication can sometimes be very poor and things get lost and overlooked. I kept a diary of such things along the way and sent it to my consultant .. nor as a complaint, just for interest in the patient experience before we get to the surgeon's capable hands. He said it was genuinely interesting for him to read. I am now keeping the post-op diary and that will be on its way to him in a while! You should have been referred to the cancer care nurses attached to the urology team when you saw the consultant, and given a phone number to call. So do ring them and also your GP. Do come back in here with any queries as it is a really useful forum. Good luck.!
Welcome to the group. I agree with Tilly, phone ur teams nurse or doctors secretary. The admin system is not at its best. However, I too am on this journey. My kidney was removed last February and all went well. Any questions just ask...hugest hugs for u and your husband....stop staring into that black hole...we are very friendly in this group and hope we can bring some light to you...
