Hi, I was suffering from all kinds of symptoms in July 2021, tiredness, lower left side back pain, incredible headaches, just a long list. I had a CT scan that revealed Kidney cancer in August of 2021. I then had a bad attack of Giant Cell Arteritis. This happened completely out of the blue. As a result, I have lost significant sight loss, mainly in my right eye. This set off Lymphodema which because I was taking steroids made me gain so much weight and almost unbearable pain in my legs. I was eventually put on the waiting list in February 2022. My daily life is full of constant pain from three separate conditions. I just want someone to start something, I have little or no contact with the hospital unless I ring them. But no sign of a date for surgery although I was told verbally by the consultant that in May 2022 I would hear something, well that deadline has obviously passed. I feel abandoned by the system. I am broken.
Has anyone had to put up with anything like this? I contacted PALS at the hospital after a nurse verbally abused me over the phone when I asked for any updates. apparently 'I'm nothing special and have to wait my turn I'm not expecting special treatment, I just want someone to talk with me to explain what is going on!
Hello,
I won’t have time to write much as I am working, but just wanted to say how sorry I am to hear about your predicament. One condition is bad enough to be managing and so to have three must be dreadful.
sadly, a number of us have experienced similar things to you, as in ….non communication and long waiting list times, which exacerbates our concerns. I can’t believe that the PALS lady was rude to you. I would say that it’s perfectly reasonable to ask when you should have heard.
I paid for my nephrectomy to have it done privately, but I was fortunate to have the means to do so.
If you need to talk then Macmillan can be a fantastic support. If all else fails, then why not contact the Chief Executive from the trust.
Dont give up trying to fight for an appointment.
Take care and sending you one of my legendary big hugs 
