Hi,
I had a rad Nephrectomy in August last year after a large tumour was removed. A clear 3 month scan in November. No spread identified and no further treatment, with 6 month scans. My nurse specialist called me approx 2 weeks After the first 3 month scan to give the news that all was good
i have just had my first 6 month scan on Friday which was slightly delayed due to coronavirus. I left the hospital at 11.30am and received a call at 1pm from the appointments admin to arrange a telephone consultation with my urology consultant on Tuesday morning. I can only assume that he has seen something on my scan. I believe it normally goes to MDT after he sees it which is why it normally takes up to 2 weeks for them to contact you. However the fact that he wants a telephone consultation so quickly makes me assume the worst. Also I have noticed a distinct change in my voice recently. There is a hoarseness which of course, I googled... never a good idea but sometimes I need to know if I should be getting things Checked out. Through the pandemic, I was watching for coughs etc and waited to see if it turned into anything and was relieved when it didn’t.
I had really hoped to get further than this before needing more treatment. I am devastated. Some of my family are saying not to worry, it may be nothing but after the shock of my diagnosis last year I feel I need to be prepared for the conversation and never be that shocked again I don’t think I could do that again. I’m sure you understand how difficult it is when others dismiss your thinking, saying it will be fine, when you know the stats, the chances etc. I am normally a fairly positive person but I also am pragmatic.
It’s been a while since I posted in here although I dip in and out to read how everyone is. It can be so comforting. You were all so brilliant when I was in the middle of the shock and turmoil of diagnosis. So I know there are treatments and drugs. But up until now I was able to continue to live normally with only the occasional thought of the future. I had planned to get married this year, to refurbish house and build an extension, and had booked three amazing trips, knowing that future travel insurance may not allow me to do so. I have had to cancel everything due to coronavirus. I could have lived with that as long as I could push it all into next year.
if I was to start on treatment such as pazopanib, are you able to work or travel? Does it restrict your life a lot? I love my job and would hate to not be able to work.
I haven’t had dark thoughts, and the nausea when I waken up, for some time. I can deal with it all and have learned how to control the thoughts and coping strategies I am just so devastated to be back here again
could anyone give me some idea about How much you are restricted by the treatment? Does it suppress immune system and will I need to shield in the pandemic?
thank you all so much in advance
H
