In late September I noticed blood in my urine. I already had an appointment with the GP surgery to go over the results from my annual blood test (I'm on blood pressure meds) so told the nurse about it. After a month of more blood tests plus urine tests I experienced a more substantial showing of blood so contacted a doctor at the surgery. She put me on the cancer pathway.
I had an ultrasound and cystoscopy. The cystoscopy showed that my bladder was fine so the next step was a CT scan. This was in mid December. On the 9th of January I saw a doctor at the hospital who informed me of my kidney cancer. The tumor was large. The decision of the MDT was for surgery to remove the kidney. I was told that the operation would take place within three months.
A few weeks later I had a telephone consultation with the consultant who had decided that, because of the size of the tumor and it's proximity to other organs surgery could be dangerous. He suggested immunotherapy to shrink the tumor possibly followed by surgery. Firstly though he arranged for a further CT scan and a biopsy. Following this I saw the oncologist who explained everything to me and arranged for my treatment to start on the 7th of April.
At the hospital on the 7th they took my blood pressure and found that it was high. They checked it again later and it was still high. The doctor said it was too high to risk starting the treatment. I went to the GP surgery and arranged an appointment for the next day to sort out my medication. I now have to take BP readings for the next week then see a doctor at which point I hope to have an amended prescription. This has put back my treatment by at least another fortnight.
I just feel as though everything has taken far too long and that in the meantime the cancer could be rampaging through me.
I cannot fault anybody that I have been in contact with as they have all been great but I feel let down by the whole system.
Sorry to go on so much. I have actually tried to keep this as short as possible.
Hi Librarian and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated Kidney Cancer Support Group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….
……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
