Just over a year ago now, I finally spoke to my GP about the few times I had noticed blood in my urine and that became the start of a life transforming whirlwind. I quickly got booked in for all the scans and tests then I had the first of (So far) 3 bladder ops. The first to remove a big tumour was Oct 2018, followed by the hormone therapy (which was botched, I ended up on 5 months of tablets instead of 4 weeks, then the Radiotherapy on my prostate had to be halted to have another op to remove more clusters in my bladder. This was in Feb and then I underwent the 22 session Radiotherapy only to discover I needed yet another Bladder op and then was told by the surgeon that he had to remove nodules that had not shown themselves before and to expect an on-going follow-up every three months. Don't know what more to say really but this latest diagnosis has really knocked me. Before this news, I was going along thinking the next treatment would be the last. I never, ever expected to be told: "Its going to be on-going". The operations and all the procedures with it are bearable. The catheterising ISNT. The first and the last were excruciatingly painful. In fact, I had to call the district nurse because I was in agony. Blood clots had blocked it and I really don't want to go through that pain ever again and I am thinking of refusing to be cathetered. It was that bad. Anyway, that's been the main focus of my past 12 months. Hi everyone!
Welcome to the community, I am really so sorry to hear of everything you have gone through and now even more treatments ahead of you without an end in sight. It truly sounds horrendous, you have endured a lot of suffering.
Are you able to talk with your oncologist more or nursing team about how terrible the catheterising process is? Is there anything else that can be done to help that process?
I know Rob, @RobertA , and others here will understand more about the experiences you have gone through. I am sure you will be able to have ‘like-minded’ chats, knowing people actually ‘get’ what you are talking about. All of us will understand completely about the impact cancer has caused. It turns your life around, inside out, upside down. You have spent the last 12 months focusing on physically getting through operations, treatments, now to find you need more is a tough blow. It is really tough mentally and emotionally dealing with cancer, I think lots of us parked that aspect while concentrating on the physical stuff going on.
You are always welcome to come here and chat, vent, rage, whatever it is. I hope you will find help and support whenever you need it, everyone is very friendly, aiming to help each other along at whatever stage we are at.
My situation is different inasmuch as I have advanced and aggressive prostate cancer though the cancer has moved the other way and has not invaded my bladder. I have been through the radiotherapy you describe and I am on long term hormone therapy, via infusion to keep the cancer under control.
I guess from what you say, that you have/ have had bladder cancer which has spread to your prostate, or maybe it is prostate cancer which has invaded your bladder.
I get completely, the discomfort and distress which can be caused by the catheterising, especially when it gets blocked and I feel for you. Unfortunately, the point of the catheter is often to help wash the blood clots and debris from your bladder following surgery and I would in all honesty discuss the risks with the specialist before refusing the procedure.
I too, have quarterly follow ups and blood tests and in truth, I have got used to them and I know that they are helping to keep me safe. I sincerely hope that you will find going forward, that the follow up checks are just that and not an expectation that the cancer will return.
As Lou said, dealing with cancer is tough both physically and mentally and I rely a lot on the lovely people in this community where I can chat and moan with people who understand and care.
I do hope you will keep in touch and let us know how you are getting on.