Fear fear and more fear

My pain after my particular surgery was very well managed, and was never awful by any means. I was always offered pain relief, but often didn’t need it from a few days after surgery, I had zero pain when I woke up, and afterwards it was more discomfort than actual pain, I was sleeping a lot after my surgery and then the main pain relief offered was paracetamol, with oramorph if required. 

I have to say that I didn’t focus on the negative, so didn’t focus on the surgery itself but rather the end result of getting rid of my cancer. I’m sorry you feel you can only focus on the negative, as I found it helped greatly not to have that mindset. I woke up and felt my tummy for bags, and smiled when I felt them. I knew then that all the surgery had at least been completed. My two stomas represented a new life without cancer. It’s natural to be very scared, but I trusted my team with my life and they saved it. 

Sarah xx

Hi Rachel,They will make sure you have plenty of pain relief.It’s good that you have things to do while you recover.I did sewing,art and family history.Family history is absorbing and you can do that lying down if you have a laptop or tablet.They wouldn’t put you through the surgery if they were not hopeful of a cure.Love Jane xx

I think my urologist had a very good bedside manner & maybe we got off on the wrong foot? I know they have to give worse case scenarios, they wouldn't be doing their job right if not. 

But looking at it from a sensible mindset, they would not be putting me through this if there was no chance of survival, there would be no point right? Unfortunately, we don't always see the positives in these situations do we? Thank god for you guys on this forum, I don't know what I'd do without you all & I thank you x

My surgery was much bigger than just the bladder removal and there are only limited circumstances where it can be performed at all. They will only do it if there is a very good chance of success. Even though my odds were a little lower than the standard chance of success, they still went ahead, and I had a good outcome. I was 57 when I had my surgery and not in great physical health as I’d had a failed surgery just 9 weeks prior which I was still recovering from, and was in a lot of pain from my cancer. 

In advance of the surgery I talked to others who had been through a total pelvic exenteration and also met up with a couple of ladies in real life. I was encouraged so much by the fact that they were living good lives. I have seen people refuse my surgery through fear, and didn’t want to be one of those, so although I was scared, my desire to live outweighed that. 

I think all you can do is take one day at a time, and try to focus on the end result. 

Sarah xx

Yes, I had RC 10 years ago, but at only TaG3 so had a choice of BCG or surgery. A bit like Sarah, I looked on it a a new project, prepared food in advance, planned post op clothes, entertainment etc. Did take me back a bit when surgeon came to see me in recovery & said no sign of spread - reminded me why I was there. It was a bit grim at times, but really looking back, it seems just a brief episode in my life. I have never regretted my choice. 

Easy to say, but worrying won't make any difference to the outcome, so try to 'go with the flow'. Understandable that both you & loved ones are anxious. Best to be honest, admit the fear & worry, but try not to let it escalate. Best wishes.

That’s good advice Teasswill. I’ve never once regretted my surgery either.

Sarah xx

I don’t regret mine either.I was close to being inoperable.I’m so grateful to my surgeon.Jane xx

Same situation for me Jane. I was terrified I would run out of time while my 3 surgeons juggled their diaries. My gynae surgeon wanted specific urological and colorectal guys with her, and didn’t want to use anyone else. My cancer was spreading so fast after my previous failed surgery I thought it was going to be too late for me. So glad it wasn’t! And so thankful it was done in time. 

Sarah xx

It’s incredible what you went through Sarah.I remember the surgeon telling my sister and I that it was serious and that he would put me on the urgent list.Less than a month later I had operation.I’ve been so lucky but I trusted my surgeon.He said he would do his best for me and he certainly did that.Jane xx

I had total trust in my gynae surgeon Jane-she said these guys were the best and I believed her. I wasn’t so keen on their bedside manner and some of their communication, but they were top in their fields and I needed their skill and expertise to do what was required. In some ways it seems like such a long time ago now, and often thinking about it I’m amazed at what they achieved together! 

Sarah xx