Diagnosed and terrified

Hello Ele and welcome to the group. It is understandable the way you feel. It is the fear of the unknown. I have no experience of this but we do have ladies in the group who have had this operation successfully and should be along to offer some support and advice when they catch up with your post. Best wishes. 

Thank you.It means a lot.

Dear Ele,

It may sound terrifying and not worth trying now but let me see if I can explain why you may want to think again.

Yes the idea of cancer is frightening and yes the thought of having such a big operation plus chemotherapy is daunting but, that's how your doctors are going to give you your life back. And I can tell you there is nothing sweeter than facing your fears and proving there is a good quality of life after treatment.

And I can also tell you that doing nothing about your illness would be unpleasant to say the least. I know that as my mother died 50 years ago of bladder cancer that she'd ignored until too late. She would have loved to have the treatment I have had. In my view it was less brave to have the treatment. And there are many men and women who would agree, I'm sure.

I am female, aged 69 on diagnosis, and 73 now, enjoying life without my bladder, with a stoma and bag, fit and healthy. I had hoped to have my ovaries and uterus removed too but the latter were left as I was quite ill just before my operation so they didn't prolong it. I may be wrong but, as so many women have. hysterectomies etc these days, am wondering if it's the bladder side that particularly frightens you - that is how I felt before the operation.

After the diagnosis I decided that I would cope - because I didn't want to face what Mum had and was very fit (and hadn't smoked since she died so the diagnosis was a horrible shock to my husband and daughter as well as me). 

So I told myself I would be optimistic for them and have been ever since. It has not been difficult. Chemo isn't pleasant but as It was necessary I tried to get on with it. Keeping fit enough to have the operation was harder but ok. And the operation was the start of returning to normal life. I was much better within weeks.

Managing the stoma is like changing a nappy, essentially. There are stoma nurses to support you at home as well. And there is also a chance to have a neobladder which does not need bags. I chose the older technology because I felt (correctly) that I could manage it better.

I have given you details since generally it is fear of the unknown that terrifies one. There are lots of us on here who have got through it successfully, many of whom  have had the same operation as you are having. They can tell you about how they coped. And don't hesitate to ask questions, someone will know the answer.

(If you click on our names you can see what we have had done if we have given a bio).

All the best

Latestart

Hi Ele welcome to the group. Sorry about your diagnosis but if it makes you feel better we have all been exactly where you are now and felt all those feelings and thoughts. 
I’ve had a radical cystectomy where they remove all the things you’ve listed above and I have a neobladder rather than a bag. I’m 59 and I had my op 3 years ago. If there’s anything you need to know please feel free to ask. 
There are other ladies on here that have had the same operation and have either a neobladder or a bag. 
I too found this group extremely helpful and turned to when you feel like nobody else really knows how and what your going through.

kind regards 

Peppa. 

Dear Ele, it is only natural to be apprehensive about this op. We all fear the unknown and don’t know how we will cope. Most people having this op find that it isn’t as bad as they fear. Is there a particular aspect of it that bothers you?

 I had my op 14 years ago age 57. Yes, it was tough at the time, but looking back it seems a short episode in my life. Doing nothing could actually be even harder. Very best wishes.

Hi Ele, many of us have had a radical cystectomy on here, and are living good lives afterwards. Have you read Tracey Emins posts. She is not typical of most people’s experience, but how she is living her life is an inspiration. All the best Leo

Thank you so much for your kind words and making more sense of things for me.I appreciate it.

Thank you. I had never even considered a neobladder. I tend to switch off in the hospital and not take in what they are saying.

Thank you for your kind response.It really does help hearing how other people have beat this.

Thank you for taking the time to reply.I will read the posts.