A woman moves through stages of grief to hope.

Have You Truly Grieved the Loss of Your Bladder?

Last updated: April 2022

Let's be honest right out of the gate, not a single one of us woke up one morning and said, "Gee - I think I want to have my bladder out."

But for many of us, it was the best choice to either get rid of bladder cancer or to give us a fighting chance for longer life. While we recognize the value in this decision, it can still be very hard to accept. Some deal with it better than others. 

At some time, we all need to accept that we have lost something very important to us and it has changed our lives - it is important to grieve this loss.

Struggling through the stages of grief?

I follow several Facebook pages and consistently see people who have had a cystectomy who are struggling with a stage of grief. They may not even realize it, but they are "stuck" and I hope this helps at least one person see that they can move on and live a full life being bladderless.

There are 7 stages of grief and I will address all of them.

Shock and denial

The majority of us can say that we were shocked when we were told we had bladder cancer and I was no different.

Even if it was in the back of your mind, it is still shocking to actually hear the words that you have cancer. Your first thought is that it can't be right, run more tests, get another opinion. No, not me. Deny, deny, deny.

But gradually you accept that you have cancer because that is the truth of the situation.

Pain and guilt

We felt emotional pain at hearing the diagnosis and thought - what did I do to cause this? How will my family deal with this? Maybe it was not my fault and I am just unlucky.

We quickly scan our life and try to determine a cause. Goodness, my heart hurts to think that this is me they are talking about. Did I do something to cause this that I cannot remember? How could this have happened? Can I tell anyone? I am still reeling from this and need to feel better. Where do I start? 

This stage is difficult because we try to understand why we have cancer and the guilt of "why me". In the end, we may not have ever had any of the normal risk factors and we may never know why we have cancer.

Anger and bargaining

I am so mad that I have cancer. I have accepted that I have it but I am still angry. How is this possible? I have been a good person and have done things right. I volunteer all over town, I raised my daughters by myself and to be good people. Where did I go wrong?

We all have these thoughts and then automatically try to figure out a way to change things. Maybe if I stop smoking, get a job away from chemicals, change my diet, it will magically disappear. Unfortunately, that is probably not going to happen so I need to get over my anger as it has no benefit.

Depression

I have read everything possible and I don't know if I can do this. It seems so overwhelming. We are fortunate to have so many ways to get all the information available on this disease but it can be overwhelming. 

I read up on my options and discussed this with my doctors. I see how this is affecting my family. My mind is going to the darker side and I wonder if I can get through this. I don't know of anyone else who has bladder cancer so that is probably not a good sign.

Everything I have heard about cancer is pretty ugly. Did I deserve this? I wonder... Some days are harder than others.

The upward turn

I spoke to my doctors with my family and we asked millions of questions and received lots of answers, as well as compassion. We discussed treatment options and feel confident that this was caught early and we can beat it together. Support is so important.

Reconstruction and working through it

I have made my decision and am going to forgo BCG. IP and NEO are not an option for me. I have spoken to several ladies who have had RC/IC and feel much better about the surgery. 

It is scheduled for late October. Wait - I just received a call and there was a cancellation and now surgery is scheduled for September 30.

We are all optimistic that I can get through this. It may not be easy but then nothing in life worth doing is easy.

Acceptance and hope

RC was not nearly as bad as I had conjured up in my mind. I had surgery on Tuesday and was home Sunday morning. I did not have any complications and plan to start my new job on October 27th.

My follow-up went well and my lymph nodes were clear. I feel like I have been given a second chance at life and I do not plan to mess it up. I GOT THIS!

The first day on my new job - wish it was not a Monday but I am happy that I did this because I no longer focus on cancer. Now what I have to look forward to is being cancer-free and getting on with life.

Grieving the loss of your bladder

I strongly believe that taking the time - however long that is, to grieve the loss of your bladder, accept your diagnosis and how it changed your life, is important. Also crucial, is the mental and emotional healing that accompanies cancer.

Acceptance is difficult so take the time you need to grieve. Get professional help if you need it! These are my feelings and what I went through and I hope that it can help others understand that dealing with a diagnosis like this and finally accepting it is not an overnight process - it takes time. 

Give yourself that time. As always, my best to all of you survivors out there. YOU GOT THIS!

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