Life After Bladder Cancer: Grieving My Old Self

I was diagnosed with stage 4, muscle-invasive bladder cancer in the fall of 2017. In November 2017, I underwent a total pelvic exenteration (TPE) with an aim to cure the bladder cancer which had spread throughout my pelvic area.

TPE surgery is very invasive, carries a high risk, and the chance of post-surgical complications is high. It can only be done in a small number of cases and only if it has not spread out too much in the pelvic area.

The key and quite unique advantageous of the surgery is that it's done with the aim of not just treating but curing the cancer. This is high-risk surgery - make no mistake. Like putting all your money on a single number at the roulette table if you like, with a chance of a high reward.

However, something that is not talked about as much as I think it should be is what comes after bladder cancer?

Back to pre-cancer life?

So, you go through a treatment plan for bladder cancer. It may last weeks or months or longer. You may have 3 monthly follow-up scopes or annual scans. You may need follow-up treatment. At some point, if you are fortunate, your cancer may be cured or be in remission.

So, what comes next?

Do you flick a switch, and you are back in your pre-cancer life? For certain, you are not but how do you deal with that?

Everyone's experience is unique and, in my opinion, shaped by who you are, what you have experienced, and how you see your life now.

What's important in life

Many experience survivor's guilt. This is where they feel guilty for being here when a fellow patient they got to know didn't make it. Some feel they are a new and better person, appreciating what is important in life.

Almost everyone feels "what if comes back?"

Life after bladder cancer continues

For me, life after bladder cancer is ever-evolving. I got the pathology results 29 days after surgery. There were clear margins and to both mine and my consultant's [doctor's] disbelief, there was no sign of cancer in any of the 40 lymph nodes removed. I was beyond relieved, excited, and felt like the luckiest person in the world.

As my journey progressed in the initial months after surgery, I went through every emotion possible. I had plenty of "why me?" moments.

After all, when I was diagnosed, all I read was that the average bladder cancer patient in the UK is a 73-year-old male. I was a 40-year-old female at the time of diagnosis and I felt hard done by.

I then went on to realize my journey all happened so quickly - just over 2 months from diagnosis, through various investigations and scans, to surgery.

I realized I hadn't had a chance to process many emotions at all, or in fact even process what I had been through.

Grieving my old self after bladder cancer

What followed were many moments where I just broke down and cried and cried. It was a release of emotion. I grieved for the pre-cancer me, the pre-surgery me, and the pre-ostomy bags me.

I was initially on 3 monthly scans due to the severity of the cancer. Each one brought the fear of its return, followed by relief and joy when the scan was clear. It takes its toll...

Did you spend time grieving your old self after bladder cancer? Tell us about your experience in the comments below, or share your story with the community.