Self-Advocacy After a Bladder Cancer Diagnosis

I was diagnosed with late-stage aggressive bladder cancer in September 2017. The months that followed were a whirlwind in many respects.

On one hand, there was always that next consultation the next test or the next scan which kept pushing things ahead. On the other hand, there were times when things seemed to move so slowly, or the next interim step was not clear.

Of course, anyone having been diagnosed with cancer will feel any progress is too slow. For me it felt very much like a race against time and in all honesty, in my case, due to the aggressive nature - it really was.

The comfort of knowing what's going on

There may be gaps between tests, investigations, or for a MDT (multidisciplinary team) meeting to take place. MDT meetings are where a group of medical professionals from multiple specialist teams discuss your case and collectively agree on the next steps.

However, you shouldn't feel in the dark. There shouldn't be a gap in communication. This is a difficult time for you and for those around us. You should at least have the comfort of knowing exactly what is going on.

While I have nothing but praise for the overall care I received, I realized early on that I need to self-advocate. There were two main reasons for this.

Losing control

Firstly, the fact that I am someone who in and out of work likes to be in control of a situation. At that moment in time, I felt completely out of control, that was very difficult. Secondly and far more importantly, I did have gaps in information. I did have periods where the next step wasn't clear. There were times when I was waiting for time-sensitive decisions to be made but there were unexplained delays.

So, what is an advocate I perhaps hear you ask?

What is self-advocacy?

Well, here is one official definition, a person who puts a case on someone else's behalf. Care managers can become advocates for their clients.

Of course, an advocate is traditionally someone else acting on your behalf, and for many, that is the preferred option. Many patients understandably have enough to cope with coming to terms with the diagnosis.

For others like myself, it was important to self-advocate with the support of others as that gave me some control of the situation which I desperately needed.

So, what did I do exactly? Well, here are my top tips for self-advocacy or advocating for someone else.

Write down everything in an organized manner to reference later as needed

I had a double page for every day.

On the left-hand side of the page, I noted any planned appointments for that day so they could be populated ahead of time. On the right-hand side, on each day itself, recorded any updates received which I could then review or process at a later date.

This also helped give me an easy reference point to pick the key updates to share with my friends and family.

Additionally, have a notebook beside your bed. There will be middle-of-the-night thoughts and by writing them down you won't forget them. This should help to clear from your mind, hopefully allowing you to get some more sleep.

Take notes or ideally have someone attend appointments with you to take notes. A lot will be discussed. The terminology may not be familiar to you. If it is in writing, you have time to digest the information after your appointment.

Keep your own questions and answers list

Log all questions you have as you think of them. That way you won't forget them. Review the questions and decide who the best person is to answer them.

Don't worry if you don't know who it should be. Ask any member of the medical team and if they can't answer they should know who can. Keep a note of the answers as a record point.

No question is a silly one, ask anything on your mind. Uncertainty is a key driver for anxiety, so the more you ask and understand, the better.

Ask for things to be repeated or explained in a different way if unclear; a lot being discussed will be new to you.

When discussing treatment options, make sure you understand the options available. Ask questions to determine the benefits and risks of any chosen treatment.

Self-advocacy after a bladder cancer diagnosis

If you are not happy with any proposed treatment options, ask about the alternatives. In my opinion, the best option is to treat your cancer, but taking a step back is always an option available to you. It's your body and ultimately you need to decide the route you wish to take.

Good luck to anyone going through the early stages post-diagnosis. Remember advocating for yourself or having someone do this for you, gives you the reassurance that in all aspects your best interests are front and center, always.

What did self-advocacy look like for you after your bladder cancer diagnosis? Tell us about your experience in the comments below, or share your story with the community.