I had my eleventh TURBT operation yesterday 31.01.2022, to biopsy the poppy-red-patches discovered at my last cystoscopy in December. I thought of some tips to share:

1. Be prepared to wait!

My pre-op was 7.5 hours and op 8 hours – of waiting. After arriving and doing paperwork, checking my phone, reading my book, walking to change the scene and still waiting….The only option is to get absolutely ready ( for op) and relax completely. Relax and let go of any expectation of when it will happen but trust it will.

2. Be the boss of your well-being

Ask for the things you need, you’ll recover quicker. There are two wards at my hospital, ward 1 views woodland. I always ask to be there, I don’t always get it but I always ask.

Yesterday the nurse showed me to a ward 1 room to the only bed away from the window. The nook spot at the window was free and I asked if I couldn’t have that. It wasn’t cleaned and made up but I asked if we could swap beds. She tested me for Corona and when she returned I politely asked again and said I’d help move the beds. She reluctantly agreed and I got my favourite spot.

3. Be grateful

It’s not easy when faced with an imminent operation. I remind myself the operation is positive, this makes me grateful for the procedure and less fearful. It also makes me super appreciative of all the staff involved at each stage. They do such a great job and they are always thankful for a hello, smile and friendly comment.

4. Be relaxed

Relax as much as possible and stay present. Box breathing dispels the ˋfight or flight´ stress response and triggers the ˋrest and digest´ response. Access it in 90 seconds flat:

*Inhale for a count of 3 or 4

*Hold your breath for the same count

*Exhale for the same count

*Hold for the same count

*Repeat until a calm wave washes over you

I remember vividly my first TURBT. I was anxious and stressed about being in hospital and having bladder cancer and having an operation. I didn’t help myself as much as I could have. And I woke up in the recovery room talking and worrying about my work inbox.

It struck me yesterday as I woke up with a smile on my face and in my heart. I’m grateful I’ve learned to create my own lifejacket to support me on this uncertain bladder cancer journey.

What helps you on your journey?