Tips to Prepare for a Cystectomy
Last updated: September 2021
I had a radical cystectomy earlier this year. This involved the removal of my bladder, cervix, appendix, anterior vaginal wall and a number of lymph nodes. I had an ileal conduit made from a length of intestine. Which gave birth to my new, life saving stoma.
Waking up in the Intensive Care Unit
After surgery I awoke in the ICU. I had been told prior to my surgery that this was part of the "normal procedure" and to expect to be there for 1/2 days. It was a dimly lit room, with floor to ceiling glass door and windows, looking out onto a bright but bare corridor.
I was suddenly aware that there were people in the room with me. Flicking switches and looking at monitors.
I seemed to have tubes everywhere. Up my nose, in my neck, in my hand, in my stomach. I had a blood pressure cuff attached to my arm, along with a couple of drips. I had a bag attached to the right hand side of my abdomen and a large wound that went from above my belly button, down to the pubic bone area. I had never had so many "things" attached to me.
I could hear bleeping, then alarms, then voices.
"Hello Shirley, how are you?", "Do you think you could sit up for us?"
In a blurred, semi conscious state I attempted to sit up. That's when it hit me, the excruciating pain in my stomach. "Wait, wait, we need to help you". The two nurses set about helping me to sit up.
I was then given a wash and helped to put on a change of clothes. That felt better! But boy was I exhausted.
The nurse went on to explain that I had been given pain relief in a drip, for which I had control over. She stuffed a button into my hand and told me to "press" whenever I felt I needed some pain relief. It was morphine and it made me feel sick, violently sick!
I had told the Drs and nurses prior to surgery that I didn't want morphine as I had had a bad reaction to it many years previously when I underwent a hysterectomy. Too late, it was all set up, so I was given medication, pills, to combat the nausea. They did work, but I felt unhappy that I hadn't been listened too.
I was very tired but unable to sleep due to the constant in and out of staff and noise from all the various monitors.
Getting out of bed for the first time
I felt like I hadn't been in my bed long, when in fact it had been a good few hours. A nurse leant over me and asked if I felt I could get up out of bed. I knew that the aim was to get you moving around as soon as possible but I was astounded it was so soon, still day one! I asked if I would be ok to get up and I was assured that I was. So with all the power I could muster within me I slowly sat up, turned around on the bed and slid out... The nurses were on hand in case I needed help. But I was determined, very determined to do everything that was asked of me. After all, the staff were there to help me recover, so I HAD to trust them.
I stood up, only for a few seconds, then back into bed.
Taking control of my recovery
As I had done everything that had been asked of me, and my blood pressure, temperature, heart rate etc. were all good and within the normal range, it was decided that I was ready to be transferred onto a "general" Ward. Less than one day in ICU... I felt like this was a "little victory". I liked that feeling and it was then and there it hit me. I am gonna get better as soon as I can. I am going to do everything that is asked of me. Irrespective of whether it was painful or not. I had decided I COULD and MUST, trust the staff who were caring for me.
I began setting myself little goals, asking what every tube and monitor was for and WHAT COULD I DO, to speed up the process of getting rid of them. I took an active role in everything that was happening to me. Asking lots of questions and not allowing them to leave until I was satisfied with their answers.
I had a notebook and would write questions down as they occurred to me. Then the next time a Dr. or nurse came in I would "fire" away!
This allowed me for the first time to feel somewhat in control of my body.
I had learnt that I personally needed to know EVERYTHING. In getting the answers I didn't feel as afraid as nothing was a secret or a surprise.
Questions to ask the medical team
1. Did you remove all the cancer?
2. How many lymph nodes if any, were removed?
3. When can I expect the results from biopsies of lymph nodes removed?
4. When will I see the physiotherapist?
5. When will I see the stoma nurse?
6. When can I expect a follow up appointment?
7. What support can I expect when I get home from Stoma nurse?
8. Is any further treatment required?
9. How will I know if I have a UTI?
10. When can I go back to work?
11. How will the surgery affect my sex life?
12. Is there anything I should avoid doing with a stoma?
13. Is there a therapist I can speak to regarding any relationship concerns that I may have?
14. What sort of diet should I follow and for how long? Is there a dietician I can speak to and do you have any literature I can read to assist me?
15. What follow up tests will I require and how often will I need them?
16. Who is my point of contact for any questions or issues I may have?
17. How do I go about getting future supplies of products I require for my ostomy?
18. What pain medication will I be issued with and how long should I expect to take it for?
How long did it take for you to receive a bladder cancer diagnosis?