Before, During, and After My Cystectomy
Last updated: March 2020
The morning of my radical cystectomy came, although I swear that night felt like it would never end. I said goodbye to my husband Tim and to my son Ash, and tried not to cry. The enormity of what was happening had just hit me. I was lucky that my Urology Nurse, Anita, (I know, how funny, and my Urologist is called Tim, too!) had asked to come and see the operation being done, as it was “robotic surgery”. It was so lovely to see her smiling face. She held my face in her hands as they started to do the spinal anesthetic, which has to be done while you are awake to ensure that they don’t hit any nerves. Twice I squealed out as they hit the nerve in my hip; luckily on the third time they got it perfect. My heart was racing.
Getting numb before going under
I then had to swing my legs round, such a weird feeling as by this time my legs and bottom had begun to go numb. They explained that I would be tilted with my head down and that they would blow air inside me to give the organs room to move and also give them room to work. I didn’t care about that bit since I would be knocked out. I then remember them giving me an oxygen mask and inserting the anesthetic into my cannula…I said, "night" to Nurse Anita, and that’s the last thing I remember.
Waking up after surgery
I woke up feeling like I had just been hit by a bus. Someone was calling my name; I remember thinking that I wished they would go away as I wanted to sleep. I opened my eyes and was in intensive care. It took a few moments to realize where I was and what had happened. I was so thirsty, so, so thirsty. A lovely Nurse gave me a drink, only small sips to begin with, and I asked if it all went well and was informed that the Consultant would be around in a little while to let me know, although as far as they were aware, it had all gone well.
Reuniting with my family
Tim and Ashleigh both arrived, and I nearly burst into tears. I just wanted to be at home, with them, and it didn’t help when Ash let it slip that they had been to a KFC on the way! Oh my goodness I was starving, although didn’t actually want anything to eat. I felt relieved; I had convinced myself that I would die on the operation table, and had written letters to my loved ones the night before.
My poor hands were so sore; the cannula wasn’t great and the Nurses kept taking blood from it and trying to get some magnesium into me, which was apparently low and was why I felt so very thirsty. In the end, they gave it to me in a drink form which was much nicer. I slept on and off, Ashleigh took a photo, and I was amazed at how very bloated I looked.
Updates from the surgery about what was removed
The Consultant came around and spoke to us, but to be honest with you, I have absolutely no idea what he was saying. Tim then explained that they had removed the bladder and given me the hysterectomy, though they had left my ovaries in the hope that I wouldn’t go through the menopause, but there was something else, too. They had found some scar tissue, from endometriosis, which had wrapped itself around a nerve at the top of my leg, and this could also explain the amount of pain I was in, AND they removed a lymph node which had contained active cancer cells. I felt so lucky (or I do now— I think at the time I couldn’t have cared less.)
I was in a lot of pain
I had always considered myself to have a high pain threshold, however, I just couldn’t cope with the pain. They set me up with a morphine driver, so that I could take control of my own pain management. The physiotherapist had already popped by to let me know that in the morning, they would be getting me up and out of bed, to help with the healing and to prevent DVTs and clots.
Searing pain and trouble sitting up
WOW, so the next day I rolled onto my side, and it felt like I had been stabbed, although having never been stabbed, I have no idea if that is what it feels like. I had searing, stabbing pain down my torso. The Nurse helped me then push up from the bed, and I was up. Off I went, twice around the ward. Once I was up, it was absolutely fine, it was just the getting up and down bit. I noticed that there was a lady in another bed, who had had hers done 24 hours before me and was up walking about, laughing and joking. I guess it all depends on who you are, we are all different people with different bodies, and to be fair, I am slightly “chunky”.
Coping with my new 'Sally stoma'
I spent 2 days in intensive care and then was transferred to my own room, due to having private Health Insurance. In my own room, I then had to deal with my “ileal conduit”, lets just call it “Sally stoma,” shall we? This was what I was worried about, oh my goodness, what if I couldn’t touch it? What if I found it so repulsive that it made me gag? I knew that if this was going to happen, that I would have to be able to look after it, after all, it can’t be that bad, can it?
Changing my bag for the first time
The Nurse gave me the spray to remove the adhesive bit of the bag. I sprayed around it and began to lift it, and I felt so apprehensive that I asked the Nurse to just “watch me," and if I couldn’t do it, then she could take over. You really do have to take the bull by the horns and just go for it! So I did… I used water and a disposable cloth and cleaned the area. It didn’t make me gag, it looked just like a cherry with the stem sticking out (stents). I felt amazing, I had actually done it! I hadn’t been sick, or repulsed!
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