Hi,
It’s been a while since I last posted, so I thought I would just provide an update as the forum has been so useful to me.
After a TURBT and diagnosis of MIBC followed by chemo, I had my RC at the Royal Marsden in mid January. I travelled to London from Staffordshire as I wanted skilled and experienced surgeons for a mitrofanoff urinary diversion with genital and nerve sparing techniques. The surgeons and their teams at the Marston have been amazing throughout.
As part of the operation, I also had a hysterectomy, cervix and lymph nodes removed. It was a long one … about 10 hours long …most of that (I understand) was creating the mitrofanoff from part of my bowel and my appendix.
The initial recovery, I found difficult and it made me feel so vulnerable. It took a while for my bowel to waken up and I had IV nutrition. I was in hospital for about 10 days.
Returning home, I had two catheters in place going through my tummy into the mitrofanoff pouch. A catheter which supported the mitrofanoff while it healed and a supra pubic catheter. I had these in place about 6 weeks and was very happy to get these taken out! The SP catheter was sore and I also had an infection and needed antibiotics during this time.
It’s about 2 months on from my operation now. I still feel some achiness and get tired easily but better by the day. I don’t need any painkillers.
I am growing my mitrofanoff and self catheterise every 3 hours at the moment. It’s wonderful having nothing ‘attached‘ to me. I am very glad to be at the other side of a heavy going recovery though …and despite this definitely think that having a mitrofanoff was the best option for me. I always knew recovery would be more difficult but I felt that it gave me a better outcome …so it was worth it. It was definitely worth it!
It still feels a bit strange peeing through my belly button …but is definitely my new normal now. It doesn’t feel that different from my life before. I just have to remember to keep a spare catheter in my bag/car.
The pathology following the op showed no growth outside the bladder, which is fab news. I move into the phase now …fear of recurrence and scan anxiety….which I know we all Iive with …particularly in the early days.
I will be keeping my fingers crossed and hope in my heart. I’ve done everything I could do to kick out cancer, I hope it’s enough but have good odds!
