Radical Cystoscopy

Hi,My pre-op advice would be to try to get as fit as possible if you are able.Eat healthily,get enough sleep and avoid being constipated.After the surgery your abdomen will probably be quite distended but that should get better over time.One thing that I wasn’t warned about is how much I would bleed and leak vaginally.If you haven’t had a hysterectomy already take plenty of pads and pants.I got through an enormous pile of pants and pads and ended up wearing the huge hospital pads and disposable string knickers.I was offered plenty of pain relief.I started off on morphine but that made me horribly sick even with anti sickness drugs.I got by just taking paracetamol.You will be encouraged to walk around after the op.There were bars along the walls of the ward I was on and I was very grateful for them to hold onto.I made myself get up and dressed and walking almost everyday.Take in loose fitting clothes,I looked pregnant directly after surgery and my sister lent me her lounge style trousers as mine were too tight.Post surgery you probably won’t feel that hungry.It’s usual to lose weight after a cystectomy.I lost a stone during a 9 night stay.I ate small amounts when I felt hungry.I couldn’t manage bread but found the sandwich wrap type things ok.The recovery process can be slow and frustrating at times.I was weak from a bowel complication so the first few days back at home I couldn’t do anything.You will have good days/weeks and bad days/weeks too and it’s normal to feel emotional.My urology team were very good at explaining how I would feel after surgery and they were right.I lazed about watching a lot of daytime tv but as the energy levels picked up I was able to get back outside gardening.It’s just over a year since my op and I’m caring for my elderly disabled mother full time.Do you have a date for your op yet ? I did a lot of heavier household chores before the surgery as I knew I wouldn’t be able to do them directly afterwards.It helped my pre op nerves too.Love and best wishes.Jane xx

Hi Jane Thank you so much for your reply. I will get come pads and knickers - maybe the maternity ones will be suitable and some loose fitting trousers. I am very apprehensive about the operation but they have given me no other treatment options for my stage and grade. Just want to get on with it. Sheffield has a good urology dept. so I feel positive I will be in good hands. The treatment so far has been excellent. After being fit and active for years, this has come like a bolt out of the blue. No warning what so ever. I went to bed one night at the very end of July and woke up for a wee. It was then I saw blood clots and the rest is history. I don’t have any of the risk factors so am bewildered as to why this has happened. 
Thank you for your suggestions Much appreciated.

Meryl xx

Hi Meryl and welcome to this marvellous group. My treatment is different so no advice to offer ref RC but I understand the shock of getting a bladder cancer diagnosis. Sending you love and cyber hugs. xxx

I know a little of how you feel. I went for a wee one evening and it was mostly blood. Quite a shock. Within four days i had a definite diagnosis, It is very bewildering. You are in a good company and will be well supported, Keep in touch.

Hi Meryl,Being fit and active already will really help.I was incredibly apprehensive before surgery.I was helped so much by everyone here on the board.love Jane xx

It all seems a bit surreal when you feel fit & well - that's the sneakiness of cancer. Do you know if you are having robotic or open surgery? If robotic, they tend to get you home sooner, but overall recovery time is about the same. All good advice from Winkers, but I had no vaginal leakage, so it does vary. I would advise stocking up on snack foods, or split foods into small portions for the freezer. Plenty of protein & carbs, little & often, even if it's just a couple of spoonfuls every couple of hours, plus about 2 - 2.5L fluids daily. I didn't get walking properly for a week, as I was nauseous & dizzy, but did do the exercises given by the physio. After that built up a bit more each day, in small doses. You will be incredibly weak & tired initially, just do what your body dictates. Rest when you need, just build up normal activities little by little. Initially I was able to do my personal care but little else. Several weeks before doing any housework or cooking (other than very simple heating stuff up). I started going out to leisure activities about 6 weeks post op & part time work at 3 months, but it was 8 months before I fully shed end of the day fatigue. 

Feel free to ask any questions & hope all goes well for you.

Thank you so much for your reply. I know it is going to be tough and feel lucky I have my husband to support me. I was quite fit before all this started. We are regular cyclists but not been on my bike for 10 weeks now - too uncomfortable. We try to walk everyday and I do some exercises depending on pain levels. I am looking forward to next summer - warmer longer days when we can hopefully resume our lives. 

Thank you for your kind wishes. Meryl