Possibility of cystectomy

Hi, I had my op 8 years ago. With no complications I was the minimum 7 nights in hospital. Most people underestimate just how tired & weak you are post op. However you are up & walking (shuffling!) from day 1. When I got home I could go up & down stairs & do all my own personal care, but needed my husband to do all the cooking & housework. After a few days I could manage very simple things like making a sandwich, heating something in the microwave so could cope when he was at work (2 - 3 days a week). Took a few weeks before I could tackle any household chores although I was gradually building up walking day by day.  At 6 weeks I started driving again & resuming leisure activities. Started a phased return to work at 3 months - just one short day a week. By about 6 months post op I was back to all usual activities but still had end of the say fatigue which lifted around 8 months post op.   The rule is to allow one month for every hour in surgery for full recovery (hence the 9 months you've heard), but it is a gradual process. Ideally your wife would probably need to take some time off, or maybe reduce hours for a week or so when you get home. Hope that helps give you an idea of what happens - feel free to ask any questions.

Thanks Teasswill,

                            there is much in your response that will help me going forward. No doubt I will be calling upon your knowledge again if my pathway is one of cystectomy.

Hi Potter 100, I had my RC in February and similar time frames to Teasswill. Fortunately my wife got some time off about 6 weeks in total I think as I found I really needed her support. My recovery was hampered with several infections unfortunately which certainly made it worse recovering quickly. Keep moving as much as possible , walking every day when able to , a little at a time. The tiredness really does have an impact and I found the catheter a right pain too , especially sleeping. I found I had to sleep during the day to catch up . 

On the positive side , 6 months later I feel fine and am doing everything normally , well almost. I had a neo bladder the same as Tesswill so again if you need any advice just shout. There are several people who have had stoma so can advise on that. 

Best of luck to you .

Hi Potter 100, obviously if the CT shows cancer outside the bladder it's a different kettle of fish. However the failure of BCG is not in itself a definite for cystectomy. Some places don't seem to offer Mitomycin [into the bladder just like the BCG] but this has put a stop to my husband's cancer whereas he had a new papilloma growing just 6 weeks after the 6 BCG. So definitely worth enquiring, if you can dodge major surgery I'm sure it would make keeping up with work easier! Any questions do ask or search my earlier posts.

Very best,

Denby

Hi Rily,

           I’m thinking neobladder if it comes to cystectomy. How long after your CT scan did you have to wait for the actual operation? Do you have any pre op tips. I feel I should be doing something to help myself to be both physically and mentally prepared for a possible op!

Hi Potter100 . I still have my bladder, so not really of any help regarding neobladder. Hopefully if Teasswill picks up this post, she will be able to give you some insight in to this procedure. Best wishes.

Hello Potter100

As Rily says, Teasswill is the neo expert, I'm a stoma boy.

However, my simple advice for you pre-op is to get as fit as possible, especially upper torso and arms as you'll need the strength to haul yourself about in the first few days after the surgery. Take lots of exercise, walking is good. Eat well, plenty of protein and fresh fruit and veg. A couple of days before the op, you'll have to knock off the fibrous foods and take a few bottles of nutritious goo that you'll get from the hospital.

If you'd like to speak to a neo patient, there will likely be one in a support group near you. If not, I can put you in touch with one of my support group chums who can brief you on what to expect and life afterwards.

CB

Hi Potter100 my RC was about 3 months after planning to do it. There are only certain hospitals that can do it. I had to travel an hour and a quarter to my nearest one. It's performed robotically by a team of surgeons who you meet on the day , think about 6 if I remember. My consultant from my local hospital was one of the team fortunately so made it easier on follow ups. You will go in the night before and have the op early as it can last 8 + hours. I went down at 8.30 and came around at half 6.

Definitely try to get as fit as possible as crustybladder says it will certainly help . Just get organised as possible and try to arrange for someone to be home to help you after . I know you said hopefully your wife can be off to look after you. 

Mentally I think I found that easier as I saw it as means to an end , to get rid of the cancer for good. Keep as positive as possible. It will be extremely hard at first the recovery and normal life will seem a long way away but it will get better. I say normal life but there are changes of course but compromises . I still am wearing tena pants ( nappy really) at  night 6 months down the line but don't leak much , only occasionally if really tired. However I was getting through 3 to start with. Again during the day I only use 1 pad as opposed to 3 or 4. Hopefully this will get better over time. I get  up twice a night every 3 hours to go to the toilet, set routine now for life. 

From being on here a while I think everyone who has had this has different recovery patterns and just be prepared for that. If it doesn't quite go like I have said or others don't worry you will get there in the end. 

Any questions just shout.

Waiting time for surgery will vary between hospitals (how busy they are), any further tests they might want to do & how urgent it is. I had plenty of time to prepare having made a choice for surgery (but not yet decided urinary diversion) but in the end had only 1 weeks notice of the actual date. At that time my hosp only did open surgery, I'd still be happy with that now compared with robotic - go with whichever your surgeon prefers and has expertise with.

All good advice about getting as fit as possible, strengthen abdominal & pelvic floor muscles. I looked on it as a positive project, preparing food (small snacks/meal options), clothes (loose, comfy elastic or drawstring waist easy wash & dry), equipment (stool for shower room to sit on while drying), entertainment for sitting at home, household instructions for family...

If you go for neo, you do have to be prepared for the training period which can be tiring & frustrating. Expect initial incontinence which can persist long term to some degree, especially at night. Success varies, but if all is well it's very easy in the long term.

Fell free to ask any more questions!