Goodbye BCG hello Cystectomy

Hi Simon,Good to see you posting again.I’m curious how long did it take you to fully recover ? Jane 

Hi Jane, apologies for not being on for a while. This old cancer malarchy massively intrudes on your daily life, even after treatment!

Recovery was good. I spent 8days, 9 if you include the going in the night before! Some of that was delay as a result of the Jnr Dr's strike, but I was up and walking the day after the op, admittedly a little stooped to start with, but by the time I was out, walking like a "normal" human.

I was tender for about 4wks after, although I did as much walking as I could. I followed the advice and kept "lifting" to a minimum and moving about in bed was using elbows as much as possible to keep the effort off my tummy (big concern post op is around preventing hernia).

By end of month 2, I was pretty much doing everything as normal. The recovery from the op is put at 12wks, so I was signed off mid/late September.

My wife and I managed to get away for some Autumn sun, which was the "final" test of confidence in my stoma. I've been lucky, I have found a stoma bag I like (Salt is the manufacturer and supplied via the NHS) and have faith in. So being able to swim (in the pool and the sea) was brilliant.

So, to answer your question, I found 1st month is bothersome and tiring, 2nd month is better (you're comfortable with routine and how to do things without over doing things) and 3rd month is a blast.

Keep on keeping on.

Simon

Wow Simon,I’m envious of your recovery time.I was up walking in icu and virtually every day on the ward except  when I got ileus and was too sick.Discharged on day 10 better by month 4 but not back at work until 8 months.It was over a year before I felt totally recovered.I was physically very thin and ill  pre op due to the cancer and emaciated post op but gained all the weight back during lockdown.It’s good to hear you are swimming and have faith in your stoma.I’ve been lucky with mine only a handful of leaks in the past 5 years and I got used to it very quickly.After years and years of chronic bladder disease and then cancer I don’t miss my bladder at all.Jane 

Blimey Jane, that really is a long recovery. I like to think the pre-habilitation piece helped somewhat, along with unfortunately being relatively young and pretty fit. Also, hospitals work hard on the recovery piece and want you out and off their books quickly, whilst ensuring everything is done properly (they don't want you back too quickly!).

I feel lucky to be feeling good, sometimes I feel like a fraud. Then, I'm reminded that this is the good time, enjoy it as, unfortunately but inevitably, the bad times will return (the joy of small cell cancer).

Keep on keeping on.

Simon x

Hi Simon,I never saw a physiotherapist before or afterwards.There were some exercises in the stoma booklet that I did pre op.Best wishes to you.Jane x

Off my own bat, I did abdominal exercises daily (& pelvic floor, for neo) in the run up to my op - that was over the Summer, so usual fitness class not running. Really not sure if that helped or not. 

I was surprised when at around 6 weeks, consultant said I had recovered well, when I was still feeling far from fit. He probably just meant wound healing & blood test results. I'm sure age & prior fitness has a lot to do with recovery speed. Also, what sort of activities you expect to do & usually do. For women who are often doing household chores as well as working, may be harder than men who have a wife to look after them?

I had health problems prior to cancer but was relatively fit caring for my mother.I was up and down stairs all day and pushing her wheelchair about when we went out.Looking back I must have had cancer for a few months prior to diagnosis.I had no visible blood in the urine at the start.It was the obstructive symptoms that were different to the Interstitial cystitis combined with weight loss,exhaustion and repeated infections.I do wonder whether there is much difference in recovery time between men and women.

Good luck. You sound really positive.  Xx

 KimDav  cheers the only way is up, and I have no choice , so have to be positive

Hi Leo

Wishing you the best of luck with your Cystectomy next month! I had my RC operation on 25th September. The only advice I can offer is perhaps a little bit of physio to strengthen your core before the Op. I’m sure the operation will be successful & you‘ll find coping with your stoma surprisingly easy.

Best wishes 

Gareth