Surgery questions

Hi Tizz

I take it this for a radical cystectomy?

Best wishes 

Mark

Yes, sorry should have said this

Hi again tizz

Iam gathering you haven't had any chemo yet. Iam not sure if it's compulsory but it's highly Recommended. I can't remember if I talked to my surgeon pre chemotherapy but I talked to him one week before the surgery. 

Post recovery can be difficult times iam 14 weeks post op and we'll back on my feet and have returned to work.  The first number of weeks you will need some assistance about the house one thing I  couldn't do was put socks on for the first while. You'll get used to your stoma and bag changing and will be given a stoma nurse.

Have a look at my profile for a better understanding. 

They will of course outline all the risks involved and they will do it again after all its major surgery. I was in surgery for 6 hours and they took my prostrate also. 

Best wishes

Mark

Thanks for that info

Right, fellow geriatric here though nobody has yet dared say it to my face. 70 when operated on 72 now, female and started off very fit (before 4 rounds of GemCis chemo). That was given in London before the op.

During my preassessment, midway through chemo, they suddenly found I had Atrial Fibrillation (could have been Covid or maybe the chemo) that then led to a blood clot in the lung and blood thinning injections, tests for other clots - found none - a 2-week delay to the op but it all went ahead and I think I surprised them with the speed and normality of my recovery. 

Yes I knew about possible cognitive problems, spent the first few hours in the ITU after the op reciting everything I could remember in 2 languages and made the surgeons laugh (they said I was 'good value') and me too but in my case from relief.)

The AF has meant I get tired from time to time and I haven't pushed my exercise as much as I would have liked since the op. But the hospital had a prehab programme and all patients were expected to keep exercising before the op - a fierce physiotherapist would ring up and get me to do sit to stands at the kitchen table and tell her how many I'd done in a set time. They say a robotic cystectomy is like doing a marathon (for the patient). They made us do a bicycle test wearing a restrictive face mask, which was a killer. But I managed it even with the heart problem.

My 80 year old husband had his knee done last year and by 2 months was walking pretty normally so I hope you are recovering well too.

It's worth getting as fit as you can before the op and relief it's all over made me work as hard as I could afterwards as well. 

I asked the surgeon quite a lot of questions (aided by my dentist daughter who read up even more than me). I can't remember everything but important areas in no particular order are:

• How much of my insides will you be removing? eg I wanted them to take uterus etc to get rid of possible areas of metastisis but they didn’t
• How many of these have you done?
• How long does it take?
• Do you recommend stoma or neobladder and why? I wanted a stoma as I didn't fancy having to 'train' a neobladder but others say they are good
• How long does it usually take to recover after the operation, in hospital, back home?
• Looking at me, how long do you estimate for me?
• Anything I need to do to prepare myself, family, home for this?
• What are the best things I can do to prepare myself for the best outcome?
• Can I talk to someone who has had it done?
• Likelihood of metastasis? And what they do in that case? (Ask  Oncologist too)
• Length of follow up after the op (both surgeon & Oncologist).

I should also say that looking at me now nobody would imagine I have had such a big op and if I tell them they are often surprised. And there are many other people of our age who have had it and returned to a good life. There's no reason why you should be any different. 

Hope some of this is useful.

All the best 

Latestart

Thank you so much for that lots of interesting questions that I had not thought of.  I know being fit it’s important and the knee replacement has not helped me

Are you doing your physio for the knee as well as walking? We found they helped a lot. Sitting is not so good and just getting up and moving around the house makes a difference. I hope your mobility improves soon.

Hi Tizz,You may want to ask about sexual function following the op as this can affect men and women.I wasn’t warned about cognitive ability but luckily that did not affect me.I was told to expect weight loss and as I was underweight prior to surgery did end up looking emaciated.I put the weight back on during the pandemic but it took a while for my face to fatten out.It’s best to have help when you come home as it’s usual to feel wiped out and weak.Over time your energy levels will pick up but recovery can be up and down.One of the dr’s warned me that it’s common to feel emotional following any major surgery and I did find this.Unless I had chemo during the op I didn’t have it or radiotherapy as the surgeon said the type of cancer I had was not responsive to it.It is a big op so you have to listen to your body and not overdo it.Eating little but often  is best and build up walking distances gradually.If you do too much you will soon know about it.I felt much better by the end of the third month but it was eight months before I went back to work as my late mothers carer.I am cancer free over 5 years on and living happily with a stoma.We will support you through on here.Best wishes Jane 

Yep doing physio and walking as much as possible, also using static bike

Well you might be behind the level you would like to be, but sounds like you're really keeping up with your fitness. Well done!