My Mum is having her bladder removed

Hi and welcome to the community. Sorry to hear your Mum's BCG did not go as hoped. As regards bladder removal there are many here who have had this operation and may be along to offer advice on the op and the recovery period. It must be difficult for you not being close by. Could I suggest you call the Mac free helpline on 0808 808 0000 (open till 8pm). They will be able to advise on what practical help your Mum may be entitled to. Best wishes.

Hi Rily,

Thank you so much for this and will give them a call tomorrow. 

Hi there. I had the op over 8 years ago age 57. What sort of age & fitness level is your Mum? That will give some indication of how much help she will need. 

Some areas have a social car scheme to help with medical visits. In an emergency of course an ambulance would be appropriate.

If you, or she, have any specific questions, will be glad to try and answer.

Hi,

She is 66 years old and fitness wise, she's is mobile but not fit. Having read some of the messages here, the potential complications during recovery worry me and just want to educate myself with anything that may come at me and support. She had a Kidney removed 2 years ago and got through that. So she has the strength to get through it but suffers from aniexty and depression so I'm scared all this is going to snowball. 

So I'm trying to take the practical approach as much as I can 

Thanks 

Jezza80

Hi Jezza80,I’m so sorry your mum’s treatment hasn’t worked and she now faces a cystectomy.It’s seven months today since I had my bladder removed and I’m doing well.Joining this board was so helpful because I could ask questions pre and post op and this has got me through.We are here to offer support to you both.love Jane xx

Hi Jane,

So glad you are doing well after the op. Do you mind me asking how old you are? and what things you are found most important pre and post op?

Is there anything my mum can do now so that recovery could be better?

What are key things you've found most useful in recovery?

Thanks 

J

It's worth getting as fit as possible pre-op - eating well, abdominal exercises & general walking or other preferred exercise. That will also help her mental well being which is probably going to be a significant issue. Depression post op is common anyway & may need medical intervention.

Patience is the key post op, building up walking little by little & plenty of rest. I was able to manage my own personal care when I got home, but no household chores for several weeks. Even then, had to do only one easy task a day. Make sure the home is stocked with small portions of foods, easy to prepare & eat, in case she needs to manage a bit on her own. Things that can be opened & kept in the fridge for a few days to eat a little at a time.

Does she have any local friends who might be able to help too? Although she may find social contact a bit overwhelming at first. You may also get some help & visits from a District nurse.

Hi Jezza,I’m 59.I don’t have much to add to Teasswill’s comprehensive post.The fitter your mum can be before the op the better.If she can get some good quality sleep that may help.My symptoms were so bad before the surgery that I was getting up all night.I do wonder whether the lack of sleep for those months before the bladder removal made a difference to the recovery time.I still get very tired although I am better.I’ve found the recovery is very up and down,mentally and physically.In my case everything happened in a short space of time so I didn’t have much fitness preparation before the cystectomy.My sister looked after me for a few days when I came home but I was able to manage on my own after that.I am grateful to have had the operation though.The tumour was growing fast and aggressively,it was causing an obstruction and the prognosis would have been poor without the cystectomy.The cancer I had was a rarer type.Love Jane xx

This is great. Thanks you so much! My mind is overwhelmed with the un known and the what's coming but this adds clarity and I can filter these things in without stressing my mum out.

She does have a couple of local friends that could pop in and I'll make sure I can be there for the immediate 2months after. I just preempt the potential problems that may arise during recovery.

Again thank you so much

Jezza80 

All this info is great and know you are around d the same age makes me and in turn Mum positive.

It's amazing to have this support.

Much appreciated

Jezza80