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Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Bladder cancer

Gemjams83
Posted by

My husband had high grade bladder cancer and he had his operation this monday (9th march)to have his bladder removed and have a neo bladder made. Unfortunately the surgeon couldn't make the neo bladder so he has now got a stoma.

The hospital is almost an hour away and unfortunately I cant get to the hospital and need to rely on family members to take me.

My husband is still on the intensive care ward, we was told he would spend a day or 2 on the ward at the pre op.

I feel so alone, I have 3 kids the youngest being 3 years old with additional needs and the eldest  being 15. I am 36 years old and just finding this really hard to cope with, i just want to be with him all the time but unable to due to getting there and back plus having 3 children to look after.

I ring the hospital a few times a day and getting updates but it just gets worse everyday, they told me today that he is constantly being sick so they have had to give him an anti sickness injection,  his stoma is leaky so they are having problems with that also they had to put a tube down his nose to empty his stomach as his bowels are sluggish and this is the reason  why they think he is being sick, trying to manage his pain also.

I am seeing him tomorrow thankfully, I'm just hoping my youngest child is going to be good for me as I have no one to take care of them.

I was hoping my husband would be on a normal ward by now ,it's making me really worry, I cant eat, cant sleep, struggling to manage everyday life if I'm honest.

I just wanted to know if anyone on here has had the operation and if this recovery is quite normal.

Thank you for reading this long post, I just need to let it all out

Woodyl
Posted by

Hi sorry to read about your husband but what he is going through is normal I was very sick after my operation and had to have a pipe put in my nose to my stomach I spent three days in intensive care before going on to ward I am sure he will be fine please try not to worry as he will need you to be strong to care for him when he comes home good luck x

Gemjams83
Posted by

Thank you for your response, I just worry so much. I always think of the worse.

I'm sure my husband  has a long recovery ahead of him yet, may I ask how long you was In hospital  for? And was this recent?

We was told 10 days but tomorrow is the 5th day and he is still in intensive care so i dont think he will be out anytime soon.

I hope you are well in yourself now x

winkers60
Posted by

Hi,I had the same operation last September and was also very sick and had to have a nasal tube.I spent the night in intensive care but became sick after a couple of days on the ward.Unfortunately the bowels not working well or not at all is a common complication after this surgery.It can cause pain and make you very sick but it should get better with time.I went home on the 10th day.I had a leaky stoma too but the stoma nurses were able to sort that by giving me another type of bag.I am living a normal life with a stoma.It is a big operation but you do recover it just takes time.I know it’s a very worrying time for you and your husband but he is in the best place at the moment.He won”t be allowed home until he can change his stoma on his own and the doctors are happy he is medically stable.I hope he feels better soon.Love Jane x

Teasswill
Posted by

This op is very complex & complications like this are common. He's in the best place at the moment, but it's amazing how well people pick up once stomach & bowels settle better. It's still a very long recovery period, he will be immensely weak & tired at first. If you are not able to visit much, are you able to speak to your husband by phone? When I was in special recovery immediately post op, they had a cordless phone that they held to my ear to speak to my husband - the next morning I was just about able to hold it myself. Once he's feeling stronger perhaps you might be able to do a video call?

I was minimum 7 nights after my RC & no complications, but it took about 8 months before I felt I was doing everything with no fatigue at the end of the day. Be prepared that your husband may have some low days, especially as he got a stoma instead of neo. Hopefully he will have a dedicated stoma nurse to help him cope with this. Emotions can be very fragile post op. Best wishes to you all.

Woodyl
Posted by

Hi I was in hospital for 6 days then they sent me home but to be honest I wasn’t ready to go home and sat and cried when they told me I had to go home . I was home for 3 days then I had to go back in for 5 days as I was in so much pain as I had a infection . I had my op on the 30th jan this year I am just getting used to my stoma love Liz x

Gemjams83
Posted by

Thank you jane, I know it's a very big operation and it's scary enough for me not alone actually being the one going through it.

He is normally my big strong husband who is my rock, I just feel so lost without him being home with me and our 3 children. 

Do you have to eat a special diet to help the bowels, I'm guessing even when he is back home I will still be worried about everything  xxx

Gemjams83
Posted by

Thank you teasswill, it upset me as the nurse asked if he would like to speak to me but he said no.

I cant imagine how much pain he must be in so I dont expect him to want to be talking much.

Other times I ring and the majority of the time he is asleep which is no suprise there, he was so against a stoma so I know that will get him depressed but people live with them and carry on with everyday life.

I'm sure it will take time for him to adjust, wow 8 months is along time. I hope you are feeling better now xx

Gemjams83
Posted by

Hi liz

Wow 6 days definitely doesnt sound right, are you still feeling sore and tired as yours wasnt that long ago.

They say 10 weeks recovery but I'm not so sure, I have booked 5 weeks off work to take care of him and my youngest who is 3. I'm wondering if that will be enough time, I suppose only time well tell.

So pleased that you are getting used to your stoma, I'm sure it takes a while to adjust .

Love gemma x

winkers60
Posted by

Hi,Yes you have to have a special diet to start with and then gradually introduce more foods if you think you can manage them.I asked my urologist how long it took for the bowels to get back to normal and he said about 6 months.I don’t eat much meat usually but I was able to eat turkey or chicken in a sandwich wrap and soup.I think snacks are much easier to manage than a big meal.I lost a stone in hospital but have put the weight back on now.Your husband will be given a diet sheet to take home.He probably won’t be feeling hungry at the moment if he is still being sick.I was over 40 miles from home when I had my operation so I know how stressful it will be for you not being able to visit as much as you would like.love Jane xx

winkers60
Posted by

Hi Gemma,My sister Sarah took a few days off work to look after me.The second week a relative took over when Sarah went back to work.After that I was at home alone and managed ok.Sarah left non-perishable food at a height where I could reach it and I was just very careful bending down to open the fridge.I hope your husband can adjust to his stoma,it will be harder if he thought he was going to have a neo bladder.Sometimes things don’t always go to plan.I got my stoma but had to be opened up abdominally as well as robotically as the tumour was too large to remove the usual way.It was a surprise to see a great big scar when I came round.Xx

Crustybladder
Posted by

Hello Gemjams,

I don't often comment about my experience as I was described as a 1 in 500 patient. I had a radical cystectomy with conduit and stoma reconstruction. Prior to the op I had 3 months of chemo.

I felt awful from the moment I came round. I ate nothing for four weeks, had a nasal tube to remove bile from my stomach, had a collapsed bowel, a nephrostomy, was given liquids and food via a PICC line, diagnosed with sepsis, c diff, a blood fungal infection and had 7.5 litres of infected pus pumped out of my abdomen. I was in hospital for five weeks then readmitted twice.

It took me a year to recover but that's my point - I recovered and now, three years later, I am free of cancer and living a full life, albeit slightly modified. 

You are having a very tough time. I know it's often worse for our loved ones as we patients are just getting on with surviving the treatment. You may have a support group near you and some of the members may be able to help with the practicalities of life. Macmillan volunteers also offer support with basic domestics, shopping, travel to hospital and so on.

I wish you both well.

CB

I may appear to be listening but in my head I'm all at sea. 

Gemjams83
Posted by

Hi CB

Wow you had a real tough time, thankfully you are here to tell the story and living your life. 

I feel selfish saying how emotional and tiring it has been on myself, as I havent been through it and have no idea on the pain and the after effects of it.

It is tough seeing the person you love so Ill and in pain and not being able to help them, I feel pretty helpless.

I've kind of over looked Macmillan I never knew that they offered those kind of services, thank you for the advice.

I wish you all the best, I'm looking forward to finally see ing my husband tomorrow.  Its been 5 days but seems like 5 years

Gemma x

Gemjams83
Posted by

Thank you jane, I did wonder if he would be sent home with a food list. I think they are going to try and feed my husband tomorrow through intravenous, he hasn't used his bowels yet, so I believe they want him to use them before being allowed home. 

Not sure when he will be coming home but it seems like i havent seem him for years rather than days.

Its ashame he wasnt at the local hospital, I would be there every day but they didnt have the robot that did alot of the operation there.

Love gemma x

Gemjams83
Posted by

Thank you jane, I did wonder if he would be sent home with a food list. I think they are going to try and feed my husband tomorrow through intravenous, he hasn't used his bowels yet, so I believe they want him to use them before being allowed home. 

Not sure when he will be coming home but it seems like i havent seem him for years rather than days.

Its ashame he wasnt at the local hospital, I would be there every day but they didnt have the robot that did alot of the operation there.

Love gemma x