I'm sure someone on here should be able to point you in the right direction to get some real help ,I've seen others get help and advice from others ,my only suggestion would be to maybe get in touch with his named cancer nurse, if not when you go to Docs on Tuesday make sure you write everything down that you need to ask because if you forget something you'll have to wait a good while to speak to a Doc again .

What is a namedcan

Sorry I've edited it, it was meant to say named cancer nurse .

He hasnt got cancer any more ( i hope)

No of course not I was just trying to think who you could talk to ,to get some help with everything that you say you have to cope with ,they might be able to help put something in place for you to make things a bit easier for you until your hubby is feeling better .

It's a shame the hospital just thinks the wife is a nurse and send the husband home for the wife to look after the husband; Which is what they have done to us. We have no family or children god knows what would have happened to him if he was on his own. But it looks like i cant get this right for him. There seems no end to it. i thought when he had the op we would be able to get back to normal what ever that is but it's got worse and even my husband said to me the other day if he had known we was going to have to go through all this he wouldn't have had the op and let nature take it's corse.

That's why I'm suggesting you could do with a bit of help and the help is there its just a matter of knowing who to contact ,have you been in touch with the nurses on here I'm sure they will be able to point you in the right direction especially when you have no family to help you ,I've heard a lot of people say how good Macmillan nurses are as well  I would definitely give them a ring and explain the situation don't let it get any worse ,because you really do matter it will get better so don't give up hope .

all they do is tell me to get in tuch with the hospital then i get moved from pillow to post. I give up no one wants to know they just pass people to another person and so on. Thankyou for your help i will leave it there

Hello Sylvia and thank you for getting back to us.

I am very sorry to hear about how your husband has been after having a radical cystectomy and I can appreciate your concern for him. It can be difficult sometimes to care for someone at home after surgery. 

The GP appointment tomorrow will be an opportunity to update his doctor about his situation. Hopefully the GP is up to date about your husband's surgery and will have received information from the team that treated him.

I am not sure if an injection instead of tablets of iron can be given or if  the GP can arrange this. It might have to be the hospital cancer team caring for him that would know if this was possible and to arrange it, but do ask. Also do ask about anti - sickness medication to help take and tolerate the iron tablets, even if he had them before there are different types to try.

A urinary tract infection can make people feel very unwell and thrush in the mouth may be caused or made worse by the antibiotics he is taking. I hope he is able to take them as this will be the best way to get rid of this infection and make him feel a better. Ask if there is anything that can be prescribed for the thrush in his mouth. 

At this appointment do also ask if your husband can be seen by the community district nurses team, and what other support you and your husband can have. Let the doctor know what you are doing for your husband, it may be possible to get some support to help you and your husband recover after surgery at home.

You may also want to speak with the hospital team that treated your husband and let them know how he is. You could do this by asking if the appointment can be brought forward, you can speak with the surgeon's secretary about this or if there is a specialist cancer nurse leave a message with them. 

I hope this helps. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline

Hello Jenny hope your well. I was looking on the internet about Ronnies night bag filling with air and i came across this advert for a bigger bag called big bear. So i spoke to the stoma nurse and they got some samples and guess what they work.No more air in the bag. Know Ronnie can have a good nights sleep. 

Sylvia