Sylvia I am so pleased to hear that I'm sure it will make a big difference ,there'll be lots of little things that can make a big difference ,I can see the Nurse kindly gave some really good advice you might have to write it all down especially the things you need to ask the Doc tomorrow ,I hope they offer some help for you and Ronnie at least until he's fully on his feet it could make such a difference whilst he's recovering from the surgery ,I think as soon as the sickness goes he'll feel a lot better so ask for something for sickness there's no need to suffer ,let us know how you get on ,Jenny .

I will

Sylvia 

Hello Jenny just got back from the doc's. He has put Ronnie on folic acid5mg for 3 months. Also he weighed him and he has lost a stone since the op 8 week ago. He hadn't got the iron results back yet but did say that he would be willing to give him iron infusion but he wanted to talk to a consultant that Ronnie is under for divicular decease. So he will get back to us on that he also gave Ronnie some inoprosol i think it's called but still waiting for the chemist to deliver that one. So we got a bit further. The doc said he wasn't too worried about the results that had come back and they were a bit better than last time so thank god for that. I will be in touch later

Sylvia

It sounds very positive Silvia you both must be feeling better for getting a few things sorted , I take it the inoprosol is for the sickness then hopefully he'll put some weight back on and feel stronger ,if there's anything else you realise you need for him as the nurse on here said get in touch with Ronnie's nurse  at the hospital or Consultants secretary to try and organise it they won't mind one bit, but it sounds like things are heading in the right direction and hopefully it will get easier ,so take care and let us know how you both are whenever you can Jenny .

I dont know what you man by Ronnies nurse at the hospital

I mean Ronnie will probably have a nurse asigned to him on his cancer team at the hospital who looks after him when he's there ,I'm sure I've heard others say if you have any questions ring up and ask for your appointed nurse .

Yes is team at the hospital until he is discharged back to his GP's care, they would  be the best people  to answer any questions you might ave .

Hi Sylvia,

I hope you don't mind me having jumped into your conversation.

Sorry your husband has been feeling so unwell since his surgery.  I had a cystectomy, ileal conduit and removal of my previous type of urinary diversion last August.  This wasn't cancer related, rather the outcome of a benign condition.  I'm a 57 year old female who was very active and fit prior to surgery.  Your husbands op was huge and is hard on anyone, more so at your husbands age.  Recovery time is often much longer than we expect or hope for and it's still very early days for him.  With regards to his nausea it's not the cystectomy that causes the issue it's generally due to the removal of part of the small bowel to form the urinary conduit.  It's very common post op for the bowel to take ages to restart due to ileus and that can take longer than expected to improve much.  It also swells due to surgery and that can take a while to resolve. Many people find their bowel habit and digestion is permanently altered after this type of surgery. Sometimes it's not only a nausea issue, loss of appetite is common too post op. I already had bowel issues prior to surgery but lost 2 1/2 stones in 4 weeks becoming very underweight due to nausea and vomiting as my digestive tract couldn't cope with diet and I had problems with a partial obstruction.  Does your husband experience abdominal cramping or colic when eating? Your husbands cancer team should be able to help with dietary suggestions as well as antiemetics.  When I've had problems with nausea and vomiting I'm usually prescribed two or 3 types so that I can take them more often helping to avoid a big flare up. I struggled to tolerate the fortified drinks because they're very sweet so when I was able to eat, rather than attempting 3 meals a day made sure I ate small snacks frequently over the day and fortified them all to get in more calories and nutrients.  You also mention that your husband has oral thrush.  Although that doesn't cause nausea is it perhaps making him more reluctant to eat?  Thrush is very painful to eat with and can also extend into the throat making swallowing a bit of an ordeal.  As well as that it often causes a horrible, unpleasant metallic taste in the mouth making food taste very bitter and unpalatable. If your husband's still on antibiotics ask his GP about extending the oral thrush treatment until he completes the course if possible to help avoid a recurrence.  I don't know what medication your husband takes but I was started on Letrozole, a treatment for breast cancer just prior to my surgery.  Unfortunately the side effects can include oral sores and metallic taste in the mouth too.  I have since stopped taking it for other reasons and these side effects have very gradually improved.  Pain medication can also be a cause of nausea but I'm sure your husbands GP will have considered that if your husband is taking pain relief. I'm still having to take medication for nausea at times but continue with more frequent light meals.  Try to get your husband to keep his fluid intake up as much as possible, perhaps easier said than done when he's feeling sick. That is unless he's on a fluid restriction for any other health reasons.  He'll probably find with the urostomy that his urine's more concentrated than normal when drinking the volumes he was pre op.  The higher fluid intake also helps flush out mucus and lessen the risk of urinary infection.  I hope he starts to feel a bit better soon and his nausea resolves.  Sending you both best wishes. Anne

Hello Anne Thank you for your advice. Ronnie doesn't have and never has had any pain even after his op. He never gets stomach problems when he has eaten. He likes the build up drinks which he has one every day. His mouth thrush has gone and he only has 2 days left of the antibiotics to take. His surgeon is due to talk to him on the phone next Tues so i will have a few questions to ask him. He has not seen Ronnie or spoke to him since he left the hospital nearly 9 week ago. The op was done robotically he is a very clever man, the man who did the surgery. That clever he doesn't feel he has to check his handy work and just needs a telephone call. Ronnie is 82. I think he deserves a face to face talk at that age. I am 75 and have looked after him for 7 weeks like a mother nurse if you know what i mean. I would have liked a talk face to face with him. Even just to thank him for saving Ronnie.s life as he only gave him 12 months to live if he didn't have the op. Ronnie drinks quite a lot i make him drinks all the time and he has a liter bottle of water at the side of him all day. He has started to change his bag himself which he calls Fred and he started driving last week with the concent of our local doctor Gradually he is getting better and i know it will take time but we have all the time it takes. He is looking forwards to going fishing in the spring. take care you sound you have been through hell and been brave to come out the other end. You are a very brave lady and so young to have to go through all that.  hope you have plenty of help. Ronnie has only me we have no children but that has how it has been for the past 51 years and we still love each other very much. Good luck with your health. keep in-touch 

Sylvie