Hello Sylvia

I saw these posts and just wanted to say how much I admired your fortitude. My wife Samantha has bile duct cancer,  is suffering from this dreadful nausea and currently eats very little. She is also constantly in and out of hospital with infections that flare up and after 4 "interventions" and 6th visit to the hospital it has started to wear me down. It is so tough being the only carer and although I have family it is down to me to deal with 100%. It is weight loss that is so upsetting for me. Therefore I found your post struck a chord with me and I wish you really good luck. 

Mike

I know Ronnie needs the iron hence the tablets but if they are causing him to lose so much weight its defeating the object  ,once he starts eating again and gains some strength they might be able to check his iron levels and if needs be start him on the shots instead of tablets as I'm sure they will be better and a quicker way to get iron if he still needs it .

Thank you Mike i wish you and your wife well. Remember she is with you your not on your own there are people on here you can talk to. Phone the cancer nurse up and talk to them. You will probably think they cant do anything for you but it is good to talk to someone who knows what you are going Through. Do it today. Please

Regards frm Sylvia 

Hi there Sylvia and thanks for updating us about Ronnie

It is tough looking after someone after a large op and often the recovery isn't always plain sailing i'm afraid to say with some bumps and unexpected turns along the way.

Hang in there, it sounds like you are doing all you can to help him and reaching out to professionals when needed, which is always the best thing to do.

Try and give the doctors the benefit of the doubt today. Whilst they may not be experts in performing a cystectomy itself they are trained to assess and manage any symptoms a patient has, so hopefully they'll action a plan. I'm sure if they feel the hospital team to be involved they will contact them but at the moment hospital may not be the best place for him to be.

Symptoms can be caused by lots of different things and won't automatically be linked to the surgery. Hopefully once the thrush clears he may find it easier to eat and drink. As I am sure many people have said previously try and encourage little and often of whatever Ronnie fancies to try and get some nutrition into him. I am sure the doctors will also prescribe build up drinks to try  and get some calories in as well.

I hope todays appointment goes well and he starts to feel much better soon.

Take care

Naomi

He slept 12 hours last night and this morning he had a small bowl of cornflakes and a small glass of 100% orange juice with bits. He managed to keep his tablets down afterwards. I just asked him what he wanted for his lunch and he said half a tin of rice pudding. Well at least he is having something. If he wont have any dinner i will give him a buildup drink. He likes them. I will see what the doctor says this after.

From Sylvia

Thanks Sylvia

I actually went to the Doctor last week and he advised stopping work for a bit. I was getting a little stressed and he virtually told me that I needed a complete break.. I have started to feel better as a result and tidays hospital visit was easier for me. 

 He also advised Counselling which I will be doing as well. I have found St Christopher's helpful as well.

Sam finds Rice pudding works for her along with teacakes with no butter !!

Mike

Hello Mike your doing the right thing giving yourself a brake. Sometimes enough is enough and you have to go with your gut feeling and if you need a rest you need a rest so good for you. In the uk they gve you time off work with pay so i hope you get looked after at your work. The doctor as give Ronnie a blood form so we will go get that done tomorrow as we have a walk in blood shop and it goes to the hospital in York and results are there the next day. She the doctor was happy with Ronnie and the tablets he is taking and ok with stopping the iron tablets. When we got home he said he wanted a boiled egg and he had some ice-cream and fruit with jelly. Not a lot but it was nice he just asked me instead  of me going through every thing in the fridge. Next thing is the CT with contrast on his thorax, abdomen and pelvis on Wednesday. I wonder how long it will be before we get the results of that cos it took 10 week for someone to phone and tell him the op had been a success.The lymph nodes were clear and the tumor was still contained in the bladder but there was some cancer in the prostate which all that lot got taken out. Hence the stoma. Ronnie is profoundly deaf and the day after the op the consultant surgeon came round and Ronnie didn't hear what he said to him and i wasn't allowed in till afternoon so i never got to know anything. We got no letter from the hospital nothing. How cruel is that. Off to make a cuppa take care and have a rest. from Sylvia 

It sounds like stopping the iron tablets has given Ronnie a bit of an appetite back that's great news I remember you saying he wasn't eating anything before ,fingers crossed this is the start of him putting some weight back on and gaining his strength .

Mike, you do anything you can for someone you love. I have known Ronnie for over 50 years and he is still the love of my life and i couldn't imagine life without him. So i know how you feel. It is hard. People that are like my Ronnie are stuck in there ways and as soon as something challenging comes in his way he comes to me for support and help and i will always be there for him when he needs me and likewise he would be there for me. All you can do is be there for your wife. Just seeing your face every day will be comfort for her and the most important thing of all is the love you show and care for her. Stay strong, you are the most precious person in her life. But don't forget to take care of yourself as well. 

Regards from Sylvia

Hi Sylvia

Thanks for the post. Glad that Ronnie is eating. 50 years is something to be proud of ! York is a nice part of the world. 

Sam had an up and down day. However the docs are good and the main problem seems to be some water retention which is adding to the pain and nausea.  They are looking into this now. The second cycle if chemo is still planned for next Friday and I am hoping we can stay on timetable. 

I hope Ronnies CT scan went OK. 

Rail strike tomorrow which can be a challenge but I shall get there at some point hopefully. 

Mike