I was so close to the 5 year all clear - now waiting again

Thank you so much for your messages of support everyone!

I had two more hospital appointments yesterday, one with the anaesthetist and then a stoma nurse. The nurse was brilliant and filled in lots of blanks. But what she said has scared me!!!

I'll be in theatre 6-7hours, don't expect to be back on the ward until 6pm ish. I'll go into high dependency for a couple of days. I'll wake with two stents, a drain and a catheter. She said I'll have a feeding tube for a couple of days. My bowls will be a bit all over the place too!

I'll be in hospital for a week or more..... I'll miss my children so much and I don't want them to see me in loads of pain again. I'm still so traumatised from my leg injury.

Omg this all sounds horrendous!!!

C xx

Hi

Six hours op seems about right, you won't know anything about it until you come round. I was out and home after six days and they had me out of bed and walking the following afternoon after the op. No catheter, but each case is different and you've had some kidney issues. 

It all sounds very daunting, but your team know their stuff, so take it in small steps.xx

Hi Purplesparkle, I am sending you lots of love, wish i could comfort your anxiety. It is frightening to be the patient for big surgery,  to the surgeons and staff , it is something they are expert at  as they list all the things that will happen , like its routine ,and  it feels monumental for you to hear. 
It is something you will get through as others on here have. I understand missing your children entirely, I cried for a few days after big surgery, i missed my son so much. 
one step at a time and one day at a time is all i can say. Sometimes you have to take it hour by hour and before you know it , you are home and recovering. Keep in touch, we are here for you.

much love to you Angela xx

C, Everyone on the forum will be thinking of you. Garviv

Sounds quite a cautious programme - hosp do vary in their protocol. I didn't have a feeding tube, I think that's usually only if you have excessive nausea. My hosp did have an enhanced recovery programme so I started on nutritional drinks straight away. No bowel movement for at least a week - quite restful not needing to move from my bed or chair! However, they should get you up and walking/shuffling within a day or so. If you can manage some walking each day, that helps wake up bowels. 

There shouldn't be significant pain, although I did have a bad day when the epidural was removed - with hindsight, I think a lot of that was leaky stents with urine soaked dressings on sore skin. Hopefully you won't have that issue with a stoma.

Only you know your children & what they can cope seeing, but with advance preparation (about tubes etc), should be OK for them to visit you & not see you in pain. Very best wishes.

Quick update for you all as needing your wonderful support more than ever!!!

The big op is all booked in for Monday 19th February RC/hysterectomy/lymph nodes/Ileal conduit urinary diversion.

My surgeon seams like a top bloke, I've got a new CNS as procedure taking place in new hospital. I'm also still in touch with my now 5yr friend CNS from local hospital. I'll meet my stoma nurse again at 7:30am on 19th.

Bag all packed: Dressing gown, slippers, nighties, wash bag, sanitary pads, quiz book, lip salve, phone charger - anything I've forgotten???

Two more sleeps!!!

C xx

Hi C,Sugar free chewing gum can help stimulate the bowels to start working post op.Loose waisted clothes are helpful as your stomach will probably be swollen.Make sure that you ask for laxatives if you are prone to constipation.May be take in something to flavour the hospital water as it’s usually disgusting.Will be thinking of you and hoping it all goes smoothly.I hope you will update us when you feel able.Lots of love Jane xxx

Hi,

I hope it all goes well. Probably get you up and out of bed asap to get your bowels moving. You might suffer nausea after the op, due to the anaesthetic, but they can treat it very effectively. Good luck and hear from you at the other end. xx

Good luck on Monday. I can’t give you any practical advice. Not had Bladder removed but we all on here will be thinking of you. I’m having another flexible cystoscopy Monday morning. Butterflies just starting. Garviv

Dear Purplesparkle, I will be thinking of you on monday , i am sure you must be feeling overwhelmed. Sending you a wrap around hug, hoping you feel the comfort. When you feel up to it, keep in touch

much love to you Angela xx