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

I had the same op, but it was due post RC issues. Painless.

Hi All,

Update - so plans are progressing for my cystectomy.

Kidney function scan shows right kidney emptying but slowly

Bone scan didn't show any concerns

Tomorrow is my pre op assessment and then appointment with surgeon on Tuesday 6th February.

Feel like it's getting close now.

Work have confirmed I'll get one month sick pay from the date of surgery and reduced hours (literally as few or as many as I can manage) until surgery.

Older two children now know, just the 7yr old to tell, but once I have a surgery date.

Bladder not happy and needs to go!!!

C xx

Wow PurpleSparkle, you've really got everything sorted out now. Well done superwoman! Only question I'd ask is what support will you get once you leave hospital after the op? You really will need to focus only on yourself for a couple of weeks I'd say. These ops are exhausting.  Sending you a big hug for being so brave. Hex

Hi Herothedog , Good question, my husband will take time off work to manage the children and look after me. I'm planning on taking the one month sick pay then a month statutory pay and see how I feel after that. 

Still going in waves of being strong, then numb, then pretty terrified!

Thanks for your support

C xx

Hi Purplesparkle,

You are so courageous , I can only imagine how tough it is for you right now. in the coming days while you are waiting for your surgery, please dont hesitate to connect each day if you need to , even if its just to say “I am scared”  , someone on here will be there to reach out and  hold you steady , until you get through this .

sending you much love Angela xx

I'm wondering if you might need longer than a couple of months to heal. Others on here who've had cystectomies could advise better. I'm thinking that particularly as you have 3 children. I'm sure their dad will be a great help but I'd be amazed if they didn't pop in to your room every 5 minutes. That's kids....if mum's there then ask mum.xx Have you been allocated a Clinical Nurse Specialist? My one is fantastic, I could ring and ask her anything that was worrying me  and she'd call back and sort me out. The medics will be able to advise ref time off for convalescence. Numb and terrified strike me as very reasonable emotions in your circumstances, but what I hear is an incredibly strong woman. x

I was told 3 months off work & needed every minute of it. I'm not sure I was really fit to return, but it was just one short day a week at first - great to be doing something normal again, with some people who didn't know I was post op. Does your workplace have an Occupational health dept to advise?

Hi PurpleSparkle,Good to hear things are moving forward.You may need a bit more time to recover.You do feel very tired post op.Love Jane xx

Hello PurpleSparkle, I Agree thoroughly with Halofan. We are all here for you and others in pain, discomfort and feeling anxious. We have all been in your place in one form or the other. Garviv 

Hi,

You might be ok with two months, but don't tie yourself to a schedule. People heal at different rates and the fatigue factor counts for a lot. I felt ok after six weeks, but in retrospect it was six months before I felt on top of things. However, I did have some post op complications. Get through the op first and get used to the readjustments and then take stock.

I know financial issues come into play, but you need to put your health first.