Appointment after TURBT

Tomorrow, urology CNS will tell you about the pathology and treatment plan as decided in the MDT meeting. You can ask her/him any questions you have. Do let us know how it goes. 

Hi Danie1985 . Always best to have someone with you as they can give you so much information you can forget what you are told. Also, ask to be copied in to the notes as easier to understand in black and white. Notes may come up on your NHS app. Best wishes.

I got diagnosed with bladder adenocarcinoma. I wasnt expecting to have to decide on which surgery I wanted etc at that appointment. This whole process has been a lot an moved so fast. Don't feel like ive time to think. 

Hi Danie1985,Welcome to the group.It is difficult to think when it happens fast.We are all here to support and help you with whatever you face next.Are they suggesting bladder removal ? Best wishes Jane 

Yeah they have me pencilled in for the 7th April to have it removed. I have pre op this week, appointment with stoma nurse week after then should be surgery the week after that. It just doesnt feel real at the moment even though I knew this was a possibility. 

That’s a feeling that is common.There are a few of us here who have had the op and have stomas.I hope you have some support from family and friends.

It’s understandable that you feel stuck on a rollercoaster with things moving so fast. In an odd way it’s sometimes easier when the medics say this is the best way forward, and crack on with it. Less time to ponder over alternatives without adequate information to be able to choose confidently, less time to worry. 
You will need help at home at first, you will feel very weak and tired. Try to build up walking a little more each day (even if just a slow shuffle). Eat little and often, concentrating on protein and carbs. Recovery can feel frustratingly slow at times, but you will get there. Hope all goes well.

As Winkers says, many of us know how this feels and have managed well with the operation, stoma and bags. 

If you click on our names you can see what we have had done. 

You probably met your CNS during your appointment. Cancer Nurse Specialist know a lot and can answer your questions. Mine has been invaluable since I was at your current stage. I hope yours will be too. 

She will be especially useful on how your hospital and surgeon go about things (some places and people do things their way though we all get to the same point). While we are good on how it feels to be a patient going through this.

All the best,

Latestart

I haven't met a nurse as yet it was just the consultant. He asked me what I knew before he started talking then told me about the cancer and how rare it is. He went through the 3 different options for surgery and the risks etc for each one. Explained that its a major operation, I will prob be hospital around a week and to expect some kind of complication because they are really common and that I will need help when I go home. 

I have a 9 year old son who obviously needs me to look after him and not much support from either family or friends. Trying to figure out how its all gonna work and get my head around whats happening is really difficult. 

It's a pity you haven't met a nurse, maybe the consultant's secretary could introduce you.  The number should be on any letters you have had from him.

I think you will need help at first at home. Could the GP help with getting some? or maybe the Macmillan help line. When I was in hospital my husband, who should have been my carer, had a heart attack and subsequent bypass. So although our adult daughter and husband were able to step in as I left hospital I then helped get him mobilised, realising that open heart surgery is more exhausting than a robotic urostomy. But they did most of the cooking and general housework for a while, inbetween doing their work.

Having something to do helped take my mind off how I was feeling in fact and we supported one another as far as we could. But we did pay for help in the mornings my husband 's first week at home. That was helpful as I would not have been able to lift him if he had e.g. slipped in the shower while being so weak.

I'm sure your son can fetch and carry a bit and may probably enjoy the responsibility but there may be times when you need more help than a child can give, even if you are able to spring back fairly quickly as I did. You may also find adjusting to having a stoma takes a little time before we become more dextrous, it really isn't hard, but I took a little while to become confident with changing the bags, and everyone has leaks early on. Your stoma nurse will help you there but a child might be affected if you seem not to be on top of things.

All the best,

Latestart