Radical Cystectomy

Hi AnnieC,I think this usual.I certainly went through peaks and troughs during the recovery process.It is major surgery and it does take time to recover.The important thing is to listen to your body and don’t overdo it because you will take steps backward otherwise.Having little or no appetite is common but should improve with time.I lived off snacks at the beginning.The tiredness is common too and if you need to rest you should rest.Your energy levels will pick up over the weeks.Bowel issues are common too but usually settle.Take care Love Jane x

Hi anniec 

You must remember that you have just had major surgery around 3 weeks ago. The body at this stage doesn't know whats hit it. I was tired for around 4-5 weeks post op back in March this year. Strength will come back gradually but it is very important not to rush things and fall into a,sense that you are stronger than you really are plenty of rest is vital to let the body recover. 

 My bowels are still playing up , I just posted on the forum on Monday (wind issues) if you want to read it. It could take up to a year for the bowels to settle properly.

Iam now back to work 4 weeks ago but this was all down to getting plenty of rest in between my walks 

Don't rush things 

Best wishes 

Mark

Very true Mark.It’s easy to fall into the trap of having a good day and doing too much.I spent the first few weeks doing little but resting and walking in between the rests.Recovering alone during the pandemic was mentally tough too.Jane 

Hi Jane 

After 4 weeks my wife asked did I want to go b&m with her. I said OK because I felt ok and it would be a change of scenery for an hour or so.

We went in the car. I made it up one isle and she had to take me back out to the car, I wad shattered and became very weak in the store 

Rest is so important for recovery 

Best wishes 

Mark

It does take it out of you.On the third attempt walking  to visit my late mum in the care home I finally got there.I had to lie on her bed to recover and get my partner over to give me a lift back home.

As others have said, you are very early in the recovery process - it takes months, not weeks. You might feel OK while you aren't doing much, but as soon as you start to do a bit more, you feel the effect. Sleep as much as you need, including a daytime nap. Try to continue to increase the amount you walk, but rest in between - a few short walks are better than one long one. 

Loss of appetite is common. Try to eat little & often (at least every couple of hours), small snacks in between light meals. Anything you fancy is OK but concentrate on protein (for healing) and carbs (for energy). Also have plenty to drink. By 6 weeks post op you will probably able to do more, but do pace yourself. I resumed leisure activities then, but didn't go back to work (part time) until 3 months post op.  By 5 - 6 months post op I was doing all my usual activities but I still had end of the day fatigue until about 8 months post op. 

You may also find that your emotional state is also a bit erratic. I found it very difficult to cope with any stress and wanted plenty of peace and quiet. Hope your recovery goes well.