Diagnosis

Hi Podperson,Sorry to hear you need a cystectomy.It is a big op but several of us on here have had one and can help to support you through.If possible try and get as fit as you can before the surgery.Feel free to ask any questions,we are here to help.I’m glad the Tramadol is helping.Best wishes Jane x

Hi Podperson

Sorry you are going through this too. Seems you are a few weeks ahead of me. Just wanted to say hi and that I am glad to know it's not just me that has random nightwear thoughts. I went and treated myself to one of each last week for my stay in hospital. Both are still in my overnight bag as I used neither! 

Hope you are getting your pain under control now. 

Good luck x

Hi Podperson,

Welcome to the club! Your journey sounds like mine. The only difference being that I am 2 and a half years further down the road.

You don't mention chemotherapy.  I had mine before the operation to remove the bladder, others have it afterwards.

Like you I want to know the facts rather than have any sugar coating. So I'll say it straight. This is a process we have to go through and I found the best way through it is to learn as much as I can, cooperate with the medics and to be alert to how my husband and daughter - my cancer team - are dealing with what's going on. I have always thought that relatives and friends can be very affected too and we don't notice because all the focus is on the patient.

Your medics have probably handed you leaflets about bladder cancer. If not I recommend the Macmillan booklets, I downloaded them and still refer to them from time to time. There is also a bladder cancer charity and their stuff is v good as well.

On this forum you'll see that every hospital/specialist has their own way of doing things so you get to the end result by slightly different paths. I find it interesting but it could seem alarming if someone mentions something you haven't had. From now on you'll be seeing your medical team a lot so they can explain.

Winkers is right about keeping fit before (and after) the cystectomy. We walk a lot every day and I also do pilates. The latter is expecially good for pelvic floor and abdominal strength which helps once you no longer have your bladder. 

On nighties or pyjamas - I always use the latter. The tube on your night bag, once you have one, is 4 feet maximum and your stoma (if you have one, but also the entrance to a neobladder if you have that is close to waist level so easier to manage by pushing your trouser waistband down a bit in bed.

Good luck. It can seem overwhelming but taken step by step it is all doable.

Latestart

I think it's displacement thoughts - push aside the major worries & aspects that you cannot control. When I was in hospital, I wore their gowns the whole time. Needed frequent changes for various leaks from tubes. They will get you up and out of bed straight away, so PJs or light leisure wear will be best. Make sure drawstring or light elastic waist to adjust as necessary. Sandals/slippers that are secure but easy to get on/off will also be needed.

Any time new questions occur, ask away. Best wishes.

I didn’t take in any nightwear apart from a lightweight dressing gown,the hospital gowns were fine.My abdomen was even more swollen than the dr’s expected so loose fitting clothes were a must.I did have to borrow my sisters clothes but they were comfy.I think getting dressed helps psychologically even if you feel rough physically.I did need extra pants and ran out of the big pile my sister brought in.That was because of a lot of bleeding and leakage from the vagina and anus.I had to wear disposable hospital string pants and use their pads when I ran out.I wasn’t well enough to walk to the shop and the only trolley that came round was the newspaper trolley.That was the drawback of being a distance from home and not having any visitors apart from my sister who came in once.