Timelines and Information

Hi dazed and welcome 

Yes the waiting is difficult it seems to drag on particularly when you don't know whats happening 

The meeting with your consultant should give you a pathway for treatment and the best route they think you should take. In between now and then any questions or thoughts that come into your head write them down and ask at your appointment. If convenient bring someone with you. 

Things will become clearer after the meeting. I dont want confuse you now potential options the consultant will do this. 

Have a look at my time line and those of others for a perspective.  Just hit on the chair beside members names 

Best wishes 

Mark

Hi Dazed,Welcome to the group.It’s usual to wait a few weeks inbetween appointments and it’s not easy especially at the start.Things should get easier once you have seen the consultant and got all your results.Once you know about your treatment you can focus on that.Feel free to ask any questions here as there is lots of experience and we are here to help.Best wishes Jane 

Hi, you are understandably concerned. We are all keen to get on with treatment as soon as possible, but sometimes there isn't quite need for urgency that we think. (Unfortunately sometimes the hosp just doesn't have the resources to move faster.) 

With muscle invasive, there may be options for treatment, which they need to discuss with you so you can weigh up pros, cons etc and choose. You may find when you see the consultant that they can actually start sooner. At my hosp when I was waiting for RC, they seemed to have a very flexible timetable. Standard wait for 'surgery' was several weeks. I waited a week or so after final decision, then got just a week's notice.

While you are waiting, concentrate on getting as fit as possible. Try to distract yourself with some pleasant activties. Best wishes.

Thanks so much everyone.

This is the first experience of cancer within the family so we dont have a road map or any idea in terms of what to expect. 

I am trying to focus on prepping as best I can for treatment - any tips from those of you who underwent RC would be great in terms of things that helped you get ready/ recover.

Hi Dazed,If you are able to do so it will help to get as fit as possible.As my surgeon said look upon it as an army on the march getting ready for battle.If there are heavy jobs that need doing you could get those done before your surgery date.I found doing chores that I wouldn’t be able to do post op helped to take my mind off the impending operation.Is there someone who can help you for the first few days when you come out of hospital ? 
We all felt tired to start with post op.My sister came to stay and was on hand to collect shopping,meals and make sure I could get up stairs safely.I was able to wash and dress myself though.Recovery takes a few months.
Best wishes Jane 

Hi everyone,

I met with the oncologist today and we now have a plan - gemcis pre surgery (3 cycles) and then RC.

Knowing the plan has really taken a load off.

Hi dazed 

That's good you have a pathway. I had gem/cis pre operation. Keep us informed of when you are starting your chemo and there will lots of tips and information to help you through it. 

Glad to hear it's taken a load of your mind.

Best wishes 

Mark

It seems fairly normal to me. There are lots of people being diagnosed with bladder cancer these days, according to my CNS who I met by chance not long ago.

Even in 2022 it took several weeks after my first ever cystectomy (where they showed me a big black thing like a verruca in the bladder but wouldn't tell me what it was) to learning in late August what they found in the TURBT - I was quite clueless and was shocked when the consultant told me I had cancer. Then I had 4 cycles of chemo (Gem/Cis) and the op was scheduled for early January. Even then, because I had a blood clot, it was delayed for a couple of weeks while I injected myself to thin the blood and remove the clot. 

I think as patients we want everything to happen at once and sometimes there are delays that can't be avoided. It all worked out OK for me and I'm fit and well 3 years later.

Once they have sorted out what your options are and worked out what you want to do they all pile in and you get buried under appointments for this that and the other. Never a dull moment. At least that was my experience.

Latestart

My hospital told me I had to keep as fit as possible - not easy with the chemo but I did my best and I advise you to do that too - it makes a difference during and after the operation. Walking and Pilates were my go-tos. Strengthening your core will be helpful for life with a stoma or neobladder.

Re chemo - I found the actual process was fine but the drugs (including the anti-sickness ones) gave me terrible constipation, My husband and daughter kept feeding me broccoli soup which made a big difference. You won't lose all your hair but it may thin out. I did 4 cycles but even after 3 was really tired.

After that the operation wasn't so bad - a bit scary to contemplate but once it was done I just concentrated on getting better and kept walking into the future.

All the best,

Latestart

Thanks Latestart - Im due to start the first of 3 cycles next week so things have started to move which has helped - and you are right once they have a plan they do seem to motor on as quickly as they can. 

I will take a look for some broccoli soup recipes to have on standby!