Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

The Waiting Game

Herothedog
Posted by

Morning Inanna, I am wishing you luck for connecting with someone helpful today. Of course you are stressed about the next steps of your treatment and you absolutely deserve more support from your team.  Like Rily says the NHS is a sprawling organization and different departments don’t necessarily communicate with each other. Us patients often hesitate to chase them because we don’t want to be a nuisance. My GP failed to refer me to a Urologist for 3 years after I first spotted blood in urine, and I just accepted it, partly because I didn’t really want to deal with it myself   But it didn’t help! At least your tumors have been removed so the situation is less urgent but nonetheless you need more treatment as soon as possible. Fingers crossed for you, keep us posted. x

Inanna
Posted by

Hi H

Thank you so much for reassuring me I am so grateful. Still trying to find my way and your message is so welcome.  None of us want to keep badgering the hospital chasing up for treatments that we don't want.  You are right about being a nuisance but that is how it has to be

Love Inanna

I know that I don't know
Inanna
Posted by

Rang the hospital and spoke to a very nice CSN.  She told me the MDT report was not on the system, what a surprise. She said she is going to chase it up.

I think at the beginning of the treatment everything was so quick x now I know that henceforth it will be the chasing game

Love Inanna

I know that I don't know
winkers60
Posted by

Hi Inanna,I hope things will move quicker now.It is frustrating when reports are not on the system.I had to take my hospital discharge letter to the health centre so it could be scanned onto the system.They didn't believe I had cancer because they had received nothing from the hospital.The NHS does a fantastic job in so many ways but I don't feel that the communciation is always that good.Love Jane XX

Herothedog
Posted by

Hooray glad you managed to speak to a sensible person! I hope she gave you her name and number?  If you don't hear anything by this time tomorrow, I'd be tempted to phone that nurse again. I'm pretty sure a decent CNS would understand why someone in your position is extremely anxious for feedback. When I was first introduced to my CNS she said getting this diagnosis was a really scary experience and I should call anytime (within office hours) I felt I needed her help. Hope things get sorted quickly for you. x

Inanna
Posted by

Hi 

Yes I certainly got her name and number.  After reading comments here I feel I have been left to fend for myself somewhat.  The NHS is great but fails at this point most miserably, the right hand not knowing what the left hand is doing, lots of money is going to the NHS, this is something that should be a priority to be sorted out.

Love Inanna

I know that I don't know
Inanna
Posted by

Hooray, am seeing the Consultant next Friday at 9am, so relieved. Once you get hold of them, the NHS is great

I was told that my CT was good.  I have a feeling they may go the stoma or neo bladder route. When I saw my surgeon she said I was healthy enough for that op and suggested I should go for it

Hobson's choice all round but at least I will know where I am at

Love Inanna

I know that I don't know
rily
Posted by

Hi Inanna. Good to know your persistence paid off and you have got the ball rolling. A good CT scan is positive news. Try and relax for a bit now and take Friday when it comes. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Inanna
Posted by

I feel so much better and relieved Rily.  Thank you everyone for your support

Love Inanna

I know that I don't know
winkers60
Posted by

Hooray Inanna,Not too much longer to wait.I didn't realise you might be having surgery.Love Jane XX

Inanna
Posted by

Hi Jane

Not sure I am having surgery but I am beginning to think it might be the best going forward to avoid chemo etc

Love Inanna 

I know that I don't know
Denby
Posted by

Please Inanna take time to balance all the options offered, if chemo or BCG are offered they are well worth a try before you opt for massive and life changing surgery. Yes it's wonderful the surgery is there for patients who have invasive cancer, or rare conditions that mean their bladder is a source of constant misery. But chemo and BCG are so often successful in keeping things under control for years; if it should turn invasive later the option is still there. Remember into-bladder chemo does not cause the same side effects as chemo into a vein like hair loss and major nausea, that you might know about from friends or TV. Nor does it take long.

Best, Denby 

k.man
Posted by

Good to know things are starting to move again for you Inanna ,It's the waiting that gets to most of us .All the best harry xx

Inanna
Posted by

Denby, this is why I love this Forum.

I am taking your advice and will take all options on board. I agree with what you say about Chemo in fact I agree with everything you say Denby.  Whatever I do will have side effects but I am still positive and have accepted that I have cancer.  On the plus side on this journey I will meet many people and have many hospital stories to tell.  Thank you Denby

Love Inanna

I know that I don't know
Inanna
Posted by

Hi Harry

Yes the waiting is awful.  I must admit I am relieved to be seeing the Consultant next Friday.  Going to have a nice lunch with a good friend and a couple of glasses of wine, just what the doctor ordered

Love Inanna

I know that I don't know