Hello

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Thank you for letting me join.

im early days into this.

my story so far is pink urine twice on the 23rd October not since but my doctor was good and sent me for a ultrasound and a cystoscope on the 1st November the ultrasound showed a.growth and the cystoscope confirmed to be a papillary tumour, had a CT on the 6th November, all very quick and very frightening. My anxiety is through the roof as since the 6th November I’ve heard nothing, not even from the CT, I’ve tried to get news from the hospital was told secretary was on leave and problems with the theatres, so no date called again this week and only got through to a message saying due to staff shortages they would get back to me as soon as they could. I’ve left a message and now waiting. Thank you for listening 

  • Hi Poppy and very welcome. Please try to breathe and be glad, many ladies are fobbed off for months or years and still get treated OK. Yes it's been a rush so far for you but actually having to wait a little shouldn't make a massive difference.

    The next step likely will be a TURBT = Trans Urethral Resection [cutting out] of Bladder Tumour. Maybe a chemo 'wash-out'. Then a wait for lab results on the removed tumour and a multi disciplinary team meeting {MDT] where lab people, oncologist, surgeon and all will discuss the treatment/monitoring options to offer you.  be prepared, that will take several more weeks at best as the lab work takes days to do.

    Hope that helps, 

    Denby

  • Thank you Denby 

    Im so pleased I joined, it’s so hard talking to family, hard on them too. They keep saying it will be alright. They’re way to deal with it I suppose. I’m try to stay positive but it’s hard. Thank you again 

  • Hi Poppy24,Welcome to this friendly group.You will get plenty of advice and support here.The waiting for results is what most people find the hardest part.It is all a bit scary at the start but I think you will find things easier when treatment starts.We are all here to help so do ask any questions there is usually someone here who can answer.Best wishes Jane 

  • Thank you, it is very true about the wait, it was quick at first and I sort of felt safe, now feel a bit lonely, so thank you. 

  • I know what you mean.It can feel lonely especially at the beginning.I hope you will feel less lonely joining this group.Do you have supportive family and friends ? 

  • I was a little apprehensive about joining, sad we meet under these circumstances but you all know how I feel as you’ve either been there are going through it which is in away comforting my husband and daughters are wonderful have told only one good friend, they just keep say it will be ok, but how would they now? As I’m not so sure 

    thank you again

  • That does seem to be the usual response.I found my mind was full of different scenarios at the start but I think that must be quite common.Personally I found it too much strain to keep positive all the time.Once I realised it was ok to not be ok it was easier to cope.My partner John and sister Sarah supported me.They supported each other so between us we got through it ok.My mum knew but she already had dementia by that point so I’m not sure how much she really understood.I’m glad you have a supportive husband and daughters.It’s hard for loved ones but they feel better if they can help on a practical level.Love Jane

  • Good afternoon Poppy24 and welcome. The first thing you’ll learn on this site is that waiting becomes a large part of life. It’s frustrating but also a necessary part of the procedure to identify what’s causing the problem. In the grand scheme of things November 5th is fairly recent and the results will be along shortly . That’s not to say you won’t be anxious but when you have news of what’s going on you’ll feel a whole lot better, kindest regards, John.

  • Must admit my mind is on over drive and not even had the Turbt yet or the wait that happens after.
    I’m definitely not ok and maybe I should just admit that to myself and stop thinking the absolute worst. 
    at the time of the cystoscope they were surprised I got upset, suppose im just another case. Just a comment there’s treatments. 

    lovely you have a lot of support to and they can support each other.

    I haven’t told my mum yet, she’s not well herself with COPD and very fragile. 
    putting it of till I really don’t know when. 

    thank you for your support has really helped today.

  • hello and thank you John 

    I’ve read life will now be waiting and being anxious. Going to have to find a way of dealing with that somehow. 
    I do hope I’ll feel better once I learn what I’m dealing with. 
    but without a date for this op at the moment it’s going to be tough, but realise i can’t change it so going to have to deal with it. 
    thank you for your message.