I’ve just been told I have one single stalked papillary lesion on the trigone of my bladder.

I think you’ve made the right decision not to go abroad. Once you are in a better state of mind and on the mend, you’ll have plenty of opportunities for holidays in future!! We also decided to cancel our summer break in Spain in July 24 after my second TURBT as I had developed significant pain in my left flank, which turned out to be a blocked left ureter from clot and significant extravasation of urine in my left abdomen.I ended up having an emergency stenting procedure. We were so glad that we had cancelled our trip as it would’ve been very difficult to have such surgery there. On a positive note, we did go to Spain at the end of December 24 (3 months after my cystectomy)!! I hope that your bleeding will remain stable but probably it’s worth discussing with your local urology team in the next day or so. All the best. X

Hi - I’m so sorry I didn’t reply! Thank you for this.

Yes, we’ll have a holiday when we know what’s going on and there’s a low risk of anything going wrong.
Im glad you got to finally go away in December. 

Things have been pretty difficult but all is on track for my first TURBT on Friday.

There’s been some pink on paper and potentially some pin head clots (not sure) but nothing as alarming as the night before we were due to go away! 

I only have contact details for admissions at the hospital and trying to talk to them about this was a disaster. 

lI looked up the urology dept number but it’s a circle of unhelpful messages ending up with you being put through to admissions. 

I was told that I’d get a call back, which I didn’t. Then I was told by someone else (a very short tempered and exasperated woman) after another day of trying to get through that obviously I can’t speak to the urology team!

When I asked why I was told that 'they aren’t always here’ - Dr Blah blah works at other hospitals so you won’t be able to speak to him or his team. Go to A & E if you want to but you won’t get your op any sooner. Not reassuring in the slightest and now I’m really stressed about future communication with the hospital. 

I went to A&E about it all (the pains too) and that all went well. They were all such efficient and lovely people.
I had everything checked out. (Although no new imaging) Seemed ok and not in any need of emergency care which is good. 

Needless to say I’m finding sleep a bit elusive so here I am at 6.15am! I’m counting down the hours to turbt. It’s a strange feeling of being desperate to get it done but really really really wanting to run away from it all.  

Anyway, I just wanted to thank you and clearly I needed a bit of a ‘chat’ at 6am! 

Hope everyone has a good day ahead x

Hi Nikink,If they have included an e mail address on your hospital letters you could try contacting urology this way.Best wishes for your TURBT,not long to wait now.Love Jane x

1. Have you been assigned your own specialist nurse, that’s the usual procedure. Leo

Hi Nikink,

I'm glad you had some reassurance from A&E. You are right at the start of your journey and in fact, there is little to tell you until after they do the TURBT because that will give them close access to the cancer, show them how much there is and, after the tests they run on it, options for what to do next.

That's mainly why when you asked the hospital questions they had no answers to give you. So you get frustrated and so do they. Don't forget they are coping with patients at all sorts of stages of treatment. And, as you have learnt, many teams are spread thinly between various hospitals in the trust.

The people who answer the phones are unlikely to have much specialist knowledge. Admissions people are generally admin staff, usually trying to make sure there are no gaps in the operations schedules. They may never talk to doctors directly, though may have some dealings with the Cancer Nurse Specialists. I had several conversations before my bladder removal op with my admissions people when dates had to be moved, e.g. after a side effect had to be tackled first before the op could be done.

However, once you have the TURBT, and they get the answers back, (which can take several weeks) I am sure that your medical team will spend time explaining what happens next, whom to contact and what your options are. In fact at that stage I was deluged with information and became a patient with a clear pathway. Of course, it may still be hard to work out how the various hospital  teams fit together - but when you do it will become easier to understand what is going on, what is normal and what isn't. And it may help to remember that each patient's illness is different from any other's so e.g. what they did to me can be very different from the next patient, even if we have a similar diagnosis.

As you become more experienced you will become  familiar with those who can help and the hospital will generally issue you with documentation with contacts names and numbers. However, the only time I have ever been given numbers with out-of-hours access was first to the Chemotherapy ward which was manned overnight and later the Immunotherapy ward because those drugs sometime cause effects that need quick access. The fall-back being A&E. 

One of my favourite mantras is that worry does not cure (or cause) cancer. I have stuck to this from the start and it has served me very well. I hope you can make use of it too. 

Good luck for Friday.

Latestart x

Hi - no. I wasn’t given anything at all. I was just told it was cancer and I’d be hearing from the admissions team then I was asked if I had any questions…

That was it. 

obviously I’ve had nothing but questions since I walked out of the room but no one to ask…

Thank you so much Latestart.

I didn’t mean to be arsey about the admissions staff I just meant to moan about how inadequate the contact and communication feels.

They didn’t seem to understand that I have no clue how it all works and when I asked to be put through to urology as I hadn’t had a call back I just got told :

’Dr —— isn’t in the hospital he‘s at another one today…and you won’t get your op any sooner! ‘

rather than ‘we can’t do that for you at the moment. I’ll tell you how it all works.…’ 

Thank you for calmly explaining the way it is to my panicking brain! 

Im trying to distract myself with cinema visits,  cleaning, tidying etc but one of the hardest things is not telling people that this is happening.

I’ll be relieved to tell family and friends after the weekend even though I won’t know any details for weeks (dreading that wait)! 

Thank you all for being here x

Hi Jane - thank you. I didn’t email them but I should have done! I’m not really thinking straight - I’m just a bag of worries.  
Thank you - yes I’m in on Friday at 7.30am then whenever I’m scheduled in the day.
I believe there’s the opportunity for a (brief) chat with the doctors before and hopefully they see you after..?

Have a lovely evening, Nikki x

Hi Nikki. The surgeon and the anaesthetist should both come and have a chat with you before you go down. If you go down early you may be home the same day, but pack for an overnight just in case. Best wishes.

Try not to worry too much.It’s a quick procedure and with luck you may be home the same day.Drink plenty of water when you come home to keep the bladder  flushed.A lot of people on here drink lemon barley water which can help to prevent infections.Take regular painkillers if you need them.A hot water bottle can help if you do have pain.Let us know how you get on.Love Jane xx