Hi Teenz and welcome to the forum. 

I'm sorry to hear that you've been having some problems with pain since your recent treatment and I'm glad that you've been in touch with the specialist nurse. I'm not sure if you've got the new antibiotics yet but hopefully they will kick in quickly. Don't be afraid to contact the hospital or the local Out of Hours GP service over the weekend if you need to. 

I've had a look through the forum and I can't find many members here who have had a diagnosis of TCC. I'm going to tag in [@Hdrd]‍ and [@GrannyViolet]‍ and hopefully once they recieve a notification they'll pop along to say Hello! and share their words of advice and wisdom with you. 

Keep in touch Teenz and let us know how you getting on. 

Best wishes, 
Jenn
Cancer Chat moderator

I'm still waiting on 6month check up. It's been 10 months now. But my 6 month I had preop and when I went in for cystoscopy they said I wasn't scheduled? But a week before preop told me I have infection.... I had no symptoms till I started antibiotics. Since then I got another date, with 2 different times? And on the day of cystoscopy I was told I have a bad infection and couldn't have it done. A few days before it felt like I was giving birth through my penis. I had to give another urine sample in and haven't heard anything more? By the time I get a date again what's the betting I'll have to go on antibiotics and probably can't have cystoscopy again. 
I never had to have any chemotherapy and I had stage 2 in my kidney though. 
the stress the hospital has given me throughout all this is just horrendous. I have screenshots of how many times I phoned the urologist department.... it is effecting my work life and mental status for sure. If I get the all clear I will have to change hospitals. The vagueness from everyone and receptionists are just ridiculous. Feels like I'm forever on and off antibiotics.

i hope you don't have to go through all the hurdles I have.

best of luck with everything much love x
 

Thank you. this Forum is really supportive - just what is needed

Thank you for your kind response

Have urgent CT scan today. Haematuria setled but it was like this before diagnosis of bladder cancer. Loin pain still there though. Hoping it is just an infection as I go to France on Thursday to stay with a friend a few days. It's the waiting around that is the worse - the cancer is easier to eal with in some respects

Good luck with your cystoscopy results:)

Yep couldn't agree more. Rather know the not knowing is worse....

I believe our brains are way more powerful then we are led to believe. Try and pull the positive from the darkest negatives.... too much over thinking I believe can make you ill.

i pray you get a good result. 

But I feel everything happens to us for a reason. I believe it's mental preparation for others to learn from, and then help them deal with their test, wen it comes. 

Keep busy stressing isn't healthy..... much love x

Thank you HDRD

Had CT urology scan today  - now the waiting game starts for the results. 10 to 14 days is way too long !!!

Why don't you speak to your hospital PALS Patient Advisory Liaison service. They are wonderful and help to make the hurdles a lot lower and speed up the whole process.M<acmillan online was a wonderful support network for me too

All the best xx

Yeah I went through PALS last December. That was to get an answer on if I needed chemotherapy as one doc said I did and another saying I didn't. And my kidney was sent to 3 hospitals I think. That's why they took so long. Tbh I can't be arsed with the hassle. Seen them.... they were very nice but it'll probably just create me more stress. And paranoia  :D

Hi Teenz and I echo Jenns welcome greeting.

I empathise completely with the pain and in such a sensitive and hard to deal with area.  It looks like you've had, what I'm sure is yet another of many scans, and are now in that horrible waiting game phase.  I share the same sentiments as you - I can cope with the cancer itself, it's the waiting, the uncertainty and how the mind/body deals with processing all of that is where the difficulty lies.

My pain has come from the stent and I'm relieved to say it came out 10 days ago so I'm finally feeling a little more like me after months.  I was in tears and severe despair with pain which is so big there is little room for much else.  There was lots of sleeping and hot showers.  I've got some other gynaecological stuff going on too which is adding another layer to my kidney cancer experience. 

It's such a personal and different experience for each of us as we deal with the wait and I hope that a fews away in France with your friend gives you some peace and a release from the anxiety of waiting. My partner and I have had a couple of days out to distract oursleves and I can honestly say it works.  on those days, we completely forget about all the time in hospital, the tests, the scans, the endless conversations about what to do next and just enjoy being in the present moment, together.

I'm hoping to get a second opinion on Thursday before fully confirming if I'm in for a full nephrectomy at the end of the month although it is booked in and approved.  

It's nice to know that none of us are alone in and we have support from those on here and whatever other charities you reach out to.  I think it's great.

Take care and enjoy France :) xx

I had my cystoscopy last week.... now don't have to go back for a year

can finally get back to life. I wish y'all the very best of luck..... stay positive keep smiling is my only advice to anyone.
I will report back here in a year hopefully.

as soon as Thomas cook sort my refund??? I'm going on a well earned holiday!

much love y'all and good luck with everything xxx