Post TURBT scabbing

Hi JohnMcG_bcfc. Your post resonates with me and sounds very familiar. When I was first diagnosed, the not knowing and uncertainty of the future brought on some dark days. When I got my results and started on a treatment path, things got slightly easier as I knew something positive was happening.. Your results should be though by now. I might be an idea to give your consultant secretary a ring to see if you have an appointment date. In the meantime, keep drinking water to keep the debris flushed out. Best wishes.

I am later down the road than at your point. You should be told the pathology & treatment path by now. Hassle your GP, Urology nurse & Oncologist. Hassle everyone - don't sit back & allow yourself to be put to the back of the queue. Concentrate of getting the results. Ask your GP for pain medication. I am taking a mix of paracetamol & ibuprofen. As Rily mentioned, drink lots of water, I aim for 2.4 litres per day. There is an app called Waterful that I use to remind me. Help yourself, cut down or remove refined sugar (we use xylitol), zero alcohol, organic wholefoods. Try a paleo diet. Try fasting overnight - I fast from 5pm until 9am. Learn about pathway blocking. We wish we had started pathway blocking earlier.

Thanks both for the advice that’s really helpful. 

Spoke with my consultant - they have a multi-disciplinary meeting tomorrow so I should know more soon enough. Sticking to the pain meds and drinking plenty, guess it’s just time and allowing nature to take its course…

Going to take a good look at diet and pathway blocking tomorrow. Again thanks for the replies, all the best.

Hi again eveyone, sorry it's been a while...a lot going on.

So biopsy came back early January and was confirmed as stage 3 ABC.

The plan is to go down the Chemotherapy route but there have been complications, I've since had to have a Nephrostomy fitted to my left kidney due to blockage effecting its function but that is sorted now and I start Chemo (cisplatin & gemcitabine) next Wednesday for the next 4 months. It's been a long time coming considering original diagnosis was back in November.

The worst thing I'm finding is the vicious circle I seem to be stuck in. I need pain meds (morphine) as the pain is still there from the TURBT, which causes constipation, but then I take a laxative to help me go, but then this follows with a very bad case of passing clots (lots of clots) from my bladder which knocks on again to further pain in the bladder. It's worse at night, I've not slept for more than an hour since mid-november now.

I'm drinking and drinking and drinking water, usually 4-5 litres per day but as soon as the pain in the stomach arrives I know there's going to be trouble. Has anyone else here suffered symptoms similar? Will it ease once the Chemo starts?

It's all been one hell of a learning curve, I fear the worst is yet to come but reading a lot of posts here the chemo will hopefully not be as bad as I'm fearing.

Thanks, and all the best, J.

Hi again J. Sorry to hear you are still having post TURBT discomfort. My clotting stopped after about 3 weeks and I then went on to GEM/CIS for 6 weeks. Long day/short day. Thankfully, I did not have any real side effects to talk about. I was always waiting for something nasty to happen, but it never did. We know people can have different reactions and really difficult to predict how people will react. If you have any questions regarding the chemo, I may be able to help. Best wishes.

Im so sorry to hear of your troubles John. I had the same chemo as you will have - my body did not take it well & I could only have 3 cycles, I was writhing in agony from the gemcitabine which gave me superficial varicous veins on both hands & wrists. I still suffer with my left hand from 5 months ago. My chemo symptoms, were perfectly fine after the IV on a Tuesday, but then by the weekend I would be bed-ridden. I even had an ambulance call out the first time. After the weekeknd, I would get slowly better until week3, when it was time to be knocked down again with another cycle.

I know very well about being up every hour at night.

In my experience, the chemo had no effect on the blood clots in the bladder, but the chemo, combined with a paleo diet did seem to shrink the tumour a little.

Some people seem to be fine with chemo, I was not.

Hi,I’m so sorry to hear you are having so many problems.Have you been told to drink this much water ? 5 litres seems an excessive amount.Best wishes Jane