Kidney stents

Hiya. My husband was recently diagnosed with small cell bladder cancer which is rare - small cell.cancer is more usually found in the lung. He's had various problems since having the TURBT mid Jan and has been in hospital for the last 10 days. His kidney function was not good and he's had a nephrostomy and is awaiting stents (hopefully this thurs). The oncologist wanted him to start chemo within 2 weeks but that got delayed due to urine infection (he also has a catheter) so he's had anti biotics and is booked for chemo to start on friday.

He's never been seriously ill or in hospital in his life so it's all a complete shock to us both. You're not the only one, and there's loads of support on this site.

It's hard when you don't know what the future holds. To have this sort of diagnosis when you are also caring for your husband must be so hard on you. You have to look after yourself too and that's not always easy. Is there any additional help or care you can get?

It's a roller coaster for sure. I hope you get your treatment started ASAP. 

Hi Carol27, so distressing that you've been copied into this disturbing letter, showing results which are different to what you were told. No wonder you feel stunned, alone and unsupported. Have you been introduced to an assigned cancer nurse specialist? My CNS based at my hospital, is available by phone in normal weekday working hours and always ready to discuss my concerns. I have found she has more time for me and gives clearer explanations than the consultants. One reassuring thing thing I have learned over past 5 years since BC diagnosis, is that there are a huge range of treatments which can be tailored to individual need. Another thing I know from this site is that catheters can cause great discomfort. Thinking of you having such a tough time, and sending hugs. You are not alone. Hx 

Hi DigsySE18

Thank you, like your husband I hadn’t been in hospital since the birth of my daughter almost 40 years ago so the overnight with the Turbt was a shock but the week with my kidneys has been a wake up call of things to come I fear as the stent have to be replaced in six months.

Everyone on here have been kind and so helpful when you feel as if you’re the only person experiencing it all when there are so many going through just the same thing.

Thank you and I hope all goes well with your husband’s treatment.

carol27

Thank you Herothedog for your reply, my CNS is lovely and as I will be seeing her and my oncologist on Monday I will get clarification but I think he expected me to know rather than dropping the lead balloon in my lap.

Tomorrow will be more blood tests to check the kidney function so hope for the best, I think part of me is just feeling worn down with the bladder pain which I know everyone has suffered, the discomfort of the catheter which again so many experience and the lack of mobility following the stents, I just need to focus on the positives and try to put the dark thoughts behind me, I know there are so many kind and helpful people on here who have either gone through it all all had a loved one in the same boat so full of worldly advice that I will to my best to take on board.

Thank you once again, Carol27

Hi Carol27

Mike had stents done yesterday, had some pain post op but feels OK this morning. Like you, unaware that they have to be changed every 6 months. 

He's due first session of chemo today so fingers crossed as we are already a few days beyond the "chemo to start within 2 weeks" because of the kidney/stent thing.

I still don't know why he's needed stents!

Hope your treatment goes ahead as planned. In the meantime all any of us can do is "keep on keeping on" or koko as my dear brother used to say.

Koko

Di x

Good to hear that Mike can start his treatment shortly.

I have been waiting for my biopsy results for 6 weeks, so in desperation, made a private appointment to see the surgeon  who performed  the TURBT on the NHS.

During my walk this morning, I received a call from the secretary of the consultant who is in overall charge of my case to offer me an appointment for Wednesday!

At least, things are moving forward but I’m feeling extremely apprehensive and anxious!

Kiko

Hi DigsySE18

That must but a great relief to have the chemo start I know they wanted a kidney function of 50-60 to consider adding chemo into my plan, because of the damage the chemo could do to the kidneys, something else you don’t think about when they say there is a problem.

Just keeping everything crossed for Monday when I hope for an improvement in the kidneys but also a date for radiotherapy, as it’s now over three months since my TURBT and the start of this roundabout.

carolx

Hi Kiko,

The waiting as I am sure everyone will tell you is by far the worst, even with a positive result you at least know how things stand, and there are so many kind and helpful people out there who will be there to help and advise, plus share the good news stories.

Good luck for Wednesday.

carolx

Hi Kiko

Yes the waiting is definitely the worst thing. At least things are moving forward for you now, and you're apprehensive of course but once you know what the results are you can start to tackle things head on.

Wishing you the very best for a "good" result

Di x

So Mike's had the first chemo and I'm now waiting g to hear if I can collect him. 2 weeks in hospital us a long time! 

Good luck for Monday, 3 months is a long wait, I hope you get the news you are hoping for.

Di x