Still doesn’t feel real

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For years I’ve had issues with bladder including having urethroplasty. 

month or so diagnosed with an upper uti.  Couple weeks ago lost complete control of bladder. Very embarrassing. As I have to wear pads I discover some blood on pad. Was waiting to get a gp appointment re it. 

however last Monday was in work but had really bad bloating and the worst pain ever in left groin. So off to a&e blood tests and poking and prodding found nothing so off for ct scan 

scan found nothing where I had the pain however if did find an issue with right kidney. Touch wood it looks like was caught early so not spread beyond lower part of kidney.

felt numb when told and been walking around in a daze ever sense and it all doesn’t seem real. 

apparently going to be discussed this Thursday by mdt team. 

all still doesn’t feel real

  • Hello Geordiebeer,

    Sorry to hear of your experience. I felt the same feeling of disbelief when I was told and still do post-op, although it's less so now. I'm not sure whether it goes... I'm glad to hear that it looks like it was caught early and that it seems to be moving quite quickly for you.

    All the best,
    Jon

  • Hey Geordiebeer,

    I felt very similar, irronically I used the word "felt" I didn't really know how to feel or even if I was feeling anything. It's very very easy to rush ahead and what if, when in reality at this point not even the doctors know exactly what we are dealing with. Which itself is hard, the not knowing & waiting.

    My mantra became "we're not there yet". I lived in the moment and by today. It also gave me a change of perspective, in comparison to the big C, does it really matter, those little things/ hicups in life, that at the time seem the worst thing in the world!

    I used each appointment as a stepping stone and tried so hard not to think further than that, because I was worrying about things which we just didn't know, which when you think about it, is just a waste of my time and energy.

    When things did come clearer following tests etc, it got that much easier, as I had less questions and I knew what was happening next. It doesn't take away the worry of what you're going through, but it takes away the not knowing, and the mind is incredibly imaginative!

    Hang in there, be patient with yourself and if your not there yet, try not to worry and creating scenarios.

    I hope this helps

  • Probably a daft question but the 2 week pathway is that from when cancer first spotted. 

    i know that when had result of the ct scan the doctor in a&e had got clarification from oncologist 

  • There are no daft questions on here!  The 2 week pathway is from the day the referral is made to the referral appointment.  That's what I understand, anyway!  

  • Got appointment for 2 January with consultant. 

    by sounds of it it’s removal of the part of the kidney 

  • Been to hospital today. 

    tumor size of a tangerine so whole kidney needs remover.  

    surgery within a month 

  • Hello Geordiebeer,

    Thank you for sharing your update. It's good that you know what is next.

    Take care,

    Jonathan

  • My kidney op got brought forward a week  had 16 hrs notice, but jumped at the chance. Currently on day 5 following the op.

    I had mine removed via assisted robotics, so left hospital 24 hours later. Day 2&3 were quite uncomfortable but I was still out of it from the op to be hobest, forced food and drink down me to keep strong.

    Day 4 I needed a bit of help but managed to get up from bed/sofa on my own. Tried to get up every hour.

    5 days on and I can get up by myself, walk and do simple things like make a cup of tea. i under estimated how much you use ur stomach muscles! Ended up getting loads of pillows for support at night, as a result of sleeping pretty much upright (which isn't comfortable) and keeping more upright during the day,I didn't get a chest infection (coughing and sneezing kills is VERY painful!).

    Annoyingly needed a catheter, due to be removed day 7, everything was so swollen after the op I couldn't feel anything. After 5 hours of removing the one from the operation still nothing, put one in and 2.5 litres was in my bladder! Bit of getting used to but it's ok.

    They gave me daily injections to do at home (prefilled things, just get out the packet and jab), to prevent blood clots, I am terrible with needles but it is pretty easy to be honest.

    Taking regular codeine every 6 hours, set an  alarm  I forgot once and man I paid for it!

    Next step, staples (3 for each of the 5 guide holes and 13 on the main one 23 in total), are coming out day 14,

    Post day 14 they want to give my bladder a blast of chemotherapy just to be on the safe side, they sometimes do it during the op, but there were a few complications so ran out of time, plus there is a risk if it leaks from the bladder can cause more problems.

    Once that is over with 6 monthly bloods, routine CT scans for the next 5 years.

    Fingers crossed they got the bugger!!!

  • ^^ very funny and upbeat report!  I hope they got the bugger as well.  

  • Well reading others experiences helped me prepare a bit, wanted to share mine also for others Slight smile