Forums


General Discussions

Cancer One Year Later

  • By Noel Forrest Moderator

    It’s been a year since being diagnosed with t1 high grade non-invasive bladder cancer. So I decided to look back at some of the blogs I was putting out to friends and family at the beginning of my journey. Below is my second blog put out and it reads:

    Since learning of my cancer in April my living conditions have changed dramatically. Prior to the cancer I was very out going, confident and able to mix well with others. I am now anxious every time I leave the house and feel more comfortable staying in doors. I’m unable to sustain the physical activities I once use to participate in and living with the pain is so depressing. The mental discomfort prior to each toilet use is draining and the actual effort of passing urine is excruciating and relentless. I feel trapped at the moment and long for the day when I can get my life back on track.

    What totally amazes me most about this blog is that I honestly couldn’t remember now a year down the road that I was actually feeling like that. Don’t get me wrong it’s been a very tough year with a lot of painful moments and frustrating times, but for some reason my main memories have been about the positive things that have happened, such as responding well to the BCG treatment I’ve been receiving. The techniques I’ve learnt for coping with my anxiety when having a cystoscopy and the moment I was told my recurrence was low grade superficial. So I wondered if others had similar experiences to me when it came to your overall thoughts about your bladder cancer journey?

    Reply Created with Sketch. reply
  • By ruliving

    “The mental discomfort prior to each toilet use is draining and the actual effort of passing urine is excruciating and relentless”

    Noel, I was diagnosed near the end of February 2018, Surgery in March.18 and to be honest, the trip to the toilet was the worst. I also had a stent for about a week, I literary had to put a rag in my mouth and my leg shook until I could actually start to urinate. This was nearly every two hours for a few days – After the stent was removed, I was sleeping a bit longer until I was actually sleeping 6 hours without having to make a trip to the toilet.

    I needed to stay busy to the point I didn’t even think of the cancer. Night time was the worst. (at times it still can be)
    Not feeling sorry for myself was also very hard at times.

    I did 6 BCG treatments and they actually we/re not that bad now that they’re done and compared to the cystoscopy.

    The cystoscopy is now my worst fear – I shake just thinking about it. The only thing that keeps me somewhat sane is that the pain is only for a few seconds to maybe a minute. I do need to learn how to better cope with the cystoscopy I will be having for a long time.

    4 months later and i’m able to and do everything I did before the cancer time. And it really does help me feel normal…again, until I lay down at night.

    Reply Created with Sketch. reply
    • By sarah.wallin Keymaster

      ruliving, Thank you for sharing so openly about your struggles after diagnosis with Noel. It can be comforting to know you aren’t the only one. The combination of physical and mental discomfort can be tough to deal with. We gathered some community feedback about the cystoscopy experience which might be helpful to you (https://bladdercancer.net/living/community-feedback-cystoscopy-experience/).

      It’s good to hear that you’re able to do everything you did before your cancer. It’s important to feel as normal as you can. Please keep us posted on how you are doing. We’re here for you.
      -Sarah (BladderCancer.net Team Member)

      Reply Created with Sketch. reply