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Newly Diagnosed

BevBev Posts: 8
Hi on the 18/12/2018 I was diagnosed with squamous cell carcinoma of the bladder. I am absolutely beside myself with anxiety. I am awaiting a date to have a Radical Cystectomy, chemo is not an option for this Cancer, as it has proven not to respond, two days ago I had a CT Scan to see if the Cancer has spread beyond my Bladder..Everything seems to be taking so long because of Christmas, also having no professional support over the festive season..I’m just beside myself with worry..


  • SunshinedaffSunshinedaff Posts: 1,407 ✭✭✭✭✭

    Hi Bev, 
    I am so sorry to hear your news. 
    I am not familiar with the cancer you have been diagnosed with, but I do understand the anxiety and fears that come with hearing this news. It is a massive shock to be told you have cancer, even if you had an inkling of knowing. Your mind struggles to comprehend what is happening, then you feel like you are in the middle of a whirlwind. I know how terrifying it is.To be in this during the Christmas season, when services etc are held up due to holidays is even harder. Do you have any indication when you will get a call or appt to find anything else out? Is there any place you can go or anything you can do to find peace and calm in this storm? Prayer, meditation, mindfulness? I know prayer helped me, others have said mindfulness helped. What do you enjoy doing? Deliberately changing your focus from cancer to something else will help, it's not easy, but it is possible. 
    I don't know if anyone else here will have had similar cancer, but one thing I do know, we completely get how you are feeling. If you are unable to talk with family you can here, anytime. 
    I am glad you found the forum, though sad for the reason. Welcome to the community, everyone is friendly. 

    Lou x
  • BevBev Posts: 8
    Hi Lou thanks for your message, I have absolutely no idea when these appointments are going to be.. Since being diagnosed, I have hardly slept.. I manage to fall asleep then within 3/4 hrs I’m wide awake, and my head is just full of what ifs.. No time is good to be told you have Cancer, but a week before the festive season, then I’m left in limbo..
    The Cancer I have is Rare, Aggressive and Invasive.. hence my extreme anxiety..
                 Bev x
  • SunshinedaffSunshinedaff Posts: 1,407 ✭✭✭✭✭
    Hi Bev, 

    I really am so sorry, I wish there was more I could say to you to help. I was diagnosed with breast cancer which they found in my lymph nodes. Hearing that sentence was terrifying. Having CT scans etc to see if and where it had spread wasn't easy. Then there was a delay in giving me the results, I was left wondering why aren't they telling me? Fighting the fear was really hard, not letting it swallow me up and consume me was sometimes a moment by moment thing.  Just know I am thinking of you. 

    Lou x

  • RobertARobertA Posts: 1,272 ✭✭✭✭✭
    Hi Bev, so sorry to hear your news.  
    A cancer diagnosis is always a shock. I found out that I had an aggressive cancer just before Christmas two years ago and I am still here. 
    I do hope you get your answers soon.  Once you know where you stand it will be easier to cope. 
    Please keep in touch
    Rob X 
  • BevBev Posts: 8
    Hi Rob, thank you so much, that is very reassuring, it’s just so hard not knowing anything, although my Husband and family have been brilliant.. you were probably the same, you’re on an emotional roller coaster, so many ups and downs..I know once I get the answers I’ve been waiting for, and I know exactly what they intend to do, I’ll be able to cope better and won’t be such a wreck..once again thank you for taking the time to message me..xx
  • RobertARobertA Posts: 1,272 ✭✭✭✭✭
    It is my pleasure. I am delighted you have so much support from your family.
    We are all in this together and we are here for each other. 
    Rob xx
  • RobertARobertA Posts: 1,272 ✭✭✭✭✭
    Hi @bev
    I hope that you have finally had your appointments and you now have the answers you need. 

    Rob x 
  • BevBev Posts: 8
    Hi Rob, I had a CT Scan ( without the dye) as I am allergic to it. As far as they could see the Cancer so far has not spread any further, So I’ve got to have an MRI,as there were white spots on my Liver.. they think these are benign Cysts, very Common.I also have an appointment at the Royal Surrey Hospital this Thursday 24th..This-is the hospital the Surgery is to take place, hopefully I will be given a date for Surgery.. I can’t believe the delay from diagnosis to having treatment, it’s been 5weeks..if only they knew what it does to you mentally, not just you but the whole family and friends..

    Thank you so much for your concern.. I hope you are well?
    bev xx
  • RobertARobertA Posts: 1,272 ✭✭✭✭✭
    Hi  Bev @bev
    Thanks for letting me know how you are getting on.  It all sounds good so far and I am pleased to hear that you have your MRI and hospital appointments at last. 
    You are so right. This cancer thing is tough enough without all the waiting and the extra worry that goes with it, both for the patient, their families and friends. 
    Perhaps you will be able to let us know how you get on.

    How kind of you to ask about me. I am well thank you. 

    Rob x 

  • BevBev Posts: 8
    Hi Rob.
    glad to hear your well, I definitely will keep you informed on my progress..
    Bev xx
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