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Homepage – Forum Forums Newly Diagnosed With Bladder Cancer Update #2 – Bad News – Need Support

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #8199
    Sophie’s Mom
    Participant

    I have been admitted to hospital due to a very high temperature and nausea. CT scan performed. It was unclear so a PET scan will be undertaken Monday. My surgeon is wonderful. I trust him implicitly. I asked him what his gut feeling was. He said he thinks the cancer has returned as I am not responding to the IV antibiotics he has been giving to me. If it is the BC then I will not have very long to live as the chemo has not slowed down the growth of this very large tumor located in my right lower pelvis. I know he could very easily be wrong so I putting on my happy face for my family.

    BUT in private I am so scared. So very scared. My faith helps but I don’t want to leave this world yet!

    Thoughts? I am unable to put it aside and just wait for Monday. Too frightened and upset.

    Melinda

    #18696
    Babs
    Participant

    Dear Melinda
    I tried to reply earlier but think I inadvertently deleted my message. So I’ll try again.
    I was so sorry to hear about your setback. The uncertainty is so stressful. I am glad you reached out to our community as those fears need to be expressed somewhere. Giving a voice to your feelings gives you a measure of control. It’s a breakthrough, not a breakdown.
    I can understand your desire to protect your family, but they may also be terrified & trying to protect you. Putting on a happy face takes a lot of energy for all concerned. Just something to consider. You know what is best for you & your loved ones.
    If the worry becomes unbearable, the hospital probably has an on-call chaplain who could come & be with you, even in the middle of the night. They are non-denominational & their job is to offer support during critical times.
    Please know you are in my thoughts & prayers. My hope is that you feel supported from sources seen & unseen.
    Bette

    #18697
    G and M
    Participant

    Melinda

    It’s OK to be scared, but don’t let it overtake you. I’m in a similar situation, scared, later stage BC, dealing with nausea, chemo and all that goes a long with that. You have your faith and the love of your family. No one knows when they will leave this earth, you could be around for a very long time yet!!! I sure hope to be.

    I find it helpful talking things over with my spouse, close family members and friends. Hope you get some good results from your PET Scan. Stay positive!

    My thoughts and prayers are also with you.

    Glenn

    #18698
    marysue
    Participant

    I’m so sorry for your tough news and that you feel unsupported from us. I won’t make excuse but please try to understand that we are patients ourselves and in a lot of cases people just don’t know how to respond. Now that being said…You get from me the biggest virtual hug ((((((((HHHHHHHHHUUUUUUUUGGGGGG)))))))). I know that the hug doesn’t change the diagnosis and I can’t wave a magic wand and make it all go away but trust me if I could I would. What I can say is that you’re in my thoughts and prayers as you go through this. Yes, you have the right to be angry, scared, confused, you name it. That is a normal reaction. Rant all you want. I also suggest that you ask your doc or the clinic about psychosocial support services to help you deal with your feelings and get the services from the pros that can assist you with any difficult decisions you must make. But please keep in touch and feel free to have family members post as well. Another (((((((HHHHHHHUUUUGGGGGG))))))

    #18699
    elsie
    Participant

    Melinda,
    I am sorry you have to walk this road…..just know that you are in my heart and in my prayers
    I hope the fever has responded to the antibiotic and that you a feeling much better.
    Sending you a huge hug….
    Know that you are not alone, even though we might not respond immediately, the folk at bcc think of and pray for all of us all the time.
    (((((((HUG)))))))))
    Lynn

    #18705
    shelties
    Participant

    Hi Melinda, I’m so sorry to hear your latest news. I can’t even imagine how you feel right now. I tried to respond to your post long before now, but my password needed to be changed and I just couldn’t get straightened out with the one they sent me. In any case, I’m on here now and I wanted to let you know that I did read your post and actually, I can relate. A similar thing happened to me on this site when I first posted on here. It seemed like no one bothered with new members, or at least that was the message I perceived at the time. I was reading some of the posts and felt this forum was a bit of a clique. However, I continued to post once in awhile and eventually, I did get responses. Perhaps the reason for not getting a response at times is that this forum doesn’t have moderators where new posters are contacted if they haven’t received a response within a reasonable time period. To be fair, people on here can’t monitor the site continuously. I hope you won’t give up based on your first impression.

    I have bladder cancer as well and was told the direction I’m heading into will lead to having my bladder taken out. I’m reluctant to go down that road because I have also had two major surgeries for lung cancer, surgery for colon cancer, and also had a large tumor taken off of my ureter tube. (I think that’s what its’ called), the tube going from the bladder to the kidney. Before I consent to bladder removal, I need more info on the state of my lung and colon cancers. I won’t have that major surgery if I’m likely to experience a recurrence of the other cancers. It certainly wasn’t news I wanted to hear for sure. When I read your post, my heart went out to you. Its’ a scary thing to hear for sure and it takes time to come to terms with this news. I hope as you get more information, perhaps the outlook won’t seem quite as sinister. Just know that there are people on here who do care and can relate to what you are going through right now. Take care of yourself and share your fears with a trusted family member or friend. It will lessen your burden a little.

    Come back on here and let us know how things turn out for you once you see your doctor on Monday. I, for one will be looking for your update.

    Lorraine

    #18707
    Sophie’s Mom
    Participant

    Thank you all for taking the time to respond to me. I am in a pretty desperate state right now. I have opened up to my immediate family. I’ve also started seeing a psychiatrist. He prescribed Ativan until I get the results of the PET and then he will help me come up with a plan. All of these things have helped but I still so very scared. I feel completely vulnerable and I cry very often. My only hope is that the good doctor is wrong and I am praying towards that end. Thanks again and please feel free to send a short note. It really is helpful.

    Melind

    #18708
    Babs
    Participant

    HI Melinda
    Thanks so much for updating us. My heart goes out to you. Your fears are justified and your reactions are a natural reaction to an abnormal situation. You have shown great courage in sharing with your immediate family & asking for help.
    I am not very computer savvy but am going to try to figure out how to send a private message. I’d like to give you my phone number. I am retired so don’t mind late night or middle of the night calls. It sometimes helps to vent with someone outside the situation.
    You continue to be in my thoughts & prayers.
    Bette

    #18709
    Babs
    Participant

    HI Melinda
    Just wanted to let you know I’m thinking of you as you await your scan today.
    Bette

    #18710
    Greg
    Participant

    Sophie’s Mom:
    I can appreciate that emotions are all over the place at the moment. Not news a person ever wants to hear and I hope it is not the news confirmed today. But making the most of every day is key. I know it sounds trite and you’re probably wondering how I could possible understand anything of what you are going through. Well, I probably cannot understand. But I have incurable BC and am having what they call palliative care – basically care to keep me as comfortable with a decent quality of life as they can for as long as they can. I am 59 and would love to live for a good many years to come. The docs do not suppose that is likely. History shows it is not at all likely. But I had a really good day today – manageable pain, a day at work, great weather, contact with good friends. My eldest son is just married and I would love to live long enough to see grand-children – not likely. My younger son was a rookie ref in the OHL this year – quite an accomplishment for a young guy and I’d love to be around to see him in the NHL some day – not likely. My wife and I would love to travel with each other – not likely.

    Most folks who get bladder cancer will not face such a dire future as I have. And frankly many do not know what to say. But the fact that people are viewing your post shows interest and care – and prayer. Be encouraged by that. Try to enjoy today. Let’s face it – everyone on this site, without exception, only has today. None of us is guaranteed tomorrow. But as human beings we thrive on worrying about the tomorrows of our lives instead of focusing on the todays. I have been forced to focus on today. Maybe you have too. Who can you encourage today? Who can you reach out to today? Who can you share a smile, a tear, a conversation with today? Whose life can you enrich today? I know, I know, it sounds too simple. But it’s not!

    #18711
    shelties
    Participant

    Hi Greg, I just read your post in reply to Melinda and I must say, you’ve got it right. If all of us can come to terms with this cancer thing the way you have, perhaps we wouldn’t find it so traumatizing. I believe we all have a yellow streak down our back when it comes to death, especially our own, but it takes a lot of work to get to “acceptance” such as you have. To be sure, what immediately comes to mind are all the things we likely won’t be around to experience, such as the ones you identified. Ours may be different than yours but still important to us as individuals and I think we grieve for the loss of some of those opportunities, just as I’m sure you do. I’ve read many of your other posts on here Greg, and your sense of humor is amazing for someone who has experienced so many of the challenges that you have. You really are an inspiration to everyone on this forum and I marvel at the ways you express yourself sometimes. Having said that, I’m sure you have your times when your emotions get the best of you as well, and I wonder if you have something or someone that you turn to during those times. Perhaps you wouldn’t mind sharing some of those secrets.

    I’ve come to terms with being dead from this cancer, but its’ the journey to get there that has me worried. I have seen so many family members and friends suffer through terminal cancer that its the process of getting through that part of it, that I would like to see changed. I don’t know how that can happen at this point in time anyway. I know there have been great strides made in pain management that has been a big help for cancer patients, which is good, so hopefully research in that part of dealing with cancer will continue to be improved.

    On a different note though, riding the tide during the better times certainly gives strength to get us through the not so good times. Having the support of the loved ones in our lives goes a long way in making the journey a little easier. I have always been a very independent person and it was me who was the go to person in a crisis; now the tables have turned and I find it really hard that I have to depend on others during the challenging times that I must endure. For me, that is so hard to do. During the periods when I feel relatively well, I try and cram in all the things that I enjoy doing and that does help. It also does a lot for my peace of mind. It took a while to get my head around that way of thinking though, and I really have to work at it.

    When I read Melinda’s post about how scared she is, my heart went out to her. When that news is dropped on you like that, it is really hard to come to terms with it when you don’t have all of the information, or a plan to deal with it. Sometimes the not knowing is worse than the knowing; its’ really hard to cope with something when you don’t have all the facts. I’m looking forward to hearing an update from her on the results of her PET scan and what the plan is to address the Issues when they have more information.

    Thanks again Greg for your input on this forum. You are really an inspiration to everyone on here. Your humour helps too! Take of yourself.

    Lorraine

    #18718
    Sophie’s Mom
    Participant

    Hello and thank you to all who have either replied to my post or prayed for me. After many delays the biopsy was done today so now I only wait for the results. I am still scared but also encouraged and hopeful. The more posts I read and the more time I spend in prayer the better life seems.

    Also I received a wonderful surprise from BCC – a handmade quilt. Now every time I look at this beautiful quilt I am filled with hope. What a thoughtful gift. Thank you.

    Once I receive the results from the biopsy I will let you know.

    Melinda.

    #18719
    shelties
    Participant

    Hi Melinda, thanks for the update and good that you had your biopsy. I hope you don’t have to wait too long for the results. You sound more hopeful and less stressed so that was good to read. Your quilt sounds wonderful and I’m sure it will be a great comfort for you as you wait for the next step.

    I look forward to hearing the results of your biopsy once you receive them.

    Take care and hugs to go with that beautiful quilt.
    Lorraine

    #18723
    elsie
    Participant

    Hi Melinda
    I hope today is better than yesterday. .. And tomorrow is even better
    Positive thoughts for the biopsy results!
    Prayers and hugs coming your way..stay strong, you know you can!
    Lynn

    #18727
    Babs
    Participant

    Hi Melinda
    How frustrating your test was delayed. I have my fingers crossed as you wait for results.
    May your quilt be a symbol of the love & support that surrounds you. You continue to be in my thoughts & prayers.
    Bette

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