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New to this
This is difficult for me to post. I tend to be quiet about things. My difficulty with having bladder cancer is the emotions. I am a social worker and every day I see people who are worse off than me. I find it very confusing to be a social worker and be ill. I am learning that I need to extend to myself the same acceptance and compassion that I extend to others. I am learning that feeling my own sadness or fears doesn’t lessen my compassion for others. For my first chemo treatment (mitomycin) which was Wed. I didn’t schedule any appointments with clients. I went home after my treatment and had a good cry with my husband. It seemed to me, to be the first step of a very long journey. A journey I don’t want to be on. I went to work a little later that day and my co-workers are very supportive and remind always to be gentle with myself.
I know these posts tend to be medical so maybe this is not appropriate to post here. Maybe I should be on a mental health website. I don’t really know. If it is not appropriate, you can remove it from the message board.
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20 Replies
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I relate to your feelings of sadness and acceptance BIG TIME!! I was diagnosed in early December, 2005. Luckily, my urologist(a woman)gave me the option of the TURB a week after. Removed tumor and am in first stage of BC as of now, next checkup in January 2008.
The diagnosis was devastating!! We were scheduled to have Christmas Dinner with friends with our son & family arriving for a week’s visit the next week. I thought I could ignore the BC diagnosis and let my family & friends know when I found out the prognosis. YEAH, that worked—NOT!
My doctor called with the surgery results WHEN the family was here and my son overheard me crying (with relief). SO, he demanded to know what was going on—my “secret” was OUT. After I explained how lucky I was to have such a positive “first diagnosis,” it helped me face the music and go on. I’m famous for my strength & positive acceptance of everyone’s health problems, except when it’s me.
After my reassuring research of BC (this site and others), plus husband-family-close friend support—HAVE ONLY TOLD VERY CLOSE FAMILY & FRIENDS to this day! Denial, maybe, but I’m stronger that way. I also feel unworthy because my diagnosis, so far, is so minor compared to so many others! I so admire ANYONE diagnosed with cancer who can discuss, go to groups, and accept.
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Though it was not funny at the time I’m sure, it did make me smile to hear you story. Probably because I can picture myself in that situation. I can be so rational with other people’s problems.
I did see my therapist this afternoon and that always helps to keep me grounded. All these comments, shared stories and advice has really helped me a lot. I’m surprised at how much I now feel I have a community of those who understand. I am adding BC WebCafe to my list of things I’m grateful for this Thanksgiving.
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Hi there
I am a social worker as well and was diagnosed with bladder cancer 4 years ago at 40 years of age. After all of my surgeries were complete I ended up having bleeding and was brought back into emerg. It was the final straw for me and even though I had kept everything in check all along I ended up in that room in emerg crying and crying and I could not stop no matter what. The nurse was very kind and she said to me – We have on call social workers and if you would like I can ask one to speak with you. To which through my sobs I replied – I don’t need a social worker, I am a social worker. She looked at me as though I had 6 heads! It is no joke in this job to support everyone else when your own life feels like it is falling apart. -
When he called me the day after Christmas 2 years ago, and said “yes, it’s cancer”…his next words were “if I had to have any kind of cancer, I’d have this one.” That made me feel better from the start, actually. Superficial non-invasive is so treatable, and though my research and time spent on this board has shown me that I may be dealing with it the rest of my life, I consider myself LUCKY. And I hope that God sees fit to only send one type of cancer my way, in my lifetime. But I’m still getting my annual Pap, Mammogram, and will start next year on the Big 5-0 with a colon screening…
I only think about it when I pee in a cup every six months for a cytology, and once a year now for my cystoscopy..
Lauren
TaG1, Dec ’05
TaG1 12/05
3 recurrences
BCG started 9/09 -
This is a good place to post – lots of caring and knowledgeable people here.
When I begin to think too much of the cancer, I usually visit this site. Right now I feel fortunate that I am in the superficial category. But there isn’t a day that goes by that I wish I could turn the clock back and eliminate some of the risk factors for this disease – exposure to aniline as a chem major in college and working in the metallurgy field for 3 years. But I have learned to live with the fact of check ups and what positive results might mean. I even found that I was happy when I realized that the local hospital does BCG treatments on Saturdays – not as much missed time from work. I also have a loving wife who has taken care of me through everything. She reminds me how lucky I am.
I agree with the responses here that you keep your chin up and take care of yourself every day. Stay informed, read what others have to say about their similar situations, and keep posting.
Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment -
Hi :)
I consider myself to be a strong person and well grounded in my faith, but this cancer thru me for a loop. The American Cancer Society reffered me to a social worker who has much experience with oncologic patients…it really has helped me. I was especially fortunate that when I needed her but was physically unable to get to her – she would schedule to make a house call for me.
The cancer seemed to affect me spiritually, sexually (I was a newlywed of 5 weeks), physically, financially (I was suddenly unable to work for the longest time in my life), and mentally I was a wreck for a while. There wasn’t much of me it didn’t touch.
What I am adjusting to now is the “new normal”. I am getting used to the scars I see in the mirror. It takes time to stop being afraid you’ll see blood in the toilet bowl again. We have a lot of healing to do after such a big change, and it doesn’t happen over nite. I agreed much with an earlier response that a year from now we will be worrying about something else – I believe that is true and very wise. The new normal will just blend into normal :)
Anyhoo, I am here if I can be of any help, God Bless, Holly -
When I was first diagnosed with bladder cancer, it was three weeks after my devastating divorce became final. I’m not sure I went through any stages of grieving at that time regarding the cancer because I was still reeling from the divorce. I got zero support from my family, a little from a friend and acquantances.
My recurrence in 2000 hit me really hard. By then, the “novelty” had worn off for those around me. Support consisted of “Oh, now you’re experienced in this, you’ll be fine.” NOT! To help myself, I attended a support group at the local cancer support center. I went once a week for as long as I felt I needed it. I recommend cancer support groups — you can express how you feel to people who really understand.
The above two instances of cancer were low grade. Now I’m in the high grade club and am on an emotional roller coaster of unprecedented proportions for me. The support group meets on the same day and near the time of my BCG treatments, so I haven’t attended it. Instead I’m in free individual counseling at the support center for now. It may or not help; I don’t know, since I just started. But I feel good that I’m doing something to address my feelings.
I guess each person has to do whatever is most helpful for themselves. It’s important not to belittle or deny the emotions. They are real and need to be dealt with. I know in my case that I need help with that. I never went through the standard denial/anger/bargaining/depression/acceptance route of grieving with my cancer. This time around it’s more like shock-fear-depression-confusion-fear-depression. But I think we’re all stronger than we thought we were.
Hang in there.
Connie
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[quote author=kingadida link=topic=1438.msg10572#msg10572 date=1195424113]
The part about life changing forever…I think that is the core of my sadness and fear.
[/quote]I’m going to work in a few minutes, but I wanted to give you a couple of my thoughts on this. There are so many things that change our lives forever–our parents dying, a divorce, getting fired, the list goes on. Each is devastating, and each, in time, just becomes part of our history.
Many of us here (I hesitate to say most of us, but that may be true as well) are doing very well with minimal impact on our lives. Of course for a period there was apprehension and pain and fear, but that passes.
Think about what you were worrying about a year ago. You probably aren’t worrying about it now. And in a year you won’t be worrying about what you’re worrying abut at this moment.
So yes, it will impact your life. No one will deny it. But it doesn’t have to wreck your life. Look at Rosemary’s beautiful smile. Look at Wendy’s beautiful smile. Those are the faces of women who have had cancer. I think they’re lovely.
Zach
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein -
WELCOME KINGADIDA,
KEEP IN MIND THAT THIS IS A TREATABLE DISEASE.I TOO WAS ANGRY,SAD AND
FULL OF FEAR. I GOT TO A POINT WHERE I BECAME RESIGNED TO MY SITUATION.
FOR ME,THIS WAS A GOOD THING
I BEGAN TO RESEARCH…FINDING OUT ALL THAT I COULD ABOUT THIS DISEASE…
GOT MYSELF INTO A POSITIVE MODE.YOU SAID YOU ARE A POSITIVE PERSON..GOOD
STAY THAT WAY..IT HELPS…ABOVE ALL,DON’T DISPAIR.
TO MAKE A LONG STORY SHORT,I HAD 6 BCG TREATMENTS.
HAD FOLLOW UP CYSTO 9-19-07…I WAS CLEAN.
KEEP YOUR CHIN UP…YOUR GOING TO BE ALRIGHT.
GOOD LUCK,
MAX :)
Max
Age 70
Ta G2
Dx March 2007 -
It helps a lot. I tend to be a positive person, practicing the Eastern philosophy of staying present to the moment and realizing the impermanence of things, like my sadness. These practices are being greatly challenged right now, however! Perhaps, another reason it is so hard to be comfortable with the sadness I feel.
[/quote]
My husband, who had an r/c in July, found a couple of books co-written by the Dalai Lama which were of great help to him. If you’re interested, I could pm a couple of titles.
Stephany in Iowa
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Dida,
Perhaps you are having some feelings of victimization because of your cancer. I know I did. Until my Dx, I had always lived with a morbid fear of cancer, and the fear of subsequent feelings of victimization and then, when the Dr. said, “It’s Cancer.”
I thought, “Well, here it is.”A lot of us have done everything right to avoid the risks of such a cancer , and we see others do everything wrong, and we (or I should say “I”) get the cancer and they DON’T.
It’s hard to accept this, but in the end, it is what it is.
The invasive part is very difficult also. I don’t like it one bit, but what can be done about it?
All in all, I guess we must keep on living, face each day, and help any person or animal who shows up in our path asking for or needing our help.
The emotional part gets easier as we keep on living our lives and see that this cancer has not beat us yet.
Don’t know what else to say. Maybe someone else can verbalize this better than me.
Buds,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006 -
Once again thanks to all for you acceptance and understanding. It helps to know others have gone this road ahead of me are standing by while I try to make sense of it all. The part about life changing forever…I think that is the core of my sadness and fear. It is hard to believe these invasive procedures and treatments are going to become a routine part of my life. I think I think too much sometimes but I have been thinking about where I am in the stages of grieving. I am experiencing most of them except the acceptance stage of course. Do you actually get to a point of acceptance? Right now it seems I will never accept it. (Sounds a little angry doesn’t it…) When both my parents died a few months apart from each other I thought because I understood the process of grief that I should get through it more easily or more quickly than others but I was sure wrong about that. I had a very difficult time and it took a long time to accept I was without parents. This is all beginning to feel familiar. Thanks for listening.
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[quote author=kingadida link=topic=1438.msg10470#msg10470 date=1195314334]
My difficulty with having bladder cancer is the emotions. I am a social worker and every day I see people who are worse off than me. I find it very confusing to be a social worker and be ill. I am learning that I need to extend to myself the same acceptance and compassion that I extend to others. [/quote]First, let me say all feelings are appropriate. In life we are not responsible for how we feel – only how we act on those feelings.
Second, Cancer changes everything. At the moment you hear the diagnosis your whole future changes. You don’t know how, so you are filled with fear, anger, sadness. It is very emotional. But then, you start treatment, and while there are no guarantees, you start planning for your recovery, and it’s a different ballgame than the initial shock.
Third, other people’s problems don’t diminish the significance of your personal concerns to you. I have a pretty good life, in spite of cancer and other personal issues. As a pediatrician I saw lots of problems that made me appreciate my good life even more, but that made me feel like I had no right to complain. Problem is, that kept me from dealing with my own issues, and in the end it didn’t help the people who had things worse. So take good care of yourself, including your emotional well being, because your clients need the happy, healthy you to deal with their problems.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician -
I think your post is most appropriate for this forum. What you are feeling about having bladder cancer is probably similar to what a lot of people felt when they learned that bladder cancer is a lifetime chronic disease that requires them to always be vigilant. It is difficult to switch roles from being a helper to being a patient, it is uncomfortable because we are not used to it. I think you will find that being a “wounded healer” will also inform your practice and sensitize you to some of the medical issues your clients have to deal with.
We are still learning after 7 years how to live with this blasted condition. We never, ever get definitive answers at a doctors visit. We are always left with uncertainty. But as they say in the song, “pick yourself up, dust yourself off and start all over again.”
I’m a retired social worker and my husband has CIS diagnosed in 2001.
Volunteer Coordinator
ABLSC -
Well Dida,
I can speak for myself and say that I am certainly glad that you are here! :)
Thanks so much for sharing with us and I hope you will keep doing so.
Your new bud,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
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