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holding it together
Posted by sydelle on April 1, 2010 at 12:37 amMy husband was diagnosed and treated with RC, in March 2008, thereafter, Feb 2009 needed surgery to remove urethers. Since then, under careful surveillance with Dr. Bochner at Sloan. he has had multiple hospitalizations for infections, (UTI’s)He has urostomy/stoma category. I was quite strong and optimistic the first two years; lately I have become terrified as the months go by, as I think he will HIT that mark of time for reoccur :( :( ence of cancer, because I have NEVER heard of any 5 year or plus survivor, on this site, or other sites.How do caretakers out there handle their terror? I almost feel like I am in a war zone preparing for the next attack. HELP!
Christine Springfield replied 14 years, 8 months ago 6 Members · 5 Replies -
5 Replies
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Sydelle,
I am coming up on the 4 year survivor mark myself and my hubby (Scott), who was diagnosed with lung cancer a year after me is coming up on his 3 year survivorship, too. I remember that for about the first 2 years, I was incredibly stressed out about check-ups and recurrence. Pretty much a hangnail would get me concerned and into the doctor’s office I would go. I know he had to be rolling his eyes every time, but he treated me with kindness and compassion. I think I really just needed to extra assurance that I was going to be OK. It took about 6 months to really wear off and life has gotten back to normal.
For Scott, he just had his follow up yesterday, and I can actually feel the stress decreasing with each “clear” pronouncement. It really does get better with time, and eventually you will find that you are not holding your breath quite so long or dreaming of every worst-case scenario when he sees a doctor.
There are indeed LOTS of 5+ year survivors out there, it’s just that once you get through this whole messy process of dealing with cancer and you are back to living a “regular” life day-to-day (not thinking of cancer every waking moment), you don’t really think about it very often, so visiting boards like this becomes lower priority, or even undesirable.
The first few years post cancer can be incredibly stressful. It seems like you are “on watch” every minute. I found that a mild anti-depressant helped for a few months. It worked for me, but everyone has their own opinions on them, so it’s just a thought.
Living each day to the fullest is a great concept, but when you are mired in the worries, that can be a tough order. Do the best you can. There IS a light at the end of the tunnel and this is an excellent place to connect with others who can relate.
Best wishes!
Christine
T3/G3 – Squamous Cell/Transitional Cell Carcinomas
RC w/Studer Pouch 4/25/07Sydelle,
Well, I can tell you that I plan to be 5 year survivor and then some. So far, my RC was October 2008 and I have had no recurrence. So, from RC, I’m working on 2 years.
From my initial diagnosis (Oct 2006), I’m a 4 year survivor.
If I could hurry up and be a 5 year survivor, I would but I really don’t want to hurry aging any more than I did prior to bladder cancer.
I have communicated with 10 and more year survivors and there are 5 year plus survivors on this site.
Keep in mind though that after so many years, many people drop off sites like these to put it behind them.
Recurrence after RC is not a good thing and should be watched very carefully. If your husband is currently not going to a top bladder cancer center, then he probably should and that may help with some of the anxiety.
We can all be hit by a truck or struck by a meteor at any second so please try not to lose quality time to worry and anxiety.
All the best to you and your husband.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.This concern has been my secret fear since the beginning. I have never expressed it to myself or my wife until a few weeks ago (I was going in for my 18 month checkup..with CT scan, Xrays and blood and urine tests). I silently wrapped myself in fear that “something” was going to change. Thankfully, I was still cancer free.
On the way home, I finally talked about it with my caregiver and best friend, My wife. She exploded with emotion, saying how she was so worried about “how much time” we could expect. We had been secretly thinking the same thing and worrying about it alone.
This is how we came to a livable situation.
A perfectly healthy person will step in front of a car in the next hour. End of story. We may have 5 years, 10 years, or even 40 years (I’m going for 40+ years) But, They WILL BE DAMN GOOD YEARS!!!
I have tried to find out how long I have to live and statisiticly, I have a great chance to live a normal lifetime. But, people beat the odds All The Time. I will beat the odds. If you look at the chances of survival for this disease, the odds are pretty good.
My wife and I have chosen to be positive without being foolish. We know the chances of cancer lurking somewhere are real. But we also know that life is ALWAYS a Chance. We will not put our head in the sand, but we will live each day to the fullest.I guess it is just like it has always been. We have to find a balance. Think short term; but prepare for the long term. Anticipate the future; but be realistic about today.
“Life is what happens when you are making other plans”
George :unsure: :unsure: :unsure:
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]GuestApril 1, 2010 at 4:09 amHey Sydelle……I’M 8 YRS OUT…….
most of us don’t stick around after we get the information and support we need and thats ok……..
Here’s a follow up of over 1000 patients…average age 66 to 93….so taking that into account..you’re probably not going to get 10 yrs at 93….or maybe you will??? :dry:
http://jco.ascopubs.org/cgi/content/abstract/19/3/666
Hang in there sweetie…stay positive…don’t let the dummies take urine samples from the bag anymore…..doh……You are in excellent hands with the doc you have now who is a specialist in infections. He’ll figure it out.
BREATHE!!!
xxoo PatSydelle,
I suspect you will get lots of feedback on this concern as I think almost all cancer survivors at times hold their breath when thinking of check ups…the caregivers perhaps even more so. We just want to remember some things are just out of our control and for us to worry and fret about what might happen next week, next month or next year only robs us of pleasure we might enjoy today.
I will be at my three year mark this July. I guess I am unusual in that I have never worried about any of my check ups. A couple of months after my initial diagnosis, I just had a good talk with God, and gave Him all my concerns. I told Him I would try to accept with grace whatever the outcome would be. I just wanted Him to give me the strength to see me through whatever was ahead of me. Of course I wanted to live but I had to accept the idea that my life might be much shorter than I ever expected. I have found so much joy in trying to help others who are fighting cancer and their caregivers that I don’t allow myself time to think of how much time I might have left. I guess I just want to know that in the time I have remaining, I can make a positive difference.
Personally, I think so much depends on having a positive attitude and believe those who do strive to be positive outlive those who allow themselves to think negative. I have read and heard about cancer survivors who have lived years beyond what the medical experts have predicted…perhaps your dear husband will be one of those. I hope you are able to soon get past this concern and get back to enjoying the “present”. Hugs,
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightSign In to reply.