Some of you who have been living with cancer for a number of years (in or out of treatment) have asked for a board dedicated to the discussion of long-term survivorship issues. I hope it is helpful.
Best to all,
(Your CSN staff)
I'm a lurker also Kenny...we will be here someday!
Hey allmost60, I am justturned60. We must be related. Just kidding.
I turned 60 on Sept 30th and figured I should change my username, but couldn't find a way to do it. Soooo...looks like I'll be "allmost 60" forever...ha! Thats ok with me...it will always remind me that I was "all most 60" the year I was diagnosed with cancer. June 16th 2010 will be forever etched in my brain.
Do the math on Ron 50 as in 1950-2010=********60*********:):):)Ron
This is just what I needed today. This will be a great place the pump up the old attitude for me. Thank you!!!
Just discovered this board - and am elated!
I see many familiar folks on this thread. For those who don't know me yet:
Am a Breast Cancer Survivor. Diagnosed July 2003. Surgery (lumpectomy), chemotherapy (horrific) & radiation finished March 2007. Joined the ACS BC Board about a year & a half ago - to mark my five year anniversary for completion of invasive treatment. Wanting to "give back" in another way, hoping to instill hope in others, provide support & encouragement.
Still taking oral anti-BC meds (Arimidex). Yes, openly admitting here - I have long-term survivorship "issues"... Wow! That felt good! :-)
Kind regards, Susan
because I was
Born on Christmas Day
(the title of my Profile Page)
If I have posted on this board before I blame it on my chemobrain so there. lol. Nah I don't think I have posted here before, usually busy on the Emotional Issues board and long term late effects, a little here and a little there in posts.
Yup I agree that we have our own issues as long term survivors but mostly I think cancer survivors of even just the diagnosis have more in common than not. That diagnosis isn't for the faint of heart. Long term survivors have late effects to deal with which is a whole other thing but there are side effects to issues even survivors of a year or two can experience.
Looking forward to reading the posts in this category of CSN>
I will 'lurk' for now and be back in 4 years!
I am a 33 year survivor of HD stage 3a and I am 41 years old now.Is there a senior long term survivors board?HA!HA!I am new here and enjoy reading your boards.Hope to make some new friends.
That's one phrase that means nothing but positive things to cancer suvivors 'you make me feel old'. Don't we all just pray that we can say one day 'we are old'. Beat that nasty cancer. Old is good for us.
All the best,
WOW! 33 years!!!! that is fantastic!!!
I've just started posting about my childhood battle with Medulloblastoma. I'm now forty and have been cancer free. Hope everyone is doing well. I have had some long term issues to deal with from the radiation treatments I received. Hope to talk about it more.
Hi Greta and everyone who posts to this board!
I'm Lily and I post on the Gallbladder Cancer Discussion Threads. I was feeling a little down and decided to look for a thread where I could relate to others that have issues after treatment has been completed. Reading all of your posts were quite helpful. I do have some physical and mental difficulties that I don't like to whine about. My doctors have told me that I have to find the new me and she seems to be hiding from me. I spend most of my time being a cheerleader for other gbc patients and their caregivers but as Greta stated earlier you have to have a sense of self and I feel that I have lost that. When I can count the long term survivors of gbc on one half of my hand it is time to talk to others that have survived cancer no matter what the classification is.
I was diagnosed in 2005 with Gallbladder Cancer Stage IV at the age of 46. This cancer has a 1% survival rate. It was a two year long journey for me and I didn't participate in discussions during that time. My entire life changed in that second of being told of my diagnosis.
I know that I am very blessed to be here every day, but sometimes I feel that I am existing and not really living. I need to be able to get to that place that eludes me. Hope and Faith has carried me through but I feel that I need something else in my life right now. When I lose someone from the board it hurts my heart for them. Takes me a couple of days to re-group and be helpful again.
Thanks for listening.
My DH had his gallbladder out about 4 years ago. The surgeon said it was the gallbladder from hell. But it wasn't cancerous. Sorry yours was.
Some days I just manage to exist too but then I push myself to do something fun. Watch a comedy or just laugh at nothing. It makes me feel better. I get some strange looks at first when I laugh at nothing but they have to join in before too long. I think I may have to break out in laughter just thinking about it. lol.
Thanks for responding. It is nice to hear that others feel the same way that I do sometimes.
I too try and push to do something fun but then I feel guilty about being selfish when others are experiencing such pain. I guess that is part of survivors remorse.
I do laugh and it makes me feel better too.
There are very few arenas where you can discuss this experience and really be heard. I am greatful for this sort of board because often I can see where I have been, and where I am going, through the eyes of all of you. I take with me many things ranging from wisdom, strength, hope, fear,you name it. I been the club for some 38 years now, surviving an acute bout of a "poorly undifferentiated metastic process" that ravaged my lungs and lymph nodes. I was not supposed to make six months. I was not supposed to have kids either. At this point the "red devil" and its long term after effects are starting to rear up. I have accecpted my survivorship has been fate to some degree. I am not a particulerly smart, good looking, talented, strong,or affluent person. Nor do I think that in this life I will make history somehow. But for some reason I have made it thus far and I am doing as best I can with it and the time I have left. Through it all, now matter how you feel about your situation, what else can you do? Lily, I for one have been where you are walking now as many here. Be gentle with yourself. Much has happened to you so fast and furious. You may have to mourn the old you before the new one can fully emerge. Hope this helps, All the best to you.
OOps, I mean a 34 year survivor!
My throat surgery was in 1994. Surgeons did a wonderful job! The follow-on radiation was long term and very intense. In 2004 started having perpheral pain in face neck and shoulder. Really struggled- nearly sucidal - until had a Medtronic neurostimulator implant. Life saver! Using Lyrica as a pain supplement, also very effective. Six months ago I lost nerve response in my throat - swallowing muscles work but my throat doesn't know food is coming -> straight to the lungs. So now I have a PEG tube in my stomach. Feeding Jevity 1.5 five times per day. Weight is stable, energy level is good - execising 1 hr. 2.5 miles most every day. Trying to stay busy with volunteer work and my writing. I've got a new fiction story out that sneaks in stuff about pain management and PEG tube inside a story about a musician. Hoping I get some readers. I'd give away the e-book: 'It's Me again, Lord" to anyone in this group who wants to read it! It would help me to see if fellow long-termers find my attempts at showing that us survivors still lead pretty active lives!
Hi all I am long term survivor of Neuroblastoma. I was diagnosed when I was 13 months old. I am 32 years of age now and will celebrate my 33rd Feb 5th. I am here to support survivors of all ages. All the best to everyone here.
to be positive. iam still here 32 years later. a real survivor.
this wil be helping
begin youre day with a dance... begin youre day with a smile.. (its a dutch song and gives you a smile to begin)