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Welcome long-term survivors!

greta's picture
greta
Posts: 242
Joined: Jun 2000

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,
Greta
(Your CSN staff)

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

I'm a lurker also Kenny...we will be here someday!
Sue

Marcia527's picture
Marcia527
Posts: 2735
Joined: Jul 2006

Hey allmost60, I am justturned60. We must be related. Just kidding.

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi,
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.
Love...Sue (FNHL-G2-Stg3-TypeA-Dx6/10)

ron50's picture
ron50
Posts: 1319
Joined: Nov 2001

Do the math on Ron 50 as in 1950-2010=********60*********:):):)Ron

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Greta,
This is just what I needed today. This will be a great place the pump up the old attitude for me. Thank you!!!

Kerry

Christmas Girl's picture
Christmas Girl
Posts: 3661
Joined: Apr 2009

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
Christmas Girl
because I was
Born on Christmas Day
(the title of my Profile Page)

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

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>

Blessings, Bluerose

sbmly53
Posts: 1484
Joined: Jan 2010

I will 'lurk' for now and be back in 4 years!

Sue

Bob76
Posts: 5
Joined: Dec 2010

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.

Bob

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

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,
Bluerose

KathiM's picture
KathiM
Posts: 7948
Joined: Aug 2005

WOW! 33 years!!!! that is fantastic!!!

Hugs, Kathi

dubc
Posts: 8
Joined: Apr 2008

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.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

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.
Take Care
Lily

Marcia527's picture
Marcia527
Posts: 2735
Joined: Jul 2006

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.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

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.

Thanks again!
Lily

Ern
Posts: 9
Joined: Jan 2009

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.

Ern
Posts: 9
Joined: Jan 2009

OOps, I mean a 34 year survivor!

jteeter45's picture
jteeter45
Posts: 3
Joined: Nov 2012

Hi dubc,
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!
Regards,
Jack

Aquagirl18
Posts: 45
Joined: Apr 2003

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.

Kimmies2's picture
Kimmies2
Posts: 2
Joined: Mar 2013

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)

 

Gray Hair Gypsy
Posts: 5
Joined: May 2013

I was diagnosed with Ovarian cacner in 2001 and am very open when speaking about it. I figure if it helps, in some small, some one else who may be facing  a serious illness great. What bugs me is when I tell some one how long ago it was they say, "I'm sorry " instead of, "Thats great!" I know it is just an auto responce, but hey, they have nothing to be sorry about, they should be happy for me. And I am certainly not sorry about being around 11 1/2 years after my original diagnosis! M

 

 

Gray Hair Gypsy
Posts: 5
Joined: May 2013

Sometimes it hard for anyone who has not had cancer to understand what it took get you through it. It is  a long scary road you can only travel alone. When I told my co-workers my Dr. said I had 18 month to 2 years to live they asked how I dealt with that, what would I do. I asked them what they would do if  someone would tell them they could  have a fatel car accident on the freeway with in the next 18 months. To a one they replied that they wouldn't worry about it, but just get up every day and deal with what came their way. And I said, so thats what I intended on doing also. 

And even though I am still here after 11 1/2 years I still secretly worry and can't sleep good when I go for a CA125 test or a mamag0ram. and don't breath a sigh until I get the test results back. And I know considering all the cancer in our family it may rear its ugly self again. But until then I am going to enjoy every cold, rainy, gray day sent my way. And not feel guilty about any of them. We did not come into this world with any guarrantee and no set exspiration date. If we do have one only the good lord knows it and he isn't telling. So I think we need to enjoy the time we have on earth to the best of our ability. And that will be different for reach of us.and thats OK. M

 

 

ael111
Posts: 4
Joined: Sep 2013

hi there,gray hair gypsy,i am not a cancer survivor,but i got the bad news yesterday that my mother has just been diagnosed with uterine papillary serous carcinoma.when the dr. told us that i felt sick at my stomach,& my knees went weak.so as soon as i could i started looking  into it and i found this web site.to tell you the truth i am very worried about my mom,but when i read about positive people like you it conforts me,& i guess what i am trying to say is thank you.thank you for being so positive and know that your post do help.

dubc
Posts: 8
Joined: Apr 2008

Sorry for the late reply, I don't get on the site as much as I'd like.  Good to hear you're keeping it real.  Sorry to hear about some of the issues you've had to face.  I hit my 40 year survivor mark back in November!!  My newest adventure is a CSF spinal fluid leak.  (you can look it up on the internet).  Something I might be able to blame on my Radiation therapy back in 1973.  Minor Surgery should fix the problem I hope.  I really can't complain.  Considering what I went through as a child, I have remained healthy.  I owe  all the doctors that saved my life a debt of gratitude that I can never repay.  Take care all and keep up the good fight. 

Mik Scarlet's picture
Mik Scarlet
Posts: 2
Joined: Nov 2013

Hi All,

I've now entering my 47th year of surviving the Big C. I was diagnosed at birth with Neuroblastoma, so every one of my days has ben one as a survivor. I'm now 48, so still going strong. Every now and then a side effect of my treatment hits home, but mostly it's plain sailing.

So a big Hi to all the other long termers out there.

Mik

Catiebugbee
Posts: 14
Joined: Aug 2010

Had neuroblastoma when I was 4-years-old, mid 1990s. Met or connected with a lot of kids then and over the years who had NB, lost my last childhood NB friend a couple of years ago after she relapsed after many years of being "in the clear" so to speak. The biggest late effect I struggle with today is not my scoliosis or pain from scar tissue lesions but anxiety - I live in a constant state of anxiety, usually mild but often peaks. My remaining adrenal gland is overactive and apparently contributes a lot to the ongoing state of anxiety I have learned to live in since I was around 8-years-old. But it's really been getting me down lately as it is inhibiting my ability to get through what will hopefully be my final year of training to become a health professional. Anyone else out there who had NB or another cancer also have experience with this? I feel so alone, but surely I can't be the only one with ongoing nervousness because of past experiences with cancer?

SteffR
Posts: 3
Joined: Aug 2014

Hi Catiebugbee, I am new here too, so can only be of so much help, but just wanted to say that I have anxiety too, we can only assume that is natural considering what we've been through. Especially if you grew up with this disease, you were so young and that must have been terrifying for you. I could barely cope and I'm a grown woman! Have you ever tried speaking to a therapist? I have shied away from it, thinking I should just put on a brave face and be grateful I beat the cancer, but tbh I don't know that it's the best coping mechanism. Where I live there are no supprt groups for my kind of cancer, which I was initially interested in, but maybe there is one near you that could help. Congrats on entering the health profession, I am sure your personal experience will help you a lot in dealing with so many things, best of luck with everything :)

SteffR
Posts: 3
Joined: Aug 2014

HI, I am new to these boards and also interested in other long term survivor's experiences. I am very lucky to be 10 years out from Non Hodgkins Lymphoma, truly grateful. But like so many I have had many various and ongoing issues as a (possible) result of the cancer. I stopped seeing my onc. 3 yrs ago (my cancer was aggressive,rare, mediastinal so he kept me on longer than usual). I am American but have lived in Britain for 13 yrs and had my treatment here. At the time of my diagnosis I had a lot of people telling me to come home if I wanted the best treatment, all that sort of thing, but I ended up pretty happy with my treatment here overall and had the same treatment as far as I can tell that I would have had in the States (CHOP+Rituximab, monoclonal antibodies and radiation. And stem cell harvest though that wasn't so much a treatment as torture in the name of future insurance!).

Since finishing treatment I have had a sluggish thyroid, a blood clot in my leg, and my gallbladder out. Seeing as I was an otherwise healthy 28 yr old when diagnosed it's hard not to wonder if these things are just coincidences. I have some residual nerve pain/my hands seize up, and of course anxiety (though lessening now) from the whole thing. I had a medistinectomy (chest cut open) pre-diagnosis as my cancer was a real b-word to diagnose because of its location and took three biopsies, which means I have pretty ridiculous scars on my chest that I have tried to learn to love. If I overexercise/stretch my chest bones sort of click slightly out of place - a weird sensation that just sort of reminds me of my history in case I forget! I gained about 30lbs during chemo (steroids), which I took most of off but in the past year have re-gained which is one of those things as a cancer survivor no one thinks you should stress about but you do. I am thinking of going off my thyroid meds as it is a v.low dose and tbh I have only gained weight since I've been on them so I don't think they are doing much good.

Anyway hello, nice to see so many other survivors! Sorry to offload, but you know how it is in the real world you don't want to be a further burden on people than you have been already with your ailments. In general I feel a very lucky girl (er, woman, I'm 40 soon!) to be here. I really would love to read more about other's experiences, if anyone else gets as irked by cancer ignorance as I do, other issues/stresses people face as survivors, would be nice to know I'm not alone :-)

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