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wow did not expect....

kindnsruls
Posts: 2
Joined: Feb 2012

wow...I've been out here since 1994, being the only known person in the Universe, not to have recovered completely from cancer/treatment.

Everyone is like "That was 18 yrs ago!" and I have lived in both the hell of the non-stop-pain and constant sickness, along with the hell of feeling like I am somehow doing this all to myself. Have been to doctors until there are no more to go to, and all my resources are gone and no one will take the Disability Insurance I have now anyway.

Doctors/people treat me like I am the first and only cancer patient to have EVER have wound up like this...and here I am reading posts on this board and finding out that there are many, many, of you who suffer in exactly the same way.

That does not make me happy.
None of this does.
The body survived the cancer, but life and health did not.

kindnsruls
Posts: 2
Joined: Feb 2012

oh...ok...here too I guess

northa914
Posts: 90
Joined: Mar 2011

I'm only 20 months into my therapy, but I feel for you! My now former oncologist dismissed my chemo-brain, saying it didn't exist. You've been through hell beating the beast and now have to live with what the cure did to you. What type of therapy did you have and how did it affect you? Perhaps others on this board who suffer from the same symptoms as you do can give you insight into what can be done. It must be so frustrating to be dismissed by the medical community when you know that your body isn't the same. I know that if I ever go into remission I'll be left with physical issues as well, but as the single mother of two young boys, I have to look at my life at this point as being one of quantity and not quality.

Andrea

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

I am not on the boards anymore, just drop in once in a blue moon, but saw your post and just had to reply.

What you are describing about feeling alone 'out there' and thinking you are the only one going through many of the things you now know many survivors go through is the thing that these kinds of sites do best. They connect us all and make us realize that we are not 'nuts; despite things like chemobrain.

Now you know that you aren't alone so read the posts and do some digging and you will find that all of this will empower you when you go to your next doctor who says it's all in your head. Information is power and that will help you through. Just a thought too for you. I don't know where you live but you might want to look into clinics called 'Late Effects Clinics'. Now many of them are for those diagnosed when they were children and are now living with late or side effects from treatments long ago but there are a few late effects clinics for those diagnosed as adults now. The big one is at Dana Farber in Boston at the Perrini Clinic. If you can't get there maybe call them and have them send you out some literature on late effects in those diagnosed as adults and I'm sure they will be able to help you out. The Lance Armstrong Clinic is there and I believe the Perrini Clinic is there if I am not mistaken. They have a website you can go to as well to get acquainted with them and what they do. So you see there are actual places you can go to get looked over and validated in late effects so hopefully that gives you even more satisfaction in knowing that there are medical professionals who do know that late effects are real and do impact lives of survivors greatly in many cases.

I am a 23 year cancer survivor and trust me I was out there for many many years thinking it was just me and being told as much by doctors for a very long time. After finding sites such as this and connecting with other survivors I soon realized I was not alone. It has given me alot of power to go out there and fight for what I need and deserve.

All the best,

Bluerose

Ladymonk
Posts: 13
Joined: Jul 2011

There are so many of us long-termers who can completely relate to your post! Do not despair; there are physicians out there who are beginning to understand that long term survival has its own problems, many of which are just now appearing in large enough numbers to study.

I am over 20 years out from Stage IV uterine cancer, found in the abdomen, neck, chest, upper arm. Lots of chemo and radiation for almost 9 years, almost continuously (never had a remission that lasted over 8 months until the 8th year of treatment). I think I must glow in the dark by now.

For a long time my doctors seemed to infer that I was suffering from psychological issues because of the symptoms I was reporting several years out from treatment- joint pain, muscle ache, fatigue, short term memory issues, irregular heartbeat, etc. So much of the stuff was not evident in testing, so it couldn't be easily verified. The neck/back/arm pain finally showed up on MRI several years later, after the discs degenerated and the vertebrae began to crumble. Har 5 vertebrae fused and a metal pate installed. Then developed significant problems with blood oxygen levels on exertion- the chemo had trashed blood vessels on lungs and oxygen can't get into bloodstream. But mostly, the muscle and joint pain, coupled with lousy sleep, were the real killers.

Then, wonder of wonders, I met an internist who is involved, interested, and believes. Together we have learned and researched long term effects, and different categories of pain management meds and routines- exercise, diet, medication, sleep management. And we still learn together. He is in contact often with Dana Farber, which helps to advise him whenever we report something new, and he is learning along woth me.

The bottom line is this: The right doctor makes a world of difference. Find someone who is truly willing to put effort into it, who works with you and won't give up until things improve. It can happen! My doc admits he is not an expert, but he is open to anything new that is reasonable. The end result is that I was able to have a lot of productive years in a job I loved until I recently retired (was a director of nursing, after so many years when I couldn't work because of the fatigue and pain). And my quality of life is amazingly better. I love life now, and you can, too.

Keep on looking until you find a physician who is willing to be a partner. It may take a while to find him/her, and a while longer to find a solution that is tailored to your needs. But it CAN happen. Don't give up- surviving the cancer is only the first step to living a quality life. You have earned it, you deserve it, and you will have it if you persevere!

Good luck. Let me know how it goes. You can reach me on facebook, too- Cheri Wheeler.

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