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I am a survivor, now what

melzmom
Posts: 47
Joined: Apr 2002

Hi everyone:

I was diagnosed with Non-Hodgkin's Lymphoma in September of 2000. I was sick six months prior to my diagnoses. However, my symptoms mirrored typical food allergies and I was sent to an allergist and put on Predisone several times. Finally, a third trip to my regular MD resulted in her insisting that I see another allergist. From there I had a chest x-ray done which showed a large spot on my chest. In less than three weeks time I went from working full time to having two biopsy surgeries (first one was not conclusive) and two chemo treatments. My life was turned upside down. Suddenly my life was Dr.'s visits, medications, sleeping, the phone ringing off the hook and I became a cancer victim. I felt very lucky to have the medical care that I had and during the six months of treatment I did exactly what the Dr.'s told me to do. I went to all of my appointments, took all of the medications, ate when I was supposed to and rested. Never once during my treatments did I think I wouldn't be cured. All of the medical professionals were amazed at my positive attitude.

My tumor is gone! The chemo and the radiation were successful. I have one more test that I have to do--A PET Scan next week. The trouble that I am having is making the transition from cancer patient to cancer survivor! I feel depressed all of the time. Now I reflect back to what we went through and I am in shock. I keep telling myself that the past six months was spent getting better physically and now I need to heal emotionally. I just don't know how to do that. I am so afraid the cancer will come back or that they didn't get it all. Since there is no known cause for my type of cancer I can't stop doing something to prevent it from coming back. The phone has stopped ringing. I don't have the daily attention from the Dr's anymore. My family and friends can't understand what I am going through because they have never been there before. I am finding that treatment doesn't end when the cancer is gone. There is a lot more to healing. If any of you have been where I am, please, please e-mail me here or e-mail me at Melzmommy@yahoo.com. I would really love to hear from you.

Thanks,

Lia

ricejf1
Posts: 6
Joined: Apr 2002

Lia,
I was so touched by your message that I just had to write you. I am a 6 yr. survivor of
Non-Hodgkin's Large B Cell Lymphoma and I understand exactly what you are taling about.
I did not want my treatments to end and when they did I was very emotional about the whole thing I felt safe as long as I was going through my treatments. I has 12 weeks of chemo every 10 days and then when that was complete I had 30 days of radiation. That was my security blanket, I was so used to the support of the medical staff as well as they people I had grown very fond of that were going through treatment (radiation) the
sametime I was. Once it was over I felt totally on my own and scared out of my mind!
I will tell you though it does get easier with time, I don't think about cancer all the time and will it come back, like I did at
first. Not that I don't worry from time to time when I feel a strange pain or ache it's in the back of my mind, I think that's something that we'll always live with. I hope this helps in some small way, I really do understand where you are right now just know that you're not alone. I would love to keep in touch with you and help anyway I can.

Jeanine

hollynn
Posts: 6
Joined: Apr 2002

I am 19 yrs. old and have Non-Hodgkins diffuse aggressivelarge b cell lymphoma, and have completed the chemotherapy round. Right now i'm kind of in limbo, waiting for my appt. for radiation, and am understanding the unease when you don't have the support of the medical staff. If any of you want to get in touch, I'm here for you.
Holly

michele31
Posts: 5
Joined: May 2002

Hi Lia,

My name is Michele and I am a NON-HODGKINS SURVIVOR AS WELL!!!!

I was dignosed with this type of cancer in November of 2000, after I had my first child in July of 2000 as well..

I am 31 now and was 29 at the time.

I had Stage 1 and only had three treatments of chemo (CHOP) and 20 treatments of radiation. I had a swollen lymph node in my groin that I actually found myself...Thank God that I found it when I did because I am sure that this cancer would have spread to my other organs as well...

Like you, I have been having the same feelings after the fact of being treated and now one year in remission. At the time, I just wanted to get the chemo and radiation over with and go no with my life. Everyone around me, including my family helped me to feel this way and now I find myself mad all of the time and depressed about it too...I can no longer have any more children because I had to have my tubes tied. My oncologist advised me not to have any more since the cancer may come back??!! There is always a chance and I do find myself worrying that someday there will be a recurrence!!!!!!! I guess that we just have to pray and hope for the best!!!!!!!! But, sometimes this just seems all too impossible!!

I thought about going for counseling and talking to someone, but do you think that a therapist will be able to side with my feelings?? I really do not think so..This is why I joined the chat here hoping to find someone that I may talk to who went through the same cancer as I had and someone who will understand what it feels like to go through what I am going through right now.

My e-mail address is Michele.cerami@verizon.net and if you feel like e-mailing me back, then that would be just great!!!!!!!!

I am so happy that you are in remission!!!!!!!!!

And believe me I know what you mean when you said there is alot more healing!!

Take care and hope to hear from you soon.

Michele

coondog
Posts: 9
Joined: May 2002

Hi, new to this group but defintely understand about the fear. Had NHL about the same time as you, 1999 so far still cancer free. Still pops into my head though if I get a cold or anything. Makes me wonder if it has returned. Still learning to deal with this, so far have found out the best thing is to use the fear as motivation. Do what you want, when you want (within reason). Think of those fears as small wake up calls to keep a good attitude and appreciate the fact we are still here and how good our lives, friends, and family are. Keep up the positive outlook, we have as long as we have. Good luck!

leah1
Posts: 1
Joined: Jun 2002

Hi Lia,
I have now been a NHL survivor for 7+ years, since my stem cell transplant, which I had in November of 1994.
Although I may be new to this site, I have been active on the Leukemia/Lymphma & Myeloma Society's web site for about 3 years.
Rest assured Lia...I totally understand how you feel.
Are you aware of the fact that lymphomas are considered to be blood-related cancers? I did not, until a few years ago. That is when I got involved with the LLS web site.
Lia...you said, "My family and friends can't understand what I am going through because they have never been there before" and you are right. But the reverse is also true. You don't know what they are going through either, unless you have had a friend or family member experience what you have or are experiencing now.
Although as patients, it is our lives that are in jeopardy, this does not mean that are loved ones do not feel the emotional affects of our diseases. The reasons might be different, but emotions are universal.
I found out what it feels like, when my husband had a severe heart attack, last October.
You said, "The trouble that I am having is making the transition from cancer patient to cancer survivor!" Lia, this is perfectly normal.
Think about it for a moment. You were focussed on one thing and one thing only, which was LIVING and doing everything possible to ensure your success.
You have already gone through the fight mode and yes, you are going through a healing process and will continue to, for quite sometime.
As for the fear of your cancer coming back, I doubt that this will ever truly go away. However, each healthy day will strengthen your emotional self-confidence, allowing the intensity of your fear to diminish. But, you do need to be patient, because it does take time.
Unlike children, healthy adults do not have to put their total trust in nor rely on others for their exsistence, as we do or did.
When you said, "I don't have the daily attention from the Dr's anymore," it made me remember that this was exactly how I felt, after my transplant. Only, I went from being in total isolation at the hospital, to being sent home. I too no longer had the medical team directly at my side. I also had the fear that every virus or germ I encountered might kill me.
Lia...the one constant in life is change. Part of the healing process is to allow one's self time to grieve. Not because our physical lives are in jeopardy, but that our concept of who we thought we were has changed. We will never be exactly the same person we were, before our cancer. Yet, that does not mean we can't still strive to achieve many of the same goals, dream many of the same dreams or enjoy many of the same things we once found pleasurable.
You have been given a new lease on life. It is an opportunity to learn from who you once were and an opportunity to explore who you might want to now become. It might be scary, but don't let fear get in the way of happiness and fulfillment.
Sincerely,
Leah

ship1234
Posts: 3
Joined: Sep 2002

my husband had his last cemo &retxin last of march belive me we sure know how you feel i worry more than gerald im praying it wonr come back he is 67 yrs old they wanted him to have stem cell trasplant we would like to wait if it flais up again then do it doc says ok he goese back for another petscan in june

joce3029
Posts: 1
Joined: May 2003

Hi,
It is more than a year since you left your message, and I hope you and others still read the replies. Your message touched me as no other has because I am approaching the end of my chemo, and I am more scared now than I was at the beginning. I had a rapid response to the chemo, (probably the rituxan) and my second CT scan showed dramatic improvement. I was in chronic pain for years before I developed this disease because I have fibromyalgia, and I just dealt with it. But now I imagine the worst with every ache, even though it's probably just the fibromyalgia. My fiance, family, and friends are very caring and doing the best they can, but there's no way I can express what I'm really feeling--the fear of dying, of more and more horrible treatments, the unknown, and being so out of control. I am a nurse, and I always thought I was pretty empathetic, but this is like running full speed into a brick wall. Nothing can prepare you for it. If nothing else, it has made me a better nurse. I find the messages on this site helpful, and at times scary, but I feel like everyone here understands. I would like to hear how you managed the adjustment to survivor, and how you are doing.

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