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Living in fear

benita
Posts: 13
Joined: Mar 2004

I was diagnosed with NHL in 2002 and underwent CHOP and rituxin - lost all my hair, etc. I'm 46 years old and needless to say, it was a terrible time for myself and my family. Because the lymphoma is a low grade, I've been told that it will probably return at some point. My problem is that it's really hard for me to get on with my life without worrying about every bump and bruise being cancer. When I express these concerns to my doctors, family, etc. that sort of brush it off as nothing. I sometimes feel like nobody understands the fear I live with on a daily basis. On the one hand, I feel silly complaining about everything that goes wrong with me but, on the other hand, I feel like being cautious is something we should do when faced with cancer. Has anyone ever felt this way, too and, if so, how do you deal with it? I'm really starting to get frustrated with it all.

sal100
Posts: 6
Joined: Jun 2004

Hi Benita, I have answered your previous postings before. you also have answered mine You as I remember have the same type as me which is the Splenic marginal zone. I am still in remission after 2years and 6 months. My Dr, tells me the same . could come back next week, next year or never. Just have to keep watching.but also trying not to dwell on it too much. It is hard not to worry. I had a scare 3 months ago. Another problem but they assure me that it is nothing to do with the lymphoma So lucky me I now have 2 problems to deal with.I get anxious also and it has put a hold on my life. Professor tells me to do the things that I intended to do as maybe I will never have problems and if I do there are lots of treatments coming up. I hope that you continue to keep well and I expect your children keep you going. Best of luck. Incidently , I am Australian and live on the outskirts of Sydney.

benita
Posts: 13
Joined: Mar 2004

Thank you, that was very kind. I do remember you, too. I do have splenic marginal zone. I know there are lots of treatments out there for us but I just hate the anticipation between cat scans and blood work. I'm sure it will get better with time. Isn't it strange to talk with someone so far away. We are in South Carolina. Just moved this summer from Tennessee. Thanks again.

CharN's picture
CharN
Posts: 6
Joined: Oct 2005

Benita,
God Bless you. I know EXACTLY what you're going through. I was diagnosed with NHL in 2004, underwent CHOP, rituxin, and radiation. I am 47 years old. Every time I get an ache or a pain, I'm afraid it's back. I met a lady at radiation that was dealing with NHL for the 6th time!!!! The staff said that NHL has a very high rate of return. So, I know exactly the fears you have. I know that God healed me. I had great doctors, nurses, treatments, etc. but God did the actual healing. He is still on the throne, even in our darkest hour. The thing to try and remember is early detection. My doc said night sweats would be a first clue if NHL returns. At least NHL is well known and if you catch it, they have medicines for just about all aspects of it, including side effects. But most of all, know that you are not alone. I feel the same way. Even though I have faith in God, it is still scary. I'm only human. You are too. Let's make the best of the time we have.
Char

benita
Posts: 13
Joined: Mar 2004

Thank you. It's helpful to know others deal with this anxiety, too. I am truly thankful to be alive. It's just difficult dealing with the anxiety and always wondering if and when it's going to return. I would like to be offered a cure, you know? I do have great faith in God and he is my strength always. Thank you again for your kind thoughts.

twinkletoes
Posts: 4
Joined: Oct 2005

Hello all, I am 23 and am in my 1st month of remission from NHL. I am still trying to grasp the idea of what just happened to me - this whole cancer experience, chemo, everything, and I'm very afraid to celebrate and say it's over because Im afraid it might come back. I'm glad to hear you too have anxiety and fear about it - I think it's a normal reaction for us. We've gone through something so hard and there's no assurance that we won't have to do it again. But I think there's no point in dwelling on it - go on about your life like it's over and if it comes back, you cross that bridge when you get there. Its hard but thats what Im striving to do!

CharN's picture
CharN
Posts: 6
Joined: Oct 2005

I am SO with you in feelings. I work in the hosp where I had my chemo, and I go running down there every time I have an unfamiliar ache or pain. After all, it came out of the blue the first time! But enjoy life and know that it CAN be taken care of if it comes back. Take care and use the resources that are in here, they are terrific.

soppenh's picture
soppenh
Posts: 1
Joined: Jul 2005

Hi benita, you expressed exactly my feelings, my fear has turned to anger. I was diangnosed with NHL Level IV with a shoulder tumor. I had CHOP and rituxen and remission for 3 1/2 yrs. and now 2 yrs. of rituxen every 3 months. Last one this month. Anyway, i feel terrific besides being thinner. I am so anxious about its return. i just turned 60 and very solitary and have been so thankful each day, my life is much richer in many ways because i appreciate it so much and feel spiritual strength and much love. My oncologist, says luck is a factor.

benita
Posts: 13
Joined: Mar 2004

thank you for your nice reply to my original note. It really is comforting to know that others are like me in my "worries" about the cancer returning. I guess it's hard for our families and friends and even the doctors to know how it feels to have this hanging over our heads. It's one of those things that unless you've lived it, you can't understand. When I was diagnosed, several people told me something along the lines of "we all will die one day and no one knows when you are going to have a car accident, etc." That would make me upset because it was really no comfort at all. It's very different to know that you have a life-threatening disease than that there's a possibility of a car accident tomorrow. I'm saying all this because I think it helps to have someone to talk to that has experienced it, too. I did go to one cancer support group but felt very out of place. I also think that it's good to talk with those who have experienced similar cancers. I know that the women I've met who face breast cancer have much different fears than we do as lymphoma patients. Of course, all cancers are difficult to deal with and my heart truly goes out to everyone who experiences it. Thank you all again for the support. God bless you all!!!

masterchief
Posts: 1
Joined: Apr 2005

You MUST get rid of the fear. I’m a sixty year old man who was diagnosed with stage-four B cell lymphoma in March 20005. Seventy–eight days later and after fifteen treatments with chemo, I had a clear PET/CT scan. It is now November 2005 and I’ve had two more clear ones since. The doctor has not declared me in remission but I declared it for myself. I attribute my successful treatment to several things.

In order of importance:

God. (I’m not much of a church go-er but I have a strong faith. I never prayed for a healing, just the ability to deal with it. I felt in my heart that I should accept the illness and trust Him. How else can one go from stage four to no sign of cancer in seventy-eight days without God having something to do with it?)
Prayers from others. No doubt in my mind that God responded to their prayers)
My positive attitude. (I have no fear of the illness, or even of death if it came to that.
A loving family and good friends. (When I spoke of a want or need, they tripped over one another to accommodate me and being a guy, I milked it as much as possible heh-heh)
Chemotherapy. (It kicked cancer butt; unfortunately, it kicked my butt too)
My oncologist, whom I trusted fully. (even though I didn’t always understand much of the terminology or treatment regimen nor did I care to. I just wanted to get well)
My job, that I wanted to get back to. (I work at Walt Disney World – how cool is that?)
I go places on my “good days”. (There have been plenty of them)
I don’t worry about it coming back. (I will deal with it if and when it happens)

I’m still recovering from the butt kicking chemo. You know, the peripheral neuropathy, fatigue, weakness, etc. but my family doctor says I can return to work in February. That’s o.k. since I haven’t had any time off during the holidays to spend with my family for about eight years. The best advice I could give anyone is to trust God and maintain a sense of humor. Good luck to you in the future, may God bless you with a long life.

Sincerely,
Larry Drury
Orlando, Florida

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

Hi: My name is Hilde and I just read your post. I have been diagnosed in 04 and did 20 radiation treatments. I was one week away from 5 years in April of 09 when it came back.Now I am doing Chemo and doing my 8th treatment Oct. 21.
I also lived in fear but decided to just let God take this fear away. I just felt now that it is back and is stage 4 and in my bone marrow also. I just will do the best to deal with it. I will keep you in my prayers. And I always say God has the last word.
I wish you well.Hilde

DennisR
Posts: 148
Joined: Sep 2009

Hi Benita,
I had NHL stage 4 DXd in 2000, underwent a resection followed by R-CHOP Chemo and was declared Cured after 5 years. I too worried all the time in between check ups and fretted every little symptom, I thought all that worry was for no good reason, and just me me look like a whiner.
Then, in May, 2008, I went to my PCP and complained about a sore spot and small lump in my intestine, and found that the Cancer had recurred. My vigilance to my body payed off in that the cancer was found at Stage 2 which allowed me certain better options. Large B Cell NHL is a very rapidly growing cancer so it's important to keep a jaundiced eye towards your symptoms, even seemingly trivial ones that can be explained by other problems.
I wound up doing a BMT after Chemo this time and am recovering very well, still worried, but doing very well. I'm again NED, and there is no indication of anything other than normal issues with colds, etc. The "Chances" of another recurrance are greatly diminished as a result of the BMT, but no one can say for sure, forewarned is forearmed as the old adage goes, and so the beat goes on.
I'm not trying to alarm you with the possibility of a recurrance in your case, but remaining alert to the possibility is something you should and most likely Will continue to do for the rest of your life.

DennisR

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