• Dealing with fear

    Asked by Beverly on Saturday, February 22, 2014

    Dealing with fear

    I'd like to hear from you What Nexers out there on how you made the transition from active chemo to remission. Specifically on dealing with the fear that it will come back. My physician has told me that it will come back - the question is when. It's a very scary thing... any comments?

    14 Answers from the Community

    14 answers
    • lilymadeline's Avatar
      lilymadeline

      Hi Beverly, Why the heck did your oncologist say a stupid thing like that, because some of us stage IV patients actually become NED for decades! I know a breast cancer patient in my support group who has had her stage IV cancer controlled by hormone blockers for a few decades now...and because I belong to two large support groups I know quite a few who have had their stage IV cancers ( different kinds, lung, breast, liver, multiple myeloma ) controlled for about 10 years. I have been living with stage IV cancer for 3.5 years now and I do admit it has flared up a few times but only when I messed around with medications...now it is dormant? and hopefully it will stay that way for a long time......But the fear....the fear is real and I am scared as well, I think we would be idiots if we weren't scared! I just do my best, get my sleep, eat a healthy organic diet, exercise every day....in other words I give my body the best chance to beat this disease! Sleep is very important by the way, try to get to sleep about 10pm or 11pm every night and please get at least 8 or 9 hours of sleep! Some expert from UCLA told me that was very important and because she was doing so well with her cancer I tend to believe her. Anyway I do know how you feel and I certainly have had fear overwhelm me a few times, but I try to think of all the positive things because stage IV cancer is not a death sentence anymore! And please don't be shy about getting a second or a third opinion- I did- some oncologist are simply more aggressive and more optimistic than others- and I like the aggressive and optimist ones the best! Best wishes! xoxoxo

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      He was probably just being brutally honest. It eventually does come back in most cases.
      I DO Believe if you go to Raw Foods, Juicing and Anti Cancer Supplements it gives you the best chance at a total cure. You can check out my profile for some ideas.
      Good Luck!
      Barry

      over 5 years ago
    • Schlegel's Avatar
      Schlegel

      You are not alone. You might it helpful to go to support groups, cancer retreats, cancer conferences, a cancer support center. Sharing with others in the same boat may be helpful.
      I was diagnosed with follicular lymphoma in 2005. Not until 2010 did I see it as no big deal. Yes, it will come back, so I get treated and move on again.
      I had a doctor who told me on every visit that it will come back, but he is the type of doctor I like.
      You did not say what type of cancer you have. If it is a blood cancer, you are in luck. I am hearing from a multitude of sources that there is an explosion of new treatments, good treatments.

      over 5 years ago
    • Lirasgirl33's Avatar
      Lirasgirl33

      Hi Beverly, first of all, congratulations on finishing treatment! :) That is awesome news! Second, your doctor is not God so he doesn't know for a fact that it will come back. Disregard his dumb comment.

      Treatment has definitely been a roller coaster of emotions for sure! Right? You're not alone, we understand the feelings that come along with this diagnosis. One of those is the fear of recurrence. I myself have experienced a recurrence after being treated. I try not to forget that there are plenty of people out there who haven't, even being at stage 4 they live the rest of their lives without a recurrence. There are also people who do get a recurrence, once, twice, or three times, etc, and each time they get treated and continue to fight and still live to enjoy life and their loved ones. The fear or recurrence, yes, it's always there in the back of our minds, but that's where I prefer it to be, in the back, way waaay back (where I don't remember it or focus on it), and not the front. I prefer to focus on the "now". I hold on tight to my faith in God, and I live my life taking advantage of those moments I get to spend with my family and friends. The future is not guaranteed for a single soul on this earth, with or without cancer.

      Every time fear and doubt try to disturb my life, I just say out loud "God, you are in control", and I leave it at that, because I know God is watching over me and he's always with me and he truly is in control here. There are times when all we can do is wait, like when we wait for scan results. That's when I try to keep myself busy, run errands, work on projects here at home or go on outings with my kids. We continue to get busy living. :)

      Two years later, and I'm still here. Those are 2 years of memories with my loved ones that I wouldn't trade for the world. I'm just thankful to God for being here another day. I truly wish you all the best and well wishes and prayers sent your way, that this cancer leaves you alone for good and that all of us get to celebrate many many more birthdays. Hugs.

      over 5 years ago
    • Lirasgirl33's Avatar
      Lirasgirl33

      Omgosh, sorry I just realized I wrote a book! lol

      over 5 years ago
    • kiki95632's Avatar
      kiki95632

      I have been dealing with cancer since 2006 when I was diagnosed with NHL stage IV. I can not tell you how many times I have come out of remission. I was once told that fear was a choice and I had to decide if I was going to choose fear over being present in my life. Living in fear, worrying everyday if I was going to find a new lump or have a bad CT scan would hinder how I live. I would not be able to enjoy all that life has to offer. When we are first told that we have cancer it is natural to be fearful. I teach art therapy and also am a chemo angel, so I see a lot of people in different stages of treatment or at the end stages. One thing I have noticed is that most people who are at the point that treatment is no longer an option seem to be at peace with their life. They have chosen to live each day fully and be grateful for the loved ones and friends in their life. They have accepted what is to come and seek out fellowship and God. To be honest I fear more about what a terrible driver I am then about if I will begin treatment again. I fear the lab and getting that one person who seems to be a digger and pokes the heck out of me more than I fear chemo. I know that I am treatable but not curable right now so I choose to live one day at a time. I choose to play dress up and pretend tea with my granddaughters over fearing if cancer will come back into my life. If fear is a choice then I will always choose to be happy and grateful for all the experiences I have been through because honestly, even during chemo and feeling like crap, I have had family and friends who have supported me. We all have our own path to choose so I will choose to be happy today and leave fear behind.

      over 5 years ago
    • Santana's Avatar
      Santana

      Fear wins only if you let it. I have only been cancer free no more than 3 months at one time before a tomor pops up on me. I was told the same thing. Finally I accepted I could die any time and decided to try to enjoy life anyway I could. I had a 102.9 fever one night and my wife called the DR, he said to go to the ER or I could die. I said OK and went to sleep.

      Good luck

      Santana

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      Hey Santana......You just about summed it ALL UP.
      Made me Laugh.
      Great Saying..
      The Doc said to go to the ER or I could die.
      I SAID OK AND WENT TO SLEEP...
      Absolutely Priceless. Thanks for Making my Day....lol

      over 5 years ago
    • nicegal's Avatar
      nicegal

      Gosh, that's a big one, and I can't really give you a better answer than the others before me. And Santana, okay, I get where you're coming from, many times I tried to avoid hospitalisation with fevers, but actually, you're lucky you did wake up.

      over 5 years ago
    • jhale17's Avatar
      jhale17

      Stress after treatment

      The stories above show for some of us having cancer is not so much getting a cure as it is getting a medical team formed by and including your primary care physician to see you for the long term. Consider doing this even if your cancer never comes back. I have done this and it allows me to let the doctors handle the prospect of future cancer and me to live my life. It is common now to refer this as cancer management and is done formally by a few cancer centers. In my case, I had to work with local medical services and it has worked for giving me four remissions in thirteen years.

      I do have to do my part in being diligence in communicating on a continuous basis my health issues to my medical team at regular intervals and being open to exams, blood work and scans. After your first remission it is wise to consider a healthy life style. My advice on this follows,

      Patience - Patience is your best friend. It allows you to endure all the wait-times necessary for all the steps needed to get you into and in between treatments. Understand this is normal and natural. One big challenge the doctors have is to match your disease with the proper treatment for your safety. Give them this time by being tolerant and understanding of their needs. It takes time to fully establish an individual’s baseline function (your health status.) Your medical team’s goal is to return you to your baseline functioning when treatment is completed. Your first impression may be that they are taking mini-steps. Take a deep breath every time a new appointment when a wait-time is given to you and be patient. Only you can make your peace of mind happen.

      Positive Attitude – There are doctors that agree that a positive attitude greatly enhances the effects of cancer treatment in a positive way. This is another of the few things that you as the patient can apply to improve you treatment outcome.

      Good Nutrition – If your treatment has induced toxins into your body good nutrition is a must. Your body’s internal damage has to be dealt with. Your medical staff gives drugs to help but you have to remember your body requires daily nutrition and exercise. It is your job to eat healthy and exercise the best you can.

      Exercise - No matter how much discomfort you have, you must move. I grant that some treatments require rest but that does not necessarily mean total rest. I found it does not take much activity and you do not have to do it in a long time period. You can spread it out so that you can avoid getting over tired. Some movement like walking actual improved my comfort level. You will find that doing nothing has no redeeming value. As you go through your treatments both you and your body learn how to better deal with the side effects. Know that your body is doing things automatically to heal itself from the effects of the toxins in the treatments. This is normal and a beautiful thing. Some of the other basics are adequate rest, good nutrition and drinking lots of water. I recommend marking on paper the amount of water you drink – it is very easy to forget how much you have actually drunk each day. Keep alert and be proactive to discover those little things that work for you. The time spent is good for the soul.

      Remember you are a survivor from the day you are diagnosed. You and your doctor set the course of treatment but you must remember you play an important part. Your responsibility is the job of returning your body after each treatment as close as you can to your pre-cancer baseline function. You must be proactive in using the tools available to you. Some important tools are those mentioned above; patience, positive attitude, good nutrition, drinking lots of water, getting adequate rest, and exercise. These aid your body’s ability to detoxify and repair. Only you have control of these life restoring tools do not fail to use them.

      Good luck on your journey.

      over 5 years ago
    • Santana's Avatar
      Santana

      I had 5 relapses in under four years. First one was by far the hardest one! I was 3 month free and could not understand why a transplant was needed. Pre-transplant scan showed it had spread. I had to deal with the fact they are correct, I was also scared because they said if it did come back, chemo would not work, and they were right about that.

      No cure are words that are very hard to swallow but it must be done sometimes.
      Only having a positive attitude made me process the relapse faster when I was told I first had cancer.
      I just told myelf if I beat it once I could beat it again. By the 4th relapse, I was more confidant to beat it again and had lost all fear of death. I knew I was taking a risk when I did go to the ER, but was confidant it was not my time. I had gone to hostipal 2x before when advised and kind of knew what to expect this time.

      Wating for Remission # 6
      If you beat it once you can beat it again fight on for one more day, believe in yourself with confidance and without FEAR!

      Diet and exercise helped, but most of the time I was GVHDing, radiating or chemo'ing so it was a no can do. But when I was able too it helped.

      Fight on!

      over 5 years ago
    • cam32505's Avatar
      cam32505

      My onc did not tell me my cancer would come back, but as I progressed, I could tell that they were surprised when they didn't see cancer. I was like why are they putting me through this if they just expect it to come back. The truth is they don't know why the treatment works for some people and not for others. I have a friend who had breast and ovarian cancer 14 years ago. She's still in remission. It's these stories that give the rest of us hope that we will stay well.

      over 5 years ago
    • cmontano's Avatar
      cmontano

      Forgive me for stating the obvious, but life itself is incurable. We're all going to go sometime, and none of us know exactly when or how. And as hard as it is, cancer is not as bad as some other stuff. In my book a degenerative neuralogical (sp?) disease would be a lot worse. So yeah, all in all, that was a really unhelpful/dumb comment from your doctor. Like so many have said above, what matters is what we're doing now. Fear is natural and understandable but we have to put it in its place - just like we did with the cancer. All best wishes...

      over 5 years ago
    • RalphH's Avatar
      RalphH

      My onc told me I will have lymphona the rest of my life. So far, I have had three treatments in five years. After my first treatment, the worst one, I still worked but took a lot of recovery time but was able to get the work done I needed to. These last treatments, I missed very little work. This is important to me and I think it helps me respond positively. Fortunately, I am 77 yrs old so I have no idea how much life I have left and plan on doing what I think GOD is asking me to do. As a follower of Christ, I use him as my model. No matter what I experience or suffer, I must remain faithful. With that, I don't have to fear anything.

      over 5 years ago

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