• KarenG_WN's Avatar

    What were the things that surprised you the most about your cancer journey?

    Asked by KarenG_WN on Friday, August 5, 2011

    What were the things that surprised you the most about your cancer journey?

    Were there things that were harder than you expected them to be? Were there things that you did not expect at all? Were you surprised by the support your received? Everyone's cancer journey is personal and unique to them, but we have found that sharing your experiences is so important to others going through this experience and just do not know what to expect. We would love to hear your stories!

    27 Answers from the Community

    27 answers
    • PhillieG's Avatar

      * I was surprised at how many people have cancer. The waiting room and treatment rooms are usually packed with people.
      * I was (sort of) surprised at how well I've handled the whole situation I know that one thing that really helped me and still does are my kids. They are young and need me and I need them.
      * I was also surprised at how they can target certain things about cancer like how Avastin can cut off the blood supply to tumors and hence starve them.

      almost 10 years ago
    • Rathgirl's Avatar

      honestly the thing that surprised me the most was the amount of support you can get from everyone. i live in a small town of about 2,000 people and just about everyone in my hometown helped my family and I in some way. it just amazes me how people can be so generous and willing to help ones in need. That is the main reason why I haven't moved away and probably won't move away from it.

      over 9 years ago
    • lovekitties' Avatar

      I was surprised at the numbers. The number newly diagnosed with colorectal cancer. The number of young people who are newly diagnosed.

      I was also surprised that many don't take an active role in their treatment options. If you like your medical team and their approach seems to be working, that is great, but many stay way too long with docs they don't like or who want to throw in the towel. You are your own best advocate in the fight.

      over 9 years ago
    • Jess' Avatar

      Going thru this journey with the monster cancer is an ordeal. An ordeal made worse by the lack of information forth comming from the medical side of it. Everyone is concerned and tries to give comfort to the patient. Me I want to know everything that is being done to me and why. The feeling of secrets or their fear that you will not understand causes me to get nerveous. Tell me the truth, hold nothing back, tell me what needs to be done and let me make the decision to have it done. Dont let me wait once I have made the choice of treatments, just get on with the program. When my Surgeon said open surgery was what needed to be done I said when, and it was scheduled the following week. I went in on Thursday and came home on Saturday morning. That was the easy part for me. Now comes more waiting to get the CT scan to see if it is all gone and healing right. An overload of information can cause some to be too upset but information is necessary to make a good decision.

      over 9 years ago
    • abrub's Avatar

      I was surprised at how well I coped with all of the treatments, surgeries, side effects. I learned about personal strengths that I didn't know I had.

      over 9 years ago
    • hummingbird's Avatar

      I can't begin to explain what the journey has been like. I still think there are times I am not sure if the entire journey is real, or one huge experiment,--yet, to me, life is one big experiment. So my cancer has been one part of the experiment that came as a surprise.
      People surprise me. Some stay away because they aren't sure what to say and others just say too much.
      I'm surprised by my resilience--I have gone full steam ahead with all my treatments and so far have no regrets. There are days I'd like to hide under the covers but those days come anyway.
      I'm surprised at how I have changed--some for the good---some not---I've become very short tempered and can be more critical than I usually am---I'm hoping that I can suppress these issues as I am weaned off the chemo.I do believe I'm more aware of people's feelings now by watching how they handle mine.
      I've been totally immersed in my treatment medically and feel that helps in my ability to cope. I need to know what the doctors are doing and why. I have found that no doctor has said to me you don't need to know or you won't understand. You have the right to know---your body is your own!!!!
      Everyone has strength---you just have to find it... I found mine.

      over 9 years ago
    • MAGNUM1's Avatar

      My biggest surprise was the statistics that I would be given,
      that would imply that my cancer future, was bright.

      After surgery, advised that 66% of time, the cancer NEVER returns."

      My cancer returned in 2 years.

      After 8 weeks of daily radiation treatments, advised that the cancer may not return for 15-20 years; maybe never.

      My cancer returned again, in about 2 years!

      ** So, every time that I have been given statistics about my possible outcome, he has not gone that way........

      My cancer is currently active; only means to stop it is:

      A CURE.

      over 9 years ago
    • NancyE's Avatar

      My biggest surprise was the issues and hurdles with the insurance company. You had to follow what they wanted you to do-- and not make your own choices at times. It was interestng learning that system. At first I was scared to buck the system, but then found that if you work with them you can get all that you need done. (in my case).

      My biggest advice is to be YOUR OWN advocate - no one's voice is as loud as the patient. Make sure in the end you are with the doctor you choose and have the right diagnosis from the start.

      over 9 years ago
    • TubThumping's Avatar

      I learned that my husband is more awesome than I could have ever imagined. I have wonderful friends and co-workers. They set up a calendar to bring food. We had so much food that my husband only went to the store for milk and ice cream. I had a friend that stopped by just to knit or watch me sleep. She also gave me that best massage.

      over 9 years ago
    • Jackie's Avatar

      My life is now divided into 3 time periods: the time before I had leukemia...the time after I had leukemia but before breast cancer...the time after breast cancer.

      over 9 years ago
    • BrandenC's Avatar

      I am surprised at how well I've coped with my disease. When people think of cancer they think that a person life is over, when I was younger I thought this as well. For me I graduated High School, was accepted into a top university, received my first degree in only a sliver over four years (should have been 4 but chemo wiped me out physically/mentally), was accepted to another university to take science course to get in to a PA program. All while actively going through various treatments. Maybe in a few years when my life slows down or when I'm older and in a wheel chair I will feel differently, but this is the biggest surprise to me.

      over 9 years ago
    • mac101467's Avatar

      I am shocked at how I handled the desease. I am for the most part, a very strong and independant guy that likes to rely on just myself. I know I had moments of weakness that left me questioning what I felt was going to be the end. I however, have the best wife and kids in the world that kept my thoughts as clear as possible and brought my focus on my independance and strong will. Well, I am sure if it were not for them and the pushing they did, I would not be as strong today as I feel. I am still healing from stage III esphogeal cancer and all tests are coming back negative which is the best news because I was told that where it was located was inoperable. I could write a book about my experience and the true support from not just my family, but every single co-worker and yes, including my boss ( who was the strongest supporter at work ). But I am alive and thankful for every day I am lucky enough to have! Eric

      over 9 years ago
    • mspinkladybug's Avatar

      what a bunch of blood sucking using jerks i had in my life whom i considered friends, cancer showed me the cancer in my life.
      it also showed me who loved me scars and alls so now we move forward and do not look back

      over 9 years ago
    • Carol55's Avatar

      1. I was surprised to know that my husband cherishes me more than I ever knew and that he is a selfless caregiver.
      2. I learned that I do not accept help or sympathy well at all. I told only close family member and dearest friends of my cancer. I am fiercely independent.
      3. I learned that feeling "normal" by not telling people has been a great blessing. I can rely on being treated the same by those people who I do not see often and don't feel like "the lady who has cancer."
      4. I was surprised at how many people have no idea how bad and lonely a chemo patient feels or what they experience. ( And I didn't either!)

      over 9 years ago
    • dahulagirl's Avatar

      That I was more upset and frightened to have surgery than I am to have chemotherapy.

      over 9 years ago
    • msdcstak's Avatar

      I was surprised by how much losing my hair affected me, including the pain of hair falling out. No one mentioned that! I also didn't think I would care that I lost my hair, but I did feel self-conscious at first, not so much now.

      I also thought somehow I would be able to continue to work during chemo. Not so much. At all.

      I am pleasantly surprised that my chemo side effects haven't been as bad as I feared. I thought they would really knock me out, but I have been able to walk my dogs and help aorund the house a little.

      I told people I felt needed to know about the cancer, and everyone generally has been supportive. Having a positive attitude and a sense of humor about it seemed to make people feel more comfortable talking about it with me.

      over 9 years ago
    • markmather's Avatar

      I had a hard time with chemo brain. Not being able to focus or be able to remember the day before was very frustrating for me personally. The good thing about not remembering is the bad stuff went away day by day.

      What surprised me the most were all the bright spots in my life which i had glossed over for such a long time. They became glaring beams I could use to help me get through undoubtedly the toughest times I would ever encounter in my life.

      over 9 years ago
    • Chris' Avatar

      I was surprised as much as I am afraid of needles - for me the chemo treatments were not fearful - the nurses are wonderful - the 4 to 5 hours I spend there - I work on my computer :)

      over 9 years ago
    • PPaseka's Avatar

      We have learned that while we have had wonderful doctors, you still have to be your own advocate for your health care. I am surpirised by the amount of health care professional that do not take a few seconds to familiarize themselves with a patient before asking many questions. You have to be able to or have someone (as I have for my wife) stnad up for your rights. We have had to insist that i stay by my wifes side. I can understand not being able to be with her when they do scans, but they have tried to make me leave her side will doing gyn exams etc. Health care professionals sometimes forget that the patient is the customer!!!

      over 9 years ago
    • steve70x7's Avatar

      I guess my biggest surprise was how fast everything has happened. Diagnosed one day, major liver surgery six days later, rf ablitoration of a second tumor four weeks after surgery and my phone never stops ringing. It seems like doctors I don't even go to want follow up appointments with me. ;)

      I was also a bit surprised at how much peace I have. God is so good!

      about 9 years ago
    • ozzie95973's Avatar

      Chemo hiccups. Continuously for hours like several hours. And it hurt after awhile. I educated myself and tried to prepare myself for what was coming, so there wouldn't be any surprises. Even my oncologist were surprised with how much I knew.

      almost 9 years ago
    • LeeAnna's Avatar

      Thanks to everyone here, I now know why my scalp hurts so much. It feels like someone used their fist and hit my head all over. Course the docs did not tell me of this side affect. For some reason it never occured to me it was a side affect of my treatment.

      almost 9 years ago
    • zippymaus' Avatar

      Actually, since we're just getting started, my biggest issue has just been trying to herd the cats that are the care team. We have had more delays due to mixups and people goofing than you can imagine. It's gotten worrysome and I never cease to be amazed at what a mess the insurance companies, schedulers, etc. are. It's felt like climbing a mountain just to get her scheduled for treatment and it shouldn't have.

      almost 9 years ago
    • wvgal68's Avatar

      I am very surprised that people think I'm strong! All I'm doing is what I need to do in order to get better. They claim that they would not be able to, but I don't believe that I am anything special.

      over 8 years ago
    • Staceynan's Avatar

      I am in the early stages of this journey but I am already surprised by the love and strength of my family and friends. I could not have expected the out pouring of support from the people in my community. I have always considered myself a strong individual but breast cancer has knocked me on my XXX. I was sure I would travel through this diagnosis unscathed, this could not be the furtherest from the truth. I am learning to except help from the people who offer and not judge those who do not. I am learning how to say thank you and not feel diminished by the experience. I am learning how to be a breast cancer surviver.

      over 8 years ago
    • evapascual's Avatar

      Like PhillieG, I was surprised that cancer does not have any preference. I witnessed this when I began my chemo & I saw different types of people who have cancer.
      I was surprised that so many people cared about me, how all the things I've done in the past never got unnoticed.

      over 8 years ago
    • melee_me's Avatar

      As a mum, I was surprised there was no one person coordinating my daughter's care, and no help/advice/support offered to the family/carers

      over 8 years ago

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