• I really need to know more about the beginning of peoples journeys.

    Asked by Dani on Tuesday, August 14, 2012

    I really need to know more about the beginning of peoples journeys.

    I am going through the testing now, and it is one of the hardest things I have ever been through. Can anyone explain more to me about how they got through first hearing they may have cancer, and then how they dealt with hearing the results?

    11 Answers from the Community

    11 answers
    • nancyjac's Avatar

      People get through things they way people get through things, whether it is a cancer diagnosis or buying a car or doing their jobs or anything else. One person who deals with things emotionally while deal with it that way. Another person who deals with things analytically will deal with it that way. In other words, we all deal with it the way we each typically deal with things and dealing with cancer is no different. I tend to be the analytic type so I dealt with it by becoming educated in the relevant topics. Rather than try to emulate how others react, it might be better for you to recall how you got through some other significant event in your own life, such as the some setback, change in environment, or relationship, etc. Whatever helped you through those events is what will help you now.

      over 8 years ago
    • leepenn's Avatar

      I thought the waiting waiting waiting was the hardest part. For a few weeks there, it seemed like every new test result produced 50 new questions and an increase in anxiety and uncertainty.

      One year later - I'm done with treatment. I'm healing up. I'm feeling stronger.

      I can honestly tell you that IT GETS BETTER!!!! I don't exactly want to say that you get used to it, but you do sort of get used to it.

      What NJ says is totally true. Definitely work with your strengths. Anything that has helped you cope in the past will help you cope now.

      Another thing to consider is finding a support group or perhaps finding a center like our Pathways center (this is a center that provides services to people dealing with big bad health issues - I've gone one time so far, and it was really fabulous).

      You are SO YOUNG!!!! So, consider this: http://stupidcancer.com/
      Their intro line: I'M TOO YOUNG FOR THIS!

      It's not fair - it totally sucks - it TOTALLY SUCKS!!!!! But you are not alone. There are a lot of people here that can help you feel supported and help you find some peace. It's not an easy thing....


      over 8 years ago
    • Lirasgirl33's Avatar

      For me it was harder going through all the initial tests to be diagnosed. I was upset because I didn't know what was going on with my body and some of the people in my medical team didn't seem to be as concerned as I was. This brought me close to a breaking point, I was an emotional wreck. It really helps to talk to someone about what you're going through, your feelings, your concerns, someone who can lend an ear and give you a hug. Also, try to always take someone with you to your appointments. At this early stage I know my brain, my thoughts, my emotions were all a jumble. Sometimes the doc would talk and talk and it was hard for me to process everything he was saying. If it wasn't for a friend or family member with me, I would have forgotten everything that was said. Once the results of my biopsy came back, I was scared but at the same time glad that I finally knew what was going on. Once I knew, my gynocologist, gyno oncologist and I discussed what would come next as far as surgery and treatment. Knowledge is power so I also educated myself by going to trusted sites to read up on things. I also reminded myself to take things one day at a time so I wouldn't overwhelm myself.

      It is true that everyone copes with things differently, but it's always good reading what others have experienced. At least from my experience. I really wish you all the best and want you to know I'm here if you have any other questions. Hugs.

      over 8 years ago
    • Dani's Avatar

      The initial testing and trying to find out exactly what is going on with my body is by far the hardest thing I have ever had to go through. I agree that you should take your past experiences and use your coping mechanisms to get through this also, it just helps me to hear what others have gone through because if it's anything like my story it may be able to help me. I will look at that website. Just the name made me feel better lol. It really does suck, but I know there are many people that are far worse off then I am and that there are many people in my position.
      I always try to take someone with me to my appointments. It really does help to have a support system with you. I think once I know for sure what is going on and can start my treatment I will feel a lot better and a lot more confident in my ability to fight whatever it is going on.
      Thank you guys so much for the advice! Hope to hear from you soon!
      Xoxo Dani

      over 8 years ago
    • Jeepinbob's Avatar

      My wife and I got though the initial shock by realizing that life has no grantees. We realized that either one of us could die in an auto accident on the way home from work, or crossing the street. So we just live day to day and enjoy the time we have.

      over 8 years ago
    • Abbeygee's Avatar

      It gets easier, I was dx on Valentines day 2012, survey 3 weeks followed up by chemo and radiation. FInd a support group and a special buddy who knows what you are going though and who you can vent with. Family and friends mean well, but unless they have been though cancer they do not fully understand. It can easier and what thats what makes us stronger. Please feel free to keep in touch

      over 8 years ago
    • Dani's Avatar

      I am trying very hard to take it day by day. I was married at one point and we ended up getting it annulled. It sometimes feels like I am very alone, which I am sure everyone feels. My family doesnt really get it, and your right Abbeygee it is so helpful to have someone other then family around because they truly dont understand unless they have gone through it. I will def keep in touch. I really could use all the support I can get right now. How are you guys feeling now? Good I hope. Hope to hear from all of you soon! Xoxo Dani

      over 8 years ago
    • IKickedIt's Avatar

      I was diagnosed with colon cancer when the doctor and nurses were telling me that they truly believed it was just hemorrhoids...what an unbelievable shock to wake up and being told that you have what they presumed was a malignant tumor the size of a golf ball! But of course, we didn't know anything for certain and it was weeks before we had a more clear diagnosis so we chose not to tell our children, our parents, our colleagues....we didn't want to tell them until we knew exactly what we were dealing with.

      Once we had the diagnosis, I then had to wait a month for surgery (and the determination if it had spread). It was the worst month of my life!! At that point we were telling every one who we wanted to tell. But it didn't make it any easier. I would walk through the grocery store and have a panic attack when I'd see someone I knew, dreading having to talk about it. I wasn't sleeping, I was shaky, I was edgy and moody. I really must have been miserable to live with.

      I then found that different people helped out in different ways. I had my college roommate who lives in Florida (I'm in New Jersey) who became my chat and text buddy. She was able to do that while at work so if I was sitting waiting in the doctor's office or at the hospital for tests, I would text her. Another friend was my FB chat buddy. Friends all played different integral roles as my support network.

      I wasn't going to find out the staging of my cancer and whether I'd need chemo until after my surgery so despite having many tests, I still wasn't going to know anything. It was torturous for me, my husband, children, parents and friends. I probably should have agreed to go on anti-anxiety meds, but I didn't want to. Do it if you need to...you need to function. Just because you might have to take them doesn't mean you are going to be on them for the rest of your life.

      Some people find support groups helpful. Others don't. This is your time to focus on you and what is going to work best for you. I did end up having to have chemo for 6 months following surgery. During those months, I found that I only wanted to surround myself with optimistic, happy and positive friends. I have one friend who just bemoans all the time. When she'd call, I'd let the answering machine answer the call and then I'd send her an email thanking her for her call and I'd update her of my situation, but I was not going to put myself in the position of having to listen to her problems. For the first time in my life, while I was going through my cancer journey, it was about me and doing what was best for me to get through.

      I am currently a "point" or support person for two people going through their cancer journeys. I have never met either of these women, but I am in contact with them and providing support however I can. Find people who can fulfill that role...someone you can call when necessary, someone you can text for support, someone who can come and keep you company when you need a helping hand. If someone asks how they can help you, take them up on the offer!! Good luck and we are here for you...that's the purpose of this site!

      over 8 years ago
    • Dani's Avatar

      Hey I kicked it! Thank you so much for your response it really helped me a lot. I find this site to be very helpful. I really enjoy talking to people who know what I am going through and that can offer support. It helped to hear you say that during your cancer journey you had to focus on you and surround yourself with positive people. That is exactly the way I feel. Unfortunately, my family, which is also the people I live with can't seem to realize how serious this is. It seems to me like they only focus on their small issues and it kind of upsets me and makes me feel very alone. I dont have many friends where I live, and the friends I do have dont understand what I am going through, so they never invite me out because in my situation I am not the normal 21 year old girl that can go out and party. I am so scared about everything that is going on, and they said today that if the tests come back the way they think they are going to I will be in surgery in the next two months. I am ready to start treatment and kick this out of me, I am just nervous about whatever comes next. If you don't mind me asking, did chemo make you loose your hair? How are you feeling now and what is going on with you now? Anyways thanks for all the advice I really do need someone I can get ahold of in my hard times and while waiting for doctors and tests. Waiting for me is the hardest part, I can't stand it. And, especially going through the county makes things even harder because your waiting time is much longer. Well I hope to hear from you soon! Xoxo Dani

      over 8 years ago
    • IKickedIt's Avatar

      Dani...I'm doing fine. I am cancer-free and appreciating every single day. No, I didn't lose all my hair during my chemo, but it thinned about 50% so I wore hats for the last few months of treatment and it until it grew in evenly. Every chemo is a series of different drugs so the chemo drugs you may have to receive might be different than the ones I received. Losing my hair was difficult, but I just had it in my mind that I was going to do whatever I needed to do to kick this cancer's XXX. My mantra was, "I gotta do, what I gotta do." I continued teaching throughout my treatments and if a student commented on my hat, I'd respond that I was trying out a new look and asked them if they liked this hat better than the one I was wearing the day before. I was an incredibly positive person and was the happiest person at the chemo infusion center because I knew that every treatment got me closer to the end of the nightmare and closer to reclaiming my life back for myself and my loved ones. I was fortunate to have an excellent prognosis, but I also thought that if this cancer was going to take me, at least I would go out having fun.

      I am not a self-centered person whatsoever, but during that year, I had to focus on me. Even my husband joked at one point, "So, it's all about you?" And I responded back, "Yeah, right now it is. I'm the one on chemo." It was so uncharacteristic that he laughed and so did my friends.

      Like I said in my last post, I chose to surround myself with only positive people. When your health is on the line, it's OK to do what is best for you! Since it sounds like you don't have a very good support system at home (which is so unfortunate, sad and honestly, disgraceful), you need to find people who will be there for you. Go online and try to find a local support group perhaps at a hospital or community center. Ask at the doctor's office. You may find it helpful to be able to talk to anyone who has had cancer not just your type of cancer. Not that we all have the same side effects, but we all know the fears, the frustrations and the hurdles that others just aren't able to understand.

      Perhaps through this website, you'll be able to connect with someone who is able to be a texting or phone buddy for you. Good luck and let us know how we can help you!

      over 8 years ago
    • Valentinegirl's Avatar

      Hi Dani,
      I was diagnosed at the end of March, through a routine mammogram, and as I have always been a healthy person, was devastated at the news. Going through what seemed like an endless stream of appointments and tests was very difficult. I kept hoping that one test would prove that my initial diagnosis was incorrect, but that obviously didn't happen. I was just so scared of the unknown...what would treatment be like? How would I handle it? What it if it didn't work?
      Once all of the tests had been completed, I began to accept the fact that I have cancer. Telling other people this news seemed to help in my acceptance of this, as I couldn't live in denial. Being a part of this on-line community helped as well. Accepting this reality was not an easy step, but I have since learned to take things day by day, and most importantly to have a positive attitude. This is the worst thing that I have ever had to go through, but I know that I am going to beat it, and when it is all over, I will be a stronger person. I have already changed a lot since I began treatment - I don't take my life and my health for granted, and I truly appreciate all that I have in a way that I have never done before.
      Someone else mentioned taking someone with you when you go to appointments. I found that doing this was very helpful for me. Docs give a lot of information, and when one is in such an emotional state, it can be hard to absorb and recall it all later. Having another person to take all this in with you can be helpful. Another option may be to bring in a notebook so that you can write down the info you receive and read it later. That helped me as well.
      You also asked about chemo and hair loss. Initially, I expected to just have surgery, but a tiny amount of cancer in one lymph node caused me to have chemo. Unfortunately with this, I lost my hair. When I first learned that I would need chemo, losing my hair was one of my first worries, and I was very concerned about how I would handle it. First of all, I decided that I would wear a wig (that is not everyone's choice, but it was mine), and I invested in a really good one. (some insurance companies pay for wigs - unfortunately mine did not) . I took a friend whose opinions I trust wig shopping, and we tried to make a fun day of it with lunch and some clothes shopping as well. I then cut my long hair into the style of the short wig so that it gave me a little time to get used to having short hair, and made switching to the wig may look more natural. Thirteen days after my first treatment, my hair started to fall out. I asked my hair stylist to come over, and shave my head, as I couldn't stand the thought of my hair falling out in clumps. She did a very smart thing. Instead of shaving me completely bald, she gave me a buzz cut (sort of like Jamie Lee Curtis) which gave me time to get used to having almost no hair rather than the shock of being completely bald all at once. I wore the wig right away, but the buzz cut did help me adjust a lot easier. Now I have lost almost all of my hair, and I think that that helped it to be a less traumatic process.
      Oddly enough, losing my hair helped me to confront some body image/self-esteem images with which I've always struggled. As I have no longer have long hair to hide behind, my baldness has actually helped me to accept myself as I am, and actually come to like my face, and see myself as pretty. I've actually considered going around with no wig. . Being a therapist, I'm not comfortable going without a wig, as I don't want to share my illness with my clients. However, I've thought about going to another p[art of the state and walking around without a wig just to see what the experience would be like for me.
      You also mentioned that you have little support from your family, and that it so sad. Unfortunately, during a time like this, you learn who your friends/supports are, and who they are not. I hope that you can remember that their insensitivity and lack of support has only to do with THEIR OWN ISSUES, and nothing to do with you. You mentioned that you only have a few friends, but can you rely on them for support. I agree that no one can understand what this process is like unless they have gone through it themselves, but people can be supportive in many ways. You may want to look into a support group though your hospital or local community clinic. You may also want to become involved in a group, volunteer, take a class that has nothing to do with cancer. Doing this may help you meet some new friends who share similar interests, and may give you a chance to have some time and space in which you don't need to talk or even think about cancer. That's important as well - having cancer is a part of you life, but it doesn't have to be all of it.
      Most importantly, you need to take care of yourself in any ways that you can during this process. I know that you can get through this Dani. You are a strong woman, and this will make you even stronger. Please don't lose hope.

      With much support,

      over 8 years ago

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