Confused and Hurt

Just passed my one year from being diagnosed and I've been feeling a little confused and I guess hurt. I was just told a few weeks ago that I'm officially in "remission." I should be happy right? But what happens when you're still suffering with those long term affects that chemo and surgeries leave you? My energy level is still so low, I'm ridiculously thin from loosing so much weight during treatment, petrified to eat anything because I just get sick and I'm haunted with the idea that "I gave myself cancer" and will give it to myself again. I have no motivation to get out of bed or do anything. Feeling hopeless, lonely, and just want to go back to real life when I didn't have to worry about taking medicine or getting my blood check on a regular basis. I just want to feel normal again- and I'm so far from it? Any advice out there? How do you get back to your life after suffering for so long?

Comments

  • 12 Comments sorted by Votes Date Added
  • DanGruDanGru Community Member
    It definitely takes a while to get back into normal life after going through all that. Im approaching my 2 year anniversary of diagnosis and just completed my one year anniversary of treatment and I still somewhat suffer from lack of energy. However the affects from the chemo and all the other treatments have gotten much better. I'm sure every person is not the same with their recovery time but I promise it does get better, even if it's not back to your previous 100%. The hardest thing in my opinion was dealing with the way people talked to me, but even that has gotten much better. I find most people even forget I am sick. The feelings of hopelessness and lack of motivation will subside once you start going out and doing what you want to do. Try to do whatever you liked to do before you got sick. Even if it's not with as much energy or enthusiasm as you had before. It will come back, it just takes time. You're right, those treatments are hard on your body but also very hard on your emotions and overall wellbeing. Are you still in treatment or has that stopped? What kind of cancer do you have? Oh and congrats on your remission status. I hope this has helped.
  • Remission doesn't mean you're done, or that you won't continue to have long term problems.

    I went into remission after one round of chemotherapy, but I had 8 more after that spaced out over about 9 months. Then after that I had a year where I couldn't think straight at all and I barely have memories from that time. Then finally I could actually do productive work, but very slowly. I am still in the work slowly part, but it gets better slowly over time.

    Remission is a milestone to celebrate, but it's not a single milestone. It's a series of milestones. Every day in remission is worth celebrating. I have a party every year on my remission anniversary. It's kinda like a second birthday. I know people who celebrate multiple remission anniversaries because they relapsed and went into remission again.
  • DanGruDanGru Community Member
    Hi Shay, well to be honest I don't think it's a secret what will happen to most people with cancer and I realize this for myself. I have been back to my normal life now for long enough to forget I am sick most of the time. However, there is not a day that I don't think about what will happen. It's difficult, I don't know if there is a good way to deal with the unknown. When I am being optimistic about the future and how effective the treatments are I compare it to cell phones.. Well 10 - 15 years ago think about what you had as a cell phone and now look at it. Most computers back then probably didn't have as much technology in them as these smart phones do now. And most of the statistics there are on survival rates and comparables are at least that old if not older. Kind of a weird comparison but that is what honestly makes me feel more optimistic about the future but at the same time I realize that I will probably become ill and die from this terrible disease. Kind of like you said my feelings on it all vary day to day or even minute to minute. It affects every major life decision you make. I just recently bought a house and when I was at closing I realized my chances of living long enough to pay it off are slim.. That ruined my whole week. I have an MRI scan of my head every 3 months to check for tumor progression so when I approach that date I get very worried but after the scan I'm usually optimistic for at least a little while. How have you been dealing with this? Do you attend support groups? I have not done that but has crossed my mind from time to time.
  • DanGruDanGru Community Member
    You're right on with the hope part. I've read several stories of people with more aggressive tumors than myself and they've been alive 10 plus years and are still living with a good quality of life. Buying the house was a difficult decision for the reason of saving the money like you said. Sometimes I still think I should have rented but I decided that I do not want this sickness to dictate what I do and what I can't do. I have planned accordingly and do have money in savings for a rainy day but quality of life is huge in my opinion and I refuse to let this cancer make decisions for me. And I think in one sentence you summed up this entire horrible ordeal. " I didn't think would happen to me..." That is the truth there. This never even crossed my mind.(no pun intended ha). And it sounds like you just have begun your journey with the treatments, just remember like bikernate said, there are going to be many milestones to celebrate and even if for a short time things get better. The only thing you can control in this is your attitude. You'll hear stay positive a million times but it is the truth, it makes it that much better I promise. Do you have a significant other? That's probably your best place for support and hopefully they are being supportive. I had a girlfriend during my ordeal and she was great for a while then the stress of my treatments I guess got to be too much and we broke off our relationship. Now I am a single 28 year old and I don't even know where to begin..( Im starting to get into a different rant here but Im looking for advice from anyone that has any). Is anyone reading this single, and if so how do you bring up the cancer situation when dating someone? I am not currently dating but I know I'd like to in the future. ( Wow, haha I never thought I would say half of the things I've said in the past 2 years.) " My brain surgeon said it's malignant." " Good news, my oncologist said the chemo and radiation will only last 6 weeks and has worked." I can probably come up with a million other ones and Im sure everyone else can too. Haha, a sense of humor about it all can make it just that much better. Hopefully some of this has helped.
  • Shay35;8218 said:
    Hmmm dating is a good one. Would say your cancer is in the past or still active? Because if it is in the past you can tell a girl after 1-2 months about it. THe reality is many has been affected by cancer/severe illness in their personal lives and they may be understanding. . .I go to a website www.plentyoffish.com. It's free all over the U.S. You will see that some girls talk about how they participate in cancer walks etc. . .They are probably open-minded. . .Arrange whatever pieces cometh your way. . .Is the ex out of the question?

    I would not put such a concrete number on when to tell someone. There are too many variables to make that call on a forum. It's so case-by-case. For me, I'd err on the side of talking about it early. I wouldn't call it first date early (or any date, for that matter), but I'd bring it up in conversation at some point fairly early in the relationship. It wouldn't be hard to do so in a non-threatening manner, I think. After all, I'm pretty involved in the local Stupid Cancer chapter and at minimum, when trying to plan stuff to do, I'd be bringing up other scheduling commitments. Then there are the inevitable doctor's appointments, scars that need explaining, and so on. It's part of who I am now, and it will come out sooner rather than later.

    As for finding someone, I don't think much is different in that regard (except for the additional issue of finding someone who isn't freaked out by your diagnosis). Just get out and do stuff and meet people who do those same things...or similar things. You will eventually find someone who does those same things who also happens to be single, and you can spend time together getting to know each other and whatnot. I also won't rule out the internet, but I've never really been much of a fan of dating sites. I used them in the past, but never got anywhere with them. I've had better luck meeting folks in different social media outlets with a focus on something we have in common. I have made quite a few friends on forums for mountain biking, a few on forums for hiking, and so on. In large part because I hit up local forums for intel on where to go when I am travelling and someone volunteers to show me around their favorite spot. I met my wife in a Yahoo chat room for college students about 12 years ago. We were both nerdy and not all that social back then. Funny how now we're not as nerdy and a lot more social.
  • DanGruDanGru Community Member
    Thanks for the advice. I agree it should be earlier rather than later and I'm sure it would get brought up regardless if I wanted it to or not because of the giant scar on the side of my head. It's not very noticeable with my hair but if your looking for it, it's easy to find. As of the moment, I am not too concerned with the dating thing, especially enough to go looking for someone. If I met someone then I would pursue it but I am not actively looking. As far as my ex, we are on good terms it's just we're good friends and not dating material for each other. There is no passion and it's not worth it for either of us to spend time trying to make things happen when there could be someone else out there. I think what I would like to do is become more actively involved with cancer support groups or involved with something similar. Like you said, just getting out and doing stuff is a great way to meet people and would eventually meet someone who hopefully won't freak out with my sickness and date. I have to admit though, this cancer has really affected my relationship with a lot of my friends and was the nail in the coffin with my relationship with my girlfriend. I think that's why I am concerned about the dating issue, and I figure I may as well be prepared incase I do meet someone unexpectedly. So tell me about the local stupid cancer chapter. Where are you from and what do you do with it. I'd like to meet people my age going through this. It sounds like a great way to do that. I'm in Missouri, so the Midwest.
  • I am in Indianapolis. Our chapter is new and we're trying to get it rolling. We're cooperating with a couple other support groups in town on events and advertising (we're letting the other groups take care of meetings with professional speakers and whatnot while we do more fun, social events).
  • kfninakfnina Community Member
    Elizabeth I'm 27, I have a chronic leukemia. I recently just hit remission, however I have to take the oral chemo the rest of my life, I get so frustrated because unlike most people it has made me gain weight, I have lost my self esteem, I used to be very tan - I cant even go in the sun anymore, my hair is very dark, all of my roots, eyebrows and eye lashes are blonde now, I am CONSTANTLY tired, and the most important one is ever since I can remember I have wanted children of my very own, I feel like I would be such a good mother, I know you can adopt etc but I want my own children and I don't know if that will be possible now. I am constantly depressed and upset and its something I struggle with everyday, I am always tired, no matter how much I sleep, people don't think I'm sick, I spray tan, I have my hair and I have weight on me, but like you I am fatigued and have to get my blood taken every month, and I am just sick and tired of being sick and tired, I truly feel you, I will pray for you! stay strong!
  • kfninakfnina Community Member
    The memory side effect is the worst, I can never remember anything, and it hurts my heart!!
  • kfnina;8519 said:
    Elizabeth I'm 27, I have a chronic leukemia. I recently just hit remission, however I have to take the oral chemo the rest of my life, I get so frustrated because unlike most people it has made me gain weight, I have lost my self esteem, I used to be very tan - I cant even go in the sun anymore, my hair is very dark, all of my roots, eyebrows and eye lashes are blonde now, I am CONSTANTLY tired, and the most important one is ever since I can remember I have wanted children of my very own, I feel like I would be such a good mother, I know you can adopt etc but I want my own children and I don't know if that will be possible now. I am constantly depressed and upset and its something I struggle with everyday, I am always tired, no matter how much I sleep, people don't think I'm sick, I spray tan, I have my hair and I have weight on me, but like you I am fatigued and have to get my blood taken every month, and I am just sick and tired of being sick and tired, I truly feel you, I will pray for you! stay strong!
    tans are overrated, anyway.

    I started getting a ton of gray hair during/after my treatment. that one is fun. I also gained weight during treatment, but it seems to me that it was primarily because of the steroids I was on, and not the chemo itself. still, I nearly hit 200lbs...and I used to be about 155. that weight did not look good on me.
  • kfninakfnina Community Member
    The side effects are so bad and some are so bizarre.