Post treatment worries

Hi everyone! I just made account and I am so glad I finally did. My name is Steven and I was diagnosed with germinoma brain tumour. I remember when my nurse practitioner told me about this site and asked repeatedly if I was going on and I would lie and say I did but man I wish I really had done so. I got done with treatment in December and have remained cancer free since, with a very positive outlook on remaining that way. Looking back through chemo and radiation it all seems like a long blur. Of course I can recall almost every waking moment of it but it still feels like one long continuous foggy time period. Like being dead tired but still awake not able to fall asleep. I was just drifting through the motion letting the people who were treating me treat me and then right back to my couch in my parents living room where I stayed for a the whole time. Thank god for Netflix and Gilmore girls because that's literally all I did to keep my mind occupied until sleep would take over. If I could have slept through it all I would have. Actually I wanted to most days.
But I'm 4 months done with treatment now and I feel great. Half the time. And completely lost and utterly worried the other half. Before I was diagnosed I thought I was the shiny beacon of health in my family. Nothing was ever wrong with me and I was fit. Pain if I had it was always the result of some deserving effort and I thought nothing of it. But now I am paralysed by it. I feel everything. I worry about everything. I fear that everything is cancer related now and even though my outlook is very very positive I cannot help but stop in my track anytime I feel a pain in my side or back or anywhere else. But especially the occasional pain in my side or back would make me think that I have colon or kidney or liver or anything cancer/metastasis. I try to rationalize and be logical, and say I feel this way because I just started working out again and I just up and decided to run a 5k but the dark scary thoughts always dwell. Does anyone else feel this way? How do I just accept pain or any other symptoms is not related to cancer or really just stop being afraid that it is? I hate admitting it but since treatment my biggest fear is pain. What used to be mild is unsure to me now so I just opt for Motrin and i hate it.
Another thing on my mind is I am coming to the date where I get my port removed. This is something I am extremely anxious about as the date gets closer!


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  • I am so glad I joined this group, too!  It really is helpful, even just reading something like your post to realize I am not alone in these thoughts.

    I finished chemo only a month ago and I start my radiation in two weeks.  The day before I was discharged from the hospital for my chemo (I was inpatient for 4 days each chemo cycle) my oncologist who did rounds at the hospital told me that to not let this consume my mind, do not be scared everyday and go back to living life normally.  I had no idea what he was talking about because in my mind, I was going to be discharged without the thought of knowing in two weeks I had to come back to the hospital, what other thoughts would I have besides positive, happy ones, right?  So wrong!  I literally everyday think something is cancer in my body OR think something bothering me is the chemo drug still lingering doing harm to me somewhere ... its bizarre.  

    I've just been trying to work on doing things that make me feel good, and going back to living as normal a life as possible - in fact most of my life is normal now that chemo is done, I just have physical therapy and then when radiation starts I am going to make sure that just becomes part of my daily routine for the next few months.  Not that this is any help or advice, but just you are not alone in the way you are feeling :)  

  • Ajh9113Ajh9113 Community Member
    First of all Steven, I love that you are a Gilmore girls fan! I am obsessed and watched the series so many times. As for the fear, I completely understand! I have been in remission since July 2015, but that was the third time I relapsed with my lymphoma, so I constantly fear it will come back. I guess for me I kind of just try to forget I ever had cancer. If it comes back, the doctors will find it when you go for checkups anyways. So I just live my life as if none of it happened. I try to do the things I used to do and I try to fill my days with friends, family, working out, and keeping busy. There are times when I do go into depression for days thinking about it but then I try to go out and socialize to keep my mind off of it. Plus for me helping others go through it and talking with other survivors makes me feel like I got cancer for a reason.
  • ang2157ang2157 Community Member
    Hi Steven I am three months cancer free and just joined the site. I actually spent much of today looking into symptoms of reoccurrence. I had uterine Adenosarcoma. The fear is real but I think it's just part of our story. We survived Cancer so we can get through post cancer right? It's something I have to remind myself of everyday. Some days are better then others but that's what we are all here for. I too am obsessed with Gilmore Girls. In the middle of season two right now.
  • Ajh9113Ajh9113 Community Member
    Gilmore girls only gets better I think season three and five were my favorites
  • ang2157ang2157 Community Member
    On the last episode of season 2. Can't wait to start three bc I've heard it's one of the best.
  • Ajh9113Ajh9113 Community Member
    Yes it definitely is!! I have watched the series so many times plus Netflix is coming out with a revival series of like four 90 minute episodes with all the characters so I can't wait!
  • First so happy to hear about everyone's remissions. I'm 18 months in remission from NHL and worry everyday about when it's going to come back. My oncologist basically said that it will at some point. I have multiple sclerosis and fatigue is one of my biggest problems so I've never gotten any energy back following my chemotherapy treatment. I worry is it the MS or is it the cancer. I didn't have the normal symptoms of NHL prior to my diagnosis. I wound up in the hospital with what they say was pneumonia and that lead to me getting my diagnosis.I still have that same shortness of breath so I worry. I go every 4 months for follow up blood work. Oncologist says pet or CT scans are not recommend unless something changes in blood work or I start having symptoms again. I hate to be paranoid and ask for scan. I hate this stupid cancer stuff!!!!
  • Ajh9113Ajh9113 Community Member
    I actually was in the hospital on
    And off last summer and a lot of fall for pneumonia and relapsing in my cancer. But I get blood work every two weeks to be safe. Maybe get a second opinion about a scan. It can never hurt to be safe. As for the short breathe and fatigue....I definitely have fatigue bad it's just a side effect of all the chemo. I would just take a short walk every day or bike a little it will help to build your endurance and the shortness of breathe.

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