The cancer's gone but the battle isn't over..

hmcclae_98
hmcclae_98 Member Posts: 3
in Emotional Support #1

Four days after I graduated high school, I was diagnosed with stage 4 Hodgkin's Lymphoma. I was 17 years old and had no idea the hell that I was about to endure. Although HL is extremely curable, mine covered basically my whole entire torso. It was as bad as it was going to get before it took my life. I had tumors covering my lungs, I had cancer in 95% of my spine, I had it in my hip bones, I had positive nodes up by my clavicle, and I had it in my colon. When I began treatment, I got really close with another girl fighting cancer. At the time I began my treatment, she had just gone into remission. I had heard her name throughout the community but before I got sick, I didn't want to reach out to her because I didn't want to seem like a phony person. She reached out to me when I began treatment and we got really close. We never actually met in person but we had the same pediatric oncologist that we shared the same amount of 'hate' for. (Although I've come to realize I absolutely adored her and she was a Godsend.) Mia and I talked almost every day and we shared the same fears and anxiety about scans or doctors appointments or pains in random parts of the body. Unfortunately she passed away just a couple short weeks after I was sent into remission. She had stage 4 alveolar rhabdomyosarcoma. Ever since she passed, I've had no one to voice those emotions too. I have a great support system, don't get me wrong. None of them truly understand the thoughts that went through my head every single day. None of them saw things from my perspective. None of them sat in a doctor's office on their very first Monday as a high school graduate and heard that they had cancer. 

It's selfish of me to only want to voice my feelings to people who understand it but at the same time, I've spent so much time talking about my cancer to people who can only give me the generic responses we've all heard, far too many times. After a while, I can't hear any more "it's okay's," or "I'm sorry you went through that." I need someone who knows what I felt. I need someone who felt those same emotions and someone who I can share those experiences with. 

I've been in remission for 2 years now; just a little over. However, I have not even began the healing process. The reason for that? Because I haven't even started to accept what happened to me and what hell I endured physically and emotionally. Does anyone else feel this way? Everyone thinks that since the cancer's gone there's no reason to check up on me anymore or that I'm doing okay or even that I'm blessed... and don't get me wrong, I am SOOOO blessed to be here. I lost my best friend and a baby cousin to this AWFUL disease so I am beyond blessed. But I'm not okay and I'm not sure I will be for a while. There are so many emotions that I experienced that I need to sort through and make sense of but I don't even know where to begin. 

The cancer may be gone, but my battle is far from over..

Comments

  • KCFlash
    KCFlash Member Posts: 23
    #2
    Depression after treatment

    I have been so depressed after my last radiation/chemo and I too feel I have no one to talk to.   Don't get me wrong my support system is great, but none of them have gone through cancer so it's difficult for them to understand.  Right now I am cancer free, not sure if I will have more treatment or not I will find out next month.   I have been in the hospital so much in the last year I don't want to be in the hospital any more.   

  • janaes
    janaes Member Posts: 799 Member
    #3
    Hmcclae,

    Hmcclae,

    Im sorry you lost you close friend to cancer. I was diagnosed with hodgkins desease over 20 years ago at the age of 20. A little older than you. It sucked though. I was in college and working and ended up giving it all up for a time. Mine was stage 4 also but mine was just in my chest area. It was large ( football size). My story was scary because i had no symtoms other than i breathed funny which i never went to the doctor for. Mine was found because i was in a car accident and when given an xray they found it. I feel very lucky. Ive thought about it at times and realize i would be dead if it werent for thatbaccident. The cancer was probably there for quite some time

    I do get the idea that people dont understand unless they have gone through it.  I had a boyfriend at the time. In fact he was with me in the accident. Eventually our relationship died off. He tried i think but really didnt know how to act around me any more. 

    Well again im sorry you lost your friend. May you go forward and have a happy life. Its hard to get cancer at a young age. I feel like i connect with elderly people because of my cancer. 

     

  • CARebelHeart
    CARebelHeart Member Posts: 2
    #4
    Amen Sister!

    You said exactly what I've been feeling recently.  I finished my last chemo session 6 weeks ago and am recovering from a bilateral mastectomy right now.  When I was going through chemo people always wanted to bring me food or groceries even though I kept telling them I wasn't really eating.  People wanted to celebrate after my last one before I went into surgery, but I didn't feel so excited about it.  I don't know what I felt, maybe dumbfounded, but definately not celebratory.  Now that my surgery is over no one really checks on me.  It's like it's over so no more caring.  All I want is company and friends.  This by far is the worst part and everyone ditched me it feels like.  I read that going through this process will give you PTSD and I totally agree with that.  Fighting through chemo and surgery was just what to do, now that I face further treatments and decisions on which way to go with them, I'm more stressed than ever and no one really gets it.  I totally agree with you on not wanting to hear the pity responses anymore or just uneducated opinions.  Not their fault, I never expected to have to learn this much about cancer either.  So hey, if you don't feel like people get you, I get you.  We get you here.  :)  And yes I'm blessed also, but sometimes it's good just to hear this freakin sucks and it's BS.  Take care and be kind to yourself!

  • vwalker99999
    vwalker99999 Member Posts: 2
    edited March 2019 #5

    Hi,

    I found out that I had Endometrial cancer at the end of 2015. By the same time the following year I was considered cancer free. A lot happened between those dates. Radiation (external,) radical hysterectomy, more radiation (internal,) urostomy and all of the other issues that can occur from radiation and surgeries. It was a very rough year and I spent a LOT of time in and out of the hospital. In the end, I got through it.

    I spent the next 2 years trying to get back to my life which had it's own difficulties to begin with. Diabetes, morbid obesity, sciatica, ambulation issues and at the bottom half of 2018 a ruptured disk in the lumbar region of my back. For all of my problems, I found solutions. That's what I do. I manage. I am a champion problem solver. AND I have great help in the form of an older sister and a dear friend. Currently I am being seen by an in home physical therapist and visiting nurse. I am trying to get some mobility back. Life is moving forward. I have survived. Gyn/Onc says I'm going to live a long time. Fingers crossed.

    So, why am I suddenly overwhelmed with these deep feelings of grief? I am one of the lucky ones. Why do I feel so intensely aware of what cancer took from me? It's not my removed parts or my sense of femininity. It is a little bit missing my feeling of independence. I don't like needing ongoing help. I don't like how difficult it can be to deal with some of the fallout that followed radiation. (Urostomy bags can and often do leak no matter how well you apply them and multiple surgeries have left me with a surgical hernia which means I have to be careful how I bend and twist.) But I was handling all of those things. Like I always do. One foot in front of the other.

    This sadness is different. I am feeling utter loss. Because cancer did kill me. It killed pre-cancer ME. I am altered. I guess it just took me this long to understand that there is no going back to who I was B.C. Before cancer. And I am mourning.

    And I guess, like you said, hmcclae_98, the battle isn't over.

     

  • vwalker99999
    vwalker99999 Member Posts: 2
    #6
    KCFlash said:

    Depression after treatment

    I have been so depressed after my last radiation/chemo and I too feel I have no one to talk to.   Don't get me wrong my support system is great, but none of them have gone through cancer so it's difficult for them to understand.  Right now I am cancer free, not sure if I will have more treatment or not I will find out next month.   I have been in the hospital so much in the last year I don't want to be in the hospital any more.   

    I feel ya... BIGTIME!!

    "I have been in the hospital so much in the last year I don't want to be in the hospital any more."

    Boy, oh boy do I understand that statement. The idea of going to ER or, worse, being admitted can reduce me to tears. Super ugly tears. 

  • annie4145
    annie4145 Member Posts: 218 Member
    #7
    I never thought I would use

    I never thought I would use anti-depressants.  I was always pretty happy, and even when I wasn't (going through some tough times, divorce etc.), I was always optimistic about better future.  Then cancer struck (stage 3).  I went through chemo and radiation.  Now 6 months out of treatment.   But about 3 months after treatment, I remember sitting on the beach at Pismo beach, basically realizing that I was happy to be there, and recognizing life is good, but still so sad that I felt like crying.  I think that for me anti-depressants are helping manage what must be a chemical reaction in my brain.  I don't understand it, but recognize that it is a reality for me.  It could be part PTSD, part worry, part recogning how short life is, etc, etc. etc.   I got a therapist at the hospital where I was treated.  She was so good.  When I said, "I don't know why I am depressed.  Everything in my life is back to normal, I should be happy."  She said, you are sad for a reason.  You have to acknowledge what you are feeling, and what you have gone through, and that there is a real reason your are feeling sad." 

  • Cacho50
    Cacho50 Member Posts: 4 Member
    edited November 2020 #8
    annie4145 said:

    I never thought I would use

    I never thought I would use anti-depressants.  I was always pretty happy, and even when I wasn't (going through some tough times, divorce etc.), I was always optimistic about better future.  Then cancer struck (stage 3).  I went through chemo and radiation.  Now 6 months out of treatment.   But about 3 months after treatment, I remember sitting on the beach at Pismo beach, basically realizing that I was happy to be there, and recognizing life is good, but still so sad that I felt like crying.  I think that for me anti-depressants are helping manage what must be a chemical reaction in my brain.  I don't understand it, but recognize that it is a reality for me.  It could be part PTSD, part worry, part recogning how short life is, etc, etc. etc.   I got a therapist at the hospital where I was treated.  She was so good.  When I said, "I don't know why I am depressed.  Everything in my life is back to normal, I should be happy."  She said, you are sad for a reason.  You have to acknowledge what you are feeling, and what you have gone through, and that there is a real reason your are feeling sad." 

    Me either - seriously

    Hey Annie. Not sure if you ever check this anymore, but in case you do... I never thought I would use anti-depressants either. Seriously. After I finished chemo and radiation for Non-Hodgkins Lymphoma in 2010 I spent the next 3 to 5 years in a daze, my nerves fried, so my depression and PTSD didn't kick in until year 6/7 of remission. I'm now 10 years out and really suffering. I have been to some great therapists and now am on these meds that my shrink gave me because I couldn't handle the PTSD anymore. It's so real and so obviously related to my cancer and treatment. I feel like a completely different person post-illness, like there are still parts of me I recognize but I was a vigorously active healthy guy, and now I'm 49 but feel like I'm 90, and suffering all these emotions I never had pre-illness like helplessness, intense PTSD, depression, and shame. Shame for having gotten sick, and shame for being cured and not being able to get back into regular life and "grab the bull by the horns" as it were. I've been on a journey these past years trying to heal my psyche and it's been a journey. CBT, EMDR, SSRI's, etc. Now I am seriously looking at alternative therapies like Trans-Magnetic Stimulation, Psilocybin and Ketamine. Studying them carefully because I don't want to try anything for the sake of trying it. But I'm really at my wits end. Not sure where you are in your journey, but I could really benefit from talking to fellow long-term survivors who are cured, and have struggled with PTSD/Depression post-treatment. Anyone reading this who fits the description of suffering ptsd/mdd years past treatment, please feel free to reach out. Strength and peace to us all.

  • Abby76
    Abby76 Member Posts: 18 Member
    #9
    I know exactly where you are at

    I am in the same place.  I am 2 years out of cancer but emotionally I am a wreck. Always worry what next will I ever feel normal again.  The chemo I had caused me a lot of fatigue so alot of the time I don't even feel like I have the energy to try and help myself.

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