September 4th is right around the corner. It is Childhood cancer awareness day. 41 years ago I was diagnosed with stage 3B Hodgkins. I was 7 years old. I was a guinea pig on experimental drugs while suffering from shingles and then viral meningitis. My years of treatment included radiation and chemotherapy cocktails created from the same serum mustard gas used in WWII, and the Pink Periwinkle flower from Madagascar. Cancer treatment was archaic in the 70s. Brutal. I watched all of my little Leukemia and brain tumor friends die. I am the only child who survived our group.
I was left with huge physical and emotional scars. Radiation left me sterile. I never went through puberty. My teenage years were hell. I was pulled out of P.E. and got breast implants at age 16 because teasing was so bad. At age 21 I was diagnosed with Thyroid cancer. At age 46 I was diagnosed with kidney cancer in both kidneys. I suffered renal failure. Both kidneys were removed. I spent two years on dialysis. It was no way to live. Two and a half months ago my husband gave me his kidney for our 24th wedding anniversary. It is such a blessing, but I am still struggling. It is still a fight. Slowly, there is progress, but I find myself re-living the haunting memories of my past. I try to be strong, but I am not. I am the terrified child inside.
So the next time you are tempted to tell a cancer survivor to “Get over it,” remember that it is never over. The side effects of childhood cancer never end. They are decades long. They creep up and blindside me. Again. And again. And again. So please get over your discomfort when cancer fighters and survivors must talk, must weep, must grieve. We are broken. Often shattered. It takes an uncertain amount of time for us to pick up the pieces of shard and rebuild our lives. Your thoughtless words only add to the emotional scars we carry. Please spend less time trying to shut us up, and more time spreading the hope because your friend, your co-worker, your family member, or the love of your life survived.
I am still here. I am surrounded by the most precious guardian angels that went before me. They are etched in my memory forever. And some day, when it is my turn to go, I will embrace them with tears and laughter. I know it.
No words…..just tears, and an unending hug from me to you til the end of our days!!! I love you Lara 😘
I don’t know who you are, but I feel your love and I am hugging you back!
You and I sound like we could be “cancer related.” I was diagnosed with rhabdomyosarcoma 37 years ago, and have had similar late term effects. I had kidney cancer, was on dialysis for 3 years, 3 months, and 3 days before receiving a kidney. I’ve dealt wit severe gastrointestinal issues that have left me unable to work.
Like you, however, I do know that I am here for a reason and have felt those guardian angels when I’ve needed them.
Thanks for your blog, it helps so much to read about other people having the same issues. We’re not alone!
Amie, I want to reach through the computer screen and grab you. BYU grad 95? I was 94. I should have graduated years before, but I served a mission, worked full time a few years and took my time “figuring out my life.” A million thanks for sharing. I still want to grab you. God answers prayers. Sometimes it feels like FOREVER… but he does! xoxoxLARA
I am also a survivor of Stage III-B Hodgkins. I was 23 when diagnosed and went into premature menopause due to the chemo that saved me. I was pregnant when diagnosed and had a legal termination of my pregnancy after being told my child would not survive the necessary treatment and I would not survive if treatment didn’t start immediately. Survivor’s guilt is terrible, and how I hate the “anti-abortion” propaganda that I see and hear in the media almost daily… But, your article also pointed out the struggles of surviving children. Thank you for posting this. I’ve never been told to “get over it” where my cancer was concerned because I did go into remission and I miraculously had a son after menopause. Your title says it all and it is never over. Since my diagnosis I’ve lost several friends and family members to cancer and others have battled cancer as I did. It’s never over. I pray that in our lifetime we will see a cure for ALL types of cancer, but for now, it’s far from over.
Kristi, First of all, what an honor to hear from you. I have spent 40 years feeling alone. Your story breaks my heart and brings me to tears. I cannot imagine the grief you must carry. It pains me when some chastise cancer patients for survivor’s guilt. It is real, and it should not be swept under the rug and ignored. You are courageous and brave – for so many reasons.
You and I both are surrounded by guardian angels – our friends and loved ones. No one can tell me otherwise. I know that we will see them again. And I know with my entire heart and soul that you will be re-united with your child. Until that day, may god bless you and your son and your family. love, Lara
My daughter just finished 2 years of treatment for infant leukemia (diagnosed at 10 months). Your words ring powerful with us, thank you for opening up about your experience. We know that her cancer journey is not over, instead she is starting a new chapter.
Matt, your FB page is beautiful and inspiring. I am following. To your daughter’s sweet face touches my heart. There is so much hope. So many breakthroughs have been made. My love and prayers and hopes go to you and your little one. Thank you for reading my story. More importantly, thank you for sharing yours. I know my little friend, Andy, is smiling from heaven. God bless you and your family. Lara
I also was diagnosed with Non-Hodgkins Lymphoma at 9 years old in the 1960’s. I had the same mustard plasma, methotrexate, venecristin and cytosin. I was lucky to have a period at 16, 2 successful pregnancies and will be celebrating my 58th birthday in December. During heavy chemo at 12, I went thru a glass storm door and almost lost my right arm. The Doctors weren’t happy about that. Had a hysterectomy at 36.
The Philadelphia Children’s Hospital saved my life.
I too saw many kids pass from Leukemia.
I also didn’t understand what was going on or why. Started asking questions at 18 and got answers.
Had anxiety attacks going in the neighborhood of the old Hospital, which is no longer there. At one point got sick on the train going to Philadelphia and didn’t know why, until I realized it was psychological.
I have sense been able to go to Philadelphia now with no problems.
Pat, Recently is has been reported that childhood cancer patients suffer from PTSD. What happened to you on the train and while going past the old hospital grounds is proof right there. As a child I had night terrors and nightmares that are Hollywood worthy. Insomnia was horrific in high school and has reared it’s ugly head again today – psycho meds don’t help, am I right?
I served a mission for my church in the Philadelphia area in 1989-90. While I was there I was diagnosed with thyroid cancer and had it removed out there. While doing research for my novel I went back to the hospital in San Diego where I had lost all of my friends. I walked the halls and re-lived it. I can tell you that it was chilling. It anyone doubts your experience, you can tell them that I agree %100. The fear is real.
Thank you for taking the time to read my story, and even more thanks for sharing yours. I can say with certainty that you were one of the pioneers that saved my life. I am honored and humbled to meet you. The next time you are in Philly, please have a Philly pretzel and a Philly cheeses steak for me. God bless you sweet angel. xoxo Lara
I am a 28 year ALL survivor and I completely agree.My suposed ‘cure’ only led to a curse of consecutive medical issues worry, stress and that unending fear of what could possibly happen next? People pat me on the back tell me congrats and generally cheery that Im ‘alive’ but I have been dead inside shortly afer they told me I was in remission.
Ravyn, We all deserve Oscars and Emmys for the performances we give. And feeling like the walking dead? You are not alone. You are welcome to visit my FB writer page. It is for fighters and survivors like us. We are warriors – love the art on your FB page. You are the superhero!
[…] Source: I Am a Childhood Cancer Survivor Forty Years. It is Never “Over.” […]
Reblogged this on The Blind Girl Project.
Thank you for sharing my story. It means a lot to me.
Thank you for writing this. My daughter was diagnosed with medulloblastoma over 18 months ago. Her tumor is stable right now, but I’m not only terrified of it growing or coming back but also the other cancers she could get from the chemo down the road and organ failure. She has already lost most of her hearing and her eye sight seems to be getting worse. And we are really lucky compared to most of our other brain cancer buddies, even the ones that are still alive. The one thing that has surprised me the most over the last 20+ months is how insensitive some people are- almost more insensitive than when life was less insane. I hope you find as much relief from your pain and grief as possible. May you have many more happy days of life. <3
Thank you for your courage to fight decades before my daughter had to. Her chemo was horrible, but I am convinced it was better becuse of the people who underwent studies and drug trials. Katie was in a study, but it did not include any new drugs, just different doses and protocols. The purpose was to see if “delayed intensification” could increase remission rates in patients. Katie did not have any more adverse reactions than any of her peers in treatment, but the side effects she had were very bad.
The people who participate in studies do help to make future treatment protocols more tolerable?
My daughter did not just survive cancer, she lived her life while going through treatment. She does talk about what is was like going through treatment. This was three years of her life while she was in elementary school. This took place during her formative years and will be with her forever. We have found that people admire Katie for her courage, strength and the fact that she excelled in school in spite of her diagnosis and treatment.
Great article. Insightful and moving. It echoes my own
situation. I had cancer twice as a young person. As you say so well, cancer is not over for me now that the illness has succesfully treated. I have many challenges to address every single day. I must look ok to people but that is like a mask. The problems are all hidden.
However please remember to take pleasure in the smallest of things. Whether it is the birxs singing or the memory of a good joke well told. Do not let cancer be all of you. Yes it is a part but not everything. I cant say accept it because that would be hypocritical. I fight everyday. Cancer has restricted me but im determimed to hold to my nantra of ‘do what you can when you can’ That is grab each oppurtunity when you are able to but when you cant dont beat yourself up about it.
I hope that everyone who has posted here has the chance to move on.
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