Inevitably, at some point during the day, I'll remember what I went through. It's often triggered by the scar on my upper thigh. I have two scars, but the one on my lower leg doesn't bother me much. I can't say why the other one does -- there are several reasons, I think, but none of them easy to explain. Some days it feels sore and acts up while I'm walking around or sitting a certain way. It's hard to forget about something that causes you physical discomfort.
Tell me your least favorite thing about what cancer or another condition has done to your body. Also, tell me if the scars ever heal -- physical or mental. I struggle with a few particular things related to survivorship, and I want to know what other people think about, and what sort of questions or doubts everyone else obsesses over. It would be nice for me to have an honest conversation about the kinds of things I worry about. At the very least, so that I can admit them to myself. And at best, so that someone can assure me that these things are real, and that it's okay to think about them.
Maybe we can help each other.
Kevin - rest assured those feelings, concerns, obsessions are real things. I had Hodgkins Lymphoma at age 27 - Stage IV, with poor prognosis. I made it through the worst treatments anyone can imagine - unless they already lived it. I tried to put it behind me, as I was a young woman with a lot of life to live. But I still thought about it everyday. My reminder was no doubt PTSD and physical scars and body changes. 23 years after the HL, I developed Stage III Breast Cancer. That was 7 yrs ago. I lost the person i was before the BC. Mentally and physically. I have been plagued with late effect side effects from the cancer treatments for both cancers, resulting in heart disease, scar tissue restricting lung capacity, and severe nerve damage. I am physically a fragment of the woman I was in mid 2005. Therefore, I am reminded every day that I am different. I miss taking long walks, landscaping, gardening, swimming, snorkeling, throwing a ball, hitting a basket, climbing stairs, working, friends, and the ability to travel alone. I have become dependent. Losing my independence sucks. I physically have severe nerve pain every minute of every day. I've lost the ability to use my right arm/hand - all due to cancer treatment side effects. Overall, cancer in my life, hurts, makes me angry, sad, frustrated, exhausted. Do I still enjoy life? As best i can! It's the only one i got. Does this darkness of whats coming next in my well being plague me every friggin' day? Yes. Am I able to adjust? Resistance would indeed be futile, so, yes. Does that make me a Borg? No. I would rather be a Klingon.
ReplyDeleteI really like your reply. And thank you for the Star Trek references, I'm a huge nerd at heart. I find a lot of things comforting about your experience, and I very much identify with pieces of it. I was 25 when I was diagnosed, and I'm 27 now. Since I currently have no evidence of disease, I like to think I have a lot of time left, but I'd rather think about what I can do to fully utilize that time. Your courage and adaptability are very inspiring, and help me to realize that we are resilient because we have to be. Life moves forward regardless of how we feel about our circumstances. I think that helping out as much as you can, and enjoying yourself while you do it are probably the most important things someone can do. And you seem to be doing both those things, and I think you're a great example of someone who knows what's important.
DeleteKevin, I was diagnosed with melanoma at the age of 33. I am eleven years to the day post diagnosis and I am much like you. I remember that I am a survivor almost every day now. It used to be every hour. Even every minute some days. My surgical scars are in public places on my body. One is on the back of my left hand. I cannot avoid it if I tried. It is a constant reminder of what happened and how far I have come. The mental scars are another story entirely. And they are one that only a fellow survivor can understand. The fear of the cancer returning is the biggest one I deal with. And it is so common among survivors. But some of the mental aspects of surviving are good. I rarely lose the unique perspective that I gained from my diagnosis. I appreciate life and all the little things and the people around me and the special moments so much more now. And I let unimportant things go easier now. I am blessed with this perspective. It was hard-earned. From reading a few of your blog entries, I feel like you have gained this perspective as well. Consider yourself blessed for this, and know that you are not alone in your struggle with the scars left behind. I promise.
ReplyDelete11 years! That's great! Thank you for reaching out. And you're right -- some of the mental aspects of surviving are extremely positive. I feel like it's a very enlightened perspective you gain, but you have to nurture it, otherwise it will fade. Thank you for saying that you see it in me; that means a lot. I'm in a very good place now, after a long struggle with believing that I'd never be "normal" again, or experience "normal" things. And this is a great community to be a part of. Everyone knows exactly how you feel, and what to say to help you figure out the hard parts.
DeleteI have Crohn's and my scar is a lump on my wrist from a bad IV. Physically it hurts if I bump it, and it makes wearing a bracelet impossible but other than that it's not that big of a deal. But it's a constant reminder of how I almost died and a constant reminder that this disease will be with me until I actually die. Some days it reminds me that life is no longer the same, I can't eat any of the foods I did before, and I now pop over a dozen pills a day. But the same is true for the benefits. I was separated from my husband and since then we have gotten back together and are happier than ever. It also is a reminder that life can be whatever we make it, and honestly my life is so much better since being diagnosed with Crohn's. I am grateful for my life and I am going after all the dreams I've had and almost let slip away. For me Crohn's gave me a such a wonderful outlook on life, I don't look at it as a horrible disease but as a reminder of how wonderful life can be if you are open to it. But thinking this way makes me feel silly almost. I imagine other people have went through so much more than me, and here I am saying I had this break through moment or something. I think the problem lies between what we feel, and what we think we should feel. They rarely equal the same thing.
ReplyDeleteLisa, that's a beautiful outlook. Go after your dreams! I feel the same. Having your life threatened is one of the most clarifying things that could happen to you. I also feel guilty in terms of how I feel versus how I think I should. I'm actually glad to hear that from someone else, so that I know it's normal. Thanks so much for your comment.
ReplyDeleteI feel differently about my scars now at 45 then I did when I first got them at 35. I used to hate them because they where ugly. A long one across my throat like someone had tried to behead me and failed. Several across my chest. A couple of newer ones on my stomach. Gone where the days I could confidently wear a bikini to the pool but with melanoma I shouldn't be going poolside anyway. In reality I have learned that everyone has scars from different things that have happened in their lives, even if they can't be seen as easily as mine. "Scars from the monkey bar's of life." The longer you live the more of them you will get. I display mine proudly now because they are badges of honor telling my story of all I have survived. Natalie
ReplyDeleteHi Kevin, thanks for your posts. Although we very on one important element - I have not survived cancer, I feel that our journeys are very similar. In 2010, at the age of 29, with two small children at home, I was crushed by a boulder, while camping. Long story, but i faced amputation several time, not to mention near death surviving getting to a hospital from the remote area it happened in. I have had 8 surgeries, and extensive (10mths) antibiotic therapy to deal with infection from the lake water.
ReplyDeleteAs of today, I am healthy, fit and have full function of my leg. I face the possibility of spontaneous reinfection and the massive fallout that would follow everyday, but otherwise very few issues.
For the first two years after my accident, I felt only two emotions. One was overwhelming gratitude, and the other was extreme guilt for putting my family through all they had endured supporting me. I went years talking, talking and talking about the accident to almost anyone who would listen. It was just ALWAYS on my mind. I have had over 400 stitches in my leg, so yes I had physical scars too that triggered memories. I felt like I didn't have the right to feel anything else but gratitude for my ultimately, spectacular recovery.
I had no idea how much I was emotionally suppressing until I saw a counselor, who diagnosed me with PTSD. After several months of counseling, the intrusive thoughts stopped (thinking about my accident), the panic attacks slowed almost to a stop. And more miraculously, my ordeal started to stop defining who I was. I stopped thinking about it several times a day, it stopped being my go to topic of discussion.
All I can say is please seek help to help heal your emotional and psychological scars. Sometimes we (and the healthcare system) focus so heavily on the physical healing, completely ignoring the psychological issues, leaving us with an unwelcome white elephant in our head space.
I can tell you, I know look at my leg and the scars that runs down it, and it is just my leg. Not a horrible story attached to me by my scar.
Take care of you, and thank-you so much for sharing your journey with the world.
Amanda
P.S. I'd also like to recommend the book "Surviving Survival". Fantastic read.
Amanda, thanks so much for sharing. I greatly appreciate your concern. I'm doing well these days, and I definitely suffered through some PTSD myself. I saw someone for a while, and had a great support network to see me through (and still do). These days, I'm looking very intently at doing my best to give back. And I sincerely thank you for doing the same. Your story is inspiring.
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