I'm Not a Survivor

By Katie R

2 min read

Since writing for this site, I think I have become a bit more reflective on me, myself, and I. Today, when making my breakfast, for some unknown reason the following popped into my head: I’m not a survivor. I don’t resonate with being a survivor. Because my diagnosis was never going to kill me.

This might be why I’m so anti all the ‘accepted’ language around cancer, which I know I’ve written about before and how much I hate it. It might all be because of never having to worry about dying from my diagnosis. It wasn’t a ‘bad’ one. It’s highly treatable. So I’ve never ‘fought’ it. And when people associate me with being a survivor I have a knee-jerk reaction in my head of NOOOOOOOOOOO THAT’S NOT ME!!!!! And I think that’s why. I haven’t had to survive. I’ve just kept on living. Kept on moving forward.

Cancer doesn't define me

I also think that I've been so determined, and don’t get me wrong, I by no means think that others aren’t, and this isn’t to take away from what others are going through. My writing is entirely selfish. It’s about me and how I feel and what I go through. I would never try to write any other way. To attempt to put into my words how others feel is not my place or my role. That’s for them if they want to.

So, being determined means that I won’t let my cancer, being chronic, and it being a part of my life for a third of it define me and my life. To be all of it. If I was a "survivor," that to me means that I spend all my time focusing on it and my treatment and my health. And I don’t. I don’t worry about my bloods or my leukaemic rate or what’s happening at a biochemical level. I just hope and assume it’s all ok. That the chemo is working. That I don’t get horrific fatigue. That I can carry on. So I don’t survive. I live, which to me is very different. Always glass half full, never glass half empty.

Looking ahead to treatment decisions

That might all change, of course, if I have a transplant. I’m 5 days into the new drug, and so far, it seems to be ok! I haven’t had a massive energy crash. Yes, I’m tired today but I have been really busy this week and as I haven’t been as exhausted as normal, I have definitely been going to sleep too late. But I’ve made it through the week ok! Tired is different to fatigue. Tired is manageable. I still feel like me, so I’m really hoping that this might continue and it’s not going to get progressively worse, and maybe just MAYBE I’ve found a drug that suits me. I know that if this is the case, my consultant will probably be absolutely ecstatic!

Time will tell. But I’m hopeful. Well, I’m very rarely not. It’s only when it’s really bad that I lose my hope.

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bluchs Member
I Pray that your diagnosis and cancer never end up as it has with me and so many others here? It pleases me to know you have such a positive attitude about this cancer, we all share? I on the other hand. I am a Survivor ! I read another article here a while back, and I found it to be true. I thought, that because I am Terminal, that I was not a survivor. But the article taught me that I Am A Survivor. And Yes Katie, time will tell? I too have at times lost hope, in fact right now it is hard to look ahead. So for me right now hope is hard. But I try to keep faith and I try to keep hope! For as for Me. I am a Survivor! May God Bless You and keep you with us.
1. Ann Harper Moderator & Contributor
 I'm sorry to hear about your prognosis. I have read that your beliefs are a powerful thing. Knowing your a survivor and trying to enjoy each day will help you to live the best life you can. I will say a prayer for you.
2. bluchs Member
 God Bless You Ann. Thank You for your Prayers
Ann Harper Moderator & Contributor
Good for you! I like how your looking at the glass as half full. Living your life and not stressing about cancer is definitely a healthy way to deal with it. Good luck to you. I hope your new medicine works well.
Crystal Harper Moderator
Everyone has such a different experience with cancer and it's so interesting to me to hear other people's views on it. I've noticed that some people get offended or bothered by certain words related to cancer while others are proud. I like your outlook on it though and I agree with what you said. I hope your new drug continues to go well for you!!
Carolyn B Member
I am more on the same page as you are with respect to the language around cancer, the cancer marketing machine... Cancer is WHAT I HAVE. It is NOT WHO I AM. I have had breast cancer 2003, Breast cancer the other side 2010, Follicular non-Hodkgin's lymphoma likely had since 1997, could have been diagnosed in 2010 except the facility blew off the enlarged nodes, B symptoms, low red count... was actually diagnosed in 2010 after years of having a dx of hypochondria, stress, benign (no biopsy) enlarged lymph nodes, early perimenopause... Since ER pos breast cancer can recur 20 years out I'd like to think I am cured, but in reality may not be. The fnhl is an incurable, indolent cancer. Cancer is a pain in the a$$, impacts my day to day life with energy, etc. but it is NOT who I am. Who I am is what I do. Sure having had and still having cancer that affects what I do on occasion, but it is still not who I am. I hate the war words like battle. That can imply you didn't try hard enough, or is otherwise somehow your fault if you relapse. Survivor is another word I hate. I had cancer and I still have it. Other serious diseases we don't identify them as survivors when we talk about their medical history. They had a stroke, they had a heart attack, they have diabetes or high blood pressure. Why is cancer different? I hate the marketing machine that goes along with cancer, especially breast cancer. I like pink, but not with ribbons on it. I do NOT want to wear on my sleeve that I have had breast cancer. I should not be branded for life because I had it (and who knows still may have it, although not all that likely since so much time has passed). The marketing machine should not try to make me feel guilty because I refuse the identity they are trying to fob off on us/me. I appreciate the nfl marketing machine as it does none of those things. I HAD cancer and with two of them and I still HAVE cancer with one of them. BUT things out of my control determine whether or not I will respond to chemo. I did not survive this. I lived through this and the luck of the draw determined whether or not I lived through it so far and will continue to live though it. There is a difference. Cancer is not who I am. It is what I have had and still have. And I "have" so many other things. I have a PhD, I have a kid, I have talents in a number of areas, I have students because I teach. Who I am is what I do with what I have and what I did. And the cancer vocabulary, labels, etc. are so very narrow. I live outside of those.
1. Carolyn B Member
 The Breast Cancer marketing machine tends to dominate in a large part because (1) those marketers are doing well what marketers are supposed to do, and (2) it is perceived as a women's disease (although men can get it too) and affects a part of their body that has been so sexualized by others. I think it has more attention for that reason as well. The fnhl marketing machine has nothing "sexy" associated with it (implied or directly discussed) to push to get attention so I think that is the other reason it isn't dominating in the same way (thus gets over looked more as do many cancers). Plus there are so many different kinds of cancer the public would freak out if all of them were doing what BC does. It's just too bad it affects funding/money raising thus research and support for patients and their families. Even kid cancers aren't pushed as much as marketers push the couple of hospitals that focus on kid cancer and parental finances associated with that. That's another hook that goes over well with the public and triggers parental fears. Yeah I know I sound cynical but looking at it from the marketing point of view these are smart moves for money raising even if patients can be stressed out over these actions and funding for research may be less equitably distributed across cancer . As far as how I am doing... the fnhl is on watch and wait. The second breast cancer that was ER pos (2010) may have metastasized. When I had an MRI for something else (well and 2 sets of C scans that noted "something" it came back as suspicious for an iliac bone spread. Have another MRI coming up for that as I figured if it was metastasized BC I was already screwed, didn't have anyone with me so not choice but to have a bone biopsy nothing other than numb the skin (nope nope nope that would hurt too much. been there done that with too many bone marrow biopsies that have "bone crush artifact" in them), so opted for another MRI in March and then a biopsy if needed then so this time I can bring someone with me (8 hour drive). The Ct scan contrast fluid (all of those due to fnhl) has damaged my kidneys and between the CT scans and contrast fluid I likely have thyroid cancer (4c/5) and it is being biopsied in June as they are presuming it will hit 1cm by then (the criteria for biopsy). At least the pancreatic IPMN's after more then doubling in size in 6 mo are stable so that has a 6 mo follow up. I decided I am going to for the record of how many major cancers can you get in 20 or so years (/s) Can't get different genetic parents this late in life. And the problem with running away from home is that you have to take yourself with you so that won't solve anything. (LOL) Good thing I worked in a number of countries in my 20's as I sure won't have the money for travel in the rest of my life. After about a 3 week emotional freak out in December with this mess I've gotten a grip again because what can I do? Although as I get close to the next set of tests, etc. I am sure I will have to deal with anxiety again. The emotional earthquake of cancer has plenty of after shocks. Sucks but I can't do anything about it. The one thing I have learned over time is how to pick myself up and keep moving forward even if I can't, at that moment in time, see the light at the end of the tunnel. And, as I said several years ago (that you responded to) cancer is what I have, not who I am. Who I am is what I do with my life. Dumpster diving I found a brand new hoe blood pressure machine that I gave to a free clinic rather than sell who then invited me to get some of my meds from them free (this state did not expand medicaid; clinic meets once a month). I saw all the people with no cars coming using the van sent to get them and so took the food people didn't want from their food boxes we get in hud I live in and started an informal food bank 3.5 years ago. Been the source of getting my hud water all the months last year we had no water or had boil water notices (in the arm pit of the nation, Jackson, MS, I believe we made national news over this - boil water notice right now too). I spend time finding people things they need. At least I feel useful even if I lost my job over all of this and haven't so far gotten another one. I do find helping others is helpful for my mental health and helps me feel like I am accomplishing something. I also dumb down science for some cancer lists I am on. Probably not the answer you were looking for and maybe too much information but I figure I am likely not the only one trying to find a path forward and find a way to put meaning back into my/their life after loosing so much. 
2. Angie Netterville Moderator & Contributor
 <inline-mention username="Carolyn B" user-id="3639643"/> it sounds like you are finding a way to help others AND yourself. Wishing you the best as you continue to navigate your health journey. Angie (Team Member)