504158EF91EAA8A27A35DB2FC810D5BC

I wish I were a survivor

From time to time I think about the words we use to talk about people who have cancer, especially metastatic cancer. There are several posts about this on my old site. One of my favorites is called Chronically Terminal Rumination. In that post, I wrote:

My problem with the terminology can be summed up like this:

  • I am not a survivor. I haven’t died of cancer, but there are secondary tumors at various places in my body. Active cancer.

  • I am not terminally ill. That is, I am terminally ill, but not in the sense of qualifying for hospice at this point.

  • I am chronically ill, but not in the sense of someone who has schizophrenia or diabetes or hypertension, in that I will eventually die of this chronic illness…

Last month was the tenth anniversary of my mastectomy and in a few days I’ll have a birthday. Sitting between those two anniversaries is making me a bit pensive. This has not been the worst decade of my life, but it is sure a long way from having been the best.

I am now sicker than I was at the beginning, save the chemo. I certainly have more pain, more fatigue. The fact that I am far more likely to die from this disease than with it is becoming more and more evident to me, more and more real.

So that leaves me with a choice, the choice of my attitude. I talked about this at length in an old post, Have I survived yet? Part II  (This one is also still on my old site because I haven’t migrated it yet.) I wrote that in October 2011, so it seems that my thinking on the subject hasn’t evolved in the past couple of years.

I choose my attitude over and over again. My usual course of action is to notice what I’m feeling, what is happening in my inner world, and consider it for a time. I want to see what I can learn from it. I want to evaluate it to see if I’m dramatizing or being over sensitive. I want to assess my behavior to see if I am blaming outside factors for something that is entirely in my control.

Having done all that, I choose to get on about the business of living. This is something I’ve been doing for many years now, and I’m becoming more adept at it. The key, I find, is not to deny my feelings, not to falsify a situation to myself or to others, to accept things knowing that that “acceptance” is not the same as “approval”.

All that notwithstanding, and without denying the fact that I am a fundamentally happy person, I still sometimes wish that I were a breast cancer survivor. But a wish is just a feeling and feelings are not the boss of me, so I don’t have to do anything other than know that it’s there. It does not have the power to take away my peace.

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32 Responses

  1. Tim says:

    I love the idea of “picking your attitude”. Before getting to know you and read your musings it’s not really a concept that would have occurred to me. I use it all the time now – even in little things – and it’s really empowering. Most people, including me, meander through life. But when you take the time to consider consider that you don’t have to be ruled by your own reactions, and that those reactions can actually be used for positive purposes, it allows you to take control of a situation.

    Just as one example, if your career isn’t going as you wish then don’t brood over the promotion you didn’t get – consider why you might not have got it (which isn’t necessarily to say it’s something you did wrong, perhaps the environment is wrong for you which is important to recognise), where you want to be, and what you need to do to make that happen. I use this kind of “gap analysis” a lot and reading your posts is one of the principal contributors to this:-). I’ve never been a laid-back type of person, and it’s rather fun learning to be and being so!

  2. Caroline says:

    I am not a survivor – I find the word to be a mere label and refuse to use it. I am someone living with two cancer diagnoses. I think you will find your attitude, or it will find you. And happy birthday!

  3. JSM says:

    A powerful statement. Thank you.

  4. margiehudson81 says:

    I have survived many things. The death of both parents. A life threatening car accident. My husband spending 75 days in a nursing home. My two younger children graduating high school. My daughter graduating college, getting married, having children of her own. So I am a survivor of those things. These things are done – therefore I am a survivor of them. I’ve always thought of the word survivor as one who continues after an end. I, too, wish you were a survivor of breast cancer. Because I have come to care about you, and I wish it were gone – ended. But, by the same token, with your mets, I realize that if it were gone, you would be as well, and I am in no hurry to survive that. Excellent post!

    • Knot Telling says:

      Sweet Margie, thank you for your thoughtful comments and kind words! You are a true “fearless friend”.

  5. Helen says:

    I think Living with cancer sounds about right… It is somewhere in between all the other terminology. Sometimes when I am writing I get all worried if I have used the right words or not!!! Within the cancer professional community when I am working as a counsellor we may refer to someone as having a Life limiting illness… But often the words Chronic illness are used.. Have a good week and Happy Birthday on the day… ❤️❤️

    • Knot Telling says:

      Thank you for “life limiting illness”. When it’s used does it mean that it limits life in its scope or its length?

      Yes, I sometimes get all tangled up in the words I do or don’t use when I’m writing. I don’t care for political correctness for its own sake, but words have power and should be used with discretion!

  6. Maxine D says:

    I too am so glad you are still living, mets and all, uncomfortable though that is for you ( I suspect that uncomfortable is a gross understatement!!)

    Yes, we can choose our reactions, and choose to change our attitudes, too, which has made me a much easier person to be around than I was once. It is not necessarily the easiest choice, but the pay off is beyond comprehension when we start the changes.

    Prayers and gentle cyber {{{{{ Hugs}}}}}
    Maxine

    • Knot Telling says:

      I absolutely agree with you: “It is not necessarily the easiest choice [to change our attitudes], but the pay off is beyond comprehension…”

      Thank you!

  7. mae says:

    It takes a great deal of inner strength to choose your own attitude in some situations. I am humbled and in awe by such strength.

    • Knot Telling says:

      That’s very kind of you, mae, but don’t be too awed. The times I stumble and fall are many!

      Thank you for reading and commenting.

  8. dear TK,

    you make a very powerful impact with this post. I think it will help so many people, not just because you have given yourself permission to choose the attitude with which you wish to live your life, but also because you have shared a very powerful message – one of exacting introspection in which you closely examine your thoughts and feelings about what is happening, see what you can learn from them, take the time to consider and ponder where they are coming from, assess whether they are driven by internal or external sources, and decide if they are things out of your control or within the scope of what you might be reacting to. you have fleshed out the whole process so eloquently and help us to see that we do have a choice in how to frame out attitudes about life-altering events; and i Iove that you express that this process is one of fluidity for you. and I also appreciate being reminded that feelings are not the boss of us. feelings are important when we feel them,, but we cannot live fully and well as we are able if we allow them to dictate our lives. I can’t thank you enough for sharing in such a detailed manner of how much better our lives can be enhanced by taking the time to invest in the process you have described. I will be holding it all very close to my heart, feeling empowered and encouraged by you, as I walk this unexpected path of widowhood and grief, of balancing the ravages of two cancers, and trying to find the me that’s been lost in all the fall-out. thank you, TK. I love you, my Dear One. HAPPY BIRTHDAY!

    much love and light,

    Karen

    • Knot Telling says:

      Wow, I did all that? 😉

      Thank you for parsing my ideas and explaining them so cogently. I am glad it’s helpful for you.

      It is a very difficult path you are walking. I wish I could carry some of the pain for you.

  9. Agnes P. says:

    Knot, I don’t think that you realise how many people you help through your choice of words, your friendship, your wit. People who have even no cancer.
    Your cancer has maybe been a chance for us all to access all that because you wouldn’t have created this blog otherwise.
    You are not a survivor, you are the creator of your own cancer because of what you’ve made of it for the benefit of us all.
    Please don’t misunderstand me, I obviously don’t wish to “make cancer beautiful” or “poetize cancer”. I just wish to honor you because you deserve it.
    And don’t say “no, I don’t”. No is not an acceptable answer. 🙂

    • Knot Telling says:

      Thank you for being so kind, Agnes!

      Can you tell me (maybe in French) what you mean by “you are the creator of your own cancer”? It does not sound very good in English! I’m sure it got lost in translation, as we say. 😉

      Silly girl – of course I don’t deserve any honor. When there is nowhere to go but forward, you just go forward.

  10. Gail says:

    Me too! Too bad the pancreatic cancer marketing people didn’t use that (“I wish I were a survivor”). Because that is probably what they meant. They didn’t do the research to understand how pink-washing has misled the public into thinking breast cancer is largely survivable. I agree with your thought as I share your journey … 10 yrs into bcmets and it is becoming more real… More pain, more fatigue, more tumours popping up. What choice do we have attitude wise? Being miserable doesn’t seem like a rational choice, hey? Wishing your more good hours than bad each day! That’s what I wish for myself!

    • Knot Telling says:

      Another ten-year veteran. “More pain, more fatigue, more tumours popping up.” Yes, exactly. And this: “Being miserable doesn’t seem like a rational choice, hey?” No, it does not.
      Sometimes instead of “living with cancer” I feel like I should say I’m “slogging along” with cancer.
      Thank you for reading and commenting, Gail!

      • Gail says:

        Yes, slogging along fits very well to describe most days! Overdid it on the weekend, paying for that now. Oh well, it was fun!

  11. There are just too many darn labels for my liking too. I’ve never really embraced the survivor label either, even though I do use it from time to time due to a lack of a better choice. When you’re living with mets, I imagine the labels become even more ‘unfitting’ (and annoying) for a whole host of reasons. I agree to a point that a person can choose her attitude, but as you said, first a person needs to acknowledge her true inner feelings. I love the way you always do this. With your honesty, you inspire with each and every post you write. And yes, slogging along with cancer isn’t a bad description. And no, acceptance is not the same as approval. Thanks for sharing your truths once again. xxx

    • Knot Telling says:

      It is always so encouraging when someone really “gets” what I’m trying to say. Thank you, Nancy.

  12. Carolyn says:

    I love your words… 🙂 I keep trying to figure out how to do that, get on with the business of living… every time I figure I have somehow grasped the concept, on whatever small scale available, my mind messes me up once again. The labels tend to piss me off so I try to ignore them when possible. So, I’m going to “choose my attitude”, I love that. I can’t choose how this disease will progress, but I can choose my attitude… Slogging along, with attitude. 🙂 Thank you dear Knot… you rock… Happy Birthday! xoxoxo

  13. Susan Zager says:

    I thank you for speaking your truth. I think there’s something extraordinary about your approach to life. Like you, I can choose to get on with the business of life. I now realize, “accepting” what is happening around me doesn’t mean I have to “approve” of it. I am really down about people dying around me from “mets” and then there are my fearless friends living with mets.
    I went back to read what you wrote in 2011 that got you thinking about survival where I laughed reading the following:
    “It is usual to talk about “cancer survivors”. People survive war, natural disaster, physical and psychological trauma. No one survives life. (Yes, that’s a joke. It’s okay to laugh.) So tell me: Have I survived yet?”
    You have to go with your feelings and if you don’t feel like a survivor, your feelings trump any logic. Like Nancy, I appreciate that with “mets” the word survivor doesn’t resonate with you. The word does not bother me the same way, especially because everyone keeps telling me that I am supposed to have a “survivorship” plan. I guess I don’t know what better word to replace it with. Yet I totally appreciate where you are coming from and respect your thoughts.
    You have me thinking about a lot with this post and it took me a while to put my thoughts together.
    I can’t believe this is your tenth anniversary of living with cancer, but I am sure glad you that you are living. KT you are very special to me and I value your friendship. Thank you for always expressing your thoughts as they are. Hugs and xoxo – Susan

    • Gail says:

      What the heck is a survivorship plan? Been living with bc mets fit ten years. This is a new one to me! Pls elaborate. Curious how we are to have a plan to deal with so much uncertainty?

    • Knot Telling says:

      Thank you so much for your friendship, encouragement and support, Susan.
      Learning and internalizing the difference between “accepting” and “approving” was a game changer for me.

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