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Of course I'm grateful to be alive, but...

Of Course I’m Grateful to Be Alive, But…

Recently Dear Hubby and I met with another specialist (I don’t keep track of the number of docs anymore) to consult about an upcoming medical procedure I will soon be having (no worries, minor surgery). Is this yet another procedure to add to my personal domino effect lineup? There’s no proof, but probably.

But this post isn’t about any procedure or any particular domino…

No, this post is about gratitude and silence. So, first I’d like to ask you the following question:

Have you ever felt as if you’re supposed to keep quiet and just be grateful for being alive?

After the above mentioned consult, Dear Hubby and I left and went about our business as usual. Then one evening a few weeks later, Dear Hubby brought to my attention something that latest specialist had said that he’d since been thinking about. That something said went along the lines of:  Yes, cancer treatment is harsh. Yes, the long term side effects are tough too, as are the side effects of AIs, but you’re alive. 

The discussion between Dear Hubby and I came about because of a certain message inside a Chinese fortune cookie that said:

Very true, but…

I found it interesting that Dear Hubby had been silently pondering over that doctor’s recent remarks.

I had not said anything about those seemingly innocent words because sometimes I fear I am too touchy about such matters. I’m sort of a word freak, I suppose.

Anyway, Dear Hubby went on to say that HE felt that comment was a bit patronizing and even condescending. It seemed to suggest to him that I/we should just keep quiet about my lingering side effects from past and present treatment and instead focus on being grateful that I’m still here.

I had had the same thought, but had let it go.

I am grateful to be here. I am very grateful to be alive and kicking after my cancer diagnosis. I am grateful there were/are treatments that worked and still work to keep me NED. I truly am. I know many others are not so fortunate.

This is another fine line of survivorship to walk – this whole gratitude and silence thing.

Sometimes I don’t feel I have the right to complain about side effects I still have from my cancer treatment and now from my adjuvant treatment as well. I realize that my friends living with metastatic disease would love to be in my shoes. They would love to be NED. I realize they put up with horrendous side effects day in and day out and willingly do so hoping to add months and years to their lives. They hope and pray more treatment options will be available to them when their present one stops working. Side effects mean something entirely different to them.

It’s true, in comparison my issues are minor.

What do I have to complain about?

On the other hand, I also know that these same amazing individuals living with mets are some of the most understanding and compassionate people I know. Most would never even think of discouraging me from speaking out about my less dire issues, or anything else for that matter. In fact, these very people are often the most supportive of all. They get it like no one else gets it.

My friends with mets inspire me to speak up about my issues. They inspire me to speak up about a lot of things.

So yes, I did feel that the unspoken message in that doctor’s words was:  Maybe you shouldn’t complain about your lingering side effects. Maybe you should just suck it up and be grateful that you’re alive.

And this post is not meant to be a criticism of that doctor, or any other doctor for that matter. It really isn’t.

I’m simply trying to make another point about tiptoeing through survivorship.

And that point is that I do believe another expectation out there is that we survivors should keep quiet more often. We shouldn’t complain, or even talk too much about certain things. We should suck it up more and just be grateful.

The danger here perhaps is that some will suffer in silence. Or that too many will be satisfied with the status quo.

If we don’t speak up about what we are dealing with regarding treatment side effects (or whatever it is), who will know? Who will listen? Who will care?

And how will things ever improve for those who come after us?

Again, I have no words to describe how grateful I am to be alive.

But wouldn’t it be wonderful if cancer treatments were not so harsh? Wouldn’t it be wonderful if people didn’t have to suffer through slash, burn and poison type treatments? Wouldn’t it be wonderful if there were actual cures for cancer? Wouldn’t it be wonderful if there were better methods to detect and yes, prevent cancer in the first place? Wouldn’t it be wonderful if more dollars were spent on research to make these things more possible?

And wouldn’t it be truly miraculous if there came a day when cancer was a thing of the past, or at least no one was dying from it anymore?

Perhaps these are only things to dream about…

But then again, perhaps not.

I love the quote from Audre Lorde, author of The Cancer Journals. Somehow this quote seems fitting, not just today and not just for this post, but for any day and for any post.

Because it’s so very true, “your silence will not protect you.”

Don’t you agree?

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Have you ever felt as if you’re expected to keep quiet and just be grateful for being alive?

Do you find it hard to speak up about your issues – whatever they are?

 

51 thoughts on “Of Course I’m Grateful to Be Alive, But…

  1. All those things sound as though they would be wonderful. And as for that ‘just being alive’ stuff we are meant to be so grateful for – well, yes, I am grateful. But I went through the harshest of harsh treatments courses to fight off the cancer, and it still came back. So my while my gratitude exists, there’s a heck of a long way to go. Being happy with what’ available doesn’t seem like the answer. ~Catherine

    1. Catherine, Harshest of harsh and still it came back – I hear you. Boy do I! Being happy with the status quo in this case can be dangerous. Thanks so much for sharing your thoughts.

  2. Nancy,

    I agree with everything you said above! People who haven’t had cancer say that stuff to try and make those of us who have had cancer feel better — but the reality is, all it does is gloss over our feelings and freeze them under a “happy face” veneer.

    I have heard “at least you’re alive!” several times when I was dealing with surgical setbacks and complaining about it to people who couldn’t possibly understand. I’ve also caught myself saying it to others — about myself. (“Hey, at least I’m still here!”) Slapping a big fat happy sticker on a big fat oozing wound does not stop the wound from hurting.

    Certainly our mets sisters have it worse, no question, no comparison. But that doesn’t mean we have to surpress ourselves. Many of my friends (healthy ones… ones that have never had cancer) were the first to tell me that and “at least you caught it early” and “at least you didn’t need chemo.” What they are thinking but don’t say: At least you should be grateful you’re alive.

    When really, what we ALL need is a safe place to rant and rave and dump the stress of dealing with The Big C. And I guess that’s why there are so many cancer blogs.

    Here’s a little daydream of mine: Imagine how much easier our lives would be if we each were assigned a shrink upon diagnosis, someone we would see sporadically initially, but as time went on, and “cancer head” (i.e., the emotional fallout that eventually hits us like a proverbial brick wall) set in, we could call at any hour of the day or night. This shrink would listen and NOT try to make it all better. They would understand and not judge us for whatever we were feeling.

    And I kinda think we already have that in place… right here in cyberspace!

    So I’m writing all this to say I get it, Nancy. I get YOU. I get what you’re going through. I understand. I can’t make it better. But I can listen. We all can listen.

    I hope anyone reading this knows that the blogosphere can be just such a place. And that is pretty wonderful. Just like you, Nancy… you are pretty wonderful. Thanks for all you do out here in bloggy-land, for spending so much time carving out a sacred little space for us to let it all out.

    xoxo
    Renn

    1. Renn, Thanks for the wonderful comment and for sharing your little daydream that is actually a pretty darn big, terrific and sensible one! A ‘cancer shrink’ would be nice. I’ve been saying for awhile now that I think every person diagnosed should meet with a mental health care professional at least once. But… And of course, you’re exactly right about this cyberspace community. It’s great for so many reasons. I do consider my readers (this means YOU!) to be like my therapists. I really do. Thanks for being part of it, Renn.

      1. Thanks so much for all of this. I have a history of health problems before being diagnosed with cancer. Just take better care of yourself type messages were common when my 24-year-old, insanely thin, broke, close to homeless self couldn’t convince a doctor I didn’t take drugs, was losing weight, exhausted and occasionally peeing blood. Finally, in a small town, in a small province, in an emergency room, after fainting (yet again) my kidney problems were diagnosed. For years, any one of the doctors I saw, in three major cities, could have ordered a simple test and figured out I was telling the truth. Anyway, 25 years later, about a year after cancer treatment ended I wanted to see a mental health professional because I wasn’t all that grateful to be alive and wanted to be. I saw the shrink, and it was the most insulting experience I ever had. It brought back every memory of poor medicine I have ever lived (sometimes barely) through. So, yes it would be amazingly wonderful to have “cancer shrinks” that really care about people and don’t just blab the ^(&$(*#^$*@ good attitude nonsense at us.
        Hmmm, I’m tired I guess – but I am glad I’m alive now because of the help of an amazing nurse, online groups and information, and family.

    2. Im so gratefull finding this post. Im very emotional. Its like im listening to my self . if u have not been through it u dont get it. Im sick of people saying well at least your still here . nancy and all you ladys thank you for all the support

  3. Yet again, more good points. Thank you Nancy(‘s Point). As a woman with MBC, and someone who appreciates your: education, resources, editorials, points to consider, candor & care (via fb & blog), I would indeed be saddened if you were “silent.” The community (which you and others have helped to create; you are a leader in your own, possibly unintentioned, rite) would feel the burden of your withholding. Your sharing vs silence is indeed more helpful than anything and frankly, doing so is simply being true to yourself & others but is indeed a choice.

    This is why, despite my graditude for life and treatment options, I too am often not silent.

    Thank you for speaking up. Thank you, for you. And, thank you, for me.

    1. Jen, Thanks so much. Your comment means an awful lot to me. Silence vs sharing isn’t a tough choice for me anymore – Most of the time anyway. Being true to yourself is what it all boils down to isn’t it? Thanks again, Jen.

  4. Yes, I even put a form of this on my About page–the concept that of course I recognize I’m lucky to be alive but that gratitude should not stop me or anyone from demanding more and better in terms of cancer treatment, etc. Where would we be if the first group of women activists kept their silence–still going under for a biopsy and waking up with double mastectomy?
    This social expectation of quiet strength under duress does not work for me.But I will get tired of the struggle soon because I am so impatient, and will likely give up and shut up.

    1. Cancer Curmudgeon, I agree completely with your point about activism and I also think pink ribbon culture does encourage that “quiet strength under duress will get you through” mentality. That one doesn’t work for me either. We all get tired and impatient. I just hope you don’t give up or shut up! We need your voice. Thanks for valuable insights.

  5. In am not tip toeing through anything. I’m stomping and will make a lot of noise because I insist on being heard and definitely not be condescended to by anyone be they a medical professional or well intentioned busy bodies..Love Alli….

  6. As cancer patients we should never suffer in silence….we should always speak up..We are all praying for a cure someday…I believe that we all have a unique way of dealing w/issues that arise. But also by sharing symptoms and also what helped us to feel better or worse may also help a fellow patient/survivor..Praying for a cure…and never giving up…

    1. Barbara, Sharing almost always helps because even though each of us has a unique experience and a unique perspective, we are all searching for a bit of commonality too, so as not to feel alone. Thanks for reading and commenting.

  7. Nancy, so well put. I always think that it’s not a zero sum game: my suffering is not negated by the suffering of someone else. And while I am grateful to be alive, I am also living with the damage caused by cancer treatment. And I’m not grateful for the chronic diseases that I now have due to that treatment.

    I can’t move on in a way that will allow others to breath a sigh of relief that they don’t have to deal with my suffering. I can only move through the experience of my life, and that includes cancer and the collateral damage.

    And silence doesn’t help, it just makes it easier for those who ascribe to the concept that “we get cancer to learn life lessons” (a quote from Orange is the New Black, where Piper says that she doesn’t believe this.)

    Thanks for another nuanced and thoughtful post.

    1. Kira, All we can do is move through the experience of life. And no, doing so in silence isn’t helpful is it? Thanks so much for your insightful comments.

  8. You know I’m not shy about telling it like I feel it… However, I have nothing left to lose. I’m not sure I could or would be doing so if I were not stage IV, so I’d like to once again say how very proud I am to know you and how very inspirational you are. Even when I disappear a few months, I know you are there and it comforts me. Keep speaking up, loudly!

    I’m glad you are seeing so clearly, I wish I had had your frame of mind earlier on… Much love… Carolyn

    1. Carolyn, Thanks for your kind words and I’m proud to know you as well. As for the seeing clearly part of your comment – well, not so sure that’s true. Much love back.

  9. Speak up! Not in anger mind you but to be informative. There are others out there suffering the same and I think it should be known something more should be done for the women who follow us. This can not be considered the norm for the future.

  10. Hi Nancy,

    I, too, am grateful to be alive, but I am definitely not grateful to cancer and its domino effect on me as well. It’s interesting that you discuss keeping quiet because I’m currently writing about a post on keeping quiet about cancer. It’s quite a common phenomenon.

    Me? I tell everyone my story. I used to be such a private person. I still am, but when it comes to cancer, I simply can’t shut up. Nor should I.

    Yes, we are grateful to be alive, but living is more than just existing. We have to live with bodies that have been plundered by cancer and its treatments.

    Thank you for this excellent post.

    1. Beth, I just read your post. It’s terrific. I’m a private person, too, so sometimes I surprise myself with what I share. And yes, gratitude’s partner post diagnosis does not need to be silence.

  11. dear Nancy,

    once again you have opened up an issue that is so overlooked, and it causes a lot of anguish and bewilderment and, yes, anger. having gratitude just being alive, as so many would suggest, is minimizing and negating the suffering of the aftermath – physical, emotional, and spiritual. and when our doctors question our questions about all those side effects that raise their ugly heads, sometimes years after treatment, it must be especially galling. after all, many of us were never even told of those possibilities, by the very doc that’s uttering the demeaning and dismissive and insensitive words that make us feel so unworthy, like we don’t have the right to bring up what remains painful and troubling! and why should the issue of feeling gratitude to be alive not be able to co-exist with wanting some sort of relief for those side effects? it makes me angry – but it also makes me suspicious of physicians who turn away from being more holistic. perhaps they carry a score card of their patients and it reads – ALIVE – I WON. and there really isn’t much thought or concern for the patient beyond that WIN. in fact, perhaps it’s a burr in their saddle when patients seek help beyond the WIN – and makes them feel inadequate and unappreciated. that’s pretty narcissistic – but I do believe it happens, because I witnessed it in my hospice nursing years -oncologists abandoning patients and their families once they entered hospice. but the really sad thing is that we don’t always need instant problem solving, we don’t always need immediate answers. we just want our doctors to listen to us, to offer comfort, and maybe to say – I don’t know the answer to your problem, but let me see what I can find out for you. that is practicing the ART of medicine, and that’s the kind of physician we all need and deserve.

    this was a great post, and i’m happy to see such a robust conversation. isn’t it wonderful we all have each other to share ideas (and maybe garner solutions to problems that are so universal)?

    much love and light, dear friend

    Karen, XOXO

    1. Karen, I love your point about ‘instant problem solving’ – that’s not necessarily what we’re looking for is it? Listening and validation means so much too. It’s horrible when patients are abandoned by their doctors upon entering hospice. I bet you saw and heard a lot during your years as a hospice nurse. Thanks for being part of this discussion. Your point of view is always so valuable. xoxo

  12. I see this two ways – yes! Be grateful that you are alive. You fought a hard battle and you won. Be proud. Still, it is also extremely important that you recognize the pain you are still going through. Otherwise you may not allow yourself complete and total healing.

    1. Jane, I am grateful – not so much proud. Unfortunately, I don’t really believe complete and total healing happens. But that’s me. Thanks for reading and commenting.

  13. Yes, I agree. There is this fine line we walk, where we are supposed to be grateful for every little thing in our lives because we are alive. Like, I am not supposed to complain about my hair now, because hey, at least I’ve got hair now! The lingering joints, but hey, at least you are vertical!
    I find that I often complain to those I feel will get it and just do the smile, nod, I feel fine to those who will come back with “at least you’re alive!” in a very flippant way.
    I get it, and like you, I am grateful. But that doesn’t magically make my aches and pains go away. It doesn’t make me any less human. It doesn’t mean I don’t have good days or bad days. And it shouldn’t mean I’m not allowed to talk about the less than ideal parts of my day or life!

  14. I confess, I get sick of that comment, “at least you are alive” and it’s twin “just keep a positive attitude.” Yes, I am grateful to be alive, but I feel like saying, “if you don’t have neuropathy from chemo, are not taking hormone altering drugs, do not have damaged skin and muscle cramps from radiation, and still have all major body parts (not counting tonsils and appendixes), please shut up!”
    I think the reason that we resent these comments is that they are in fact judgmental when said by people who haven’t been through it. Sometimes, and perhaps this is where a part of our Pinktober resentment comes from, it comes from other cancer survivors who were fortunate enough to only go through the minimum of treatment and seem to be proud they “did the right things” and their cancer was caught early, totally unaware that most people with advanced cancer were just as diligent, unaware that there is a lifetime risk of metastasis.
    I think the people I most resent hearing the “be grateful you are alive from” though, is the few people I thought were close enough I could share with. It get’s very lonely if you have to put on a brave face for everyone all the time.

    1. Elizabeth, Your comments are always so honest and so insightful. I’m sorry for that loneliness you sometimes feel. Being less judgmental and more inclusive would be great and pretty darn simple for us all to do too. Thanks for sharing.

  15. Nancy,

    I am sitting here typing with tear-blurred vision as I am exhausted by the pervasiveness of the mentality that believes to voice a valid concerns makes one an ingrate.

    Part of me wants to give those who say such things the benefit of the doubt knowing that many are simply do not know what else to say and have never consider silence an option; however, another, larger part of me wants to scream ‘enough already!’

    Stephanie

  16. I was diagnosed a few months ago with BC: stage 1, slow-growing tubular, 1 cm, no lymph node involvement, no family history. I had 2 lumpectomies, am on Arimidex and have a week of radiation to go–no chemo. So yes, I’m really lucky. I know this and am grateful every day. But my terrific oncology team reminds me that I’, still going through a tough time, and while I should indeed be thankful for my “light” diagnosis, I should acknowledge and not minimize the difficulties associated with my treatment. They’re right, but it’s a balancing act.

    And you are so right: the mere fact that breast cancer treatment is easier now than it was even a decade ago is all because patients acknowledged the difficulties with treatment. Maybe some day (soon!) we’ll be able to deal with this without disfiguring surgeries and debilitating side effects. This can’t happen if we suffer in silence. Thank you.

    1. Nancy RM, I agree completely with your oncology team. There really is no easy cancer or cancer treatment. You are indeed still going through a tough time – that’s an understatement! It is all a balancing act isn’t it? I guess life always is. And if we keep quiet and settle, how can we expect things to improve? Words to live and make noise by! ha. Good luck finishing up radiation. Thanks for commenting.

  17. I don’t have cancer but I do have a terminal illness called pulmonary hypertension. It’s a tough life not being able to see that I’m sick but not being able to walk 6 feet without getting totally out of breath. I’ve always said well at least I’m here when do many have passed on from this terrible disease. However the struggles one faces on a day to day can be helped by talking about it, writing about it. I on a personal level have been diagnosed for 10 years. Going through surgery after surgery medicine after medicine. Only to be stable and not cured is in my own opinion sucky. I hate that there is No cure for my disease and that I should be happy that my disease had not progressed to the point I need an Iv infusion site for meds but at the same time I’m sad because I can’t play with my children the way “normal” people can. Instead I’m left with staying in the sidelines watching my husband do the things I wish I could. 🙁 No one truly gets anyone’s disease fully. Every person is an individual case no matter what you have. I’m Alvie most likely because if I don’t I won’t see my children’s next birthday. Most doctors do say at least your alive but who gives them that right to say those things. They can say how they are happy with the results but to say at least you are alive is completely patronizing like you said. I think doctors have diarreah of the mouth. To say something like that who can’t grasp what you feel or even empathize that you are still struggling to be free of the demons that you are left with after a diagnosis. No matter if you are cured you will always have the lingering thought that one it could get worse or could come back. The notches on their belts are there because they can and will compare you to their other patients. Even if they say every patient is different you are still going to be compared and guinea pig. When I was diagnosed my cardiologist told me I was going to die if at 7 1/2 months pregnant didn’t have an abortion. I didn’t and have a healthy 9 year old. And a daughter that is 7. I’m here still and will always do whatever I have to do to be here for my family. Thank you for your wisdom.

    1. Liz, I’m sorry about your illness and how you sometimes feel left on the sidelines. It sounds like you have been dealing with an awful lot and still are. You’re so right in that every patient is different. I hope we aren’t all being compared by our doctors, but maybe there’s no avoiding that… Thanks so much for sharing your insights. Keep on keepin’ on.

  18. No, just being alive isn’t a grand thing in itself. If it was, we wouldn’t have so many suicides. Living is a grand thing, but just “not being dead” is not enough.

    I’m immensely grateful that my wife is alive and has very good odds of living long enough to die of old age. So is she. Which doesn’t mean we can’t be angry and upset that we have lost so much and now have to pick up the pieces. Before her diagnosis, cancer was something that only happened in movies, on TV, online. I’ve never lost or even seen a relative with cancer. And then suddenly this thing barges into my life? Hell yeah I’m angry. And grateful that I still have my wife and a good chance of rebuilding my/our life. And angry. And grateful.

    I want my wife to live to the fullest, and as long as there’s anything I can do, anything at all, I’ll never settle for “just be grateful she’s not dead and stop worrying about minor details like making life worth living”.

    1. Tiago, Emotions are very complex and we are capable of feeling many different ones all at the same time. So of course we can feel grateful to be alive, but at the same time we might also feel anger, confusion, or whatever it might be. Post-cancer diagnosis there is considerable adjusting and adapting that must happen, and this goes for partners too, as you well know. All of this takes considerable commitment, lots of patience and tons of TLC. Good luck to you with things. It sounds like you are willing to do what it takes.

  19. I will never stay quiet about the side effects of cancer treatment as maybe it may help someone in the future and doctors might start to aknowledge these side effects too… I believe we have to consider a quality of life and not just about being alive… There is a balance that we need post cancer…

  20. It seems most people can’t understand that there is no expiration date for a lot of the crap that the cancer brick through the window leaves behind. Even doctors who should at least know that don’t always act in line with the thought. But we are still here to say something about it, so we do. And we hold the focus where it needs to be: CURE NOW! Thank you for your excellent post.

    1. Lopsided blogger, It’s great to hear from you. I like the way you put that – “no expiration date on a lot of the crap the cancer brick through the window leaves behind.” So true. So very true. And yes, we will keep speaking up. Thank you for reading and commenting. Hope you’re doing alright.

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