Is there a hierarchy among cancer survivors?
It has been enlightening and uplifting to read your comments on my post on knowing when it is time to walk away from a situation. One line from Cathy’s comment really stood out as it brought up another topic that has been on my mind recently.
I felt like a fraud when diagnosed as in I didn’t need chemo just surgery, rads & tamox so I didn’t want to make any fuss when so many others had REAL cancer.
So today’s question dear readers – is there a hierarchy among cancer survivors? Is the experience scalable? Do some “suffer” more than others? Are some of us “braver”? Do some of us look up to/look down on others who have “suffered” more/less? Are some of us more “entitled” to carry the “survivor” label? (Forgive the clichés, but I think for once using them drives home the point).
A diagnosis of cancer is a traumatic event in anyone’s life and I don’t believe we can compare the level of trauma. Cancer is cancer, is cancer, and how you process that, regardless of the treatment you did/didn’t receive, can only be truly assessed according to your individual experience.
Cathy goes on to say in her comment that because she thought she hadn’t had “real cancer”, she forced herself back to a highpowered job too soon.
after 3 months I had a total melt down. I blamed Tamoxifen (and in truth I had bl@@dy awful side effects requiring follow up treatment) but I truly believe a lot of it was to do with my refusal to face up to the fact that I had a mortality impacting disease and recognise that I had to let go of my old ideas of ‘me’ as a highly capable, career woman.
I find this so interesting. We minimize our pain – and this doesn’t just relate to cancer – because we feel we didn’t suffer enough and so our trauma is less than someone who did. The natural follow on from this line of reasoning? We can pick up our lives where we left off and because we did not have to go through any surgical, chemotherapeutic or radiotherapeutic healing of the cancer, we do not have to emotionally heal from it either.
Or perhaps it is not ourselves that are doing the minimizing of our pain, but others. Often they are well-meaning – by pointing out how much worse it could have been for you, they are trying to console you in their own ham-fisted way. Sometimes, it is other cancer survivors who feel you haven’t got the right to your pain because you haven’t “suffered” as much as they have. Whether these thoughts come from your own mind or that of others, it all serves the same purpose – it invalidates your experience and impedes your healing journey. Cathy’s comment makes that point so well.
And it is not just in talking about cancer that we find these levels of suffering. I have encountered it when dealing with infertility and the death of my mother too – this sense that there is always someone who has suffered more/less from the experience than you have, and therefore their experience is more valid. None of us truly knows the pain another person goes through when they experience a life changing event, and by learning to not compare experiences, we are learning to practise some much-needed compassion both for ourselves and others.
Be kind, for everyone you meet is fighting a hard battle. Plato
Falling in the chemo group but not having mets, I’ve experienced both sides of the coin and it’s truly a learning experience. I’m so glad you posted about this important topic. In psychological terms, they call this “discounting” because like an item on sale at the store, we discount or diminish another’s experience as not being of the same worth in suffering. Doing that invalidates a person’s experience when they need compassion and validation. There will always be those who suffer more and who suffer less. It’s not a competition of martyrs.
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Well said Eileen!
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Wow – as the partner of someone with breast cancer, I have had similar thoughts. Does my partner suffer more or less than somebody else? Whilst lymph nodes were involved, there no evidence of the dreaded mets. Yet. Or perhaps (hopefully) never. But she has (obviously) been through someone with (just) DCIS. How do I try to compare my experience to someone that is partnering a woman with stage IV cancer? It took me quite some processing to realise that it isn’t actually the comparison that is useful. It is recognising that each experience has its own path, and it’s not possible to be on a continuum for this particular measure. Thanks for the reminder.
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Thanks so much for sharing the partner perspective and thanks for the great comment.
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Hi. Marie, good for you for bringing into the open one of the unsaids. I have been so busy being “lucky” that I didn’t allow myself to recover, to grieve, to take care of myself. After my first diagnosis I was so busy disowning the impact I put all my energies into proving that it hadn’t changed me and lived with such draining fatigue that when I was diagnosed again my biggest fear was going back there. You are so right a cancer diagnosis has a huge impact and needs to be met with compassion not judgement. Your blog holds that compassion so powerfully. Thank you for doing what you do. It’s such a joy to me being part of your community of compassion.
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I’m grateful that you addressed this phenomenon … because it DOES in fact exist and the emotional scars have been very difficult to recover from (even four years later). I had a very small invasive cancer (Stage 1) that did not require chemo or radiation. I tested negative for BRCA but opted for a bilateral with reconstruction due to significant family history. Shortly after my initial surgery, I reluctantly sought out a support group as I was having a hard time. The women who had gone through their diagnoses and chemo together were extremely cliquey and quickly made me feel like some kind of fraud because I hadn’t gone through as much agony as they had. Since I didn’t lose my hair, my body image issues were routinely dismissed and left me feeling unworthy (btw, I was one of the few singles in the group and there was not an ounce of compassion from them about how to broach the subject of dating — because in their minds, at least I had my hair).
What they viewed as my winning some kind of ‘cancer lottery’ was my personal terror. I felt more vulnerable for recurrence NOT having had chemo and subsequently being taken off of tamoxifen (because it exacerbated a pre-existing fibroid issue). This left me even more fearful of a recurrence. But in their collective minds, my fears were “much ado about nothing” and the leader of the group wasn’t much better and poo-pooed those of us with early diagnoses.
Newer members joined and were accepted into the fold of the clique of past members (because they were on the chemo path) and I began to be habitually left off of emails and invitations for get togethers outside of our meetings. The weekly minimization of my experience became too much to bear and pulled me into a deep depression. Worse, I couldn’t discuss any of this with my non-cancer friends as I thought it would make me sound petty or crazy.
One of the women who had ‘graduated’ from the group had a recurrence and sadly, died a year later. The behavior of the clique was nothing short of appalling. The cruel irony being that the woman and her husband felt isolated and abandoned by friends as they navigated the metastatic path — never knowing that people who attempted to reach out to help were shunned and turned away by these self-appointed “gatekeepers”. Her final days were nothing short of a side show (these women did all but sell tickets) and as you might imagine, they were less than forthcoming about the details for the memorial service — because it never stopped being about them. The woman’s husband has since confided how disgusted he was at what went down, but he was too consumed with grief to intervene … needless to say, these women quickly went back to their own lives and have been of little comfort to their friend’s husband.
You’d think if there was anything that could bring women together and level the playing field, it would be breast cancer. But for all of the support, there is also a dark side that I was not prepared for. And it was as ugly, horrible, and scarring as cancer itself. Since then, I’ve been fortunate to meet women (of all stages and variations of treatment) who have been wonderful and have helped me to put this toxic experience behind me.
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That is just awful, the way those women treated you. There is no excuse for it. I am always afraid of being treated like that (it’s happened to me before in various settings). I actually felt too awkward to even go to the support group at my cancer center. Part of the reason was because I was only 38 when diagnosed, and most of the people in the group were senior citizens. Eventually I found a wonderful group for cancer patients/ survivors/ etc who were under 40 when diagnosed (“Stupid Cancer”). Now I’m actually one of the oldest members, but it’s so nice to have people who understand the issues younger people face.
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Hi there, so glad you stopped by and shared your thoughts. I understand what you mean about feeling out of place in some groups – I too was the youngest in my support group and felt isolated when it came to my own worries – like fertility issues. It is wonderful that you hooked up with Stupid Cancer – I know they are a do great work – and found support among your peers.
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This is such a powerful comment from Blonde Ambition! Thank you SO much for sharing it. I feel deeply affected having read it and more determined than ever to bring awareness to the need for us all to pull together and stop these divisions within our community.
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Thanks, Marie. Just saw you shared it on Facebook. It definitely added drama to a situation that was traumatic in and of itself (and it’s part of the reason I use a pseudonym to post — but also due to a job search). The other comments I’ve read in this thread have been extraordinarily validating to me knowing others have experienced similar scenarios. Btw, I believe we follow each other on Twitter; I’ll shoot you a DM if we are. Thanks for always writing such insightful pieces. xx
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I stumbled on this when searching for an answer to why I was feeling “less than” because of the cancer I had. A community gossip had disclosed my diagnosis throughout our small town. Now this person has decided that since I didn’t have chemo. I must not have had “real cancer.” I had no idea that people really behaved this way. All I can feel is grateful as I approach 1 year; but I can’t help but be annoyed by a gossip calling me a fraud for not having “worse cancer” and for being grateful, and being well.
I feel like I had to move through this past year with strength and grace. (6 operations in 7 months). Now I have this silly gossip to content with. I just don’t get it. Suggestions?
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Thanks for this very interesting posting Marie. I personally believe that whatever “disease” we have is relevant to our spiritual development and our own particular learning path. This affects all who we come in contact with, and they are given a choice as to how they react. The word “Karma” is a derivative of the Sanskrit language, meaning “consequence” or “action”. Those of us who have experienced cancer, to whatever level, have much to learn about loving ourselves. The degree of pain or suffering varies, but the lessons are much the same. We give others the opportunity to be compassionate in their dealings with us,- and if they choose otherwise, then their “Karma” will return so they can feel the consquences of their actions.
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Thanks for your beautiful comment Christina. I see a theme emerging about learning more compassion and love for ourselves which is a lesson I need to heed myself x
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What a great post, Marie! This is so interesting. I do think there is a hierarchy, whether real or of our own making, and I’m always annoyed when someone points out that others have it worse. I was 36 when my mom died, and she was 13 when her mom died; while a 13-year-old needs her mom in different ways than a 36-year-old, the grief and loss are the same. And just as others have it worse, others also have it better. Case in point: all those whose mums are still alive. No two cancer experiences are the same, but they’re all difficult and grueling, and each person’s reaction to it is their own.
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And I was even older than you when my Mum died and it still hurts like hell. You are so right – life is hard for all of us in different ways at different times.
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Wow! This post really hit a nerve in me because it is something on my mind sometimes. I suffered a lot, but I often think I didn’t suffer enough. This comparison game that we mired in the breast cancer world play is really not helpful. Each person’s experience is different. My brother and sister-in-law, who have a healthy baby now, lost a full-term baby a few years prior. They mistakenly thought their grief was more justified than the grief of someone having a miscarriage. Grief is grief, and why should we measure who suffers more and who really is sick? Great posting that has given me pause to really think this issue over.
Beth http://www.bethgainer.com
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Beth, you hit the nail right on the head here. Infertility is another one of those areas where a lot of comparisons are made – and they help no one. We suffer pain at whatever stage we lose a much longed for baby.
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Thank you Marie for picking up on my comment and I guess I want to say lovingly expanding it to articulate what was an experience shared not just by me but others. I love the idea Christina poses that those of us who have experienced cancer have much to learn about loving ourselves. How lacking in self love was I that I felt embarrassed that I ‘just’ had 25 sessions of radio after surgery. Even those I spoke with automatically said ‘oh you’ve had chemo’ and when I said no, a standard response from the uneducated was ‘oh well then, you’re lucky aren’t you’. Yes I was lucky but at a time when I worried about who would look after my son if I had a recurrence and I dragged one foot in front of the other with exhaustion, I didn’t feel overjoyed (so got guilt on that one too – blimmin Irish Catholic guilt). I am afraid to say after one comment too many about how lucky I was, I replied to the dismissive orator – “Lucky, no, lucky would be if you got the diagnosis I had, not me”. Horrible wasn’t I but it let off some steam. Thank you again and to all the participants of this cozy fireside chat group. Cathy
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Jody Schoger – you said it so well “At our best, we are compassionate to others.”
If only we could stay “at our best.”
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If only we could….
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Cathy, I am so glad you brought up the topic originally – it just shows how many of us have been feeling as you did but felt we shouldn’t speak about it. Keep your comments coming 🙂
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One of the reasons I liked LIvestrong and other organizations that included all cancers when I first finished treatment was the lack of this sort of – for lack of better word – bitchiness. There really shouldn’t be a hierarchy of suffering from a spiritual standpoint – yet we know if exists. It’s essential to remember that suffering falls on every life, whether it’s cancer, heart disease, or a sudden tragic accident. Parents sicken and die. You lose a job, a marraige dissolves. We learn from our own experience and at our best, are compassionate with others. At our worst we compare experiences instead of hearing what it means to the individual.
And from what I know now: there is absolutely no doubt that the younger the woman is at the point of diagnosis, the harder the journey is, regardless of the type or stage of her cancer.
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I don’t think it is so much about a competition as a comparison. Women who have METs seek the opinions of those who have METs because of shared experience, and ease of being able to relate to one another’s issues. Coining a term off Scorchy, “Cancertown” consist of subcultures as they relate to the different diagnoses and life issues. Unfortunately, the culture has learned to compare those to see where they might best fit to get their questions resolved. I’ve seen this in chat rooms, social media, etc. Cliques or bonds that have been formed over time through their treatment experience, and likenesses. The unfortunate fallout of this is it can be very isolating to those newly diagnosed or feelings of “lesser” disease.
If I haven’t had lymphedema or I don’t have kids it’s hard for me to discuss impact which would normally then suggest I need to look for a new address in “Cancertown” but, the difficulty is navigating to a place where you fit in this unspoken “hierarchy” since we all want to discuss what’s relevant to us. Certainly, there is something to be said about the amount of knowledge one gains over time dealing with the disease. Giving them far more say in these forums due to pure experience. Again, fallout of this newbie my not feel welcome as they are overwhelmed with terminology and unknowns that are being talked about. The hierarchy might be knowledge and time in status rather than stage, and of course the more procedures you have the more knowledge you gain.
My mother could probably respond to this blog emphatically given in 1995 she was diagnosed and did not have chemo so we’ll minimalize, she died in 2012 of METs. She had REAL cancer.
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This is such a well-balanced comment. I take your point absolutely that we go where we will find the information we need and this is good and helpful. The other aspect is that I was shocked to find that people feel as if somehow they have less of a right to the cancer experience because they haven’t had to undergo the full awful experience of chemo or that they have less to feel bad about because of the staging of their cancer. I guess what I am trying to say is that we all suffer in our own ways and none of us should feel our suffering is any less or more than anyone elses. Thanks for your thoughtful comment x
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Thank you for this post. This is an issue I have been dealing with since dx 8 mos ago. I also had surgeries (4 lumpectomies as of last week), rads (35) and Now on the heat-wave inducing ride of Tamoxifen until 2017, maybe 2022) but I still feel that without chemo, people treat me as though I have a good cancer. It seems as though, unless you lose your hair, you don’t really have cancer. I have internalized some of that thinking. My fear of recurrence leaves me gobsmacked way more often than I feel is appropriate for someone with Stage 1 cancer, and I really never know if I am over dramatizing my situation, or if I have valid fears. I measure myself against so many women I read about and feel I shouldn’t complain. I also feel more vulnerable for recurrence because I did not have a chance to fight it with chemo. I know chemo is horrible, but not having chemo can be traumatic also. Try explaining that to an oncologist. I do see stratification within the community, some of it may be self-imposed, but even on the breast cancer social media sites I use I see remnants of that – cliques seem to form and its hard to break into those relationships.
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Jane, my heart aches at your words. I can totally understand where you are coming from with your fears about a recurrence and feeling you shouldn’t voice them. Your comment about cliques keeps coming up in my conversations around this topic this week and I hope you will always feel part of the community (if that doesn’t sound too cliquey!) here. I strive to create a space where everyone is free to share their story and experiences whatever that may be. If I sometimes slip up myself in sharing my own opinions, I encourage readers to call me on it if they wish. Thanks so much for sharing your story so honestly here. I know it will have helped others who feel as you do.
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Great post, Marie! I find that this type of comparison isn’t confined to one part of life either. There are comparisons on how we parent or whether we stay-at-home or work. It seems to me that in our quest to validate our own experiences (and in some cases, decisions), we are often critical of the experiences of others. I believe that if we can give ourselves a break, and allow ourselves to process as we need to rather than as we “should,” it is easier to be supportive of others despite different circumstances or decisions. Of course, this is easier said than done — I’m still working to quiet my own largest critic: myself!
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Molly, that is a great point. I was speaking with a friend who said she felt judged for not being able to breast feed her baby and that it made her somehow a bad mother. It seems it is human nature to judge and as you so rightly point out, sometimes we are hardest on ourselves – I know I am!
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In many ways, I STILL feel like a “fraud” …. After all, my chemotherapy was so “mild” I never lost my hair. Somehow, only through hair loss, in my own mind, does one have the “right” to claim that badge. The long term, later onset lingering cognitive issues don’t count. As long as I kept my hair, it’s okay that my brain is compromised. I’m still a chemo-fraud. I also feel like I have no right to be concerned about any sort of recurrence because I took every conceivable measure to reduce my risk. Yet, I look at my mother. She, too, took every possible precaution with two separate primary diagnoses. Even knowing she is now metastatic…. still I feel I should be marginalizing my own fears. I should be dismissive of my feelings. This is an excellent point and one worthy of discussion.
Thank you, Marie for always finding important and relevant things to bring to the table.
Hugs and Love,
AnneMarie
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And thank you Anne Marie for sharing your thoughts – I really appreciate your comment.
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I think it’s natural to create hierarchy, even if it’s not supportive. After all, we do it in most other aspects of life. But I also think that the general population has never heard of staging and variation within treatment options, they’ve only heard of cancer – so then where does the hierarchy come from? Yeah, people expect me to be better by now, but don’t most people have that expectation put upon them (no matter the stage of cancer) once treatment ‘ends’?
I hate to admit this, but I instinctively compare other people’s experiences to mine. What are their chances of recurrence? What was their staging? What is or was their treatment? I place my situation against theirs. It’s a first-response habit.
My second-response habit, after I try and deflect the first, is to listen to people’s stories, hear how they are feeling and understand that cancer is scary for everyone. Everyone feels the pain. And everyone deserves to have that acknowledged.
Even if a hierarchy exists – I think we who share in each other’s stories know that it goes way, way beyond the statistics & staging.
So that’s what I think about that. Geez that’s a long response! ~Catherine
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I am delighted this elicited a long response in you Catherine 🙂 I actually think the hierarchy exists within the cancer community. I agree that “outsiders” for want of a better word are less aware of staging etc as you rightly point out. To many outsiders, cancer is a death sentence – end of! I also agree with you that creating levels in this way is a natural part of society – we all do to some extent, even subconsciously. Having said all that, I was motivated to raise the topic because of Cathy’s comment about feeling a fraud and I wanted to see if anyone else felt as if they had less of a right (for want of a better word) to their experience of cancer
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Interesting post. Interesting comments, although some are disturbing to me. I whole heartedly agree with those who point out it is natural to create such a hierarchy, and that we all tend to filter or compare others’ experiences with cancer to our own. Maybe it is just a way of understanding it all. I am guilty of judging others’ suffering as less than my own, and I’ve also diminished my own experience because I am too aware it could’ve been worse.
It is true a hierarchy exists, and that suffering is judged from within and without the cancer community. Those with other cancers scoff at those with breast cancer, because it is the popular/well-funded/perceived-as-solved-if-you-get-a-mammogram cancer. I recently became upset reading comments on CNN in which a person (without cancer) dismissed cancer patients’ struggles with post-treatment sexuality as “first world problems”. I now know the proper response to him should have been—if I don’t deserve to be unhappy because someone else has it worse, does that mean I don’t deserve to ever be happy because someone else has it better?
Sometimes the hierarchy isn’t about who has what stage, but how long a person has been dealing with cancer. There are certainly cliques within the online breast cancer community, rooted in when a blogger was diagnosed and/or when they began blogging. I am new to the blogging-about-cancer world, but being a year out of treatment, I’m not exactly a novice at cancer either and do not wish to be treated as such. It is all quite frustrating.
Let us all take a moment to recognize all body-parts-types of cancer, all stages 0 and up, for however long treatment has gone on or is over, are indeed REAL cancer.
It sucks the hierarchy exists, but the only way to begin to overcome it is to shine a light on it like this. I hope good action comes out of this post which talks about cancer in a way that has yet been done, that I have seen. I find that willingness to tackle a new topic rare in most conversations about cancer, so this is refreshing.
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What a wonderful comment! And thank you for your honesty in saying that you have judged others too – I think that is human nature – I have done it at times, but I have been working on that! And sadly what you say about cliques in the cancer community is dishearteningly true, but this is something we find in all walks of life, whether cancer is the issue or not.
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dear marie,
this is an incredibly relevant post – just look at all the responses and personal stories!
i read and re-read the post and responses. there was one word that screamed out at me.
COMPASSION.
the cancer world so many of us live in is diverse – individuals, diagnosises, treatments, outcomes, emotional responses, fears, triumphs, labels, thoughts, feeling, et. al. i think it’s a natural response that when we share stories we also make comparisons with all of those aspects of the experience. but when we have a deep sense of compassion for ourselves as well as for others we avoid jumping from those comparisons to creating heirarchies and cliques, and any thinking or behavior that excludes or marginalizes others who are suffering.
there will always be people who have tendancies to compete, to be inclined to one-ups-manship – and just as in the non-cancer world – those people seem to tend to gravitate toward each other, form groups and act out inappropriately. compassion probably is not first and foremost in their lexicon or attitude, and often the best we can do for our sanity is to remove ourselves from being exposed to such negativity. no one who is enduring cancer should have to feel excluded or feel they are not worthy or feel guilty because of a perceived lower threshold of suffering.
i think this post and the your previous post. “knowing when to quit” and the stories that emerged from the responses is a poignant and very timely reminder that we need to be gentle with ourselves as well as with each other. thank you so much for posting on such an important topic, marie.
love, XOXO,
karen, TC
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Karen, when I write, I often think of something that Pema Chodron says about how we teach what we need to know – well I write what i need to know – and one of the things that I write about is compassion, because self-compassion in particular is one of the things that I am in desperate need of. thanks for all your great support..and your compassion xxx
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Marie,
Another good post and discussion thread.
I think it is helpful to separate out the objective and the subjective. Some cancers are curable, some are not. Some treatments are more intensive than others. Some people get cancer young, some old, and some in between. So yes, objectively we can create a hierarchy: somebody with a curable cancer, a less intensive treatment and older is in a ‘better’ situation than someone with incurable cancer, more intensive treatment and younger.
But subjectively, we don’t work like that. Cancer is cancer, and curable or incurable, it is a sharp reminder of our mortality and vulnerability, and it marks us – and those close to us – for life. So even if objectively I have an incurable lymphoma, and went through the full myeloblative treatment (rad & intense chemo), I don’t diminish the emotional and psychological scars of someone who has had less intensive treatment. It’s objectively and subjectively an awful experience to have cancer and undergo cancer treatment.
One last note, showing just how wired we are for comparisons. Whenever I went to the clinic and was feeling crummy, I would look around me and there was always, unfortunately, someone who looked worse off than myself. It gave me a sense of perspective, and helped me avoid feeling too sorry for myself.
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Andrew, great comment, great insight and great perspective as always. Thank you for joining in the discussion here.
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I related a great deal to many of these posts. Thank you for bringing the spotlight on a difficult subject. .
There is always hierarchy. Everwhere. I don’t know if it is more prevalent among women than men; it just probably exists in different arenas.
There is something within us that seems to compel us to play one-upmanship. I try to guard myself against participating, but certainly don’t always succeed. I have deservedly been put in my place several times.
When I am the recipient, my hope is always that I can find the grace to give the other person the benefit of the doubt – realizing that there is no way I can walk in her shoes or divine her motives. I simply do not know she or they have to do that.
On the other hand, no one can put me down if I won’t go down.
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What a wonderful comment full of your signature wisdom and compasion Lois – I am going to share this on Facebook right now so others can learn from it too x
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The word above is “everywhere.” Not “everwhere,” although maybe it would do. 🙂
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🙂
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Thank you for writing about this. You are right Cancer is cancer. But our experiences are not the same. I know I would rather be in a support group of other gynecologic cancer survivors than a women’s cancer group because the women in my group have similar experiences , side effects and issues different than breast cancer, colon cancer, kidney cancer etc. . I don’t think that a gyn group is better than a women’s cancer group, it is simply better for me.
I admit that sometimes I have pink envy because there is so much more awareness of breast cancer than ovarian but I don’t think I “suffer” more. Nor do I think that I am braver than a nephew who had surgery but no chemo for his testicular cancer.
Non-survivors seem to have more of a hierarchy issue. I was speaking to woman this evening and she asked me if I had breast cancer. When I told her ovarian she got a strange look on her face and said “Oh I’m so sorry”. Would she have reacted the same way if I had said breast or skin or thyroid? I don’t know but I do know that I have gotten this type of reaction many times over the past 7+ years.
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Dee, that is a great point you bring up. I was speaking to someone who has lung cancer and in the hierachy of cancer levels, they get even less attention and understanding. Placing ourselves/others on a scale of being better/worse off is something that happens in all walks of life – not just in cancer. Thanks for the great comment. It is very important to me that we get a diversity of opinions and experiences here. Marie
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This is such an important topic. There’s definitely a hierarchy in public attention for cancer types. On the personal front I felt like Cathy when first diagnosed, like I didn’t have the right to call myself a survivor because my DCIS wasn’t “real” cancer. But I never met a woman in any stage of cancer including stage 4 who didn’t welcome me as a member of the tribe. I’ve heard about it though and I’ve also heard about a bit of a hierarchy in reverse where women with stage 4 are not welcome in survivor groups or events. To me that’s unconscionable. We’re all survivors as long as we are still here and we need to approach it from that common ground, no matter what stage we are or what type of cancer we have. Thank you Marie as usual for fostering a great discussion.
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The more I read everyone’s comments Jackie, the more I realize there are layers and layers to this issue. Thanks for sharing your thoughts on the topic too, particuarly in realtions to Stage IV cancer.
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Marie,
What a fascinating discussion taking place here, Marie. I think it’s human nature to compare our situations to that of others. I’m not sure this can be avoided and if we say we don’t do this, I don’t think we are truly being honest. The danger is when we start to judge as well as compare. While I always try to embrace everyone’s opinions, I know I’m guilty of this too. Perhaps we all are. Compassion, acceptance and understanding – these things are well worth striving for.
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Absolutely it’s human nature and I am no saint either so I am guilty of judging, labeling and comparing too. I guess this is a plea from me for more awareness of others’ struggles and that we are all fighting a tough battle – the last thing we want is to have to also defend our position when what we really need is some compassion and understanding.
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This would make a great future topic for #BCSM … Marie is correct. There are many, many layers to this discussion.
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You should suggest it Blonde Ambition! I would love to see the discussion go further
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You certainly have struck a collective nerve with this post, Marie! I feel I need to find a support group for breast cancer patients with mets, but we don’t have one like that here. I don’t think I would be comfortable in a regular breast cancer support group. I don’t want to scare anyone and I don’t want to say the wrong thing that might be taken as a minimization of someone else’s diagnosis. It’s very tricky.
I believe each of us has a different pain threshold (pain including what kind of diagnosis we get). For one person, a diagnosis of in situ carcinoma is the threshold that triggers big trauma, while for another it might be advanced cancer. We shouldn’t minimize anyone else’s suffering.
The other day I heard a 60-year-old (same age as me) say that she wants to go to a plastic surgeon to have some age spots removed from her face. They bother her and make her feel old. Her husband thinks she is beautiful as she is. I almost said something that I would regret that would minimize her trauma (what is that compared to my forced singlehood and my cancer?), but I didn’t. If that is what really bothers her, then she should take care of it if she can afford it.
Thanks for this lively discussion. xoxo Jan
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I think the diagnosis of breast cancer of any stage is pretty much triggers big trauma. I think that is the basic thing we all have in common.
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Jan, you bring up some great points here. I am sorry to hear that there are no mets support group for you to attend – that is just shameful. I know there is support online, but I also realize that we are in need of face to face support too.
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Absolutely!
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I can identify totally. I feel really guilty when someone shows concern for me. I had breast cancer, stage 2, I had a double mast. and reconstruction. It was not in my lymph nodes, but the oncologist still had me do chemo and herceptin, which I’m still on herceptin until October 2013. I feel bad because mine had not spread, thank goodness, and feel like I shouldn’t be having people concerned about me since it wasn’t in my lymph nodes. So I can understand the guilt trip.
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I’m new here. I just got my bilateral mastectomy stitches out yesterday. Once a gym rat, my exercise routine is now confined to taking walks without the use of my arms for another month. No lunges, no crunches. But no radiation or chemo. I KNOW things could be so much worse. I have my private pity parties, I occasionally send out verbal invitations. But I recover fairly quickly, allow myself a day or so.
I had never really been exposed to cancer victims before, but when I tell my story inevitably the listener has a mother or a friend or a spouse who has a far worse cancer story than mine. To me, that’s the Universe reminding me that I’m always blessed. If a comparison is made, it’s between my ears solely. I never hear it from other people. That in itself must be a blessing.
When people told me they would pray for me and my surgery, it always made cry. I never saw myself as someone who deserved or needed prayers. Something I need to work through.
Sorry to be so long winded and disorganized in my thoughts. God bless all of us.
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Hello and welcome to this discussion. Thank you for sharing your thoughts and your experience. Marie x
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Feeling guilty at surviving cancer is a common experience and a perfectly normal reaction to what you have gone through I have written about it previously – it may help for you to read it.
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Hello all. I am an impostor here because I never had breast cancer. I am 45 years old, I have stage 3C ovarian cancer with mets everywhere and I am BRCA1 positive. In the last 10 months I went through hysterectomy / oophorectomy, 7 rounds of chemo, another unrelated surgery.
It never occured to me to compare people’s level of suffering or feel guilty for surviving or look down on anyone because of their cancer location or stage. It sounds silly to me. We are all human, we all want to survive and be healthy, NED or at least stable. We should be helping each other cope, not getting into pissing contests over ribbon colors and who is the bigger victim.
I wish you all continued health and peace of mind.
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Hi Alexandra, thanks so much for commenting here and you are very much not an imposter 😉 Sometimes I wish I had never called this blog Journeying Beyond Breast Cancer, because I don’t want to limit the discussion to just one kind of cancer or even to just cancer. Your words illustrate for me the universality which I hope is at the heart of this community.
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It took me two years after dx to actually Google for information on my cancer which was Stage IV Triple Negative (very aggressive limited treatment options mainly chemo) and I found various support groups. It didn’t take me long to realize I was back in high school, it took about 6 months before I posted, I wanted to get the lay of the land and understand all the jargon. Like another person stated there is no Stage IV support groups any where around let alone anyone close to my age, I was 29 when I was dx out of the gate with Stage IV, needless to say I was by far the youngest.
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I wrote about this a bit from the perspective of minimizing one’s experiences as they related to the experiences of others (http://wp.me/s2CLwB-just). But as much as we would all like this space where we are all valued and seen as equal in the land of diagnosis and treatment we will, as Diane Glassman pointed out, seek out those with similar experiences. Birds of a feather and all that. Where the insidious danger lies, of course, is in organizations who push and embrace a particular pink ribbon culture that pushes the feminine angel battling the cancer warlord that is defined rather homogeneously and then who is victorious and goes on to participate in walk-a-thons to raise money so that these multi-million dollar “non-profit” corporations can perpetuate themselves and that pink ribbon identity that THEY created..
Some months ago I invited some women over for a day of knitting. We were all breast cancer bull’s eyes in one form or another, but honest-to-goodness it didn’t matter at all. At the time two were post-treatment entirely, another was undergoing chemotherapy and awaiting surgery, another was post-treatment surgically but not chemically, and there was me with the mets. It was the best afternoon ever. We didn’t delve into what made one’s experiences difference from another, instead we had a common craft bond that was the glue so that we were free to listen,empathize,and support one another. One of the women said it was the best afternoon she’d had since being diagnosed. She was free to talk about her fears and experiences and she had felt so supported and loved.
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Susan I am really grateful that you took the time to leave such a thoughtful and insightful comment – it really adds value to this conversation. Thank you. (PS I love you even more now that I find out we share a love of knitting! I love the sound of that afternoon you hosted – I can see how that would really work as a safe place to express emotions).
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I want to plan a knitting vacation . . . any just maybe Ireland will be folded into that as well! We can meet, have tea, and knit!
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Great post, Marie! I don’t know how I missed this the first time around, but I’m glad the Cancer Curmudgeon re-shared it. Oh, I can so relate thinking I was okay & returning to work full-time way too soon. I think part of it was my fault, because I hated being a patient, but I also think my oncs & surgeon failed to warm me about all the side effects & collateral damage that forced me to realize I had to reconfigure things in order to function. And Scorchy is so right. So much of the breast cancer culture deludes us into thinking that we can all just march back into life, like good little pink warriors, and be ‘better’ than ever. What a crock. Thank you, as ever, for providing such a great forum. xoxo, Kathi
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Hi Kathi, thanks so much for taking time to read this and comment. I can’t believe it’s been three years since I wrote this – I feel like I only wrote it a few months ago! But I feel as strongly about this topic as I did back then.
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