Bernie Nolan reveals that her cancer has come back
Two years ago, I wrote about actress and singer, Bernie Nolan’s diagnosis of HER2+ breast cancer HER2+ breast cancer affects approximately 20 to 30 per cent of breast cancer patients. In a woman with HER2+ breast cancer, the gene which provides the code for the HER2 protein has been amplified, resulting in excess amounts of HER2. This excess of HER2 can lead to uncontrolled or malignant cellular growth and the development of cancer. It demands special attention because the tumours are typically fast-growing, and there is a high likelihood of the cancer coming back – which regrettably is now the case for Bernie, who has revealed that her cancer has come back. She admitted: ‘It is harder this time, because that word has come into it…incurable. That was never there before’.
However, she remains hopeful too:
OK, it’s not curable. But the doctors have promised me the cancer is treatable, it’s containable. I’m on medication which is controlling it, and people have lived for 12 years on these drugs. Who knows what new treatments are around the corner?
Reading Bernie’s story in the newspaper today I was struck by several thoughts. I remember when she finished treatment for breast cancer in 2011, the media declared her “cured” and “cancer free”, and how those words sat uncomfortably with me, as they always do. We are never cured – the best we can hope for is to be declared NED – no evidence of disease, but we are always one scan away from having cancer come back. It is as Sarah Mendoza aptly calls it with the title of her blog – The Breast Cancer Lottery. And it is a lottery – for despite our best efforts, sometimes cancer does come back.
I am sad to hear of Bernie Nolan’s cancer recurrence, especially as it comes in a week when a dear friend has confided in me that her own cancer has come back, and another awaits a scan to learn if hers has progressed. I feel angry, frustrated, and deeply affected by their news, which I know is a feeling shared by all of us who hear similar news. Most of all I feel terribly helpless and also a little guilty. I cannot understand why, for now, I remain cancer free, and others don’t – back to the cancer lottery again.
Someone contacted me during the past week to say that my involvement with the NED retreat upset her, as to her mind, it was excluding those who have metastatic cancer. I was truly dismayed when I read her words, as I hope those of you who have come to know me over the past three years of blogging, understand I would never deliberately want to exclude anyone. I have always maintained that this blog is a place for everyone to share their voice – the good, the bad and the ugly side of cancer. And while all our direct experiences and feelings about cancer may differ in some respects, I believe we are all sharing a journey more similar than dissimilar. It saddens me that there is a divide in some parts of the blogging community, not just on this issue, but also on how others are handling their cancer journeys.
I would like to take this opportunity to put the record straight. It has never been nor will it ever be my intention to exclude anyone, but this retreat was born from my own experience of finishing cancer treatment and not knowing what steps to take next. I started Journeying Beyond Breast Cancer for this very reason – to help me through the confusing emotional fall out of cancer treatment – when you are not declared cured, but nevertheless, for now, the cancer has left your body. It is a curious, inbetween place, and my hope is that this retreat will be a bridge for those who are transitioning from cancer patient to the next stage in their cancer journey. The programme has been designed to reflect this, because I have direct experience of what it is like, and it is something I have been addressing for the past few years in this blog. The retreat therefore is an extension of the blog. That is not to say I want to create a “them” or “us” divide but I am not qualified or experienced enough to address the issues facing those with metastatic cancer. I hope this retreat will become an annual event and that we can run something more inclusive next year. In the meantime, I would really appreciate your feedback on how this can be achieved, and am very open to your thoughts and suggestions.
Final word… I am not a great one for praying anymore, but I know many of you are, so please, please hold my friends who are facing another tough challenge with cancer in your prayers. And to my precious friends who are dealing with this right now, I may not have the greatest faith anymore in a religious sense, but I do have great faith in love, friendship, compassion and kindness and that I am sending you in spades. You are always in my thoughts, and my imperfect prayers xxx
It’s a sad day Marie. Like you Bernie’s news touched me greatly. I hope she gets all the support she needs just now. And with your friends news too , the impact will be huge for you too. I feel for your dilemma of the NED course. You can’t cover every need so it’s not inappropriate to target it. However the issue remains that the support for women with metastatic breast cancer is poor everywhere. And they are right to feel cheated. That doesn’t mean you have to solve it but I’m sure like many others you will campaign for improved support for these women who are being let down just now.
I very much understand the guilt, survivor guilt. I don’t understand why we are ok when others aren’t. But what I do know is you are doing your best to support this vulnerable community. Thnak you. Thinking of you and all the others in Bernie’s situation. Ax
Oh there is so much in this post, Marie, I am not sure where to start with my thoughts…
I am very sad to hear that Bernie Nolan’s cancer has progressed, and that your friend has also been diagnosed with MBC. It feels relentless. Like Audrey I hope that they are able to find a treatment which keeps them well and the progression stalled for a good long time.
I also remember the conflicting emotions hearing the press declare Bernie “cured” and seem to remember that it was portrayed almost like a “year out”. It makes it so much more difficult to express living with the fear or recurrence or progression. I am sad that it takes this kind of news to highlight the reality of recurrence and metastasis probabilities.
I also keenly feel the sense of a “divide” and struggle to find language which does not reinforce this. I still feel that on diagnosis we cross a line, and we cross that together. I feel that we are all cancer veterans, and that the term survivor, albeit positive and reassuring, is not accurate as it implies that cancer is behind us and that “phew” we have got through it ok. That does not mean that I can begin to understand the reality of living with a stage 4 diagnosis, and recognise the woeful inadequacy there is towards support and treatment for metastatic breast cancer.
My final point (I think 😉 ) is that I appreciate your recognition that hat the cancer experience varies so much depending on so many factors. My own concern is particularly around the situation for people in developing countries and the lack of real awareness and access to treatment.
A heartfelt and sincere post, Marie, thank you for sharing this so sincerely.
I love that line of yours Philippa that on diagnosis we cross a line, and we cross that together.
as Philippa says.. Marie there is SO much in this post which resonated with me. I read a newspaper article on bernie nolan today and it was full of the bravely battling cliches which set my teeth on edge. I like how you say we are only ever one scan away from being in Bernie’s shoes ourselves and as cancer survivors we live with that knowledge all the time. Regarding the comment about the retreat being too exclusive, while I take that point, I hope at this stage that people know you well enough to know that this would never be your intention. I know that you are doing the retreat from a place of wanting to share your own experience and help others in that post treatment limbo phase you often write about. Keep up the great work!
Sad to hear this about Bernie Nolan and also the friends you mention. It is such an unpredictable disease – a lottery indeed.
Sadly Bernie Nolan was diagnosed with a very serious form of cancer, although there is no good cancer to get and as you say we all live with the possibility that we could be hearing the bad news of recurrence ourselves.
I am glad to hear you bring up the topic of the divide in the breast cancer community . I have been shocked at how downright vicious it can get. People, please.. we are all walking a difficult road..show some kindness and compassion and respect whatever way we choose to walk that road, even if it differs from how you might choose to walk it yourself.
I see the same thing when people are attacked for trying to show that cancer has brought some positive things to their lives. I squirm when I read the hurtful remarks of many in the blogosphere about a person’s right to be positive if that is what gets them through.
This is a great discussion! I look forward to hearing more comments but for now i want to say thanks for bringing up these important points about the cancer lottery, how we are not cured, and the divide in the cancer community which dismays me as I see it getting wider by the day.
You raise some really important points in this post. I deplore the use by the media of terms like he/she has received the all clear. I think we only ever get to hear those words when hearing them in the media.
Oh Marie, I think i can speak on behalf of many of your readers when we say you are the most inclusive, supportive, kind and helpful person I know in the blogosphere and I fully get why you have chosen to focus on one group of cancer survivors in this retreat.
I have been digging through similar thoughts and emotions at this time too. I find the divide in the breast cancer community frustrating, maddening and ultimately a waste of energy. I received devastating news from a friend, his girlfriend has been diagnosed with an extremely rare and “incurable” cancer and has been given a timeframe of less than 2 years to live. *heartbreaking* He was wailing and complaining to me, and I understood his space so I opened my heart to him to let go of some of his concerns… and then he said to me… “you’re blessed that there is a cure for your cancer, why did MY girlfriend have to be so unlucky”. *sigh* His words pierced my heart like a knife. Normally, those words would have cause me to retreat into a fighting stance but since I knew that he had no idea what he was saying since he’s just getting started on this cancer journey, I let it slide. But the reality that people do not seem to understand is that we’re all living in this shadow, this grayness… You learn to hold your breath and yet push forward at the same time. It is a tenuous balance that we must strike. And all of us have to do it because none of us are immune from being that person dealing with a recurrence of our cancer. I have no answers, only questions, only tears, only frustrations… But I thank you for this post. I shall put words to my own thoughts on the subject today as well.
You know Nicole that our brief but shared discussion on this topic last weekend in London (how I love saying that!) has been playing on my mind (as have other things we talked about) and then I came home to the email I mentioned in this post and have been grappling with how to handle it all week. I have done a lot of soul searching in the process and just as you say, I have no answers, just a heavy heart and a deep desire to bring us together in a more compassionate and understanding place. Marie x
Marie – I salute you for inviting discussion of yet another dificult topic. I too, am saddened to hear that Bernie Nolan has been re-diagnosed – as I am saddened whenever anyone is re-diagnosed. Having been through that myself, last year, I know how it felt. Like you, I don’t understand why some people create a divide where one doesn’t need to be. When I was first diagnosed, in 2008, I thought about writing about my own experience: first of all trying to heal myself without medical help, and then adopting the traditional treatments that I agreed with, together with complementary therapies. However, I was concerned that people might think I was saying: “This is the way to do it”, and I didn’t want to give out that kind of message. I also didn’t want to incur the wrath of people who disagree with complementary therapies. We all have a unique journey, there is no single right way to proceed – we’re all doing the best we can with what we have and what’s available. And in that, we should be united, not divided. With regard to your retreat: this is the sort of thing I wanted to offer, but again I wasn’t sure how it would be received – so I congratulate you for putting it out there, and I know it will be a wonderful experience for those who join you. I think that, for anyone who has been diagnosed with cancer, there’s a “before cancer diagnosis” and “after cancer diagnosis” stage, and life is never quite the same after cancer diagnosis. Perhaps life is not the same for someone with NED and someone who has metastatic cancer. However, I believe that some of the things that those of us with NED experience, we share with those who have metastatic cancer. We share some of the same questions about how to live our lives more with purpose in the time that remains. For even if we are NED, there is no guarantee that we will never be re-diagnosed, so we all live on the same knife edge. There are differences between the two groups of people, just as there are between any two groups, but there doesn’t need to be a divide. I’m sorry if I’ve rambled on a bit – “short and sweet” has never been my forte!
Oh Julia, please don’t apologize for rambling.. which by the way you didn’t! your points are very well made and really helped me see things in yet another light – thank you xxxx
I attended an exercise class in a heated pool specifically for women who have had BC and as part and parcel of the program we were asked to say a bit about our BC. I remember after I said my piece how a younger women with children who unfortunately had a far more serious BC diagnosis came up to me, eyes burning and told me how lucky I was. I certainly did not feel lucky as you all would realise, but I realised my story had evoked in her an irrational feeling of – jealously is not the right word here, but she was pissed that her diagnosis was so much worse than mine. I remember years ago a female relative who had lost her unborn baby telling me how cranky, jealous and annoyed she was around any pregnant women or those with new borns. So much so that she had to actively avoid them as she felt close to saying something unable to be excused. I recalled that relative when the younger women with the far worse BC diagnosis came up to me and told me how unfair it was, how she had children and I did not and how my treatment was not as devastating as hers.
There is one part of me that wanted to say hang on – I’ve been through the mill too and there are no guarantees for either of us – but I didn’t. Just put my arms around her and gave her a serious hug. She cried and cried. I had no taste for defending myself with her and really I was not in a great place, so had no energy for argument. Most unlike me!
It is a tough situation being criticised for the NED retreat. You can’t be all things to all persons with BC at all times. And when someone is hopefully able to feel less anguished, they will recognise that streaming out of some special interests can be a good thing. Not everyone has triple negative BC but I would not begrudge them getting together to talk over specialist issues relevant to them and not me. But many of us may recall a particular time in our treatment when we may not have felt so magnanimous.
Coco, what a wonderful comment – I really appreciate you taking the time to so honestly share your thoughts and your experience. As someone who has had to deal with the pain of infertility and pregnancy loss in my own life, your words really hit home for me. I often find it difficult to be around women with children or who are pregnant, and have to work hard not to feel envious of what I see to be their good fortune (I fail more often that I succeed!) I feel excluded from much that goes on in my community as it is so family oriented, so I really get the feeling of exclusion. I guess the point of all of this, is that we all walk a hard road, and while we might think there are degrees of pain and suffering, pain and suffering hurts us all equally. It behooves us to be kind and compassionate to everyone we meet for in reality we don’t know how much someone is truly suffering.
First Marie please accept my wishes for comfort in the face of your friend’s recurrence. I too cringe when women just out of treatment are declared ‘cancer-free.’ I shared the concern about the name of the NED retreat, wondering about how some of our friends facing recurrence would feel about that framing. Last year I went to a cancer survivor retreat, one of several I have participated in. The approach has been to be widely inclusive, with different sessions geared toward common and different concerns. As somebody who is presently NED, I found it useful to meet and befriend people with advanced diseAse, helping me realize that, if I do share their fate down the road, it does not mean the end of all joy.
I have not believed in a deity who changes our outcomes based on the deepest wishes in our hearts for a long time. The kindness and love you mention are my experience of the sacred and holy in this world. I will put forth prayers that your friend is surrounded by these as she faces her new circumstance.
There are so many things that can divide us.. geography, colour (I’m a Canadian, you see) of our skin, what we have more or less of. Those of us who have been diagnosed feel separate from those who have not had cancer. “they don’t understand what it is like,” we say. Then there are those like me who have had recurrences, but are still not living with metastatic disease. We can allow these differences to define us or we can make a community of women who just care about each other.
No one knows what the future will bring and we all live with some uncertainty or another. The empathy that we feel for each other can be the defining force that brings us together in the determination that no one will feel alone, unloved, left out.
Each of us matters, our experiences matter, and although we can’t know what happens next, we can know one thing. There is always someone who can listen, there is always someone who cares and empathizes.
A couple of things: With HER2+ there are new treatments out and or in late phase trials. There are drugs you often can do with Herceptin that are showing promise. The main ones are: T-DM1 and Perjeta. Then there’s combination of all existing drugs like Herceptin and Tykerb with chemo. I recently wrote on this and you can learn more at http://www.1uponcancer.com/breast/.
The second thing: That’s sad, Marie, that anyone would have an issue with you writing on NED. That’s a huge one for so many people – that story can be told from the perspective of someone currently hearing “NED” and someone who was once told they were NED who has since sadly learned they are no longer such. To not tell a story because it isn’t everyone’s case serves no one. We all have very individual circumstances and while some stories will speak to some people, others will speak to other folks. So you keep on doing what you do. 🙂
I commend you for talking about such difficult subjects: Cancer recurring, the line between those with NED and incurable, pain, and your honesty with struggling with praying. I hate cancer! I hate hearing about the return of cancer. The whole in my heart gets bigger…and I always find myself asking…next time is that going to me? It really grieved my heart that someone thought you would purposely divide NED and stage 4’s…may I commend you in your accomplishments of being an example of the “what now?” By sharing your journey (with the ups and downs) and now with this new retreat…you are showing cancer and the world–YOU are the winner!!
Sorry to hear about her cancer’s return, but Marie, surely feeling guilty about remaining NED is fruitless. There’s no real ‘why me’ or ‘why not me’ to consume your existence over. Life is random, so are sickness and death, in my book. You know I don’t have cancer (Actually, maybe I do but I’m not aware of it just yet ) and would very much like to keep it that way, but statistics go against my hopes… big time. So my faith rests on the men and women working relentlessly to turn all cancers into manageable diseases to allow us die of something else completely in a good few years time. What’s going to kill me, you or even Bernie remains a mystery though. She’s right to place her trust on medical advances and remain positive. I hope all of you (us) affected by cancer and recurrences find the presence of mind to focus on the present time because it is the only thing up for grabs there is out there.
Much love and strength to you all
I just wanted to let you know that you and those you are praying for are also in my thoughts and prayers.
Given your position that there is/should be no divide, may I assume that metastatic breast cancer patients who are NED have also been invited, that the retreat has been set up to address their needs and situations and that some are already signed up?
Dear CJ, yes indeed, everyone is welcome and one lady with mbc has already signed up. The program is about rest, renewal and relaxation with an emphasis on yoga, walks, talks on nutrition and exercise. All those involved are giving their time for free and again this is very much coming from a place of experience as someone who felt very much lost and alone when I finished my own treatment for breast cancer. This is a pilot program to assess the interest and the needs of those transitioning from cancer treatment based on my own personal experience. I am very open to suggestions and advice on how to improve things for next year, and am grateful for everyone’s input. Marie
I don’t know if I can write coherently with the wind swirling outside my door but I feel like I must. I am so sorry about your friend. I am so sorry to read about ANYONE who is diagnosed with this disease. It is often portrayed as a proverbial walk in the park cancer. I wish I could share the depth of the lingering physical effects…. from those suffering -NED- with severe neuropathy or lymphedema …. to the damn itchy skin that had me wiggling out of my bra in a restaurant last night. I wish I could share the psychological effects that ALL of us experience. Many of us never stop looking over our shoulders no matter how far out we are… nor how early our cancer was diagnosed.
Many of us with early stage disease have taken up the challenges presented to us by those with metastatic disease. They have asked for our help, our energy and many of us have picked up that baton on their behalf. We are one community and it saddens me that those of us who need the most feel like outcasts.
I know you for over a year. You are one of the most compassionate and all encompassing people I have the pleasure of knowing. Thank you so much for this blog which has brought together a global community.
I send my best thoughts and love and wishes to many. I “keep tabs” on a whole host of Stage 4 patients and I now added more to that list. Sadly, I know the list will keep growing until true change occurs. I hope those with MBC know that there are MANY of us pushing for that….
Sending love to you..
First I’d like to say that I never experienced anything but kindness and inclusion from you, although our diagnoses were completely different. The bottom line is we can’t be all things to all people, nor should we. I’ll use our treatments as an example. It’s incredibly important to understand your specific type of breast cancer to get the best possible care. You have simply identified one of many types of cancer patients to offer a retreat to. I have no doubt the framework of it would and could apply to any type of patient, (triple negative, inflammatory, metastatic…). You have wisely chosen to start with where you are personally at. This is the foundation for success. You try something, tweak, and add as you go. Bravo to you! The only failure is not trying and there will always be people who won’t be included by the very nature of the “niche”. At the end of the day it all boils down to we are all members of the human race, no one better than the next, just different 🙂
Marie, I am saddened to hear about Bernie Nolan’s situation. It’s terrible to hear. Marie, in all the time I’ve known you, I know you to be inclusive, warm, caring, and very tolerant of others’ opinions and discussions about breast cancer. I agree there is a divide (several, actually) in the breast cancer community. There is room for diverse opinions and experience, as no one’s experience is the same as anyone else’s. Also, I have no tolerance for people who try to define other people’s reality. Keep doing what you are doing, Marie. I’m proud of you!
You are one of the most heartfelt, compassionate and loving people I know in the blogosphere. In fact, you have elevated inclusion into an art form on your blog! So it hurts me to hear that your idea to help a segment of women get through a process you yourself have struggled through is met with criticism. In fact, it stings.
However, at the core of that person’s complaint is a really raw truth: To no longer be NED — or to never have known NED — is devastating. And a person with advanced cancer hasn’t the strength (nor the time) to hold seminars to help other non-NEDs. It falls to the NEDs to do it. So maybe that is where that person is coming from.
I applaud them for voicing their opinion. That’s the place from which true change occurs.
We can’t be all things to all people, and that is OK. I too am so proud of you, Marie, for forging this new path and sharing your knowledge and experience with other women!
What a great topic Marie. The terrible divide is heartbreaking. When my mother was diagnosed back in the mid- nineties, she was give only a few years to live. She never shared that with us, so we were all the more shocked with the first recurrence. She endured endless chemo and declared terminal, yet she still held on for 13 years. It wasn’t that she had such a positive attitude, but she was determined to see her grandkids grow up. She took the conventional route, but tried everything else in her power to extend her life…never did she believe she would be cured. Life with MBC. Did anything she tried make a difference? Who knows; what mattered to her and what matters to me is that if I’m going down, I going down swinging. By being an active participant in my care, I feel like I have some control. Is that the best? Who knows. But my mother passed after my surgery and my sister was then diagnosed…I was strongly motivated to learn and to participate. Do I feel like I am lucky to have been diagnosed early? You bet; is this any guarantee? No way. In fact, I get so incensed when I hear celebs say stupid things like “I had a bilat mx so I am guaranteed it won’t come back.” Not that we should all live in fear (ok, so we do) but to give that kind of false sense of security ….well it also encourages people to take that route when that might not be the best route for them. I also take issue with “ cancer free”…my friend, a young mother was cancer free the November after her May diagnosis (not bc) and was terminal the following Feb, passed that May. All that said, women with MBC are in the most difficult situation, that is for sure. I do think that they are neglected as they seem to be cast off for dead by their doctors…..not in all cases, but surely for many. I wish more would tell their patients….well, I can keep you alive for a while with chemo….but hey, maybe you want to try something else…at least offer it out there, admit that the chemo is not a cure. Is this the road for all, certainly not, and it can be rudely expensive….not as expensive as conventional, but all out of pocket. Instead of playing God with people, govt’s need to take a look at the alternatives as an option…to save lives and this, btw, will lower health care costs.
Enough of my ranting….anyone who has been diagnosed is a candidate for MBC…so, while we may not be in the club right now, it’s in our best interest to band together in this effort….no more awareness, no more Rah, Rha for early detection…its all about cures, and yes, for our children, it’s also about prevention.
Awoke to this compelling discussion in the Southern Hemisphere and then had to dash off to work…am grabbing the chance to participate before swimming lesson duty, so please excuse any garble!!
At the risk of causing offence (!!) this reminds me a little of some discussions/divides that I witnessed in the ‘infertility blogosphere’ quite some years ago. I started reading some of the fantastic blogs in this realm after some women I ‘met’ online during my ‘trying to conceive’ days experienced infertility. There was a very lively and dynamic group of women writing on this topic – I still read many of their blogs years later. Issues arose when some managed to conceive and others didn’t, though. I recall divisions, unintentionally hurt feelings, and discussions about how there should be no sense of a ‘pain Olympics’ intruding on people’s relationships, discussions and ability to write about their experiences. All very messy and complicated when there were such intense emotions at play – and completely random outcomes, with no fairness involved.
I had to chuckle at Jan’s comment. Even though I’m very much a newby in BC blogging (with a much-neglected blog that was always meant to be a very personal reflection, and not just about BC) I must confess that I’ve felt increasingly cautious about the words that I use, due to a growing fear of causing offence or irritation. I, too, reach for quotation marks with ‘journey’ and ‘survivor’! I haven’t written about involvement in the ‘Survivors’ Lap’ at the Aussie cancer fundraiser ‘Relay for Life’ (an emotionally complex but powerful experience that I was fortunate to share with my best ‘real life’ BC buddies) partly because I wasn’t sure if participation seen as the ‘done thing’ due to the complexities -which I completely appreciate – around the notion of survivorship (I walked shoulder-to-shoulder with women with MBC at this event, mind you). Things reached a crazy pass the other day when I felt a twinge of concern about a little Tamoxifen-themed post, worrying that it might annoy hormone-negative women or women who had bad experiences with the medication! You’ll be glad to know that I was daring enough to publish and be damned!!!
It is such a shame that the retreat caused offence that I know was completely unintended and an outcome that would upset you greatly, Marie. Words can be so tricky. I wonder if you’d called it the ‘Journeying Beyond Breast Cancer Retreat’, would any of this have arisen? Perhaps it was good that this happened, though, as it has provoked such an interesting and worthwhile discussion. I resolve to ‘blog on’ without worrying so much, and hope others will feel free to write whatever they like. Blogs are so much more interesting and powerful that way.
It’s a great community you’ve nurtured here, Marie. Affectionate greetings all round!
Liz, I really appreciate you adding your comments to this discussion – it is interesting that the infertility blogosphere has come up again, as it is something I would also have a lot of experience of and it is another sensitive and emotive issue. I want to point out that i had no control over the name of the retreat, which was already named by the time I was asked to come on board. I had concerns from the start about how it would be perceived but was in a dilemma – wanting to share my experience on the subject but fearing it would cause some upset. After much soul searching, i decided to go with it this year and see what changes we can make next year. The power of words is a huge subject and one I have touched on at various times on Journeying Beyond – I can see it is something I will have to do some more thinking and writing about in the future. Keep on blogging – I always enjoyed your posts when you write them 🙂
A much longer reply seems to be MIA, so I will keep this brief.
First, my heart goes out to you; I am so sad for what you and your friends are facing, and you will all remain in my prayers. My you have stregnth and wisdom and love for the road ahead.
As for the retreat…I want to believe that the “Why not mets?” email reflects the incredible lack of resources for those of us with mets. And I most assuredly would never see you as someone who would exclude ANYONE. I hope mine and the other comments here help allay your concerns!
The “divides” in breast cancer are not okay. There is so much more that unites us, and we need each other for stregnth…both in our unified voice to everyone else, and to lean on when we face callenges. I have been and will continue to be quite vocal about that!
While it may sadden me, I know that with my still-improving health, some mets patients struggle to embrace me; that I don’t quite fit into their club. Nor does my experirence sit comfortably with those who have DCIS and feel that they have (hopefully) “dodged the bullet,” for whom I embody their darkest fears.
We need to reasonably acknowledge that nothing can be all things to all people. Just as I would not want someone with Stage I in an MBC support group, NED is a very important subject around which to gather…and those who are not NED just aren’t in that place. As CJ mentioned, someone with NED and mets should certainly be included. And perhaps there is a role for someone with mets to come and openly address/answer the fears of those who are NED as part of the retreat…
The upshot (did I say brief??): You should feel wonderful about what you are building – it is a true gift for those who need it right now. No one can serve everyone, even you!
” There is so much more that unites us, and we need each other for stregnth…both in our unified voice to everyone else, and to lean on when we face callenges. ” This encapsulates everything for me,. Lori, you are wonderful voice in the BC blogosphere, I discovered you very recently through JBBC and my admiration for you is boundless. May you be well, may you be happy, may you be at peace xxxx
This has been an amazing discussion. I don’t know much about mets, but i do know a lot about you Marie and I know your heart is in the right place. You are one of the most sensitive, caring and kindest people I have ever met and I know you would rather die than hurt anyone in this world.
We can all relate to feeling as though we’re living in limbo, not knowing whether our cancer will return. That’s why it’s especially important for us to have support and a retreat like NED. The negative comment you received is not the norm, so I hope you will let it go. I understand your stepping back from God, but He’s still there, and I firmly believe your mother is with Him. God doesn’t micromanage our lives. Yes, tragic things happen, but I know He has been the source of my strength the last two years.
There’s so much I haven’t shared. This time has taken a toll that’s been heartbreaking, financially devastating, aging and has taken well over half of my hair. At the same time, I was freed of a financial burden in a terrible economy that could have bankrupted me. There’s no way that could have worked out in my favor except by the grace of God. Even my friends who don’t have faith say it was a “God thing.”
You’ve been through so much yourself, and you continue to be a beacon for ALL who know you an read your blogs.
Thank you for, as always, creating a platform for an important discussion. The divide I see in the breast cancer world saddens me too. It particularly upsets me when people criticize or attack other people for not creating perfect programs or not considering every single person’s needs. None of us can be all things to all people.
Do we need more programs and support for MBC? Absolutely. But, I have every belief your intentions came from the right place. Perhaps the words NED are too loaded for any of us to be entirely objective about this issue and perhaps next year, the retreat format and structure will change in response to the diverse needs of the breast cancer community. But, isn’t life about living and learning?
The more scared or angry we get, the more we tend to discharge our emotions on someone else. But, let’s be angry at cancer and not at each other. Let’s support each other in building services or programs that help people at different stages of the journey and let’s encourage each other to use our stories and our passion to build positive change and not waste energy tearing apart the good intentions and efforts of members of our community.
I am late to the discussion, having spent most of the morning in church singing, worshiping and asking for prayer from friends.
I join you in your disappointment over how divided the breast cancer community is. I find I can’t even use certain words (like “journey” or “survivor”) without feeling like I have offended many. I have to put these words and their gerunds in quotes.
I agree that each person’s walk is different, and if someone wants to maintain a positive attitude, no one should judge and say that is wrong. It may make all the difference in that person’s life.
I know it’s hard to ignore criticism like that which you received. I learned late in life that I can’t please everybody. I still wish I could. But all we can do is educate, and that is what you are doing in this post. I agree with the others that you are one of the kindest, most compassionate people I know and would never intend to hurt a soul, not even a mouse. So keep on keeping on, and don’t get discouraged.
With much love,
i was saddened to hear about Bernie Nolan and your friends. I am also saddened by the fact that there is a divide in the cancer community. Why oh why? We are all in the same boat paddling for all we are worth to get to the balance and exceptance and where ever each individual needs to go. When I read this it felt like a football match. We should be helping each other, listening. offering a shoulder …..nobody understands what another person is going through. If you want to know my life live in my shoes. Maire your retreat is a brillant idea that has grown and is now happening. I wish I could attend. Having no worries only to turn up to the wonderful talks, walks…It takes alot of time and energy to organise this weekend. As individuals we have to make our own decissions as to what way we want to deal with the cards we have been dealt.Support groups are not very ones cup of tea. some people dont want to talk about their illness. We also have to understand and respect what others are going through and want. Maybe this lady was having a bad day? We have all lost dear friends to this terrible disease so lets not be divided. stand by each other, shoulder the pain and deep hurt and guilt that has been given to us all. Marie, your blog and all the other blogers are a breath of fresh air who give us strenght, hope and something to look forward to read at any time. Ye all have the courage to write what we think, what we want to say and what the real truth of dealing with cancer really is. Mostly it’s after math. We all want the happy ending, Keep up the amazing work Marie. Ohhh delighted to read your wonderful piece in the Sundy World.
I am so sorry to hear about Bernie Nolan’s situation. Having had my closest breast cancer friend have a MBC recurrence when mine was not and she also went through primary chemo with me. We had all of our surgeries together plus so much time in our lives, I relate to how sad you are when this happens to such a close friend. I also know you to be such a caring person and I know that by making the NED retreat your heart created a loving environment for people to celebrate their survivorship. Honestly in the back of my mind when I read about I did have concerns about the name because of the MBC community, but knowing you I was afraid to say something because I knew it would open a can of worms and we are all in this together, and I know what an incredibly caring and giving person that you are. I think that we are trying so hard to be one voice, and yet I know there is a difference when someone has early stage breast cancer and finishes treatment and is told they are NED…they don’t have Stage IV MBC. I think the retreat is a beautiful idea and I believe that everyone who goes through breast cancer is a survivor the minute they have the disease no matter what stage they are at. Celebrating life after a breast cancer diagnosis no matter where you are with it medically is worth doing. At the same time I am passionate about making sure the MBC community stays with those of us who think we have NED and I want so much to be inclusive and get much more money funded for MBC and make sure that all of our lives have meaning and we can acknowledge this disease as something we all want to see an end to for early stage as well as MBC. I want to use the right words and I do not have a problem with the word survivor. But if I am insulting anyone with MBC I do not want to do that. This disease is so complex. I cringe every time I hear that someone has been given a MBC diagnosis and watching my best friend live through it….Words can be tricky. I want to say the right things and yet sometimes there are no words to express what a MBC diagnosis means. But I am grateful when the Metastatic community is including us in the conversation, because we are in this together #fearless friends.
I also have noticed several divides – it isn’t just whether one has mets or is NED. It is whether one lost her hair or didn’t, whether one had chemo or didn’t, whether one had chemo before the anti-nausea drugs or not, whether one chooses to be positive or just can’t quite manage that, whether one loves the word “survivor” or “thrivor” or hates them all, whether one has the courage to stand with those who are metastatic or doesn’t. The list goes on. I agree that it would much better if we could stand together. Marie, you are promoting that, over and over.
And then my little two cents on mortality once again:
We are all going to die–the question is when and how untimely it will be. Crossing the cancer line (age 59) brought a new awareness of the preciousness of life to me. And although I do not yet know, I would imagine crossing the mets line brings a much sharper awareness. Being told “You are terminal–it may be today, but no longer than a month,” as my son-in-law was, brought death into incredible focus to him and our family. (It was exactly a month. “Today” might have been better.)
Growing old has a tendency to focus one’s thoughts as well, although obviously my death would not seem untimely to much of anyone but me.
But meantime–to me that is the issue. What will we do meantime………….?
I’m late to the discussion, as well, but must chime in to say that in the time I’ve been reading JBBC, I’ve never once observed anything that hints at exclusionary behavior in any way, shape or form. You truly are incredibly compassionate and well-versed in multiple aspects of this disease we all share; yours was one of the first blogs I started following after being diagnosed, and I’ve found not just invaluable information, but more importantly, an entire community of women I consider very near & dear to my heart. While we’ve never meet, I feel I know many of the bloggers from the sharing that occurs, and you my dear are the glue that holds us together.
The divide saddens me very much, because we all need each other, whether NED or stage IV, whether in the throes of chemo or having decided to avoid it, whether bald or with hair, whether reconstructed or not. Whatever form each person’s breast cancer “journey” takes, I have no business judging others along the way, and I certainly don’t want anyone judging me and my choices. Like you, I started blogging to try and make sense of the in-between stage, and I’ve benefitted tremendously and in myriad ways from connecting with other BC bloggers.
Our “journey” is indeed more similar than dissimilar, and I truly believe we have much to learn from each other and can understand each other in a way that one who has not walked this same path cannot.
Much love, big hugs, and lots of gratitude to you.
i, too, am so very sorry about bernie nolan. her announcement on top of the news of your dear friend’s recurrence as well as your other dear friend awaiting scan results must be so overwhelming.
how sad that you experienced such a negative response about your NED retreat. i, too, have recently been deemed NED, after an intial diagnosis of ST IV metastatic BC. though i am not a blogger, and, in fact, never read a BC blog during my treatment, i have done all that is possible to become involved and lend my support to a myraid of issues surrounding BC. i honor and learn from every story shared, from every emotion expressed, and though it was scary at first to find such controversial, sad, and, at times, bewildering “divides”, i think the forum you have initiated with this post helps us see that, no matter where we are on the BC journey (i will NOT feel bad about myself using that term), we need, and more, we benefit from staying a close-knit community. we are enriched when we feel empathy and direct it straight to a hurting heart. we lose ground and dis-honor ourselves if we lash out with judgements and harshness, assigning blame and shame.
marie, you are so compassionate, you give so much of yourself to so many, you inspire hope for so many needed changes, you write with such candor, from your heart, and from so many carefully considered viewpoints. i am so glad that you wrote about the comment that distressed you, so that those of us who are so very grateful for your presence in our lives could reach out to give you reassurance and support.
perhaps it isn’t really that you feel “guilty”, but more a longing that all you cross paths with could have peace and comfort, wherever they are with their diagnosis. when i was deemed in NED, i felt sheepish about talking about it in my comments on various blogs. but then i realized that having gone to hell and back with my diagnosis and treatment gave me the right to feel happy, to enjoy a respite from treatment, to celebrate the places on the calendar now noting some fun stuff for a change. and guess what – for every comment i ever wrote mentioning my new NED status, every response was congratulatory, loving and supportive. shouldn’t we grab every chance we have to champion any good news, whether it’s us or another person? – -just as we offer empathy, and give our heartfelt support to those who suffer a new diagnosis or the agony of a new symptom, or a full-blown recurrence?
i consider the NED retreat very good news. NED was good news, but us NEDs are no dummies; we know it can be taken away in a heartbeat. and yet, we so want to find our way to a life we can live fully and meaningfully, a way to feel safe as we are released from the watchful eyes of our medical team, a way to find a balance between the realities of BC and re-inventing a new way to live. so, dear marie, i wish you a wealth of wonderful experiences and a great sense of fulfillment with this new venture. i wish i could come!
with gratitude and love, xoxo
Oh karen, there is so much in this comment – obviously I am touched by your kind support, but also what you have to say on being NED is incredibly moving and humbling, eloquent and full of compassion. I wish you DID blog.. can I persuade you to take it up?? I would love to read more about you.. but if I can’t persuade you, I do hope you will continue to drop by this blog and comment from time to time. Stay well and happy xxxx
Bear with me as I reply to all your comments individually on the latest post on what divides and unites us and the difficulties surrounding our use of cancer language and terms. Your comments have been amazing and it is taking me some time to read and reply to them as fully as they deserve
I’m not exactly sure what everyone means when they speak of this division. I don’t see it this way. I see strong-minded women with deep convictions and opinions. In my view, this is a good thing as it opens up dialogue (this post is a great example) and broadens acceptance of everyone’s unique cancer experience, or at least it should anyway. Everyone is entitled to their own “cancer truths.” I think we all agree that in the past the mbc community has not been embraced as it should have been. We all agree about the difficulties faced when the initial round of formal treatment “ends” and we all agree about the challenges of moving forward in our lives whether we are NED or not. I also agree with Renn’s comment, “And a person with advanced cancer hasn’t the strength (nor the time) to hold seminars to help other non-NEDs. It falls to the NEDs to do it.” I share concern about the title of this retreat as it seems most of the workshops would apply to almost anyone after a cancer diagnosis. So why not just open it up for everyone the next time round? We have much to learn from each other no matter what stage or point in our cancer experience we are at because in the end, we are all in this together.
I do know that you are a wonderfully caring and compassionate person, Marie. You always strive to be welcoming and non-judgmental and you are greatly respected for these things and more. The very fact you were so deeply bothered by one comment also speaks volumes about the depth of how much you care and I thank you for that.
Hi Nancy, I very much appreciate you sharing your thoughts on this topic and will be passing on your comment and others to the organizers in a bid to make the event more inclusive next year.
I’m late to the dialogue, but am compelled to comment – it’s such an important topic, and it’s important for supporting one another as well. Here’s just how I see it: Language is so challenging. As someone who does online social support and mixes with people at various places regarding cancer, it’s difficult not to tread on toes. I wonder a bit too long before writing ‘survivor’ or ‘journey’ or ‘positivity’ (also in turn cringing at the term ‘new normal’) in posts, and while some of the ladies on our page champion the colour pink, others understandably want no part of it.
Whether we’re talking diagnosis, treatment, NED, metastatic – it’s all cancer and you are right to say there are more similarities than differences. Nevertheless there are differences; who I am today is not who I was on the day of diagnosis . . . and chances are, I’ll have changed considerably in ten years regardless of any cancer status. We may have some different needs as a response to these changes.
Compassion is a good word, I think we should apply it to one another and appreciate that individual needs often reflect where we are in that moment. So if we want to say survivor, new normal, I love pink, I am sick of cancer, screw pinktober, let’s be positive – or whatever . . . then that’s worth reading with a little compassion thrown into the interpretation.
I’m very sorry for your friends, and will keep them in my prayers.
Thanks so much Catherine for your thoughful comment – I really love what you say about approaching all of this with compassion x
This has turned into quite the discusssion!
Just read this blog posting before heading to my third cycle of chemo… It is true when talking about cancer people do think your cured when having a mastectomy let alone chemo… The importance of wording during a diagnosis for people to truly realize the impact breast cancer has not on just you, but your family also is so misunderstood in Cancerland… At the end of the day it falls on those that are on this merry-go-ride too say NO! Wake up!… Whilst you may believe I’m being negative I’m actually a realist on my diagnosis and in cancer land you can never say never…
Like Bernie my cancer is HER2 +++ on pre-cancer which now has developed into stage 3 cancer… and I sat in a room full of men and women pointing out the differences and how cancer is tailored to you..at Westminster Fly-in… Knowledge is power and words hit hard if used correctly… Sending love your way Marie Keep up the blogging xxxx
Sending love right back at you too Sarah xxxxx
So sad to hear about Bernie Nolan. Thank you Marie for your honest and helpful comments. Constance vigilance is the best hope.
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sad to hear Bernie Nolan has gone I met her many times when i was working as a pro drummer in Blackpool, she was a great person always had a happy face and had time for people, a great singer and great person, A sad loss, Alan Edmondson