Karin Sieger

@karin-sieger | contributor
Karin Sieger is a psychotherapist, writer, podcaster and cancer counsellor for the cancer community forum of LiveBetterwith.com. She offers support globally with motivation, personal transitions, grief, making peace and the emotional impact of cancer, with which Karin has been diagnosed twice. She does her writing and recording on her orange houseboat in London. You can find out more via KarinSieger.com
Karin Sieger

Cancer 'Good News' Stories Must Not Sugar-Coat the Reality

Cancer “good news” stories cannot take away from an important truth. Here are seven important points to remember. When it comes to health and illness (whether physical or mental), some good news stories and topics can divide opinions, a lot more than some may expect. And it is no different (or especially so) for cancer “good news” stories. I was reminded of that when reading some responses to the news that Sarah Thomas, who had previously been treated for breast cancer, swam the English Channel – four times. Whether you have cancer or not; whether you have another life-changing illness, or not, chances are, you too want good news stories. And not just about our illnesses, but about our world, society or neighborhood. We all crave for something that helps make everything else worthwhile or more bearable or that which gives us hope. Let me say in no uncertain terms: I applaud Sarah and respect her achievement. I could not do it, not a fraction of it, before my cancer diagnosis, after, or now with the illness. And I would not want to do it either, then or now. And let me say further in no uncertain terms: everyone affected by cancer may choose their own very personal way of finding meaning, carrying on and turning the experience into something (or not). What I do, may not be what you choose to do. And what you do, may not be what I can do. There is no competition. We all have equal worth. However, if you report or hear cancer “good news” stories please remember: 1. Cancer and cancer treatment experiences are complex, unpredictable and individual. If one person does “well,” it does not mean others can do so, too. Generalization can lead to unrealistic expectations and unintentional shaming. 2. Those who do not engage in sports, continue to have weight issues, do not write books or blogs, do not get involved in advocacy or anything else – none are necessarily less committed to their health, community, family or themselves. And even if they are, it is not for others to judge or make assumptions. 3. Treatment side effects and psychological difficulties can limit one’s abilities (e.g., long-lasting effects of cancer fatigue, chemo brain, weight gain and PTSD are some of the more common experiences). And let’s not forget, we all have choices. 4. Coping with cancer cannot be simplified to “where there is a will, there is a way.” 5. People affected by cancer will cope and manage in their own way, whether noticeable to others, or not. This is something we need to encourage. 6. The reporting of positive cancer stories can cause emotional pain, anger, fear and a sense of failure among those who have lost (or never had) the abilities others are celebrated for. This can lead to a greater sense of isolation and unrealistic expectations in society (and among people affected by cancer) about what is realistically possible, or not. 7. We all are in need of “good cancer stories” because accepting the reality of uncertainty and loss can be hard to bear. We all need hope, but realistic hope. Talking about how to learn to bear the unbearable must not be excluded from the discussion. Bottom line – being affected by cancer (incl relatives), whoever you are, whatever your cancer, wherever you are at with the illness, it is an endurance challenge! And I for one salute every single one of you, whatever you do or don’t do. And I wish you well with it all! Follow this journey at KarinSieger.com. You can also check out Karin’s podcast “Cancer and You.”

Karin Sieger

Cancer 'Good News' Stories Must Not Sugar-Coat the Reality

Cancer “good news” stories cannot take away from an important truth. Here are seven important points to remember. When it comes to health and illness (whether physical or mental), some good news stories and topics can divide opinions, a lot more than some may expect. And it is no different (or especially so) for cancer “good news” stories. I was reminded of that when reading some responses to the news that Sarah Thomas, who had previously been treated for breast cancer, swam the English Channel – four times. Whether you have cancer or not; whether you have another life-changing illness, or not, chances are, you too want good news stories. And not just about our illnesses, but about our world, society or neighborhood. We all crave for something that helps make everything else worthwhile or more bearable or that which gives us hope. Let me say in no uncertain terms: I applaud Sarah and respect her achievement. I could not do it, not a fraction of it, before my cancer diagnosis, after, or now with the illness. And I would not want to do it either, then or now. And let me say further in no uncertain terms: everyone affected by cancer may choose their own very personal way of finding meaning, carrying on and turning the experience into something (or not). What I do, may not be what you choose to do. And what you do, may not be what I can do. There is no competition. We all have equal worth. However, if you report or hear cancer “good news” stories please remember: 1. Cancer and cancer treatment experiences are complex, unpredictable and individual. If one person does “well,” it does not mean others can do so, too. Generalization can lead to unrealistic expectations and unintentional shaming. 2. Those who do not engage in sports, continue to have weight issues, do not write books or blogs, do not get involved in advocacy or anything else – none are necessarily less committed to their health, community, family or themselves. And even if they are, it is not for others to judge or make assumptions. 3. Treatment side effects and psychological difficulties can limit one’s abilities (e.g., long-lasting effects of cancer fatigue, chemo brain, weight gain and PTSD are some of the more common experiences). And let’s not forget, we all have choices. 4. Coping with cancer cannot be simplified to “where there is a will, there is a way.” 5. People affected by cancer will cope and manage in their own way, whether noticeable to others, or not. This is something we need to encourage. 6. The reporting of positive cancer stories can cause emotional pain, anger, fear and a sense of failure among those who have lost (or never had) the abilities others are celebrated for. This can lead to a greater sense of isolation and unrealistic expectations in society (and among people affected by cancer) about what is realistically possible, or not. 7. We all are in need of “good cancer stories” because accepting the reality of uncertainty and loss can be hard to bear. We all need hope, but realistic hope. Talking about how to learn to bear the unbearable must not be excluded from the discussion. Bottom line – being affected by cancer (incl relatives), whoever you are, whatever your cancer, wherever you are at with the illness, it is an endurance challenge! And I for one salute every single one of you, whatever you do or don’t do. And I wish you well with it all! Follow this journey at KarinSieger.com. You can also check out Karin’s podcast “Cancer and You.”

Karin Sieger

Chemo Brain Explained in Simple Terms

Chemo brain is one of many possible side effects of cancer treatment. Not everyone will get it, but I did, and I did not really understand what to expect and how to cope. Why Chemo Brain? During cancer treatment and often afterwards we cannot function the way we used to — often on all levels: physical, mental and emotional. Why is that? Because we are affected by the cancer itself, the cancer treatments and other medication we may require, overall changes in our wellbeing and the tremendous stress, anxiety and emotional trauma of the situation. Chemo brain is one of those consequences and side effects. And it is not necessarily only related to chemotherapy but to a combination of all of the above. The degree to which chemo brain can impact us varies from person to person. Indeed, it can outlast cancer treatment. Chemo Brain Symptoms With chemo brain we may experience a number of symptoms that reflect a reduced mental ability: loss of concentration, fatigue, confusion, not being able to multi-task, not being able to cope with noise or conversations or media, sleep disruption, finding it difficult to go out and more. If your brain, head or mind, whatever you want to call it, was a processor, then during chemo brain it cannot process as much or at the same speed as before. We may be left feeling frightened and isolated. It is another loss of normality, predictability and our identity. More uncertainty and new circumstances to deal with. Explaining Chemo Brain to Others It can be difficult to explain to others what we are going through. I like to use the example of a computer. If our brain was a computer used to  running six apps and multi-tasking for example on Facebook, Twitter, watching TV and doing WhatsApp at any given time, with chemo brain our brain may be able to use one app only and even then only for a short period of time. It will also take a lot longer to re-charge. Coping with Chemo Brain To cope and look after ourselves, we may need to scale down our activities, commitments and responsibilities, including the small things, which we like and will miss. We may need to reach out for help and delegate. All things, which may be hard and not straightforward. I have recorded a video about it, where I share some of my own experiences with chemo brain and coping strategies. I hope you might like it and find it of use. To receive Karin’s newsletter please sign up here.

Karin Sieger

Why Cancer Survivor Guilt Is Understandable but Not Justified

Cancer survivor guilt exists. It is real; I had it, too. But it is a feeling and attitude that is conditioned and not justified. Cancer survivor guilt is someone else’s anger and despair. It is not ours to take on. Once I attended a training course on “guilt.” One of the trainers said boldly, “I don’t do guilt.” I was impressed. I did guilt – a lot! Today, many years later, I go one big step further: Guilt does not exist. Clearly I don’t mean the legal definition of guilt. I am talking about feeling guilty. What is the guilty feeling? Guilt is what I call a “masking feeling.” It is more acceptable and covers up feelings that are less acceptable or more difficult, like anger, frustration, fear and hopelessness. We might feel a sense of guilt for a wrong we have done (intentionally or not, or a regret we feel). But we cannot leave it at that. We have to take responsibility. Mostly, feeling guilty is an automatic response. We often “do guilt” to avoid conflict. “Ok, it’s my fault … let’s not go there…” We bow in the face of someone else’s view on things, their reality and their feelings. Having a social, cultural and religious heritage that is well-saturated with guilt (at least when I grew up), shame and guilt could be constant companion and shadow that  weighs heavily on me. The essence of the intuitive and conscious belief was that “I am bad.” Over the years and with a lot of hard work, I have eroded my guilt mechanism. Or so I thought. Cancer Survivor Guilt: My experience A few years after my first cancer treatment, the terminal cancer diagnosis of a relative of mine, her gradual and then very quick deterioration and death filled me with the old feeling of guilt. Guilty for … being alive after my own cancer diagnosis and treatment having had my annual check up come back as clear, when the metastases in her liver were growing rapidly struggling with my ongoing sense of uncertainty about life and death sitting next to her mother, who asked me whether I have the faith she has lost In the presence of the bereaved mother, my own mother felt guilty that her child is still alive. Cancer guilt can happen to anyone affected by cancer, including relatives and friends. How to banish the cancer survivor guilt The survivor guilt I felt was a sense of discomfort. I was quite possibly picking up someone else’s anger, frustration and despair at their own situation. But it is their situation, not mine. I feel compassion for them and I know I cannot offer a solution. There is no shame in that whatsoever. We all have our own struggles and our own journey. In the light of their situation I have done the best I can, and acted responsibly and honestly. We have a choice not do guilt, and also do not need anyone else to do guilt for us. I stopped feeling cancer survivor guilt a long time ago, because living in remission is not easy either. And since my second diagnosis I certainly have nothing to feel guilty about or apologize for. Neither do I want anyone else to feel guilty, because they are in remission, alive, have private insurance, are financially stable, have no side effects, have no cancer – whatever the case may be. We all have the one life. Guilt and survivor guilt get in the way of being together, supporting each other and living our life to the best of our abilities.

Karin Sieger

Why Cancer Survivor Guilt Is Understandable but Not Justified

Cancer survivor guilt exists. It is real; I had it, too. But it is a feeling and attitude that is conditioned and not justified. Cancer survivor guilt is someone else’s anger and despair. It is not ours to take on. Once I attended a training course on “guilt.” One of the trainers said boldly, “I don’t do guilt.” I was impressed. I did guilt – a lot! Today, many years later, I go one big step further: Guilt does not exist. Clearly I don’t mean the legal definition of guilt. I am talking about feeling guilty. What is the guilty feeling? Guilt is what I call a “masking feeling.” It is more acceptable and covers up feelings that are less acceptable or more difficult, like anger, frustration, fear and hopelessness. We might feel a sense of guilt for a wrong we have done (intentionally or not, or a regret we feel). But we cannot leave it at that. We have to take responsibility. Mostly, feeling guilty is an automatic response. We often “do guilt” to avoid conflict. “Ok, it’s my fault … let’s not go there…” We bow in the face of someone else’s view on things, their reality and their feelings. Having a social, cultural and religious heritage that is well-saturated with guilt (at least when I grew up), shame and guilt could be constant companion and shadow that  weighs heavily on me. The essence of the intuitive and conscious belief was that “I am bad.” Over the years and with a lot of hard work, I have eroded my guilt mechanism. Or so I thought. Cancer Survivor Guilt: My experience A few years after my first cancer treatment, the terminal cancer diagnosis of a relative of mine, her gradual and then very quick deterioration and death filled me with the old feeling of guilt. Guilty for … being alive after my own cancer diagnosis and treatment having had my annual check up come back as clear, when the metastases in her liver were growing rapidly struggling with my ongoing sense of uncertainty about life and death sitting next to her mother, who asked me whether I have the faith she has lost In the presence of the bereaved mother, my own mother felt guilty that her child is still alive. Cancer guilt can happen to anyone affected by cancer, including relatives and friends. How to banish the cancer survivor guilt The survivor guilt I felt was a sense of discomfort. I was quite possibly picking up someone else’s anger, frustration and despair at their own situation. But it is their situation, not mine. I feel compassion for them and I know I cannot offer a solution. There is no shame in that whatsoever. We all have our own struggles and our own journey. In the light of their situation I have done the best I can, and acted responsibly and honestly. We have a choice not do guilt, and also do not need anyone else to do guilt for us. I stopped feeling cancer survivor guilt a long time ago, because living in remission is not easy either. And since my second diagnosis I certainly have nothing to feel guilty about or apologize for. Neither do I want anyone else to feel guilty, because they are in remission, alive, have private insurance, are financially stable, have no side effects, have no cancer – whatever the case may be. We all have the one life. Guilt and survivor guilt get in the way of being together, supporting each other and living our life to the best of our abilities.

Karin Sieger

Why Giving False Hope About Cancer Is Worse Than No Hope

Health anxiety is normal and often part and parcel of serious health issues. Being able to separate the real from the unreal – that’s what matters. Often people give us false hope, because they think it can help with health anxiety. But I believe false hope is worse than no hope. Why? Because it does not help us learn to live with difficult truths. Yet some people think giving or receiving false hope is better than no hope. I disagree. Let’s look at hope and health. 1. False Hope vs. Reassurance Once my medical practitioner told me that “things will get easier.” It had been six years since my diagnosis and treatment for breast cancer. For many, this means things will get easier: fewer worries about the cancer coming back and less chances of the cancer coming back. One of the oncologists even said I had been “cured,” while another said all that can be done had been done. I know comments like my doctor’s are meant to reassure, made with the best of intentions. But I also know they are often meant to pacify what is interpreted as health anxiety, hopelessness, pessimism and cynicisms. What I feel is all of the above and yet none of it. 2. Health Alertness vs. Health Anxiety If you have been diagnosed with cancer or another life-changing or life-shortening illness, you too, may know the feeling of living with what I call constant “subtitles:” Nothing is what it is. Nothing is like it used to be. Nothing is like we thought it would be. And we call much into question. Comments like “But you look so well … you must not worry so much” can be unhelpful and dangerous. They can lure us into a false sense of reassurance, when we need to remain alert to changes in our bodies. There is a very fine line between health awareness, watching out for red flag signs and irrational health anxiety. And there is nothing right or wrong about it. There is no blueprint or manual that can tell us how to do it “right.” You, too, probably have had moments of health concerns and feeling unwell. Since my initial cancer treatment I have had many. Thankfully, the symptoms turned out to be related to other things. Yet these are intensely frightening and dare I say traumatic moments in our lives. Each time (and increasingly so) I have to check in with myself, whether I am over-reacting and whether I will be thought of as a time waster, as someone overcome by health anxiety. 3. Coping With Health Anxiety: Professionally and Personally And what do I do for a living? I am a psychotherapist and I specialize in supporting people affected by cancer and loss. And people ask me, how do I square that? Is it healthy for me “to work with cancer,” when I have been affected by cancer? Is that not too close to home? Does that not make things worse for me? My truthful answer? No. Like any other therapist or counselor, cancer or no cancer, I too, have to monitor myself constantly, to see whether I am emotionally and physically fit to do the work. But how can I help others deal with their health anxiety when I, too, experience it? There would be a problem if we were to assume (wrongly in my view), that there needs to be a way of having health or cancer anxiety “sorted… done and dusted … ticked off the list.” No. Health anxiety is normal and human. What matters is knowing how to face up to it and being able to live with it, without it standing in our way and becoming disproportionately irrational. 4. If You Are Tempted to Give Someone Hope That You Don’t Believe In It is understandable that we may want to reassure others – for so many reasons. Depending on how close we are, others’ despair can be hard for us to cope with. It is upsetting, especially when we don’t know what to say. We may be tempted to give false hope, anything, to reassure them and us. As I said, it is understandable. But does it really work and help you and the other person? 5. False Hope vs. Meaningful Hope Coping with health anxiety is about accepting our anxiety and learning to regulate it, so it does not work against our well-being. False hope gets in the way of that process. Instead we need to learn to find meaningful hope in ourselves and in our ability to be able to do the best we can, whatever may happen – illness or no illness. It’s about hope that somehow, somewhere we will find a way out of the dark moments and places. We must not sugar-coat the truth, which is that we cannot know what is around the corner. There is no point in giving false hope, like it will get easier, because it happens to have been x number of years. Meaningful hope and reassurance can be hard to give and hard to receive. Meaningful hope is: The belief that despite what has happened, we can cope and live well with the here and now and with whatever may come, or not. The fearlessness of facing up to difficult possibilities in our lives and not shying away from naming them. The supportive silence and acknowledgement that living with subtitles of fear and mortality is not easy and requires constant focus and honest acceptance. To be able to acknowledge that hope is hard to come by, and to keep meaningful hope is more helpful than any false hope can ever be. My cancer did return. A local recurrence was eventually identified, after I continued to insist on further investigations. I just had not felt “right.” At the moment I feel OK. I consider myself as living with cancer, whether there is detectable evidence or not. And I don’t consider that giving in to health anxiety.

Doug Sparling

Stage 4 Prostate Cancer: When Hope Is All You Have

I have incurable cancer. However, I prefer to think of it as a chronic illness, as does my oncologist. I can’t thank her enough for setting my head straight on this right out of the gate. A cancer diagnosis is never pretty, regardless of the stage or type. It’s still cancer, and it’s scary as hell. My initial diagnosis was stage 4 metastatic prostate cancer. That meant treatment would be systemic, so I wouldn’t have to go through prostate surgery. If there was any good news, that was it. Yeah, chemo was the good news. I can find a silver lining in anything. Unlike most cancer patients, I never had the “you have cancer” moment. I simply wasn’t feeling well, had some lab work done, and a few days later learned my PSA was incredibly elevated (5,306). At that point, advanced prostate cancer was more or less a given, and a prostate biopsy would soon confirm it. Fourteen out of 14 cores were a Gleason 9 or 10, giving me an overall Gleason score of 9 (5+4). Having an advanced prostate cancer diagnosis meant we’d have to go straight into treatment before I really had a chance to absorb the diagnosis. My oncologist and I mutually agreed not to talk prognosis. My case was not terminal (as in “you’ve got three months to live”), so we wanted to focus solely on treatment from day one. As I would soon discover, it’s imperative to save all your energy — physical and mental — for the treatment to come. The toxicity of chemotherapy can vary, but experiencing some side effects is pretty much guaranteed. My cancer was advanced and aggressive, so chemo was the best shot at getting it under control. A driving force behind prognosis is statistics. Survival statistics deal with aggregate numbers and group trends, not individuals. Every person and every cancer is different. I was a living, breathing human being, not a point on a trendline, and I wanted to keep it that way. Nor did I want to go down the path to self-fulfilling prophecy. All I needed to know about five-year survival rates was that there was a curve and then a really long tail. Call me an optimist, but an outlier on the end of that tail was the only place I wanted to be. A quick warning, because I learned this the hard way: If you ever decide to search the internet for your type and stage of cancer, you will invariably get the spoiler of all spoilers whether you want it or not. It’s out there and almost impossible not to see, so consider yourself warned. However, I found gaining knowledge of my disease very empowering, as it gave me the ability to ask my doctors questions, which in turn gave me some sense of control over my treatment. Another important thing I learned, and trust me on this: your oncologist will become the single most important person in your life. If your oncologist is not, then you’ve got the wrong oncologist. I can’t stress this enough. Same goes for your entire medical team, and I do hope you’re lucky enough to have one. From the very start, it’s been a group effort involving me, my GP and his nurse, my urologist, my oncologist and her nurse, and an onco-psychologist. You may see these people more than you see your family, but unlike your family, you do have some say in choosing your medical team. Choose wisely, you won’t regret it. One thing I won’t do is use words like fighter, or warrior, or survivor. It’s perfectly fine if it helps you by identifying with any of those terms. If that’s the case, then I absolutely encourage you to do so. But for me, I prefer simply to say that I’m “living with cancer,” because that’s exactly what I’m doing. I’ll be living with cancer for the rest of my life, and that’s just the reality of the matter. The inescapable fact is that one day, I will die with cancer, or die from it. One word I won’t hesitate using is “hope.” To quote New York Times bestselling author Karen White from her novel “The Time Between:” Sometimes hope is all we have, and to lose that is to lose all.

Karin Sieger

What My Online Profile Says About Cancer and Who I Am

Whether you have online profiles or not, you and I have something in common. We are statistics and we experience crises in our lives. What I did with my LinkedIn profile tells how I dealt with cancer and my identity — then and now. Here is how. There was a time when I was OK with being a statistic. Because overall, I was doing well. Most statistics I identified with, no problem. Others I could shrug off easily, no problem. That all changed when life presented me with one particularly big challenge. If you think about it, how many of the statistics you belong to are you comfortable with? How many are loaded with ignorance and prejudice? There are times in our lives when things change, suddenly or slowly — unemployment, illness, relationship breakdowns, burnout, midlife crisis, etc. A crisis affects how we feel about ourselves, the person we think we are and what others make of us. Recently I rejoined LinkedIn after a pause of several years. With ‘0′ connections I am building up a new network, and a new “experience” that made me leave LinkedIn in the first place. The day I found a lump in my right breast life started to change very quickly. I became another statistic: A woman with cancer, a patient, unemployed and according to my local authority, disabled. These were statistics I was not prepared for and did not want to belong to. I was very rapidly losing layers of my identity and started to become financially and physically dependent on others. I felt I was losing my independence and with that, my value. Nothing of what I had achieved or knew mattered. The perception of others towards me changed. I was left with a gaping hole of meaning. Who am I? Sudden life-changing moments can throw us in at the deep end, with no-one to catch us or to teach us. You will have your own experience with difficult change, the sense of isolation and loss of voice. Many people don’t want to hear us, don’t want to or can’t understand us. At some point I turned to my LinkedIn profile. I added a new “Experience:” Sabbatical, cancer treatment. It was an immensely meaningful step. While I became frailer and frailer — financially, socially, relationally, physically and mentally — I needed to claim my position and my status, personally, professionally and openly, without shame. Yes, cancer was a new experience that would test me, teach me, shape me, make me feel weak and make me feel strong. Yes, and it may kill me. Did any of my LinkedIn connections notice the change? I don’t know. I did not hear anything. A year later I started to be well enough and financially weak enough to start thinking seriously about how to earn a living. I decided in favor of setting up a private practice. I need to be self-employed, with all the financial risks that entails. Because I need to be in charge of my own schedule and life. I decided to close down my LinkedIn account. I was not interested in LinkedIn or any other professional networking. I did not see the benefit and my energy was still limited. My world needed to remain small. As I grew in new confidence, self worth and energy I started to find my old voice and a new voice, too. I started writing — about a lot of things, but especially about making peace. But I also need an audience, and so I needed to start networking again, first via Twitter, then eventually via Facebook and now again via LinkedIn — all from scratch, slowly, step by step, minding my identity and integrity. Who am I? I asked that question again, when completing the “Experience” section on LinkedIn last week. Who am I — professionally and personally? For me there is little difference, they are inseparable. I decided to go back to the beginning, back to 1989 when I finished my first degree. I felt like claiming my history and closing a circle. When it came to 2012 I decided to enter under “Experience:” Breast Cancer treatment: Patient and first-hand experience of the emotional impact of cancer. This experience, like anyone affected by a life-changing illness knows, is ongoing. I no longer need the word “sabbatical.” Then it was an attempt to still fit into the “acceptable” language and career development path set up by others. I bought into it and I am glad I did. Because “sabbatical” gave me meaning and identity, when I was at my weakest — a bit like a cancer journey, which is another metaphor I have outgrown, for now. Sabbatical was an important placeholder, without which I would have felt like I had disappeared. Now, I am in a different place, thankfully. For how long? Who knows. And there might come a time, sooner or later, when the term sabbatical feels more appropriate and necessary than it feels now. Now I call the “Experience” exactly what it was — nothing more and nothing less — and with unapologetic and proud ownership. I wonder what would happen… What if we all included periods of illness or other crises in our LinkedIn or other professional profiles, CVs, etc? “Probably a lot of discrimination,” I hear you say. Not everyone wants to or needs to do what I did. We all have choices, whatever happens, whether you are in employment or not. We might not have all the choices we would like to have. But exercising our choices is important when our world gets turned upside down. We need to try and keep playing an active part, and even if this means we choose silence and privacy. As long as our choice is not fueled by fear, then our sense of identity and self worth stands a better chance of seeing us through, whatever life may throw at us. Karin Sieger is a therapist and writer. She lives on an orange houseboat in London, UK, where she started writing during her treatment for breast cancer. She specializes in transitions, endings, making peace, the emotional impact of cancer and offers cancer counseling training for counsellors/therapists. To find out more visit karinsieger.com . To subscribe to Karin’s newsletter sign up here . This post was originally published on KarinSieger.com. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Alex Bors

Karin Sieger

How David Bowie Showed Us We Have Meaning, Despite Having Cancer

Holding on to our identity, a sense of who we are and what we stand for is not always easy. Especially not during a health crisis, cancer or other chronic or terminal illnesses, which can drain use of meaning. David Bowie’s apparent consistency in living and dying strengthened and continues to inspire me. His productivity and creativity continued, even when he was dying. His music and art continue to be an expression of his life and identity, of which dying and death is an intrinsic part. This gives me hope, as I reflect on my own mortality, especially (but not exclusively) following my treatment for cancer. People often reflect on the life-shattering power of a cancer diagnosis. Nothing is what it was up to that point. Everything is called into question including our very identity. We may struggle with meaning, identity and purpose because very little is left predictable and certain — apart from death. It is difficult to stay motivated when undergoing tough treatments, dealing with a range of side effects, or even in remission, which can turn into a relentless waiting game. I don’t know any details of David Bowie’s cancer and treatment. Working in the field and having undergone cancer treatment myself, I have some idea. How much I or we know or don’t know, that is not really the point. His last artistic and life effort, his last album “Black Star,” the lyrics and related video (released on his birthday — Friday, January 28, 2016 — two days before his death) —  all this carries a deep meaning and powerful message about determination, energy and identity. For me, the personal meaning is so strong, that I cannot yet listen to “Black Star” — I am not yet ready to be moved, that deeply. Having cancer or other life changing illnesses can cut short our life, but not our identity, unless we let it. In dying as in living we do not have to compromise on who we are. Being treated for cancer and even dying of it does not make us a lesser person. Illness can make us invisible, if we let it. We can find ways to continue to leave a mark, continue to have meaning and purpose and to be relevant to others, ourselves and the world; we keep our identity. We may feel terribly vulnerable, frightened, angry and hopeless. But if we get stuck in any of those soul destroying dimensions, then we will get drained of positive inspiration, creativity and a chance to remain an active participant in the life that is ours. I known it’s hard, and there have been moments when anyone telling me exactly that would have got a tongue lashing from me, or I would have turned the page, or switched the channel: What do you know Mr/s expert? Nothing! We have to do it our own way. David Bowie made a choice, and he did it his way. He will have filled the rest of his life in a way that gave him meaning and (hopefully) authenticity and peace. If we can stay focused on our identity, who we are, even in the face of a life-shortening or terminal illness, than the narrative will change. It will be less defeatist, humiliating, dehumanising and soul-less. We have meaning and deserve well — always, in life as in death. Thank you, David Bowie, for giving me hope and determination to hold on to my identity. To receive Karin’s newsletter please sign up here. We want to hear your story. Become a Mighty contributor here . Pixabay image courtesy of Cristian Ferronato

Karin Sieger

10 of My Cancer Lessons to Help You Cope

Having been treated for breast cancer in 2012/13 and working in the field as a therapist, here are 10 of my cancer lessons (in no particular order) that may help you cope with the emotional impact of cancer. But before that, let me say loud and clear: There is not a single person, story, book, lecture or talk which will teach us all we need to know to understand the impact of cancer on our lives. That’s what we have to figure out for ourselves when we go through our own cancer lessons. 1. Cancer and treatment affects us not only physically, but also emotionally, mentally, socially, spiritually, financially, relationally. Be prepared. 2. Struggling with cancer  is not a sign of weakness. Cancer like other life-changing illnesses and their treatment is traumatic. It stands to reason. There is no shame. There should be no blame. Self-care and making changes in your private and working life may be the responsible thing to do. 3. You don’t need to have cancer to be affected by cancer. It affects you even if you do not have the disease. Family and friends are impacted, too, and have support needs. 4. The impact of cancer does not end with treatment. Even if in remission, life will never continue the way it was before. Often we are left with treatment side effects, no more regular medical support and with fear of the future. I can be exhausting and cause depression and anxiety. 5. Your cancer experience can lead to unexpected emotions like mood swings, heightened anxiety and anger. Often others and we ourselves may no longer recognize who we are. It can be upsetting. Work it through. Talk it through. You are not alone. 6. Be prepared to be disappointed. Employers, peers, friends and even family may not necessarily be able or willing to give you the support you need. 7. Living with cancer can be lonely. But we remain who we are, cancer or no cancer. Illness can make us invisible if we let it. Hold on to that! 8. Cancer is unpredictable. Cancer does not necessarily kill because cancer is complex. There are grades and stages, remission, primary, secondary, advanced, terminal. Different cancers have different survival rates. If your cancer returns, it does not necessarily come back in the same area of your body. It all depends. Educate yourself. 9. Try not to pretend nothing has happened. Denial has a limited shelf life. Facing up to your very individual cancer reality is harsh, but in the long-run and if done constructively, can be empowering and enables you to make informed choices. 10. Be an active participant in your own cancer experience and cancer lessons. You have the right to choices. Reach out for help and find out your rights. Do not expect others (including GPs and employers) to have all the answers and know it all. Engage with cancer support services, to ensure you get what you are entitled to. This can save you money, precious time and energy. Every person and every cancer story is different. If my cancer was to return and/or if it was to be terminal, then I may write this piece slightly differently. It stands to reason and that’s OK, too. Then there will be more cancer lessons. To receive Karin’s newsletter please sign up here. We want to hear your story. Become a Mighty contributor here . Image courtesy of Daniel Reche