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To Tell or Not To Tell…?

Do I Tell Anyone I Have Cancer…?

Whether to share the news you have cancer with others can be a very personal decision. You’re probably not sure what to do or how much to reveal.

Some people with cancer choose to tell their loved ones only; others find that it helps to let people they come in regular contact with, know about their diagnosis. When people decide to tell others, they may do so for these reasons:

  • It’s too big and scary to deal with alone.
  • It lets other people give support.
  • It gives family and good friends a chance to say how they feel.

People who decide NOT TO SHARE their diagnosis have given these reasons for not doing so:

  • They’re not ready to talk about it.
  • They’re afraid that other people will be scared.
  • They think other people may not want to be around them.
  • Saying the words out loud makes the cancer more “real.”
  • They don’t want others to feel sorry for them or change how they treat them.
  • They don’t want to feel responsible for the financial stress that might result from the required treatments and might feel guilty to bring this to their families.
  • Main reason was to protect them worrying or disrupting their everyday life.
  • Others said they didn’t want sympathy or ‘special’ treatment due to illness.
  • Women were more likely to be secretive, with 25% considering not telling and 18% of men said they would do the same, in a recent study.

Sometimes, people do not talk about their cancer because they have not made sense of it themselves. Maybe they caught it at an early stage that it would be easy to take care of and want to avoid the attention. Doctors, nurses, and other healthcare professionals in the cancer space, have a responsibility to be deliberate in asking patients how they will explain their cancer to others, to make sure they understand. Keeping such a diagnosis hushed, a secret from those who love and care for us, is an unfair burden on ourselves that we shouldn’t allow cancer to dictate, too. However, there are some cultural stigmas, personal pride or other fears that foster the secret, similar to the list above. Some do not want to be defined by the diagnosis and have a horror of pity. They do not lie to anyone but rely on being pretty vague about some things in order to maintain their privacy. If everything is being taken care of, and positive progress continues to come out of the situation, it might be okay.

However, what happens when there is a turn of events and the prognosis becomes more uncertain? When do you tell others that you have been keeping this private situation, well… private? Patients might not want friends and family to be hurt or upset when they find out that they were not aware of the situation. But, at the same time, it might never be necessary to tell them at all. Some undue stress might surface as one might feel really torn and feel like they have backed themselves into a corner, although they cannot imagine having done it any differently. Most of the time, while the people who do know respect the wishes of privacy and are very protective, they mostly do not all agree with the decision to keep the information to yourself in the first place.

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So, what is the best way to proceed? Continue as you are for a bit until you see what happens, or should you start to clue more people in? You might be rightfully afraid of being cornered with personal conversations while at work and other social circles, or afraid that if you tell anyone it will be common knowledge in no time and that can freak you out. Your instinct might be to just keep on as you are, but if you are not totally clear mentally on the subject and really do not want anyone to be upset, you might be in a challenging dilemma, on top of dealing with your cancer diagnosis.

Here is one take: This is your illness and I can understand why you don’t want it to become community property, something that makes you “That Poor Guy or Lady with Cancer”. You’re absolutely right that some people are going to see you differently if they know you have cancer and get self-consciously pitying or solicitous around you. These people — and I’m one of them, so I should say “us people” — mean well. But cancer freaks us out. It’s this Sword of Damocles that hangs over all of us and when we find out someone has it our own fears and guilt go into overdrive. And thus we tend to direct various histrionic forms of sympathy toward “That Poor Guy or Lady with Cancer”. This only amplifies the sense that they are living outside the smug circle of the healthy. Thus the illness, which is already attacking your body, becomes a source of stigma as well. It sucks, and you are trying to avoid it. I get it.

So the short answer is: you should only tell the people YOU want to tell. You are the one with cancer. It is your business and the business of those YOU entrust to support you at this time. Period. You don’t owe anyone a medical status report, especially if you sense that providing one is going to sap your energy, or try your patience. I have spent enough time around people with cancer to know that their energies are better spent on matters more pressing than social niceties.

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All that being said, when the situation take a turn for the worse or complication surface with the unwelcome possibility that the effects of your disease may soon become more apparent to the world at large, one will then be left having to explain to certain people why we did not tell them sooner. They will be upset, or feel betrayed. And here is what I have to say about that: I am very sorry, but tough luck for them. To reiterate: you are the one with the life-threatening disease. This doesn’t mean you get to treat people like garbage. But it does mean that you can let yourself off the hook for misdemeanors, particularly ones committed on behalf of your own wellness. If it comes down to it, you can simply explain to people the truth behind your decision to keep this private: that you didn’t want to be defined by your condition, or pitied, or stigmatized. I am sure that, once they get past the shock of finding out about your situation, most would understand and respect your decision.

Part of our reluctance to tell folks is about protecting ourselves. Protecting both our peace of mind and our own identity. If you are a known figure in your community, interacting with people who do not know you are sick must provide a great deal of comfort. It is a way of keeping the secret from yourself, if you know what I mean. Or maybe it would be more accurate to say that by keeping news of the disease under wraps you are both limiting its “spread” and preserving the psychic possibility that it will simply go away. Some talk about having a “horror of pity” which I completely get. Powerful, independent people tend to abhor pity because it is condescending; it represents a posture of assumed vulnerability. And none of us like feeling vulnerable, especially when our bodies are under siege.

In the end, we are all vulnerable. The saddest part of the human arrangement is that disease and decay, and finally death, comes for all of us. And when it does, the biggest loss of all is that we do not get to love anymore. So by all means avoid the leering pity of the masses. But please (please, please) don’t shut out those who have genuine sympathy and love to bestow onto you. Don’t deprive yourself of the support you need in these coming months and years. About the only good that can come out of a diagnosis like yours — aside from a full recovery — is the chance to see anew the splendor of your life, the many people who love and admire you and wish to be able to express those emotions as you face this challenge. Letting them love you is a huge act of vulnerability. But it’s also the whole point of being alive.

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One time, a few years ago, someone I love had cancer. And it has forever changed me, too.

Why I Feel Guilty After My Husband Survived Cancer

By Lesley Miller as it appeared in “The Mighty”  

http://themighty.com/2015/12/why-i-feel-guilty-after-my-husband-survived-cancer/?utm_campaign=site_twit&utm_source=twitter&utm_medium=social

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One time, a few years ago, someone I loved had cancer.

He caught it the way most people do, unexpectedly and without warning. Just months before his diagnosis, I’d been the one in a hospital gown. He faithfully attended my prenatal appointments and then held my hand while I pushed a seven-pound baby into the world, changing our lives forever. Little did we know it would be one of two life-changing moments over the course of three months, because suddenly the roles reversed. Now cancer was growing in our house instead of my growing belly. He’d officially become a cancer patient, and I’d officially become the person at his side. The person they call wife but also caregiver; the person who could become a widow if everyone isn’t careful.

It’s hard these days to talk about his cancer. With time, you’d think it would become easier, but I’m finding the opposite to be true.

There’s this thing called survivor’s guilt — maybe you’ve heard of it? Survivor’s guilt is a mental condition where someone feels bad because they’ve survived a traumatic event when others did not. Survivor’s guilt can take on a lot of different forms, and people can feel it after walking away from a deadly car crash, making it home after war or even in something as simple as keeping your job during company wide layoffs.

My husband, Jonathan, had stage IV cancer, but even he experiences survivor’s guilt. I remember leaving chemotherapy with him one Friday, and he commented that he shouldn’t complain because his cancer was so treatable, and he was young.

A few months later I bought him a bold yellow shirt that said “survivor” across the front. He wore it once to please me and never put it on again. “Survivor,” in his mind, is nothing to tell the world about. He didn’t do anything to claim survivor status; his body just had a treatable cancer that happened to respond to drugs. He’d rather wear his Seattle Seahawks shirt than call any more attention to himself. His bald head and missing eyebrows had been enough of a conversation starter.

I feel guilty a lot these days, too. When I talk or write about cancer, I tell myself I have no place to do so. He is the one who had chest pain, not me. He is the one who saw the doctor’s concerned face, not me. He is the one with scars on his chest, not me. He is the one who actually, literally, survived, not me. I am, I was, simply the caregiver.

I showed up to chemotherapy with him, I made him mild dinners, I helped give him shots when he needed them and I accompanied him to the emergency room a few times. At the end of it all, he became a survivor, and I went back to being simply, wonderfully, his wife. He dodged death, and I dodged becoming a widow. I didn’t earn an official title, but I took back the one I’d been given on our wedding day. There’s no T-shirt to wear, not that I’d want one if there was.

istock_photo_of_two_people_talking1But although my role as caregiver was supposed to be a temporary identity changer, I am forever marked by the dreaded, whispered six-letter word we fought together.

I may not have a shirt, but I wear “survivor” on my mind and heart. I survived in a different way. I survived the awkward “’What’s new with you?’ ‘Oh, my husband has cancer’” conversations. I survived being our family’s PR agent, managing communication with our friends and families and the pitied looks from strangers. I survived the what-ifs and the won’t-go-theres. I survived that terrible flight when he was throwing up in the security line while I juggled our luggage, baby, stroller and Christmas presents. I survived pumping breast milk in a tiny sterile doctor’s office while he received chemo outside the door. I survived the greatest scare of my life — that I might lose him.

I can’t describe to you exactly how it made his chest hurt, but I can tell you about that night we pulled off a freeway at 11 p.m. because he was in too much pain to drive. I couldn’t tell you what it’s like to think you might be dying, but I can tell you what it’s like to think about becoming a widow. I can’t explain the pain of a bone marrow biopsy, but I can tell you how white his knuckles got as the doctor screwed a huge needle into his back. Cancer never lived in my body, but pain sure did. My pain came from the watching and the waiting.

See original post at http://themighty.com/2015/12/why-i-feel-guilty-after-my-husband-survived-cancer/?utm_campaign=site_twit&utm_source=twitter&utm_medium=social

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It is REAL – Cancer Patients and Caregivers Can Suffer from PTSD

This is a repost from IHadCancer.com by this awesome warrior, Kym Keyes. PTSD and cancer survivorship should be much a part of the discussion of post treatment as the medications that are given.

cancer-and-ptsdAs many as 1 in 3 cancer survivors experience post-traumatic stress disorder, but many of these cases go undiagnosed. Read more to find out how Kym realized she was experiencing PTSD.

Before cancer, I had not been without a paying job since I was 16. After being diagnosed, due to a medical port being placed in my chest, I became a liability at work and the job was unwilling to accommodate. I had two options: medically retire so that I would have insurance to cover myself and live on a salary that is $2.00 above the poverty line, or have the port removed and go back to work, foregoing all necessary treatment.

I chose to retire and treat, barely surviving and dependent on loved ones to help meet my financial obligations. It was a grueling 22 months of chemotherapy, blood clots, pneumonia episodes, radiation, 3rd degree mind scrambling burns from radiation, on an area of my body where burns should never be. Then, as I got the “all clear”, the testing started all over because some of my major organs may have suffered. I had to test every 6 months to see if my cancer was behaving itself in the remission arena. I took my daily dosages of all the post medication I now need to maintain, medicines which alter my weight, moods, joints and ability to think clearly.

When I was finally ready to go back to work, I started to look for jobs obsessively. In one week I literally filled out 25 applications, I was now a professional job seeker. I had to figure out how to explain my sabbatical of 2 years, why I left a job I had for over 25 years that had a decent pay. How do I approach this issue without sounding like I will be sick and out a lot for medical checkups if they hire me? How could I avoid this uncomfortable private issue without sounding like a liar? There was no way. So I carried on this wonderfully positive attitude because wallowing in self-pity would make everyone around me annoyed and uncomfortable.

0124-traffic-app-630x420When someone finally called me about a contract assignment, I became excited. I sang, I put on makeup, and dressed in my best professional outfit. Made coffee, made my lunch, and headed out to meet the Sunny California Traffic Jam…Ahhhhh I was back! This was only the beginning of my rebirth. But the fear, the loss, the mental isolation, tears and fears in the daily shower and the sore, raw swollen knees from the daily prayers and pleas to God for deliverance eventually took its toll…

I started driving and about 30 minutes in, I suffered a debilitating panic attack, I pulled over and tried breathing in an out, in and out. I couldn’t stop the tears and body trembles from coming on. I couldn’t breathe. I watched others in this parking lot, rushing by me, heading into work and I pulled myself together. I listened to my inner voice repeat over and over again, “Kym, Calm down or you’ll get cancer again”, “calm down, it’s just a job, don’t become a workaholic again or the Cancer will return”, “if you stress out, your cancer will return, calm down”. I made it into the office — the drive was 2.5 hrs long. I worked hard and performed well, the Attorneys were very impressed, I was able to show my skills off tremendously, and I felt accomplished. At 5pm I drove home and had another anxiety attack. I got in bed at 8 pm and got out of the bed 2 days later. I suffered 3 episodes of panic attacks and could not stop crying, had no appetite and had thoughts of death, not suicide but death — there’s a big difference.

I called my doctor to schedule an appointment for a referral to a counselor, I knew I needed help. I began the conversation with my doctor, “Hey I think I’m going through some sort of Post Stress”, very calmly he said, “Oh I’m sure you are Kym, you’ve been through a lot and a lot of cancer patients suffer PTSD (post traumatic stress disorder).” Good grief! Couldn’t I have been forewarned? How many more issues will present themselves from this nightmare? Why doesn’t anyone talk about these things in the 5 support groups I tried giving a chance?

Yes, it all sounds scary and depressing. Because it was! But take it from me, it gets better. You get stronger, you take your experiences and you make things better for others with similar experiences. For a time, things will suck. But eventually, they’ll stop. But you need to take control of your mental health and talk about these things. It will help, I promise.

Everything Will Be Okay

Everything Will Be Okay

If you think you are experiencing symptoms of post-traumatic stress disorder, do not ignore it. Please reach out for help or contact The APOS Toll-free Helpline.

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(Image courtesy of the DepositPhotos)
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Kym Keyes is a 48 year old HER2+ Breast Cancer survivor, diagnosed on her 45th birthday. After walking the treatment path with minimal support, she formed a non-profit organization by the name of KHEMO BUDDY’s. The organization assist other chemotherapy patients who may be alone with Buddy Bags while sitting in the treatment facilities.You can find her on IHC under the username Kimkeyes.

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How to Manage a Team Member With PTSD: Fostering High Performance Through Empathy

Soldier

Combat experience is a common cause of PTSD.

© iStockphoto/MivPiv

Think about the last time you had to cope with stress in the workplace. You probably felt anxious, and maybe even a little afraid. But, in all likelihood, you resolved the situation and moved on, and maybe even felt a little wiser for the experience.

Now imagine being burdened by stress and fear for weeks, months or perhaps even years. There are people who have seen or been involved in events that are so harrowing, they are seared into their minds for the rest of their lives. They could be suffering from post-traumatic stress disorder, or PTSD for short.

It is possible that, unknown to you, someone on your team could be fighting a private battle with this debilitating condition. For them, the workplace can seem to be a hostile, confusing environment, and your compassion and understanding is vital to helping them be a valuable member of your team.

PTSD is most commonly associated with military veterans who have witnessed the horrors of combat. But anyone who has been exposed to a traumatic event can suffer from it, because of an accident, injury, disaster, or physical or sexual abuse, for example.

In this article, you’ll learn how to identify the symptoms of PTSD, and discover strategies to support your team members and help them succeed in their role.

What is PTSD?

PTSD is a serious condition that can occur after a person experiences or witnesses an extremely traumatic event. According to the National Center for PTSD, seven to eight percent of the U.S. population will suffer from it during their lifetime, and it affects 5.2 million American adults a year.

It’s normal to be upset after any kind of trauma but people with PTSD may suffer from severe distress, depression or anxiety, which can last from several months to several years. These symptoms may appear immediately following the trauma, or many months or years afterwards.

Common Symptoms of PTSD

In general, the symptoms fall into three main categories: intrusive, arousal and avoidance. They generally follow the cycle shown in the diagram below.

Process

Reproduced from “PTSD Resources for Survivors and Caregivers” article, with permission from giftfromwithin.org, an international non-profit organization for survivors of trauma and victimization.

Note:

Not everyone will experience every type of symptom, and sometimes these symptoms do not appear in the order shown above.

Intrusive: people with PTSD often experience flashbacks and nightmares about their trauma. These intrusive thoughts can be triggered by situations or conversations that remind them of the event, and make them feel as if they are reliving it.

Arousal: people with PTSD may feel a heightened state of tension or alarm, called “hyperarousal.” This manifests itself in symptoms such as insomnia, an inability to concentrate, persistent fear, or being easily startled.

Avoidance: people with PTSD may try to shut out their feelings about their trauma. They shun the people, places or situations that remind them of their ordeal. They may lose interest in activities that they used to enjoy. They might also feel depressed, guilty or worried. It’s common for them to feel emotionally numb and cut off from their friends and family.

PTSD in the Workplace

People with this condition may show various symptoms at work. Here are some of the most common ones:

  • Memory problems, and difficulty retaining information.
  • Lack of concentration on tasks.
  • Fear and anxiety.
  • Physical difficulties.
  • Poor relationships with co-workers.
  • Unreasonable reactions to situations that trigger memories.
  • Trouble staying awake.
  • Panic attacks.

Strategies for Managing a Team Member With PTSD

There is no one-size-fits-all solution to managing someone with PTSD, so the key is to remain flexible. The more information you have, the more you can do to help, so the following approaches may be useful.

  1. Maintain a Dialogue

It’s important to keep lines of communication open. People with PTSD may feel embarrassed to ask for help, so take the initiative and ask them how you and other team members can support them.

Use empathic listening   and pay close attention to what they say. If they’re reluctant to talk, wait for them to open up, and don’t interrupt them when they do start to speak. Be patient, and remember that giving people an opportunity to talk about their concerns can be therapeutic in itself. If they are more comfortable communicating in writing, have the conversation through email.

  1. Meet Their Needs

Start by simply asking what changes you could make that would improve their work environment.

Here are some ways that you can handle various issues and symptoms:

  • Difficulty concentrating  : offer them a quiet part of the office with few, if any, distractions. They might also benefit from using noise-cancelling headphones to listen to white noise or soothing music while they work.

If their role includes a lot of meetings, have someone take notes and share minutes afterwards, or record the meeting so they can revisit it later.

  • Poor memory  : create a list of projects, and provide written instructions on how they should perform each task. Set up a calendar or an electronic reminder that alerts them to approaching deadlines.
  • Time and project management: break up large assignments into smaller, more manageable steps with incremental goals  . Create daily or weekly To-Do Lists  , and have them check off each item as they complete it. Set up weekly one-on-ones to discuss their progress towards any assigned goals. You could also appoint a mentor to support them.
  • Stress  : There are a number of coping strategies for handling work-related stress. Try to remove any triggers in the workplace that might cause flashbacks or other reactions.

Another way to reduce pressure on people with PTSD is to allow them to take breaks from work. This might require you to extend their workday so they can accomplish all of their duties. Constructive feedback and positive reinforcement   can help them feel engaged.

If a particular duty or task causes too much stress, you could restructure their job so it includes only the most critical functions. Offer them time off for counseling, or to attend your company’s employee assistance program. Also, introduce them to mental and Physical Relaxation Techniques  , if they don’t already use them.

  • Anxiety: If someone with PTSD is startled by people around them, consider moving their office or desk to a place where they can see people approaching them.
  • Absenteeism and lateness  : Offer them a flexible work schedule. If they have to take time off work because of their condition, allow them to make it up.
  • Dealing with colleagues: Encourage them to walk away if discussions with other team members get too heated, and to talk about their situation with their colleagues when things have calmed down. This can help to improve relationships and understanding within the team.
  1. Deal With Problems Promptly

It’s important to deal with issues as soon as they arise. If people are not performing well, or are having a hard time at work, speak to them directly, and ask them what you can do to help. At the same time, firm but constructive feedback will enable them to understand what they must do to complete their tasks successfully.

  1. Provide Training for the Team

Raising awareness of PTSD and its symptoms within your team is likely to inspire members to find new ways to work with anyone who has the condition. They may be more patient   and sensitive to colleagues’ needs if they have a better understanding of what they might be going through. To avoid singling out people with PTSD, you might want to offer this training as part of a more comprehensive human resources program.

Note:

Keep in mind that PTSD can have serious medical, psychological and emotional consequences. Seek the advice of a qualified professional if you think that you or one of your team members may have PTSD, or if symptoms seem to worsen.

Key Points

Post-traumatic stress disorder can affect anyone who has experienced a severely stressful event, such as war, serious injury, physical abuse, or the death of a loved one.

Its symptoms often include nightmares and flashbacks, stress, fear, depression, and panic attacks. People with PTSD will likely try to avoid people or situations that remind them of their trauma.

Good communication is key to managing a team member with PTSD. Offer them appropriate concessions to reduce their stress and anxiety at work. Deal with any problems promptly, and train other members of your team to treat those with PTSD with greater understanding.

With thanks to Joyce Boaz and Dr Amy Menna from Gift From Within – PTSD Resources for Survivors and Caregivers. For more information about PTSD, visit the Gift From Within website.

Authorship

By Elizabeth Eyre and the Mind Tools Team

References

U.S. Department of Veterans Affairs (2014). How Common is PTSD? [online]. Available here. [Accessed February 26, 2015.]

Anxiety And Depression Association of America. Post-Traumatic Stress Disorder.

Partnership for Workplace Mental Health, a Program of the American Psychiatric Foundation: Post-Traumatic Stress Disorder.

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COPING WITH GUILT~ Michele Hiester Marcum, Survivor

From the Transition Assistance Program for Survivors (TAPS) Blog website – http://www.taps.org/blog/default.aspx?id=13133&blogid=42571

 

We are coming up on the ten-year anniversary of my brother’s death, and I simply cannot believe it’s been that long. Seriously, where did the time go? And who the heck am I now? A decade of rolling emotions have reshaped me into someone else… and I haven’t yet decided whether I like her.

totensonntagI remember learning in my college psychology classes that there were only six basic emotions in the human population: anger, disgust, sadness, fear, surprise, and happiness.  I don’t remember the details, but I do know that I bought the theory – hook, line, and sinker. But now? Now, I have a hard time believing there would be only six hundred emotions, let alone six. I’m sure there’s some truth to the theory that all emotions sprout from this small handful, but I feel as though the gamut I’ve experienced since Michael’s death vine out from feelings that haven’t even yet been identified. But there is this one emotion that holds all of these together in its clenched fist and forces me to think about it often. Guilt.

I should have written him more while he was deployed. I should have been more understanding of his situation. I should have paid more attention to my mom’s fear that something bad would happen. I should have mailed his last Christmas package earlier so he would actually receive it before the holiday. I shouldn’t have antagonized him when we were young. I should have taken more pictures. I should have been kinder.

And then there’s the here-and-now. I should think about him more, visit the cemetery more, smile less, forget nothing, remember more. Guilt is an unrelenting beast that can suck the joy out of every tomorrow.

family_sunset1Who needs a judge or jury when you’re a survivor, right? We have a litany of “would have, should have, could have” running through our heads at any given time. But here’s the thing I’m learning about my self-imposed guilt; it doesn’t honor my brother.

If he were here beside me right now, I know he wouldn’t want me to feel guilty. He wouldn’t want that thundercloud of shame hovering over my head or stabbing at my heart. He would want me to be happy…to enjoy the very freedoms for which he was fighting. He would want me to live in the way he would have, had he not fallen. He would want me to be brave and daring and seize every opportunity. And he would want me to forgive myself.

I know that I will never be one hundred percent happy ever again. I promise you that. But I can choose joy. I can choose to hold tight to the little moments and let them build a new life. Not a life void of memories but a life built on the knowledge that his death made a difference. And more importantly, that his life made a difference. He changed me because of who he was and because he loved me, not because of how he died. I can best honor him and his sacrifice by choosing how I live each day now.

221_thumbGuilt. Regret. Sorrow. They all have their place. But so do joy, humor, and forgiveness. I have countless emotions to still work through, but I know that guilt should be the least of them. Easier said than done, of course, but it’s a tangible goal for me.

Maybe I do like this new me. Just a little. But I’d much prefer I never had to meet her.

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I Do Not Subscribe to Survivor Guilt

When I was young, I was a pleaser because I thought that was the key to happiness. Someone would need something and I would say “yes,” no matter what the personal cost. I wanted to be that go-to person because, honestly, I thought it would get people to like me. It started out innocuously enough in grade school.

“Hey, can I have your basketball?” asked a student.kidsPlaying

“When I’m done playing with it,” I replied.

“I won’t be your best friend.”

“You’re right. I’m sorry. Here you go.”

And I’d give up the ball, and then they wouldn’t play with me anyway. I thought that living for others would get me happiness. Instead, what it got me was a nasty cycle of regret, resentment, and ultimately, guilt… the most worthless of all emotions.

It took me a very long time to eventually let go of being a pleaser. If you asked what the catalyst was, I couldn’t point to just one thing; invariably, it was a host of experiences that led me to one of my mother’s favorite sayings: “The word ‘no’ is a complete sentence.”

Once you figure out that it’s okay to say “no,” it’s like a spring breeze blowing through a window. And you can use it in so many instances. Want to grab Indian food? Want to help me lift a gun safe? Want to be my wing man on my blind date? Want to go see the latest Nicholas Sparks movie? Want to give me your ball so I can be your best friend?

“No.”

The reason why this was such an epiphany for me was that I learned that the only life I can actually live is my own. No matter how much we love our spouses or our children, we can not live their lives for them, nor they for us, because that’s not what life is about. Life is our journey, our personal path. Yes, it is exceptionally important to make others happy, but the only way to do that is by making yourself happy. Because once you’re happy, you tend to want to share it. It can’t be forced. It has to be organic.

And no, I’m not talking about being selfish. I’m talking about doing for those you love and care about without crossing the resentment line. Because let’s be honest, once you resent someone, it’s very hard to un-resent someone, and how people treat us really is our own choice. If someone is a taker and you keep giving, what is the incentive for that person to become a giver? Hint: there is none.

So having said all of this, over the last few weeks, I’ve noticed more people talking about suffering from “survivor guilt.” For those who don’t know, many cancer survivors who have lost loved ones, themselves, feel guilty about living through something that took someone else.

“Why did I survive? What’s so special about me? I had much worse cancer than my uncle, or niece, or sister, or friend, or mom. Why am I still here?”

compassion2It is a brutal, lonely feeling that, thankfully, I only suffered from for a brief amount of time. When I thought about why I never dwelled on survivor guilt, I originally looked at it from a nature or nurture standpoint, but I couldn’t find my answer. And when I can’t find an answer, I go back to the beginning, and the beginning for many suffering is the question, “Why am I still here?”

And that was the first part of the answer for me. I might be naive, but I do believe that everything happens for a reason, including getting cancer or experiencing a traumatic event. Sure, it took me a while to figure it out that reason, but once I discovered that I had a voice to tell stories and that people liked hearing them, it helped define my purpose for battling cancer.

The second part of my answer was the lesson it took me almost my entire lifetime to learn: that theirs, or yours, is not my life to live. I can only live one: mine. Yes, cancer guts me on a regular basis by who it takes, some I know, some I only read about, but I don’t feel guilty about surviving because I’m doing something with my survival. I’m using it, owning it, and cherishing it.

The good news is that every single person suffering from survivor guilt can attempt to do something about it, but it’s not the easiest path. I’m not guaranteeing that all people suffering are going to benefit from this, but what I am saying is that I believe in turning cancer into a purpose. It absolutely, unequivocally helped me get over any survivor guilt that I once had.

FreedomWhether it takes six minutes or six years to reach that purpose doesn’t matter; all that matters is that it’s searched for and, hopefully, found. It must also be unabashedly personal; it has to move you, envelope you, become part of your DNA.

And no matter what, please know that it’s not a crime to survive cancer, and it’s not your fault when someone dies, not matter how painful it might be.

[Adapted from Dan Duffy’s post on the Huffington Post]

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Lo Que Sus Amigos Con Cáncer Quieren Que Usted Sepa (pero tienen miedo de decir) – Kim Helminski Keller

Las personas con cáncer se suponen que sean heroicos.
Luchamos una enfermedad que aterroriza a todo el mundo.
Somos fuertes porque sufrimos tratamientos que pueden sentirse peor que los tumores malignos reales.
Somos valientes porque nuestras pruebas de laboratorio vuelven con noticias que no queremos oír.
La realidad de la vida con cáncer es muy diferente a la imagen que tratamos de mostrar.
Nuestra lucha es simplemente una voluntad de ir a través del tratamiento porque, francamente, la alternativa es una mierda. Fuerza? Soportamos el dolor y la enfermedad por la oportunidad de sentirnos normal en el camino. Bravos? Construimos una tolerancia emocional y la aceptación de las cosas que no podemos cambiar. La FE entra en acción para cuidar de lo demás.
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La verdad es que si alguien que usted ama tiene cáncer, es probable que no esté completamente abierto acerca de lo que está pasando porque están tratando muy duro para ser fuerte.
PARA USTED!
Sin embargo, si pudieran ser verdaderamente honestos y vulnerables, ellos dirán:
1. No esperes por mí para llamarme si necesito algo. Por favor llama cada vez en cuando y separa una fecha y hora para que nos veamos. Sé que me dijiste que te llamara si necesitaba algo, pero es raro pedir a los demás para pasar tiempo conmigo o que me ayuden con las cosas que solía ser capaz de hacer por mi cuenta. Me hace sentir débil y necesitado, y también estoy asustado que vaz a decir “no”.
2. Déjame experimentar emociones reales. A pesar de que el cáncer y sus tratamientos a veces pueden influir en mi punto de vista, todavía tengo estados de ánimo y sentimientos normales en respuesta a eventos de la vida. Si estoy enojado o molesto, aceptar que algo me vuelve loco y no lo escriba a medida que la enfermedad lo dispone. Tengo que experimentar y expresar emociones reales y no necesito a los que las minimizan o ignoran.
3. Preguntame “¿qué pasa?” en lugar de “¿cómo te sientes?” Vamos a hablar de la vida y lo que está ocurriendo en lugar de centrarse en mi enfermedad.
4. Perdóname. Habrá momentos en los que la enfermedad y su tratamiento que me hacen sentir no como yo mismo. Puedo ser olvidadizo, abrupto o hiriente. Nada de esto es deliberado. Por favor, no lo tomes como algo personal, y por favor, perdóname.
5. Sólo escucha. Estoy haciendo mi mejor esfuerzo para ser valiente y fuerte, pero tengo momentos cuando necesito a desmoronarme. Sólo escucha y no ofrezcas soluciones. Un buen llanto libera una gran cantidad de estrés y presión para mí.
6. Toma fotos de nosotros. Puede que me moleste sobre una foto, pero una imagen de nosotros puede ayudarme a superar momentos difíciles. Una foto es un recordatorio de que alguien piensa que soy importante y digno de recordar. No dejes que te diga “No quiero que me recuerden así como estoy” cuando el tratamiento me deja calvo o con cicatrices. Este soy yo, y como estoy ahora. Abraza el ahora conmigo.
7. Necesito un poco de tiempo a solas. Hace unos puntos que estaba hablando de lo mucho que deseo pasar tiempo contigo, y ahora te estoy diciendo que me des espacio. Te quiero, pero a veces necesito un poco de soledad. Estar solo me da la oportunidad de sacar la cara valiente que he estado usando mucho tiempo, y el silencio puede ser un alivio.
8. Mi familia necesita amigos. Ser padre es lo suficientemente duro cuando tu cuerpo está sano; se vuelve aún más difícil cuando usted está manejando un diagnóstico de cáncer con las necesidades de su familia en el día a día. Mis hijos, que no son lo suficientemente maduros para entender lo que estoy pasando, todavía tienen que ir a la escuela, hacer la tarea, jugar deportes, y pasar el rato con los amigos. Mi cónyuge también podría beneficiarse de un poco de tiempo con los amigos. Salir a un almuerzo o jugar una partida de golf juntos. Me consuela saber que te importa la gente que quiero.
9. Quiero que reduzcas TU riesgo de cáncer. Yo no quiero que pases por esto. Si bien algunos tipos de cáncer aparecen sin aviso, muchos se pueden prevenir con sólo unos pocos cambios de estilo de vida – dejar de fumar, bajar de peso extra, proteger tu piel del daño solar, y atender a lo que se come. Por favor, ve a ver a un médico para chequeos regulares y demanda seguimiento siempre que tengas dolor, sangrado o bultos inusuales aparecen. Muchas personas pueden vivir una vida larga y satisfactoria si esta enfermedad se descubre en sus primeras etapas. Yo quiero que tu tengas una vida larga y satisfactoria. Por Favor. Esto no es agradable.
10. Da nada por sentado. Disfruta de la vida que tienes ahora. Tómate el tiempo para saltar en los charcos, abrazar a los niños, y sentir el viento en la cara. Admira este apasionante mundo que Dios creó, y dale las gracias por permitirnos conocernos.
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Si bien no podemos estar agradecidos por mi cáncer, tenemos que estar agradecidos por los médicos y los tratamientos que me dan la oportunidad de luchar contra esta cosa. Y si alguna vez llega un momento en que los tratamientos ya no funcionan, por favor quiero que sepas que siempre estaré agradecido por haber vivido mi vida contigo en ella. Espero que sientas lo mismo por mí.
[Kim Helminski Keller es una madre, esposa, profesor y periodista con sede en Dallas. Ella está recibiendo tratamiento para el cáncer de tiroides.]
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What Your Friends With Cancer Want You To Know (but are afraid to say) – Kim Helminski Keller

People with cancer are supposed to be heroic.
We fight a disease that terrifies everyone.
We are strong because we endure treatments that can feel worse than the actual malignancies.
We are brave because our lab tests come back with news we don’t want to hear.
The reality of life with cancer is very different from the image we try to portray.
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Our fight is simply a willingness to go through treatment because, frankly, the alternative sucks. Strength? We endure pain and sickness for the chance to feel normal down the road.  Brave? We build up an emotional tolerance and acceptance of things we can’t change. Faith kicks in to take care of the rest.
The truth is that if someone you love has cancer, they probably won’t be completely open about what they’re going through because they’re trying so hard to be strong.
FOR YOU!
However, if they could be truly honest and vulnerable, they would tell you:
1. Don’t wait on me to call you if I need anything.  Please call me every once in a while and set up a date and time to come over. I know you told me to call if I ever needed anything, but it’s weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and I’m also afraid you’ll say “no.”
2. Let me experience real emotions. Even though cancer and its treatments can sometimes influence my outlook, I still have normal moods and feelings in response to life events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them minimized or brushed off.
3. Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness.
4. Forgive me.  There will be times when the illness and its treatment make me “not myself.” I may be forgetful, abrupt or hurtful. None of this is deliberate. Please don’t take it personally, and please forgive me.
5. Just listen. I’m doing my very best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. A good cry releases a lot of stress and pressure for me.
6. Take pictures of us. I may fuss about a photo, but a snapshot of us can help get me through tough times.  A photo is a reminder that someone thinks I’m important and worth remembering. Don’t let me say “I don’t want you to remember me like this” when treatment leaves me bald or scarred.  This is me, who I am RIGHT NOW. Embrace the now with me.
7. I need a little time alone.  A few points ago I was talking about how much I need to spend time with you, and now I’m telling you to go away.  I love you, but sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the silence can be soothing.
8. My family needs friends. Parenting is hard enough when your body is healthy; it becomes even more challenging when you’re managing a cancer diagnosis with the day-to-day needs of your family. My children, who aren’t mature enough to understand what I’m going through, still need to go to school, do homework, play sports, and hang out with friends. Car-pooling and play dates are sanity-savers for me. Take my kids. Please. My spouse could also benefit from a little time with friends. Grab lunch or play a round of golf together. I take comfort in knowing you care about the people I love.
9. I want YOU to reduce YOUR cancer risk. I don’t want you to go through this. While some cancers strike out of the blue, many can be prevented with just a few lifestyle changes – stop smoking, lose extra weight, protect your skin from sun damage, and watch what you eat. Please go see a doctor for regular check-ups and demand follow-up whenever pain, bleeding or unusual lumps show up. Many people can live long and fulfilling lives if this disease is discovered in its early stages. I want you to have a long and fulfilling life. Please. This is NOT pleasant.
10. Take nothing for granted. Enjoy the life you have right now. Take time to jump in puddles, hug the kids, and feel the wind on your face. Marvel at this amazing world God created, and thank Him for bringing us together.
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While we may not be thankful for my cancer, we need to be grateful for the physicians and treatments that give me the chance to fight this thing. And if there ever comes a time when the treatments no longer work, please know that I will always be grateful for having lived my life with you in it. I hope you feel the same about me.
[Kim Helminski Keller is a Dallas-based mom, wife, teacher and journalist. She is currently receiving treatment for thyroid cancer.]
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I Had/Have Cancer And Do Not Want To Talk About It

Whether you had cancer, have cancer now, or are a loved one of someone affected by cancer, many times we feel like we do NOT want to talk about it. There are many reasons for it and you need to respect that decision. Some feel scared of the possibility of losing their lives. Others do not want to have their condition be at the forefront of every conversation. It is already tough trying to live a “normal” life and fighting to live life fully, for as long as they can.

Others want to share the feelings of not talking openly about their cancer situation with others in the same situation – being an inoperable brain tumor (benign or not), breast cancer condition, prostate or testicular cancer, the aggressive pancreatic and liver cancers, or others. There is a feeling of discomfort due to the external symptoms of the cancer condition. More private conversations take place that better help with the healing and coping with the illness. All one can do is offer an opportunity to talk. If the patient is not ready, feel uncomfortable, or is more selective about to whom they want to talk about their condition, one must not bring added stress by insisting. However, if they do want to talk, be an active listener. Most times that’s all we need.

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If you are ready to talk about your feelings about cancer, here are some general recommendations:

Talking about your feelings can help you deal with your cancer.

  • Choose a good listener.
  • Choose a good time to share your feelings.
  • Understand your feelings of anger.
  • Be truthful to what your feelings are.

You may need to find someone outside your family to talk to. Cancer may be too much to handle all by yourself.

Friends and Family Have Feelings About Your Cancer

Just as you have strong feelings about cancer, your family or friends will react to it as well. For instance, your friends or family may:

  • hide or deny their sad feelings
  • find someone to blame for your cancer
  • change the subject when someone talks about cancer
  • act mad for no real reason
  • make jokes about cancer
  • pretend to be cheerful all the time
  • avoid talking about your cancer
  • stay away from you, or keep their visits short

Finding a Good Listener

It can be hard to talk about how it feels to have cancer. But talking can help, even though it’s hard to do. Many people find that they feel better when they share their thoughts and feelings with their close family and friends.

Friends and family members may compassion2not always know what to say to you. Sometimes they can help by just being good listeners. They don’t always need to give you advice or tell you what they think. They simply need to show that they care and are concerned about you.

You might find it helpful to talk about your feelings with people who aren’t family or friends. Instead, you might want to meet in a support group with others who have cancer or talk with a counselor. You can find more information about where to go for help in “People Helping People”.

A single arrow is easily broken, but not ten in a bundle.


Japanese Proverb

 

Choosing a Good Time to Talk

Some people need time before they can talk about their feelings. If you aren’t ready, you might say, “I don’t feel like talking about my cancer right now. Maybe I will later.” And sometimes when you want to talk, your family and friends may not be ready to listen.

It’s often hard for other people to know when to talk about cancer.

Sometimes people send a signal when they want to talk. They might:

  • bring up the subject of cancer
  • talk about things that have to do with cancer, such as a newspaper story about a new cancer treatment that they just read
  • spend more time with you
  • act nervous or make jokes that aren’t very funny

You can help people feel more comfortable by asking them what they think or how they feel. Sometimes people can’t put their feelings into words. Sometimes, they just want to hug each other or cry together.

A man with stomach cancer said,

“It was really hard to get my sister to talk about my cancer. Finally, I just said to her, ‘I know you’re really worried and scared. So am I. Let’s talk about it.’ She was so relieved that I had brought the subject up.”

 

Expressing Anger

Many people feel angry or frustrated when they deal with cancer. You might find that you get mad or upset with the people you depend on. You may get upset with small things that never bothered you before.

People can’t always express their feelings. Anger sometimes shows up as actions instead of words. You may find that you yell a lot at the kids or the dog. You might slam doors.

Try to figure out why you are angry. Maybe you’re afraid of the cancer Afterschool_YellingKidor are worried about money. You might even be angry about your treatment. A man with advanced cancer said,

“I got so angry some days that I just wanted to take it out on something. On those days, I always tried to be angry at my cancer, not at my wife and daughter.”

 

When anger rises, think of the consequences.
–Confucius

 

Be True to Your Feelings

Some people pretend to be cheerful, even when they’re not. They think that they won’t feel sad or angry if they act cheerful. Or they want to seem as if they’re able to handle the cancer themselves. Also, your family and friends may not want to upset you and will act as if nothing is bothering them. You may even think that being cheerful may help your cancer go away.

When you have cancer, you have many reasons to be upset. “Down days” are to be expected. You don’t have to pretend to be cheerful when you’re not. This can keep you from getting the help you need. Be honest and talk about all your feelings, not just the positive ones. An older woman with liver cancer said,

“The advice of well-meaning friends to be positive, optimistic, and upbeat can also be a call for silence. Ask them about it. Don’t let them force you to put on a fake smile when that’s the last thing you feel like doing.”

 

Sharing Without Talking

For many, it’s hard to talk about being sick. Others feel that cancer is a personal or private matter and find it hard to talk openly about it. If talking is hard for you, think about other ways to share your feelings. For instance, you may find it helpful to write about your feelings. This might be a good time to start a journal, a personal blocompassiong, or diary if you don’t already have one. Writing about your feelings is a good way to sort through them and a good way to begin to deal with them. All you need to get started is something to write with and something to write on.

Journals can be personal or shared. People can use a journal as a way of ‘talking’ to each other. If you find it hard to talk to someone near to you about your cancer try starting a shared journal. Leave a booklet or pad in a private place that both of you select. When you need to share, write in it and return it to the private place. Your loved one will do the same. Both of you will be able to know how the other is feeling without having to speak aloud.

If you have e-mail, this can also be a good way to share without talking.

Summing Up: Sharing Your Thoughts and Feelings About Cancer

Cancer is hard to deal with all alone. Although talking about it may not be easy at first, most people find that sharing their thoughts and feelings helps them deal with their cancer.

Keep in mind:

  • Choose a good listener. You may not need someone to give you advice or tell you what to do. Instead, you may want someone who wants to hear about and try to understand what life is like for you right now. You may need to look outside your family to find such a person.
  • Choose a good time to share. Sometimes people will send signals to let you know they’re willing to talk about cancer with you. Sometimes you can ask others about their thoughts and feelings.
  • Understand anger. Sometimes angry words come from emotions other than anger, like frustration, worry, or sadness. Try to figure out why you feel angry and why you need to express it. Don’t run away from these feelings–share them and try to understand them.
  • Be true to your feelings. Remember that it’s okay to be in a bad mood. Acting cheerful won’t give others a real picture of how you feel, and holding in your true feelings may even be harmful.

Turn to community resources for help. A support group or a counselor might be able to provide more support.

More information at the National Cancer Institute (http://www.cancer.gov/cancertopics/takingtime) and for One-On-One Support contact the LIVESTRONG Foundation (http://www.livestrong.org/we-can-help/)

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Not Only We Remember, We Can Never Forget.

1239999_10201117580114093_1654880312_nThis week we observe 13 years since the unthinkable acts of September 11, 2001. Being a physical witness at the Pentagon where I saw innocent lives taken from us, I not only remember the horror and the possibility of not seeing my loved ones ever again, but also cannot forget the good that came for our Nation and for many of us that day.

It was not my time that crisp, beautiful Tuesday morning. As the world changed in an instant, so did I. God had other purposes for me, other than calling me home that morning. My experience awakened a new passion to assist those who ask “Why them and not me?” and spend a significant amount of life feeling guilty for living. God gave me the blessing to become a father, a cancer patient advocate, and a voice for those experiencing this “Survivor Guilt”. I learned the gift of every second, to give and be the best I can be, as if the next second would be my last one; to live life fully, out loud, and without excuses, being responsible and not limiting my challenges. Some accuse me of being an overachiever, but, thinking about it…, am I? Or am I just using all the talents given to me before it is too late or my time comes and they end up stored and unused at the service of others? 

One act, one second, one instant, can and will change someone’s life. May this week and on Thursday, as we observe and remember, let us not forget to think about our purpose. We are all here for a reason. Life is a beautiful gift that we much too often take for granted and one that can be taken from us in an instant. Make it count. Never Forget. To our friends and family members lost that day: Rest in Peace, my friends. Your sacrifice and you will not be forgotten.

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