Something much harder than cancer will happen.

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“You have cancer”

More than once in my life I have heard these words. Everyone from my beloved grandma with breast cancer to my father with Hodgkins and finally the day it was said to me.

I know it is terrible and difficult news that your mind is railing against while repeating it on a never ending loop inside the part of your skull that can carry words in an echo chamber. It really is shattering. But it is not the worst thing that is going to happen. Not by a long shot. No, something far more horrible is within reach.

You will lose friends and/or family.

Take a deep breath.

Every article, essay or story about cancer starts with this warning. It should be added to every chronic illness as well. No matter how many times I read these words, I am still unprepared to deal with the reality of someone either openly or covertly ending their relationship with me because I have cancer.

It had happened to my first husband when he was diagnosed with end stage pancreatic-liver cancer. It is never the people you expect to ditch you. Nope. It’s some of the ones who you felt sure about. The ones who swore at sometime, somewhere, to be with you through thick or thin. Like many things, oaths, the life blood of my Celtic heritage aren’t what they use to be. It will hurt when the relationship withers and dies. There is nothing you can do about that. Except to acknowledge it and live through the deep sadness and betrayal of abandonment. Oh, you will feel betrayed, hurt and angry. I recommend singing soul wrenching music, sweating out your emotions through dancing if you are able and take up drumming. All three of these give you a physical outlet to pound something without hurting anyone. The anger moves on. The betrayals, I am still working on.

For anyone contemplating leaving a comment about forgiveness, please stop yourself. I won’t publish the comment. When a friend or family member walks out on you, it is normal to be angry and hurt. You should not give them a free second chance to hurt and abandon you. I loathe “forgiveness culture” where the ultimate absurdity is to forgive yourself. I have a litmus test for “pop” psychology and New Age-isms. If my grandmother never used an idea like “self forgiveness” and would have called it ridiculous, it is just that. Ridiculous. Getting cancer is NOT something I need to forgive myself for. Having a lousy friend or weak family member is not about me either. It’s on them to find forgiveness. It is not on me to pass out “I forgive you’s,” with the bizarre notion that it is beneficial for ME to forgive THEM. It’s long overdue to call BS on that practice. I have not once, not ever, felt better, freer or more loving after forgiving someone who hurt me without any effort on their part to correct the transgression.

If they want to ask for my forgiveness, that’s a whole different thing. It always starts with fourteen words, from them, “I was wrong. I am sorry. What can I do to make this right?” Just so you know, these are the words I use when it has been me who hurt someone else. It is only the start. Forgiveness should be earned, just like trust. Mostly because trust has been broken when you hurt someone.

Also for anyone who felt the need to leave a friend or relative who got cancer or any other illness please don’t leave your reasons on this post. I won’t approve those either. There are a minuscule of necessary exceptions for when leaving is appropriate. Sometimes Dementia and Alzheimer’s fit that exception. But, please, they are exceptions, not the rule. You may have had equally difficult problems or worse things going on in your own life when your friend got sick or when they had yet another complication to their serious illness. We all get overwhelmed. Here’s the thing, my cancer really is all about me. I own it. I share when I am asked by my Neuroendocrine cancer/carcinoid community or an individual asks about it, or I need to vent. I vent infrequently these days. So, when I hear, “I can not handle your cancer, it’s just too hard for me. I can’t be your friend anymore,” I want to know in what way are they handling MY cancer. I checked. It is impossible to give anyone else my cancer to handle for me.

Last are the ones who will say they are only interested in relationships that are reciprocal. Well, WOW. Not once in my life has any relationship been completely reciprocal at all times. Sometimes I am giving more time and energy and sometimes it is the other person doing that, cancer or no cancer. Life does not balance out every second of the day. Sometimes it doesn’t balance out for months or even years. I am not a good score keeper on this front. Perhaps that is one of the secrets of success to my beloved husband’s and my marriage. We never keep score and we are co-conspirators for life, facing the world together with our hands intertwined shoulder to shoulder. Not once have we ever talked about reciprocation or equity. We each do our best for us everyday, however much that is.

What do I or anyone with an illness want? How about just stick around. We may be gone for long bouts of time and that can be annoying and frustrating. My cancer is rare, slow growing and currently incurable. With my current standing, it is possible for me to live a long time. I could also be sick in varying degrees of seriousness for much of that time due to my cancer or other diseases. I have more than one illness because…well…the universe is not fair. We who are ill, want to be welcomed to join you when we physically can. We want to know that you have the resilience to let us be gone when our ilłness forces us to be unavailable. It is the ultimate gift you can give us. My best example is this: We don’t walk out on life because winter lasts longer than we like. When spring comes we are happy to just have it visit us once again. My illness is like that winter that can drag on for too long or reappears after spring has started. It is very inconvenient and unsettling. I know the vast majority of my friends stick out those wintery days with the surety that spring will come and put an end to winter, hoping that summer will be even sweeter and easier. I would ask for the same patience regarding the weather of mine or anyone’s illness.

For every friend and family member who has stuck it out with chronically or long diagnosed sick people, I thank you with all my heart and soul. You did not demand reciprocity. Instead you gave real love, compassion and the open understanding that welcomes us when we are able and gently waits for us when we are unable. Being this kind of friend is rare and wonderful. I believe it reveals the best part of people and life.

Blessings,
Bridget Robertson

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Rarest of Them All.

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I’ve been having a rough patch. I was frustrated. I found empathy…….

This all began two weeks ago. There have been several visits to the ER, tachycardia and blood pressure swings. I had another allergic reaction to a new medication. I suddenly got new lumps all over my left forearm. The primary care doctor could not identify the lumps. I need a new oncologist, cardiologist and we are still on the hunt for an oral surgeon and dentures. On and on it goes.

My husband and I really tried to get appointments set up. He took two days off of work . There is no way to hurry offices that tell you it may take up to 48 hours to return messages. Then if one insists they don’t have correct information to send your records…..it takes much longer to get appointments, even with two people making calls and follow ups. Serious health problems or not, clinics, hospitals, doctors and the medical system works at what can be an excruciatingly slow pace.

The one appointment we were able to make was with another cardiologist. I have lost count to tell you which number he would be, fourth I think. My second cardiologist did an echocardiogram several months ago. He wanted me to have an angioplasty, a highly invasive procedure. He also did not want to answer any questions I had as to why. He wouldn’t address my complicated medical problems, like the NETCarcinoid/Carcinoid Syndrome, which can have a heart problem cardiologists call Carcinoid Heart. Nor did he want to talk about my anaphylactic shock to blue contrast dye (iodine), neurological issues, tachycardia, blood pressure etc. I delivered a well deserved speech to him. He did manage to leave a somewhat negative remark on my chart. Oh, the kind that may allow an insurance company to deny payment. So, getting this second opinion was absolutely necessary. Still, after the last two weeks, I was less than grateful yesterday to be seeing another new doctor.

The new cardiologist started out to be golden. Any doctor who begins an appointment by stating his first obligation and responsibility is to “DO NO HARM” and then….and only then…to treat me….is a keeper. He went through every detail he could and rendered a very different opinion and option than any previous cardiologist. We agreed upon a non-invasive low risk procedure that would give 90-95% accuracy as to whether I have any real artery blockages. He doubts I do. His nurse did an extensive history and questioning of all my symptoms. (I adore nurses) He definitely believes I have never had a heart attack, silent or otherwise. He wishes his other patients had blood work with my low triglycerides, glucose, cholesterol, etc. It’s unusual when they give credit to your vegan diet like he did. He thinks my heart may have a somewhat lower than normal output of blood flow. It most likely has been that way since birth. After the test, he can finally answer my neurologist’s question about whether my heart is contributing to my debilitating fatigue. His guess at this point is that it does. He wants to fine tune one medication to help with my tachycardia, keep an eye on my low blood pressure and do annual echocardiograms to keep checking for Carcinoid Heart. ( Which I do not have at this time) This is great news. This was the first cardiologist who seemed to be on the ball. I felt relaxed and confident that FINALLY, I had a great cardiologist.

Then he gave me a perspective I really needed to hear and keep in mind.

When we made the appointment, his clinic flagged my NET Carcinoid/Carcinoid Syndrome to check if any of them had experience with it.

He said, “Our clinic In the Dallas/Fort Worth Metroplex, has about seventy five cardiologists. Not one of them has ever seen anyone with Carcinoids, except me. I need you to understand that my experience is with ONE patient for a very short time. My practice consists of Intervention Cardiology, meaning heart holes, procedures, bypasses, resections, valve replacements, murmurs, etc. That is how rare your illness is. It is also how rare finding DOCTOR’s who have seen, much less treated a patient with Carcinoids is. If you have complications, I am going to have to find another cardiologist and I don’t even know where to begin. I am always going to tell you what I don’t know. If it comes to needing an expert, I will do whatever is necessary to get you to the right cardiologist and you will probably have to travel somewhere else in the United States.”

His statement caught me off guard. Intellectually I have always known how rare my disease and actual experts are. I grumble about the lack of real ones all of the time. Yet, because I am living in the fourth largest metropolitan population of the United States, I was still expecting there to be at least a few cardiologists who are experienced “enough”. It was the first time I was given a number that impacted me. Expert doctors are very rare. Having a doctor state that truth to me, may be the rarest of them all. He was genuine. I was stunned at my lack of understanding for my caregivers challenges when they see me. I was moved to empathy and compassion for what I expect is the frustration amongst doctors and other health caregivers like him who want to help but have limited knowledge of my disease.

Yep, we are still getting records transferred. The new oncologist, she left a message, asking me to hang in there while this is getting sorted out. I still have lumps in my left arm. I still need an oral surgeon. For today, it’s gonna be fine. This is life. Nobody gets a smooth course no matter what they are dealing with. I did notice my primary care doctor, neurologist, my new oncologist and this cardiologist all have hired nurses in their offices. That alone is huge. Nurses are the first line of patient advocacy and care. They ask questions that doctors don’t always think about. They notice changes in patients that doctors often don’t. Every doctor I have that has hired a nurse points out how much better it has been for both them and the patients. I couldn’t agree more. I had an unexpected gift come through my email. A song, composed and written by a woman with NET Carcinoids. It is a tribute to her nurse who helped her through the very frightening aspects. It’s easy to get cynical. My new doctor and she reminded me, most people are doing the best they can.

So , thank you to all the rare doctors and nurses who treat us. A very special thanks to the rarest of them all, those who state their limitations and stay the course with us until we get what we need.

Blessings

Bridget Robertson

Please check out this song. If you like it, please vote for it. I received nothing for this other than a great song and album I bought for my extensive “Songs That Move Me” playlist.

http://songsforlife.org/hush-giovanna-imbesi/

This song can be bought on Amazon and iTunes.

Dedicated To All ZEBRAS!

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The mascot for NET Carcinoid/Carcinoid Syndrome is zebras. I belong to three Facebook NET Carcinoid/Carcinoid Syndrome groups. Not all Facebook space is created equal. I have found that which can be elusive for some people, real support and help as I enter what I call “The Holy Gates” of my Carcinoid groups. Some make posts, others comment at times, for whatever reason, at times people just read through the many threads. I promise, I can feel each and every zebra no matter how much or how little they actively contribute.

When one of us is accepted into a new drug or treatment trial or has a successful procedure we all celebrate. I know some people believe Pharma and doctors are only in it for the money. I know some think modern medicine gets it wrong. Please consider, that when your very life is on the line, even previous held beliefs matter much less than being given options. So, I cheer every zebra, no matter what they choose. If that is where they see their best chance, I am behind them all the way. If one is going to an ER for any one of the many serious problems that comes with this cancer or syndrome, or are scheduled for a difficult procedure(s) or having hard times, the herd will hold them up. When one dies, we all mourn, even if we don’t know their name or the details. Boundaries are respected and no one judges where you are on your journey. There is always an outpouring of care and compassion as we wind our way through the pain, procedures, tests, unknowns and the medical systems throughout the world. We light candles, say prayers, share our experiences, get resources, find ways to better our lives and bless each other everyday.

We are a diverse and worldwide zebra herd and family. We also have many shared experiences. Many have other illnesses besides Carcinoids. Most have had to fire several doctors along the way. I was officially diagnosed 10 years ago this month. I have had NET Carcinoid/ Carcinoid Syndrome for far longer than that. I have had other illnesses since my childhood, since birth. A few decades back I had a some good years. All. In. A. Row. These days I look forward to having a good day. Heck, I’ll take several hours strung together. My diagnosis came by way of a dermatologist working to eliminate my stubborn and extreme “Rosacea”. I was certain that while painful, it was a minor problem. He mentioned that he had heard of something called Carcinoid Syndrome and thought it was a gastric condition. My gastroenterologist, had been unsuccessfully treating me for “IBS” for over ten years, because it wasn’t IBS. It was all part of my Carcinoid Syndrome. Fortunately, the dermatologist ordered my first 5HIAA. Just one of a long list of tests I had and have done.  It would be months before I even got to see an oncologist. Like many, my journey has had its fair share of difficulties. My first really big hurdle came when a new insurance plan denied coverage for my treatment after I had been receiving it for three years, saying it was unreasonable and without a specific pathology. My oncologist who while claiming to be an expert in Carcinoids, was not, shrugged and said there was nothing he could do. He was retiring. It was only after quite a bit of time and when I got a new primary care doctor, that treatment resumed. He was more of an expert than any doctor I had met to that point. He knew, and was the first to tell me, that Carcinoids was NOT benign and that having an unknown primary did not change the fact that this is a very serious cancer that could spread ( metastasize) anywhere. He filled out, in detail, extensive insurance forms and wrote in depth letters. I got my treatment back. He and one other doctor helped get me a few new doctors. He is also very rare in the sea of medical professionals that we zebras must wade through to get diagnosis and treatment.

While I understand the wisdom of taking control of your health, medical systems are designed to make compliant and quiet patients. I suggest reading Jean Shinolda Bolen’s book “Close To the Bone” to get an accurate description of how that plays out. We are rarely those compliant patients. We question doctors extensively. We change doctors when needed. We spend our days looking over information, researching on the Internet, getting data, learning medical language, getting reassurance and advice from each other, looking for any alternative treatments and doing every spiritual, and emotional healing practice that we find useful and palatable. We are very informed patients on all manners of healing. We are also making our lives as rich as possible. We do what we can each day to be about the business of living.

I never forget that I am very lucky. I have a spouse who loves me and tirelessly helps me with what would be simple tasks for many people. I have friends and family that respond to my posts and blogs with a great deal of encouragement, compassion and even fantastic humor. They see all of me and accept my diseases right along with me. Some zebras never tell anyone, anywhere about their disease especially on Social Media. Others make posts that get no response. We, zebras work to understand. We know that people want happy, positive posts. We know some will be irritated by our updates on our health. We know our disease frightens some. It frightens us too, along the way. And we don’t have a way to disconnect it from our bodies. Most all of us zebras have had people disappear completely without giving any reason, including family. We feel the real sting and hurt when that happens. I have to say this is a flaw of mine. I am not one to forgive people who walk out on sick people. I don’t mean just me. I mean anyone who is sick. Nor, do I apologize for this flaw. I don’t intend to change it. If others want to forgive…feel free. You MAY have better angels than I do. I have no patience for this behavior.

I would ask that today to think about NET Carcinoids which is rarely given much attention. Also, consider everyone including yourself, if it applies, that is having to cope with chronic and life threatening illness. Be gentle with the sick. We are not lacking positive thoughts or vision. A post that Clarrisa Pinkola Estes made recently on Facebook went into great detail asking everyone to withhold judgement and speech about simplistic “cause and effect” or blaming sick people. We all know that some who do all the healthy things, are generous and kind, still get sick and die young. We all know a few who do everything unhealthy, can be mean, selfish and horrible who live well and into old age. I avoid simplistic answers and ten second memes that spout them. I think people are more complex. I think the “cause” of most things is complicated and multifold. And please, if you need support, I encourage you to join a group that does just that. I consider my fellow zebras and our groups “Sacred Ground”.

I also want to thank all of you, my friends, family and fellow zebras. Sometimes I get exhausted, angry, bitter, feel bewildered, betrayed and occasionally despair. It is often the simple gestures that matter most. Many of you pm me songs, stickers, pictures, wonderful messages or leave a comment on one of my posts. I hope to start Skyping with many of you soon. Sometimes those are the only things that get me back into my warrior spirit. On the days when I can do the whole FB thing….I love your posts. I want you to know how many talented, funny, brilliant, beautiful and generous people I know and call friend, family/zebra.

Blessings to everyone,

Bridget Robertson