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

Brigid.

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BRIDE, BRIDEY,
BRIGANTIA, BRIGANDU, BRIGGIDDA,
BRIG, BRIGHID, BRIGIT,
BRIDGE, BRIGITTE, BRIDGET,
BREO SAIGHEAD, and many more.

 
Brigid, whether Goddess or Saint is known across Ireland, the British Isle and much of Western Europe as “The Exalted One”.
An ancient Goddess, so ingrained in the hearts and souls of the people that the Catholic Church made her a saint. She is beloved as both. In my life she was always present from a distance, exerting only one influence. It is an aspect usually mentioned as a footnote.
Amongst her many attributes, she is the Goddess of smith craft. Perhaps it is because so many like the the warmth of her spring return, or her promise of new life, or the patroness she offers to poets and writers that keeps this aspect almost forgotten. I suspect we are weary of war and anything to do with it. Yet, to not know this, misses so much of her essence.

 
A fiery, shining Goddess and Saint that has numerous sacred wells dedicated to her would be odd without understanding the essential role of smith craft. She has been tempering me since birth. This is not a girlfriend, but a serious Goddess working from the pit of a dirty, sweaty forge. She has watched and tended the fires of my life changes and difficulties. Then hammered my insecurities and uncertainties , honing the new skills I attain to unfold my resilience. At the end I am lowered into waters of life that determine of what real strength I am made. We do this jointly at precision temperatures and time. Or, I, like the physical act of sword making would shatter, or become too soft with useless dullness taking over. The sword of my being is returned to cut through the dross, leaving only the essentials I need, use and love. Shields emerge to defend time and core essence, protecting myself and those I love from the unnecessary noises of life that would drain life loves, passions, accepted commitments and the ever changing wheel of life’s surprise losses and fortunes.

 

This is her annual visit. Surprisingly, I have found her within me this year. Though, I expect She will give way to the two Goddess’s who chose me. She will watch from a distance until my life will be baptized by her fire and water once more.

__Bridget Robertson

January 2,

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There are a few events that make clear dividing marks between before and after. There is no bridge that can be constructed to get back to or even visit that before. A select few life events will change your very core in irrevocable ways. My soul was and still is altered without my ever having given consent.

January 2, is the anniversary of my first husband’s death. He had been diagnosed two and a half months earlier with pancreatic liver cancer. Oncologists kept calling it very serious. My mother, a retired nurse and my stepfather a retired doctor were both given access to his records. It was my stepfather who used the words “end stage” from the beginning. My mother, in full nurse mode made sure I could give insulin injections, change bile bags on a liver stent that never quite worked, change out IV’s, checking the line flow that included anything from from antibiotics to feeding bags. She had everything scheduled for me and there was a visiting nurse allowed by my insurance to stop in for fifteen minutes twice a week. I had a full handle on all necessary home hospital equipment as his needs changed very rapidly. I had worked out getting him to daily chemo and every other horrid test and surgery they proposed. I knew most, if any of this would not help him. But, it was his life and his decision. It was out of love that I supported any one he made.

On December 22 hospice took over, a nurse was now three times a week. I was able to get someone to assist in his bathing and personal care twice a week. I went out on full, no pay leave. I had been able to work very few hours per week until then. His family kept insisting I was going to lose my job…as if that mattered. Or tell me I would need to wait to take time for “the end”. You have no idea what it took to explain to them that it had been the end since the diagnosis.

When you midwife someone you love through death, being there daily with very little help, reality changes. Forever. Death moves in with you without invitation and pulls up a chair throughout each day. I knew to make it an ally. It took very little time for me to know he would die soon. Death would now  be my companion for life. Not because he was dying, because death initiates you as its life companion.  I was and am acutely aware of it beside me for all my remaining days in this world. Death serves a purpose. Life is suppose to have a beginning, middle and ending. In my religion the Goddess that midwifes you into life, always stays with you through it including midwifing your own death. Since then,  I both see and communicate daily with her.

If I believed in a devil it would be grief. It pays no heed to it being a quarter of a century later. Nor that I am very happily remarried. It made that demarcation of before and after. It runs a course that has very nasty timing. Rogue waves would be easier to predict. The only sure thing is that it will come out every January 2. The body is how grief keeps score. Time does let dates slip from your mind, but the body will not. If I am lucky unexplained tears will be limited to this one day. Other years it starts sometime in December. As I search for the cause of this body weeping, eventually I consult a calendar and from deep in my soul the date of his death with bubble up. Grief is tenacious. It will grip you at will and nothing will hurry it until it has completed this round. I have learned to sit back and brace my cells while it runs this emotional roller coaster in my body. And it is my body that bears the brunt of these visits. There is a large crack somewhere inside me that allows entry and both generates and receives the blast of pain, loss and drowning. None of this is about my first husband. No, it is about what happened to me as I focused solely on his death assuring myself I could process my own feelings at some future date. It was a horrible bargain to make. I had no idea that the future date would be a recurring one.

I now have cancer. I promise you no matter how terrible my days may be, this side of the fence is a cake walk compared to being the spouse care taking. I have an exceptional husband. One who both knew and fully accepted that my old grief mixed with my own cancer would be debilitating at what is suppose to be the ” happiest time of the year”. When he worked in retail it was easier . Anyone who works during Christmas season in retail, pretty much hates the holidays by the the third of December. There is no pressure to be happy. Since leaving retail, he still watches and comforts me when that grief makes it chaotic appearance. He is rare and I know that.

Grief will move on. For a few days it is being stuck in glue that demands tears, quiet and endless patience as it racks me with that pain and mental mixed with emotional agony that has no basis in my disease. No, I can’t find all the words to explain the debilitation. There is no treatment other than deciding to head straight through it. Anything else only makes it worse. Grief also has many other faces. In the midst of this pain I can find myself feeling a strange invincibility. It is a dangerous yet necessary task to live that out as well. Other “insignificant” life chores will pull at you. In some absurd perception, you refuse to do them with a daring, demanding them to attempt their worst. This part of grief knows nothing would be worse than what has already happened. It is a boldness born of living through a terrible event that causes this recklessness. I did tell a Senior Vice President at my job when I returned the first year there was nothing he could do including firing me that would come close to what I had been through and challenged him to do whatever. He didn’t and stayed wary of me for over a year. I don’t recommend that response, but it may be inevitable to get others to understand grief. Oh, and honestly there is no one, no seminar, no therapy, herb, essential oil, no spiritual guide, book , technique, meditation or wisdom that will make this better.

It’s January 2, and this is what is.

Bridget

Because it is Not Portable

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We are moving

A different kind of post today.

Strange as this may be to some, many of my husband’s  and my spiritual practices as pagans ( a catch all term for anyone not practicing one of the three major Abrahamic religions) are tied to the land we live. While we honor and connect through the Goddess, it is our everyday contact with Faery that binds us to our earth religion. We developed and practice a tradition we based on the land we live. It is foremost involved with the nature spirits of the land we stand on, the ancestors of the same land and the ancestors of our bloodlines. We have bloodlines of the northern European people, especially the Celts.

The bloodline traditions are moveable, they reside within us. They are not the foremost part of our spiritual practices. It is easy to follow bloodlines. Following the spirits inhabiting the land is not easy. In Ireland and elsewhere these are often called Fairies. They are nothing like Disney. I have found that the work of R.J. Stewart, John Matthews, Wendy and Brian Froud , even Charles DeLint and current researchers like Carolyn Emerick and several others to be very accurate when understanding our intertwining with them.

The nature spirits that inhabit Texas are very different than the ones in Arizona. If you do find this strange, think about The Trail Of Tears. The forced moving of the Cherokee’s not only caused sickness, hardship and death, it also caused a fracture between them and the land they were immersed in. Their spirituality was not portable. The ways of the woodlands, flora and fauna were integral to their everyday lives which was interwoven with their spiritual lives. Again, nature spirits in Oklahoma are nothing like the ones in Virginia. As a separate race, the Fey, are often very wary of humans. We were suppose to be their partners in preserving the primal blueprint of the land we share with them and all of nature. We as a species have been less then stellar when it comes to holding up our end of this bargain.

John’s and my practices will make adjustments and changes as we are invited and hopefully over time welcomed by these beings. And time it will take. They are not in any hurry. Time moves differently for them. It is the job of humans to meet them on their terms. In some ways this is the hardest part of moving. We will be uncomfortable for awhile.

Our religion is nature. It is our church and all land is holy ground for us . Our acceptance must be earned. We are willing.

Blessings to all.

Bridget

The Longest Night…

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I am a child of Winter.

Literally.

I was the second child in my family born on December 25.

My mother had years of traditions that placed Santa Claus on Christmas Eve and two birthday cakes with separate birthday presents on Christmas morning.

Yet, what I honor and love is the longest night of the year, the Blessed Winter Solstice

My time was spent at a grandmothers home tucked into a tiny town in the Wisconsin countryside

Resting on the shores of a beloved lake, usually semi frozen

Water in any form is my element.

We were far from artificial light that dims the night sky and stars from view. I could see them all on a clear night.

Cold with sometimes fallen snow, I simply was bundled to stay outside on this treasured night.

If cloudy, my love and awe were not dampened.

I have cherished this dark all of my life.

Others will celebrate a birth tonight,

I start that tomorrow, revering both Mother and child.

This is my tradition.

I claim it as only my own.

I light no candles.

No fires are burned.

Know this night on its own terms. It needs no illumination. That time will come soon enough.

If I must , I speak only in whispers.

Better to hear the silence.

No rush, no hurry, just being enveloped by that which is wrongly declared hostile.

This is my home.

Give me a north wind with many long winter nights.

I will relish them until I no longer exist.

For in this night, in this darkness, a hibernation of the senses,

I meet my soul from a time I have yet to know.

She is old, wearing life on her face,

always fierce, sometimes stark,

I love her deeply.

She can be found here, on this, the longest night.

Blessings to all
Bridget Robertson

 

 

Just For Today

 

 

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Just for today it will have to be enough.

Just for today every bird will be a flock.

Just for today every leaf that refused to change color dropped to fall.

Just for today a lake will have to be my ocean.

Just for today the repeating lyrics and music of “On And On It Goes” * will cry and hope me through.

Just for today that song is my life metaphor.

Just for today each moment will be painted with conflicting colors of dreams and despair.

Just for today my language may be of sorrow.

Just for today It will be mixed with promises of journeys and joys yet to be taken.

Just for today confusion is my companion.

Just for today death’s call may find a way to tempt my soul.

Just for today I refuse death once more.

Just for today I am wary and angry at the endless pain.

Just for today I will tolerate and accept bone chill.

Just for today I will stand in my wasteland once more.

Just for today I will turn my insides out begging to undo an eternal knot.

Just for today the loneliness encircling me will be allowed.

Just for today I will count each person I love.

Just for today all my fears may inhabit me.

I will add them to Carcinoids, nerve damage, burst discs, dystonia, fibromyalgia and a new, stronger pain with growths not explained by any known condition.

Because come tomorrow…..

In what must be a cosmic joke

held at bay

I will add another oncologist for “sarcoma”.

Life is terminal, cancer may not be my final call.

I will wait until every test is finished.

Diagnosis has been wrong before.

A million things could happen.

In my deepest heart,

Just for today,

Just for all my days,

On and on I will go.

Blessings
Bridget Robertson
*

On And On It Goes.
Mary Chapin Carpenter

“The Calling” Album 2007

Mary Chapin Carpenter, Matt Rollings – producers
Chuck Ainlay – engineer, mixing
Scott Kidd – engineer
Bob Ludwig – mastering

 

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.