The Real Afterwards

/ Holly C Barker

 

July of 2006 my husband was diagnosed with malignant melanoma skin cancer. Based on the oncologist’s discussions with us if he was going to live 6 more months, taking interferon cancer treatment would help him live another 18 months. The doctor was just giving a projection. My heart sank as she spoke her upbeat prediction with a hopeful smile.

As the weeks and months rolled on we went from test to surgery to test to surgery for three years. Every three months was another scan. The building up to the day of testing and the results following were either good or “we saw something and we are just going to watch it for another few months….” became our lives. He endured surgeries to remove moles that appeared to change, painful skin grafts and lymph node biopsies. He started the gruelling interferon treatments about two months after his diagnosis while I was still nursing his surgical sites. Jordon defied the odds. He was one of only five patients at Duke Cancer Center to make it through the twelve months of treatment. He was brave and wanted to finish the treatments for the sake of our son, Jackson. And he outlived the medical communities’ predictions.

During those days my life became dictated by life and death. I rode the waves of test results and doctor visits. That’s exactly what they became, waves of emotions. Unbelievable fear and sadness with intense amounts of love and compassion seeing the love of my life suffer like nothing I had ever experienced before. I took on some of his pain somehow. Somehow I would wake up with his symptoms. I would feel his nausea. There is an intuitive, empathic response we feel when we are close with our loved ones who are suffering.  It’s the prayer we make. “Give it to me, God…  Don’t let him suffer..” And God shares it with you to ease their suffering and you help relieve the one you love of their suffering.

From this empathic response ~ it began to happened.  My health and my mind began to bend and take on the enormous weight of what was before me. A year and a half later I buckled under that traumatic weight. I fell into severe depression, anxiety, and panic from the worry and the seeing and experiencing the trauma of the waves that continued to crash over me.  Just like the ocean. The waves never stopped. This experience turned into anticipatory grief, the trauma of what is to come. What could happen when you put a name to impeding death.

About two years into the waves of tests and scans and Jordon’s pain and suffering from the interferon- I fell apart. My doctor diagnosed me with a mood disorder instead of focusing on the disorder and chaos in my life. I don’t blame her. But now is the time to bring this to light. Anticipatory grief is a real process. It is a real, often misunderstood form of grief. It brought me to my knees and to the open door of a day hospital for psychiatric patients.

I felt out of place. I was stable but completely crushed and defeated by the fear in my heart and I had gotten to a point where I couldn’t stop crying and my emotional plate was full.  My sharing at group during those two weeks was about Jordon and the trauma of seeing him after surgery. Having to work a high level corporate job. Raising a 5 year old boy that couldn’t understand why daddy couldn’t play rough. Maintaining a home. Caring for a very sick husband. All the while keeping it together.

This is the basis of what drives me to help others understand grief in all its facets. Mine is different from yours or from hers or his. We need to re-define and re-adjust our approach to this human experience that we all will go through. The only way you escape grief at some point in your life is if you are the first to go. The time to share openly, honestly, and authentically is now.

Www.griefanonymous.com

50 thoughts on “The Real Afterwards”

  1. The person who came up with the five stages of grief, later said she had made a mistake and not said that the process was not lineal. Everyone has a different way the grieve. You writing is deep and i feel your pain… This too will pass… Peace

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    • Bless you. I’ve been watching my “spirit”!mother be devoured by lung cancer for about a year and a half. Six months into her journey my grandmother who was my# 1 fave.!passed away. I’ve now unit my job, over extended my whole being, given all I had to give and now realize that have been in anticipatory greif mode for over a year. I think I honestly convinced myself that she would never leave me if I made her see (and feel) how loved and needed sheis. She’s in a nursing home now, we did all we could to keep her at home, but I feel like I failed her…. I can’t hardly stomach the sadness I feel when I go to see her. Which is why I don’t go often as I should. I want norhin more than for her to be at peace and without pain . Hardest thing I’ve ever witnessed- not fair

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  3. Thank you for sharing. I never heard of anticipatory grief but I have it. I’m always waiting for the other shoe to drop! I’m so scared.!

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    • Stay with me Rose as I do my best to give this facet of grief the spotlight so that we don’t suffer alone. You’re not going crazy. You have legitimate grief of what could be. I’ve been where you are and not knowing the outcome. Prayers to you.

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  5. I have no doubt there are many, many women who have or are experiencing anticipatory grief. I lived in this state for years ~ the last three of which are a total blur….always wondering if today would be the day. Grief is so very unique to each person ~ and yet there are commonalities as well. Years of hospitalizations, tests and more tests suck the life right out of you. After more than 3 years in palliative care and 4 months of hospice, the gerbil-wheel ceased and I said my last goodbye.

    It has been three years and there are still days that I find myself floundering along this path. The comfort that I have found in my faith has been my sustenance. God Bless you…

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  6. I would like to follow your blog, but I must be having a blond moment and can’t figure out how to.
    When I click on the link that says “Follow Holly C Barker” on the right side of the page, it takes me to WordPress.com, where it asks me to log in or create an account. I don’t have a log in, and when I create a log in, it asks me what kind of website I want to create; I don’t want to create a website, I just want to follow this. I guess I am doing something wrong??

    Loved this blog above. 🙂

    Thanks 🙂

    Tiffany

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  7. Thank you for sharing your story, it reminds me of my own. I went through that as well and now I am in just plain old gut wrenching deep pain grief. Even though I lost the love of my life almost 14 months ago there are days when it feels like yesterday. I have yet to get through a day where I don’t have tears rolling down my face. They say that time heals all wounds..yeah not so far it hasn’t.

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    • The few months after I passed the one year mark were super tough for me too. It’s was the time of the reckoning for me. I began to realize that this was real. The firsts were over and I had to start facing my new reality. It was tough. And I want you to know it can and does get better. The pain of grief will lessen. Grief stays. Pain over time and individually does turn from a raging fire into a flame. And that flame will never go out. And it’s still enough to fill a room with warmth. And you will then begin to feel that warmth and from that warmth you will feel the love and gain the wisdom of your experience. And you will never forget, nor should you but life will move forward and hopefully when you feel ready, start taking some baby steps. Slowly. Use the Tenets as a guide. They helped me. And why not try? They could help you too.

      Hang in there. ❤️

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      • I’m feeling the same as you.My husband has been gone 18 months some days it feels like it just happened.Yesterday was our 35 the Wedding Anniversary. Some days its all I can do to function.You can’t just share this with anyone. They don’t understand. We had children later in life so I have two children to raise its very hard. I feel like I don’t have support. Trying to trust GOD but some days I feel like I can’t go on.

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      • You can go on and with two children you must for them as well as yourself. I understand not being able to function and I am so sorry you’re going through this. Baby steps. One day at a time. Down the road the pain of grief does lessen and children grow up and you are and will be very very wise to this world we live in. You do have that to look forward to.

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  8. My husband had severe heart disease and his cardiologist said he wouldn’t live past the age of 55. He passed away 9 days before his 66th birthday. It’s been 3 years and I still struggle with his loss. Thank you for sharing your story. I feel less lost.

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  9. Thank you for this Holly, I too am watching my husband struggle with Stage 4 Renal Cell Carcinoma. So far he has bravely fought for over 3 years, endured the pain and side effects of chemo , radiation and immunotherapy . He has even astounded his Drs. How he fights on is beyond me. Don’t think I would be as brave.
    Will agree the depression is real and fight it all the time.

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  10. Thank you Holly for putting a name and reasonable explanation to my experience also. My 3 year, pre-loss struggle during my husband’s battle with cancer was such a difficult journey…watching his struggle, a couple of surgeries, a different prognosis every 6 months, all the while trying to ‘protect’ his parents and our daughters from the most awful of details we were dealing with and attempting to run my husband’s business by myself. The 9 years since we’ve lost him have been difficult at times, but nothing like my nightmare just prior to his death.

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  11. I lost my husband 18 months ago with the same diagnosis as your husband. As a matter of fact he also did the interferon treatment, although they suspended his home treatments as the cancer had advanced so rapidly. It is so helpful to hear others talk of how long the grief period may last. It seems to me that the second year has been more difficult than the first. I feel like I have done a good job and staying on track, but this year I do catch myself not having much of a drive to get things done like I have in the past. I am working on that aspect of my life. I went from being a fulltime caregiver to having 24 hours a day to myself, that in itself is a big adjustment. Thank you for walking us through the reality of grieving.

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    • You’re welcome and thank you for responding with your story. The more we share these stories the more people understand and can feel that they are not alone in this journey before, during, and after. You’re helping me too.

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    • I also lost my husband in August to melanoma. Interferon, 3 month PET scans and then targeted gene therapy. I went from living around his schedule to having 24 hours alone. Every day is hard. Thank God for his many blessings. I am still making through one day at a time. It’s helpful to know that I’m not doing it alone

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  12. Holly,
    I’m so sorry for your loss and thankful that you shared your story. We did not experience as long a period of anticipatory grief, but we experienced it none the less. Our 18 year old son was diagnosed with acute lymphoblastic t-cell lymphoma. The first four month treatment was hard but he was doing well and his scans were clean. A week after he graduated from high school he had a scan before the next phase of treatment and it came up positive. We now had to get him free of disease before a bone marrow transplant. We went to Denver to see the specialist about the transplant. While listening to the doctor I knew, I felt it deep in my gut, that we would never be back for the transplant. I never told him and we kept fighting until they came in one evening (they always bring bad news at the end of the day, and they never come alone), and told us there was nothing left. That was a month after Denver. Less than a month later he was gone. I was afraid to speak of anticipatory grief, because it felt like giving up, but it was there. You had such a long experience, ours was a matter of weeks. In either case the pain is very real. I wish you peace. Thank you for sharing.
    Rod

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    • Yes – timing doesn’t matter. Weeks or days or months or years. I’m so sorry you lost your son. Thank you for telling your story. We need to bring more awareness to this subject so that others may feel they are not alone in their struggle.

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  13. For me, I experienced the sudden death of my husband..one minute he was there,the next he was not. There was no preparation…I experience anticipatory grief, at every birthday, death anniverary, Chrsitmas, birthday, wedding, graduation that thas occured since his death. Leading up to the important family event, I cry at a moments notice, feel down, feel up, feel every little thing…leading up to the actual date of the event…it is miserable and I fear the actual event…but I have learned that the aniticipatory grief, helps me to process the date, and when the event occurs, it is not as hard or difficult emotinally as I had thought it would be. The anticipation, the time before, has helped me be prepared for the event so that when it comes, I can react more calmly, more fully and without too much unexpected drama. So, for me, anticipatory grief – while it is difficult at the time – is helpful when the time comes. Don’t be afraid to feel ‘all the feels’ as the kids say! it really helps.

    c

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  14. Thank you for acknowledging the fact of anticipatory grief. My husband was ill with an aggressive prostate cancer for ten years, but we knew it was terminal at the time of diagnosis. If anything, for me the period before his death was more awful than afterwards. Crying jags, bouts of illness, depression, anger, weird injuries–for me, it was one thing after the other, especially in his final two years. He suffered terribly and it was a relief and a blessing when it came to an end. There, I’ve said it. Of course I will grieve for the rest of my life, but I will go on.

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    • Yes! Glad you said it. And you are not alone. The effects of anticipatory grief were far worse for me. The cloud of not knowing and the pain and trauma of it all were crippling to me. This doesn’t lessen our grief and sadness over our loss. It just needs acknowledgement. And we need to reach out to the medical community, government, and society as a whole to help bring awareness to this reality. Caregivers suffer in silence.

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  15. I am so sorry for your loss. I suppose that I actually never had even thought about grief until last year. I didn’t even have time to anticipate grief. My husband was diagnosed with a VERY rare brain disease and we were told, “there is no treatment, there is no cure and it will be rapid.” Our home was prepared for hospice while we were in the hospital. We came home and eight weeks later he passed away. We had no time to think of grief. In those eight weeks he lost his ability to stand, to walk, to talk, to see and to eat. I have three married children in their 30’s and ten beautiful grandchildren. People in my community don’t even know how to communicate with me now and most don’t even try. This grief has affected my children in very different ways. Losing my husband during those eight weeks was hard – everyday brought new challenges. GRIEF has been an enemy that I have tried to embrace only to find that by embracing it, I have almost lost myself. October will be a year and I hope to find the “new me.” My strong FAITH has been my biggest friend.

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    • Oh Emily! I am so sorry for what happened to you. And just to share that experience to let you know I understand- my husband’s second diagnosis (after 8 years from the first one), lasted only 6 weeks. We had only six weeks from terminal diagnosis to his passing. And in those six weeks was all that you described. And then the after effects with your community. It boggles my mind. And I will try my hardest to in my life time to figure out why and do my best to change reactions. Reach across and help people understand their own reactions and why. And if I can’t make an impact there- at least bring people who are grieving together so that we will support one another. Good you have your faith. It makes life easier and more understandable.

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  16. My anticipatory grief stage went the opposite way. I became a rock. My friends and family all thought I was amazing. I was strong as hell, but the down side is I choked down emotions 99% of the time. In truth, I felt like I was dying, too. I don’t think anyone saw that. I was outside of myself through the waves. (You described that really well.) There were so many things I wish I said. I wish I had showed him more of what I was feeling instead of always trying to be strong and positive. He only lasted 6 months after diagnosis. Had he lasted as long as your husband, I feel sure I would have broken. Before going through this, I felt bad for others in similar situations, but I didn’t truly get it. I don’t think anyone can possibly understand how truly hard it is unless they’ve been through it. Whoever said you had a “mood disorder” should be sent back into training. It’s been about 15 months since he died. I “appear” to be doing well, but I don’t recognize myself anymore.

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    • So honest and beautiful your words are. And actually- I was a lot like you too. I grabbed the helm. Did well at work. Stayed strong outwardly. And I also cried in my bathroom all the time. I was on a lot of medicine. And I would dress for work and change once I got to the day hospital so no one would know. It was ridiculous. But it wasn’t sustainable. So yes I understand!

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  17. Just read this blog entry the day before we are heading to the oncologist to change treatment for my husband whose multiple myeloma is turning active again. He was diagnosed a year ago and had a autologous stem cell transplant in February that didn’t last. MM is an incurable, but treatable, terminal cancer of the plasma cells.

    This is not our first “rodeo”. He, like your dear husband, was diagnosed with malignant melanoma in 1985. It had spread to his lymph nodes and he was given the “get your affairs in order” talk. However, the major cancer center where he had his surgery had some early immunotherapy trials one of which he was able to participate in. It worked.

    Two years ago he was diagnosed with prostate cancer, very early stage, requiring just surveillance. Last July, this ugly disease reared its head just four months after my 96 yo mother died who lived with us for the previous 8 years. I was her caregiver, and now his.

    I, too, have been a rock. I worked in the medical field and learned over the years how to deal with illness and grief. I hate to see him going through this pain and wild roller coaster ride. Now that his disease is active again I find myself thinking about the time after he is gone. Yes, anticipatory grief is the devil.

    We have no children, only his brother and his family. My best friend has severe lung disease and is on the transplant list so she has her own problems of life and survival.

    It’s strange. I have yet to cry about my mother or my husband. Guess it will happen some day. Meanwhile, I will push on.

    Peace and blessing to everyone.

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    • The year my husband was diagnosed I had my best career year ever. We become who we really are when we are tested at this level. But we are also completely human and this challenge such as yours and mine can bring us to the heights of our abilities to cope and adapt and be caregivers and it can swing us as low as it gets from a human emotion experience. Allow yourself all of it. You seem wise and able. And I very much appreciate your input and your sharing with others this experience that is too much in the shadows. And people like you can truly help shed light on this subject. So thank you.

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  18. I have been down this road many times now and it is a grinding and wearing down kind of hard. My mother lived 8 years beyond her cancer diagnosis when I was in my 20’s. She had recurrences every year so we lived with the constant “anticipation” of her loss. My Dad was a pastor and we had wonderful support from our church family but her illness was lived out in a very public platform! Then over the years, I have lived through cancer diagnoses of my husband, myself and my Dad. Each of those shapes and changes your worldview and life-view! I tend to fall apart when things slow down and have had to learn to anticipate that and plan for that.

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  19. It’s amazing that this showed up today. My Mom passed on Saturday. She has lived with me and my son for 6 years, 44 months battling lung cancer spreading throughout her body. I have been in the grief process for almost 4 years and we haven’t even buried her yet. And even though we knew she would eventually succumb to this, I was still blind sighted when the biopsy 12 days ago had complications resulting in her being on a ventilator for 10 days. Days that I don’t wish on my worst enemy. Now I find myself replaying the script of the last 4 years and all the times I was short tempered, or too tired or not wanting to wait with her in another doctors appointment. The road ahead will be tough but nothing compares to watching someone you love die slowly in front of you. Yes anticipatory grief sucks!

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  21. I am also on the path of grief after losing my husband and business partner of 35 years in March. The mental, physical and psychological changes are unanticipated. When I tell my story, I often wonder if people think that I am insane. Those closest to me have abandoned me and told me that “people get tired of hearing your story” and “you make people uncomfortable and you need to grieve in private”. Those are just a few. I have determined that this journey is mine alone and I will do it as I need to. Do not need approval or permission. I write my husband letters. It helps me and I would love to share them with you. Larryandme.net

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    • That’s exactly what you should do! Write it out! Finding a creative outlet for your grief is one of the most therapeutic ways of coping with loss. Also- join us online so you don’t feel so isolated and abandoned- which you have been and that is typical of so many people who are grieving.

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