It was an ordinary, sunny Sunday in January just over five years ago that would change our lives forever. . .
On a walk with Christine Huda, NICABM’s Executive Director and my long-time partner, we were discussing the fact that she’d been having trouble talking recently.
“You’ll see your physician tomorrow,” was my response.
The working hypothesis became a minor stroke but an MRI was ordered while her physician took on the job of talking Christine out of attending the 11 day Vipassana retreat she’d had planned.
I should stop for a moment and tell you that Chris was a nurse. As we sat in the car two days later, she pointed immediately to a huge tumor in her brain on the barely-dry X-rays that we received after her MRI. Even I, a psychologist with no experience in reading brain scans, could tell that this wouldn’t be good.
She was admitted to a major hospital in Hartford for more tests. The following morning, just before 7 AM, her attending neurologist told her she most likely had stage-4 brain cancer (gliolblastoma).
In a previous blog, I brought up the issue of the trauma-inducing effect of hearing that you or a loved one has a diagnosis of cancer. This was certainly true for Christine.
During the subsequent months of treatment, her conversation often went back to that scary first day. She described what to me sounded like flashbacks – vivid, intrusive images of this doctor standing over her telling her life would never be the same while she lay alone in a hospital bed.
It’s too easy to blame a doctor when getting a bad diagnosis, but might there have been more he could have done to treat the whole patient?
Not just the diagnosis and the upcoming course of surgery and treatment he was recommending but also her soul and mind? Perhaps even just waiting long enough to be sure a loved one was present while he delivered what would be a life-changing message.
We think of PTSD in terms of combat, rape, violence, even auto accidents. But I would encourage us to also consider it a possibility when treating cancer patients or survivors of heart attacks.
NICABM has created several series for the treatment of traumas stemming from all kinds of sources.
We’ve featured experts discussing innovations in treating trauma that you will be able to apply directly to your own work.
Meanwhile, leave a comment and tell us your thoughts – have you seen PTSD co-occurring with serious medical diagnosis?
I must say that I do enjoy the way you have framed this concern. Keep the posts flowing 🙂
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Thank you, Ruth, for sharing with us your personal experience with us and relating it to trauma. You have my sincere sympathy for your loss.
Your blog, as well as Dr. Scaer’s presentation could not have been more timely for me. I have been undergoing stage 4 cancer treatment for the past 10 months. I accepted the diagnosis with equanimity, but it became apparent later, of its effect on my attitude and stamina in subsequent weeks. I must say that in my case, the trauma related to receiving the diagnosis was just one traumatic incident. Meeting with doctors, some more compassionate than others, undergoing treatment and side effects were extremely challenging. The outcome of treatment was successful beyond the expectations of my oncologist, leaving him suspicious, so that he ordered further tests. This resulted in discovery of metastasis, which existed even before the diagnosis, but had not been detected. From there, the diagnosis went from Stage 3 to Stage 4–another trauma. I underwent two surgical procedures, which were also traumatic. At that point, my initial bit of dissatisfaction with my oncologist increased in proportion to the increase in his emotional distance and lack of care. I found another oncologist, who is very bright, attentive, caring and takes time to explain complicated medical issues in ways that are understandable, without talking down to me. I have much trust in him. He has me on treatment which involves 12 chemotherapy treatments, of which I have completed 9. I had a CT scan last week, the outcome of which I must say has left me in a state of awe–all traces of cancer gone. Needless to say, my oncologist was very pleased and we shared a special moment, of feeling very connected to, and appreciative of each other.
Back to the issue of trauma, I attribute the success of my treatment, not only to my very special relationship with my oncologist. I have been working with a psychologist, whom I sought when I was initially diagnosed. His approach is based on healing the mind to heal the body–that the body is subject to what is in the mind. His work combines supportive therapy with Energy Psychology in a spiritual context. I have had experience with several therapists in the past, who were not successful in helping me resolve a childhood traumatic event, which resulted in a chronic sense of emptiness. This fits with what is known today of the effects of unresolved trauma on health. My current therapy successfully healed the original trauma, along with those related to the diagnosis and ongoing medical treatments. I have also returned to my spiritual practice and am engaging in prayer and meditation on a daily basis.
Today, my heart is full of gratitude, peace and joy, and I live life with a renewed state of mind and spirit. I am preparing myself to return to my psychotherapy practice, hopefully in a few months. There is much for me to learn in the way of neurobiology as well as improve my skills in EFT and EMDR. Whereas in the past I suffered from chronic emptiness, I can sincerely say that, even prior to receiving the positive CT scan report, I had been experiencing a fullness in my being and a gradual and progressive deepening of gratitude, peace and joy. I am still challenged by my treatment, which will continue over the next 2 months, and I live with the lingering possibility of recurrence. I believe that, should that occur, it will be a sign of any trauma or painful emotion which has remained unconscious. Thankfully, the ever expanding knowledge now available for treating trauma is now available. At this time, however, of primary significance is the healing of my body, mind and soul, which I attribute with gratitude to a caring and skilled oncologist, the developing field of neurobiology, energy psychology, those experts who do the work and bring their experiences and discoveries to others, and a highly skilled, compassionate and spiritually oriented therapist, who employed these new approaches in our work.
Thank you for your wonderful work. I appreciate your courage to bring your personal experience to the benefit of thousands of participants. It is exciting to witness the rapid expansion of knowledge and healing.
Ruth thanks for your valuable /painful xperiance and loss with us .
As dr.Benor points out this is going to be a major issue for this generation . His advise is very valuable too .I appreciate all other comments will be happy to continue this dialoug at paduvala @ aol.com
Namaste
I have come to believe that trauma’s come in all sizes and happen in all kinds of places where we don’t necessarily expect them and at times that are surprising as well.
I have come to think that often our lives are made up of lots of little traumas along the way that we do not identify as such and so do not treat them with the respect and sensitivity they deserve. And, they can haunt us for a long time because of this.
The trauma of a diagnosis is real. I remember well being with my husband when he received his MS diagnosis. I felt like I had been beaten up, both physically and mentally. I felt traumatized. I felt the shock and the reverberations from the shock.
Sometimes there is simply no way around the trauma. And there are ways we can help people more effectively work with trauma and move thru them.
Thank you for bringing this up.
I appreciate your sharing your story, your candor.
And, I am sorry for your loss.
Ruth, this is an important topic you have raised in your blog and one that is greatly misunderstood. Trauma,and PTSD, come is all sizes and shapes. We have become too accustomed to the idea that only complex trauma earns the recognition of PTSD. One outcome of this thinking is the belief that we need not be careful or sensitive with our words. Many of us still carry around as true the school yard reprise: “Sticks and stones will break our bones but names (even diagnoses now) will never hurt us”. The unstated follow up belief becomes:”And they shouldn’t hurt you either”. A little time, kindness and willing to listen to whatever feelings emerge as the result of a diagnosis offers healing of a different but necessary sort.
It is hard to say goodbye to someone we love when they leave, and especially so when they die. Our perception that the deceased person is “gone” because we can’t see them or hear their voice, even though I believe we do still feel their presence and communicate in a new way. Is this traumatic because we feel helpless?
If trauma is feeling helpless in a situation, whether an undesirable diagnosis or violent attack, then empowerment is the antidote. We need to learn new ways to perceive reality.
When I say, “I lost my brother to death.” [which I did last December the day before his 66th birthday] I imply that he was mine in the first place. He did not belong to me in the first place. His journey was his. Love to overcome the sadness of parting due to death. The reality is that death is as natural as birth, but we don’t like to think of it that way. Perhaps we need to do so if only to reduce the traumatic effect.
The bad news: Diagnosis Shock is far too common. This is why it is really helpful to bring someone supportive with you when you go to see the doctor. See article on this – Diagnosis Shock: The Unrecognized Burden of Illness by Judith A. Swack, PhD, in the International Journal of Healing and Caring – on line. The good news: There are easily learned, rapidly and deeply effective methods for dealing with diagnosis shock and other issues on the too often rocky road of cancer care. See for instance WHEE: Whole Health – Easily and Effectively.
Ruth,
Thank you for sharing your story. I was so saddened to hear of your loss. I firmly believe these types of honest conversations make us better health care providers and better humans for that matter.
I nearly “came undone” when I heard my mother had breast cancer 6 years ago. She’s doing fine today, thank God. The prognosis was always cautiously optimistic but even the mere suggestion of losing her and seeing her go through treatments struck a fear so deep in me that I have had to work through it as a trauma experience. And I know, although she acts bulletproof, it has affected her as well.
Thanks again for opening up such an important dialogue.
Thank you for opening this discussion. I have certainly experienced symptoms of trauma following a surgical procedure to repair my leaking mitral valve. The symptoms involved my GI tract and were not well understood by me or others as linked to my fear around the heart surgery and recovery. In the 18 years following I’ve studied and practiced tools of Somatic Experiencing. Most recently such tools were very helpful to me as I was in recovery room following a very successful 6 hour cordio-ablation procedure.
Gretchen Williams,
Boulder, Colorado
Having been diagnosed with PTSD myself, a few years ago, and woriking in a trauma treatment environment, I can say I am grateful for these seminars. I wonder if this happens with people diagnosed with degenerative diseases such as MS and ALS?
Thank you for sharing your experience. It seems many of us have had these experiences on a personal level and therefore gives us first hand knowledge of how traumatic these events can become. I am a cancer survivor and have heard firsthand those words “you have cancer”, “there are no guarantees you will survive”, etc. I did survive! However, my mother was diagnosed with cancer 6 months after my treatments were over, and I started the whole process over again with her. It was devastating to watch my elderly mother experience what she had to endure as she had several re-occurances which did lead to her death.
I did listen to the teleseminar yesterday and I can see how it does go right along with what you have shared, along with others who have had similar experiences.
I am only in the beginning phases of learning about SE and the mind/body connection. Thank you all for your valuable input in regards to trauma and its effects, but most important, in how we can better serve our clients in their journey to find healing
Anything that threatens our survival, or the survival of one we love, is traumatizing and depending on how the news is delivered, can also be shocking. The shocking aspect, that jolt of adrenaline, that kick in the gut sickening feeling that pulls the rug out from under us, needs to be treated and the body/mind rebalanced as soon as possible after it occurs. “I could die from this,” or “they’re going to die from this” or of course the news that a loved one has died, must be treated and the shock released from the body/mind. If it isn’t it can linger and morph into other problems such as are seen in PTSD realm, as well as things like migraines, chronic anger, anxiety leading to addictions and many other issues. In my own experience, 3 days after my mother’s funeral when I was 39, a doctor called to tell me the mole she removed was melanoma. I said, “Am I going to die?” She said, “I don’t know” and promptly hung up and left on a 4-day weekend. I went into shock. A few years later when I began to learn the energy psychology therapies, a teacher removed the shock imprint that had been inscribed on my brain with an NLP technique I still use in my practice today. If anyone wants a copy of it, email me with “collapsing pathway” in the subject line. erasePTSD@aol.com.
Ruth, your story and your partner’s story touched me. I’m sorry to hear of your loss and the pain you both must have suffered through her illness. I know there is much more we as practitioners and human beings can do to alleviate suffering and be with each other. Thank you for giving your personal example of the effects of neglecting to connect and the possibility for reducing traumatic response.
Thank you Ruth. Your discussion with Bob Scaer yesterday led towards this too and it is so valuable. You’re adding another dimension to the receiving of bad news and of grief that could really help with treatment considerations and understanding of problems that develop later or don’t go away.
I also picked up in Bob’s sharing that accumulating traumas, especially if not released well, can make a person increasingly vulnerable. Being witness to trauma and trauma reactions as many medical and related professionals are (veterinary staff too) would probably come into this repeat effect category.
Another thing Bob talked of was the extra vulnerability to trauma that those with childhood bonding issues seem to have. I’m speculating that these might not appear until a certain level of ‘trauma’ overload is reached in the course of that person’s lifetime.
I’m talking of personal experience here too. Since I suspect now that my own father’s untimely death at 57 from cancer, triggered in me that latent effect. I had a very difficult birth but a safe a and loving childhood and young adulthood. Every death or threat of this since his death 20 years ago has been harder to process.
The last one left me with recurring dreams (flashbacks of a sort since they relate to the situation and are obviously still working with unresolved factors) that have not ceased in three years now. Although I am safe and outwardly quite functional, I have been unable to encounter the person or visit the place involved.
So, thank you for the clues. Those of us who have noticed and personally experienced these kinds of things can I think be the best advocates and messengers of their importance, also seekers of ways to mitigate the consequences. Your wonderful open series here is a great step in encouraging that.
I was completely traumatized when after a colonoscopy, the GI sat my husband and I down, and said “You have cancer”, which of course I had clearly heard, but apparently he felt needed repeating, so he said “You have cancer” again. At which point, in my mind, I saw myself stand up, lunge across the desk, and slap him, and say “I heard you the first damn time!” Instead I calmly said, “Not for long, so what are we going to do to change that?” Mind you, I had been misdiagnosed by 12 different doctors and specialists by this point. Prescribed Prozac, because my mother had died, which I didn’t take, aren’t you supposed to grieve when someone dies? It was actually a psychiatrist who helped me in the end. I went to him and said, “I think it must be that I am really crazy, no one can find anything wrong, but I’m anemic and have low grade fevers”. He told me I was the least depressed person he had ever had in his office and to go out there and fire the doctors yet again and find someone to help me. It’s been 10 years and I called him a few years ago to thank him for saving my life!
Dear Ruth, I had the good fortune to know Chris. She was such a lovely woman. My daughter was diagnosed with non-hodgkins lymphoma and was told rather harshly that she would have to start treatment right away. Her level of stress was so high that she started having panic attacks. I convinced her to get a second opinion here in Boston and we went to Dana Farber where compassion was woven throughout everything from test to talks with the doctor. Her physician recommended watchful waiting and after three years she still has had no chemo. We do not know what the future holds for her condition, but we do know that how a patient and their family is treated has much to do with how they feel about their journey. Thank you for all you do. Loretta Laroche
I totally agree with the premise that diagnosis creates trauma. It may not matter how it is delivered.
As a widow of almost 5 years now, I have watched first hand, as you have, the impact of a terminal cancer diagnosis on someone I loved very dearly. I was with my husband when he received the diagnosis; the ‘you are intelligent people, you know what this means’ speech from the oncologist. My husband was a Vietnam Vet who already struggled with PTSD issues, this layer of trauma as well as the physiological changes that occur when the body/brain no longer functions as designed created quite a ride for him for his last few months of life. (dx May -died August)
As a therapist, I have seen the impact of open heart surgery, and near fatal heart attacks on personality and behaviour. Explaining those reactions as a trauma response seems totally reasonable in light of what we know now about PTSD.
I would also conjecture here, that being the spouse/partner and subsequently widow/er of the above can also lead to a PTSD like state.
Since my husband died, I have had the occasion to follow the paths of many other younger widow/ers whose partners were dx with terminal cancer ( as well as auto accidents, suicide, murder, sudden heart attacks, strokes etc) and I see similar issues with flashbacks, and much difficulty integrating this event (be it diagnosis or death) and the moments leading up to it. One might think the symptoms would be ‘normal grief’ (what ever that is!) but what I see and hear is that the flashbacks, isolation, hyper-arousal, disturbing dreams, and being ‘stuck in that moment’ are quite common in younger widow/ers where the death is not in the ‘natural order of things’- ie their spouses weren’t 80 and died, they were 20,30.40 and left children or the hope of children behind as well as the future of a relationship that will never happen. Again, to reiterate, I hear this from widow/ers of cancer and they flash back to diagnosis as well as the dying issues.
Grieving a young death, untimely death, can create symptoms not only of grief, but “vivid, intrusive” PTSD symptoms that are over looked in the treatment room as well as social convention and research.
Thank you for letting us in to your private moments. We have to tell those stories, so others can hear and learn without having to experience this for themselves. If your story can help one oncology or hospice team, and my story can help one therapist sitting across from a young widow/er think ‘trauma’ instead of just ‘grief’ or ‘depression’…then I say it is worth the ‘flashbacks’ and a few tears to tell it.
Namaste
I had the wonderful experience to have an exceptionally sensitive oncologist-hematologist who was treating my father. I was at a seminar when this physician worked with me to coordinate a time I could be present when the medical staff told my father there was nothing more they could do for him medically but to make him “comfortable.” Although the hours that followed were difficult as my dad told me his wishes for his funeral & expressed anger at other team members present whom he perceived to be there to learn “how to tell someone he is dying.” My dad was always a sensitive, compassionate man. Before that day, I had difficulty watching as my mother & brother colluded with the oncologist who diagnosed my father, obviously in a physical decline, as “depressed” and ordered another “root beer float.” Family systems stuff aside, there is a need to treat the whole patient. I know because I was there.