PTCD

This was written by my BFF Lisa Frost.

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PTSD, Post traumatic stress disorder is something we all think of when talking about veterans that fought in battle or being victim of a life-threatening crime.  Obviously fighting in battle is a huge stress on a person’s mental well-being, but PTSD is a term that can also be used to describe the aftermath of an experience with cancer as well.  A good cancer buddy of mine and I refer to our personal “syndromes” as PTCD or Post traumatic cancer disorder. We felt guilty putting ourselves in that same category as war veterans and victims of crime.  Looking more closely at it though, I am not sure why we would feel guilty about it. Cancer is a life-threatening illness, it definitely messes with your head, not to mention your body and state of well-being. I have a friend that started chemotherapy a year before I did and is still going through it now, a year after I have finished. The things that her poor body has had to endure in order to stay with us on this planet makes my head spin just thinking about it. I am amazed at all that the human body can tolerate and still function.  PTSD after living with cancer makes perfect sense to me.

You get diagnosed with cancer, you have surgeries (7 for myself) some successful some not so much. You have a port placed (yet another scar), breasts removed, ovaries removed, 20 weeks of chemotherapy, 7 weeks of radiation, 5-10 years of hormonal therapy, and a lifetime of lymphedema issues, just to mention a few. When all is said and done people see you “living” and they think that everything is fine. You are excited to be finished with treatment and to get on with your life. You think that it is all behind you, but then you start having dizzy spells. You have never had these before and suddenly you think, is it back? Did the cancer come back and now it is in my brain? The fear creeps in slowly, you start looking up the symptoms of brain mets on the computer and the symptoms you have match. By the end of the day you have yourself dead and buried. You can’t sleep that night because your mind won’t stop playing over the scenarios of telling your children that their mother is going to be sick again, the things you will miss in their lives when you are not there. The fear that your poor husband will have to pick up the pieces all over again and how can he possibly handle all of this so soon?  The next day you make an appointment with your oncologist to discuss the symptoms you are having and before you know it you are getting an MRI of your brain to rule out brain mets. The MRI is negative! You can breathe again. You have escaped recurrence… until next time. A month later you start having pain in your shoulder, the same side that your cancer was on. The steps repeat themselves. You are back on the computer looking up the symptoms of bone mets. It doesn’t help that a friend of yours that also had breast cancer has had a recurrence recently in their bone. Your cancer was the same is theirs. The mind games begins all over again.

I am not a hypochondriac by any means.  Before I had cancer I was rarely sick with anything, even when my kids were sick. I had never been to the emergency room, never had been hospitalized, and never had surgery. When I was first diagnosed with breast cancer I really thought it was a joke. I had no symptoms and felt terrific, even though my tumor filled half of my breast and 24 lymph nodes had cancer in them. I am a nurse and I still didn’t believe that it could be true.  Now, 2 years later, every new ache and pain that I have is the cancer coming back. I am an optimist by nature. When my surgeon told me that I had a 50% chance of recurrence the numbers meant nothing to me. I didn’t focus on the statistics. I am a glass half full person, to me that also meant that I had a 50% chance of it NOT recurring. Now after being thrown into early menopause and having my body deprived of pretty much all circulating estrogen I feel a lot older very quickly. Aches and pains are a part of the normal aging process. These days it is hard to know what is normal and what isn’t after all of the trauma that my body has been through. I remember texting a fellow breast cancer friend while waiting in the office for my oncologist appointment. I was feeling silly for being there. I asked her if she experienced these same issues after she was done with treatment. This was my first time being paranoid. Her response literally made me laugh out loud in the waiting room because I knew that she wasn’t lying. She said, YES, of course she did. Initially every day, then every week, then every month for the first year. I didn’t feel so bad after reading her response. This is a very normal fear for those of us that have had a life-threatening illness.

When I think of what helps me the most with my PTSD is sharing my fears with all of the incredible survivors that I have come to know through the internet, social media, support groups, friends of friends, etc. There are so many of us out there that have been through this and know exactly what the fear is all about. Support and a shoulder are huge for me. I know a lot of survivors that feel the same way. We help talk each other down from the ledge so to speak.  Like any other negative stress in your life healthy diet, exercise, deep breathing, meditation/prayer, great music, and wonderful family/friends are always helpful in dealing with PTSD after cancer. Some degree of PTSD is normal for all of us after finishing cancer treatment, but if it starts to effect your ability to function on a daily basis then it is time to seek help professionally.

Posted on May 3, 2018 .