PTSD/ totally have it!

B... The media touts all the "cures" for cancer, but realistically there is no cure. Unlike something like bronchitis where you take medicine and it's "cured" and gone, no one who has gone through cancer treatments can say they have been cured. It CAN come back. So we have to learn to live with that prospect, but not let the fear of recurrence define us. Life after cancer will never be the same. We have constant reminders (pain and disfigurement to name two). We have lost our innocents.

I did four months of TCH chemo followed by 9 months of Herceptin, bilateral mastectomy (no reconstruction) and the full course of radiation. After a year I am NED (no evidence of disease). I know I'm not "cured", but  the NED  diagnosis is the next best thing.

I've had one full year of loving support from doctors, nurses, technicians, family and friends all encouraging me, celebrating good blood markers and pathology reports. My life revolved around doctor appointments and treatments. Then I was "cut loose" from all that and it is scary. I was left with a great deal of pain and periphal neuropathy, chemo brain and other subtile side effects from chemo, surgery and radiation that "civilians" don't know about or understand. I may be NED, but I still have to deal with the residual (hidden) effects of cancer. Yesterday I went to see my loving oncologist to discuss my physical symptoms and growing depression. She explained a lot PTSD and assured me that it is perfectly NORMAL for some women. (How reassuring that news was!) She prescribed meds for nerve pain (Neurontin) and an antidepressent (Lexapro).

She said the hardest part is dealing with family and friends. They have put their lives on hold for you for the duration of your treatment. They celebrate your NED diagnosis with you then expect you to return to "normal". They really don't want to hear about your residual symptoms, they think you are "cured",,,get on with life. She suggests when they inquire that I just say "I'm in remission and I'm doing pretty good. I am a survivor!"

My oncologist gave me a book, "After Breast Cancer - Answers to the Questions You're Afraid to Ask" by Musa Mayer. In reading it, I find myself discribed all over the place. I am not alone! Neither are you.

Oh sweetie, you are SO not alone in your thinking and swampy gets a big ditto from me. But do get some Blood work done ASAP and rule out physical stuff like anemia. As to attitude, I am not a member of the "pink ribbon club" and boil at the comments that if "If I only have or get the right attitude, the cancer won't (can't come back.)" BS! I have only met three women who have not had it come back and they were caught Stage one and had radical mastectomies in the day when that was what they did. Other than that, there is no cure for cancer-my studied belief. And yes, I do not know of one person who is not suffering from PTSD, post diagnosis and treatment. I am a recovering alcholic with 22 years sober and 9 months out of surgery and one chemo (I am allergic to chemo) I am still a basket case. And I have enormous coping skills and great support in AA. The chemo blew out my thyroid function and they canot stabilize my thyroid meds. So I am having major emotional and physical problems. I have flashbacks and constant nightmares. I, too, am convinced (absolutely sure) that the cancer will come back and that I will die from it. I am supposedly in "remission after surgery but I am one of the rare women who cannot live without my body needing Prempro-so now they want to due a double mastectomy to prevent BC from coming back-theory no breast tissue, no BC. yet two women I have met had it come back in the muscle under the incisions. They got clear margins in surgery and no lymph node involvement-but I have IDC and if one cancer cell is floating around, I know (and was told by onc) I am likely done for. The diagnostics of the tumor I had is that it returns in the bones or the lungs, not the breast. I have made an "advanced directive" and I declared myself a DNR (do not recusitate). If the cancer  does some back, i will do nothing for it but simply pass on. I cannot live under the kind of fear that cancer has left me with and "i am a retired clinician."  My psych meds stopped working after one chemo (CT combo). And dearest, please know that psych meds don't work if you are drinking. Right now, (for real) I am looking at going into a trauma psych ward like Sheppard Pratt in MD to process all of the devastation that I have been thru for 9 months. That includes the physical, mental and social SE's of cancer treatment and the true need for me to treat the PTSD. And to deal with my family's "Pollyanna" attitude. Three docs have given me a 40-50% chance of return of cancer and my family insists i will be in the 50% that will couragously battle and win this fight. What fight? I need to live in some kind of peace. Much of my fear comes from being a hospice caregiver and watching so many cancer deaths. And looking at the lengths people will go to to try to stay alive-that is a terrible judgement by me, but it is a truthful one for me. I do not suffer well and certainly do not intend to do it ruled by cancer. I applaud women who have attitudes that are the opposite of mine-i mean completely opposite attitudes and I wish I had their brains. I have had enormous SE's from the chemo (CT combo and damn near died then). But I am packing the most into each day that I can get out and function. Today I was in our island's weekly ocean sailing regatta and it was magical and transforming for me, so I look to those experiences for hope and joy but it is one day at a time. Since chemo, I am not allowed in the sun and the heat clocks me. I can be on the couch for days on end if I overdo it and my mood is all over the place! My thyroid is blown; I am on 50,000 units of Vitamin D bec my body stopped producing it; I have perniscious anemia; I am on B-12 shots and my BP won't stabilize. I dehydrate at the drop of a hat and have to get liters pump into me about twice a month now. My hair has barely grown back (like one inch) in 9 months and I have gained a ton of weight. I am working hard NOT to wallow on the pity pot, but with a true diagnosis of PTSD (which I have now) this is something that will not go away and may never go away with or without treatment. I am accepting of this condition bec three oncs have told me pretty much the same thing. So my prayers and blessings are with you and I pray that you will find some serenity in all of this. lots of hugs, SV