It has been about 16 months since my initial cancer diagnosis, which started me and my family on a journey that none of us expected or wanted. It has been about 5 months since I was told that the collective effect of the chemotherapy and the bone marrow transplant had eliminated any signs of cancer from my body, and I was now in complete remission. It has been about 4 months since I finished my last radiation treatment, ending 12 long months of aggressive and unpleasant therapies, all designed to remove the cancer from my system and allow me to continue with my life. My physical battle is complete and I am now able to get on with my "normal" life.
But what I am just now beginning to sense, what I am beginning to find, is that life after cancer is anything but "normal". I can understand and appreciate many of the physical processes and changes that have taken place. I can still feel some of the residual effects of my treatments when I am called upon to physically exert myself. My endurance and stamina are still a long way from "normal"and I am told that the more I exercise and push myself, the quicker will be my recovery. But what is just now beginning to come into focus is the impact that this ordeal has had on my emotional and psychological well being.
Up to this point the primary goal of the medical community, as relates to cancer, has been to find new and better ways to treat cancer, and hopefully eventually find a cure. It has only been recently that they have begun to appreciate and address the need for developing a program to benefit cancer survivors. It is being recognized that after the physical treatment ends, there is a distinct phase of the cancer experience, and those who study cancer survivors have suggested a strategy for the ongoing clinical care of cancer survivors. At the heart of this strategy is a survivorship care plan (SCP), a document that includes details not only about the patient's diagnosis and treatment but also essential information needed for long-term health care. Designed for discussion at the end of treatment, the SCP should include summaries of the key diagnostic and staging results, treatments and dosages received, as well as the potential later effects of those treatments. It should prompt discussion about recurrent and new cancers; genetic implications; possible long-term and late effects; explanation of legal rights affecting employment and insurance; recommendations for nutrition, exercise, lifestyle changes and rehabilitation; and referrals for psychological and support assessments. But because the recognition of this need is so new, most cancer treatment centers do not yet have SCP's in active use.
Unfortunately this whole new field is just now being studied and guidelines developed. That is not much help for someone like me, already designated as a survivor, and beginning to discover areas of need as they develop. Rather reactive in nature, and unfortunately not especially proactive. In my own personal case, I am beginning to sense a feeling of deepening depression setting in. Holly has also detected this (as you would naturally expect she would) and suggests that it could well be a result of the 12+ months of intense emotional stress and strain, the ongoing conscious efforts to stay positive and upbeat (a drain in itself), dealing with the more recent fatigue and who knows what other unseen burdens. I have an appointment shortly with my regular family doctor and will discuss it with him, and will probably ask for a prescription for an antidepressant as an assist.
My fatigue and my depression seem to be the only two latent symptoms that I sense at this point. But in my reading I find a wealth of information about this area of cancer survivorship and many of the other symptoms or side effects, covering such areas as worry, feeling stress, depression and anxiety, anger, feeling alone, religion and spirituality, etc. I am listing a few links here to give anyone interested a place to start.
After Treatment: Developing a Survivorship Care Plan
Survivor Defined
Facing Forward: Life After Cancer Treatment
Cancer survivors: Managing your emotions after cancer treatment
Your Emotions after Treatment
I am adding this post to my blog to acknowledge that life after cancer can, and very probably will, involve previously unseen and unexpected aspects that everyone should be aware of. Being a cancer survivor is wonderful beyond description. But being an informed and aware cancer survivor is even better. God bless.
Oh, Jim,
ReplyDeleteUnfortunately, what you are experiencing is "normal". Some survivors don't suffer as much as others; I suffered greatly and eventually was diagnosed with PTSD. PTSD is becoming more and more acknowledged by the medical community however, you are correct, there hasn't been enough done to prepare us for life after cancer.
I posted my book about my struggle with life after cancer and finding my "new" self on my blog; it is free. The title of my blog book is PTSD and Caner: Lost, alone and afraid.
After my treatment was over, I felt like my treating community left me off at the train station without a dime and I was lost in what to do. It was quite a process for me to find peace, even as a Christian. My book starts on a desperate note and ends in adjusting to and accepting my cancer. It was severe enough where I sought psychological help.
I am here for you should you want to "talk". I looked high and low for anything and anyone to tell me what I was experiencing is normal. By the way, those who have undergone a STC are more likely to have PTSD. Interesting, isn't it? In just reading that, I felt validated.
My heart felt prayers and this too, shall pass -
Cyndi Heath
http://advocateofhope.wordpress.com
My father also had a STC and was cured of two types of leukemia (CML and AML). His first year post-transplant included outbursts of anger, depression, and struggle with identity. The trauma to the body and bombardment of various chemicals impacts every cell in the body, including the brain. I am so glad you are seeking help. An antidepressant combined with time made a huge difference for my dad.
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