Post Breast Cancer Folks Like Me

Funny little thing about breast cancer so many don’t want to talk

about, the post-treatment, as in life after cancer. It is, for so many, never quite the same. Some women luck out and it is. Stars and happy shouts to all of you!  But for those of us not too lucky, reality bites.  I write this for those, those that need the support that those that have never walked down the path don’t quite understand.

Long after treatment, no one is asking how you are doing. It is assumed, you beat it, and therefore, you are now doing fine, back to you. Oh, you may have a different outlook on life, maybe live more healthy, and maybe have new boobs or no boobs at all but life is relatively normal. 

Feeling blessed is a given many days, living on the other side of cancer, being a survivor is a nice title. It has an awesome ring to it. However, attached to it, for many women, are long-term side effects that are just not issues women knew they signed up for or ‘expected’ after treatment.  Once it was out of your system, some of us ran for cover.  This was me, heading for the circle of friends that never had cancer to get as far away from the disease as possible. Unfortunately, it is as if the long-term side effects hunted us out of hiding, wrecking a new kind of havoc on our lives. 

Good-bye life without doctor appointments and health worries, and hello feeling like a hypochondriac and kids and friends that look at you like you are a freak of nature.  The multitude of issues varies but support groups show a vast similarity among women survivors.  There is a mixed benefit of sharing in these groups. It aids in understanding and support. And then, on the flipside, it is depressing to hear others suffering more than you. However, I always recommend keeping a few survivors in your circle of support, in your close knit of friends. Without them, you are left with an outside world that does not totally understand life post cancer.

The medical issues that creep up do not always occur immediately afterward, some come in time, and some, such as lymphedema can occur at virtually anytime. There are far too many and I don’t even know them all. Just to list a few though for those that are wondering what could possibly occur with someone medically after cancer treatment: estrogen-related issues due to sudden onset of menopause, bone density issues, neuropathy, chemo brain which can also cause issues with multi-tasking, immune deficiency issues. In my case and a few friends I have since met, we experience extreme chronic migraines. I never had this diagnosis or issue pre-cancer. Make no mistake, we all feel blessed to be here, even on a bitchy day.

Recently I was with a few survivors. One in the group who has been dealing with Stage 4 for many years made an interesting statement. She said she felt sorry for her significant other.  Too much of the care-taking falls on one person, doctor appointments, dealing with her mood swings, etc. making her feel the relationship was very one-sided. She told us her mate would be better off without her.  We all can relate, life isn’t fair and the relationships we have from cancer aren’t either. None of us signed up for cancer or the side effects afterwards. When you are a survivor with continual health issues, just like any chronic illness, it is a drain on a relationship and it takes take a toll.  It is hard, at times, as a survivor, not to feel resentful of a disease that has stolen more than just breast tissue, more than just the months or years of treatment but has altered your life, lifestyle, etc. significantly. For some of us, financially we are never the same. Medical insurance does not cover everything. The same thing is true of the post-cancer issues and many of us find ourselves in a position where we have enough issues we can no longer work.

Emotionally, going through facing death can be one of the biggest wake-up calls many of us face. It will force some women to take a good hard look at their life and initiate changes, first with themselves and then with everyone around them.  Make no mistake, not everyone is going to like these changes but they must be made. Living healthy is important, not just physically but emotionally. Health begins in the head and then settles in the body.   If people walk away from you because you are trying to get it right by God, you must trust your faith in the person that saved you ultimately and let go of the distrust to move forward.

If you are reading this and are one of those survivors frustrated because family or friends are not getting it, your health and emotional dilemmas, post-cancer, know you are not alone. Also, if you have tried to get folks to understand, it may be a fruitless effort. Some of us have cried, wrote letters, and tried everything under the sun to no avail.  

The harder you try the more loony you look!  Wasted energy is energy that could be spent working towards staying healthy, being proactive in warding off disease, one less doctor appointment and building a network of friends and family that are open to understanding the new you, post cancer. What you need in your life is acceptance of who you are now, compromise in your relationships and not settling for unhealthy manners of living, be it physically or emotionally. 

I believe a network of cancer friends is important. I also believe it is important to have a mix of friends that are not. I am blessed to have some dear friends that are not cancer survivors and really do seem to understand my health issues and changes I have gone through emotionally and 100% accept me and support me. If you don’t have that in your relationship, as I use to tell my daughter, dump them. Cancer can return its ugly head at any time and stress increases the odds. Unhealthy relationships have no place in your life anymore. They simply increase the number of doctor appointments on your calendar. 

Please know you are blessed to have survived breast cancer or to be here, still fighting.  Those of us, in that crowd, support you for all the changes you have made and all the continued issues you are dealing with. We have compassion for your sad days, joy over the happy ones and above all, celebrate your life! 

A Light Shining Bright

I remember the day I was diagnosed with breast cancer like it was yesterday. Time stood still. It was that kind of silence where you wonder if the world has suspended spinning. When told by my doctor, I did not ask to have it repeated. I did not want to hear that word again stated associated with me, my name, my body. Any time was too soon to hear it again!

But the next day, there it was again, stated in relation to me. I started hearing it over and over again, like some kind of conspiracy to desensitize me to the word. I associated it with death and dying and wanted no part of that. I was always upbeat and positive. Very quickly, I tried to change my understanding of the word and what it meant to me. I wanted many more tomorrows so I began to envision cancer as merely a journey, a mountain to hurdle. I started calling it, affectionately the “C” word.

One of the best ways I found to change my automatic response to the diagnosis was to begin work on my dream list. I would contemplate, just as seriously as I would listen to the doctors update me on my treatment, my desires that were, to date, unfulfilled. I added to the list and kept it by my bed stand so that on days, when I could not make it out of bed, I could still look at it, reflect and yes, joyfully add to it.

The first few months of treatment, the list had on it such trivial items we take for granted as read a magazine article, or answer the phone and talk to someone about something besides the “C” word. Even a trip to the mailbox made my list of dreams unfulfilled. And slowly but surely, I began to proudly cross items off that list. One by one they were removed and replaced by others more challenging. Now the dream feat was a trip to the mailbox, a visit to the grocery store and even reading a book. I remember walking into a drug store to pick up a prescription. The man behind the counter said my name as if I was a celebrity. He knew my husband by appearance, but had never met me. He was so excited to meet me. The pharmacist said he thought he had heard my name every week for months. I think he was right; we gave them way too much business! The wonders of chemotherapy can only be experienced with additional medications to help curb the side effects!

This growth I experienced was partially due to focusing on reaching attainable goals. Too often, we strive for the impossible and thereby, set ourselves up for disappointment. I did not know how this would all end, my story of cancer treatment, but it gave me inspiration for the next day as I conquered more and more items on the list. It kept me positive, being true to who I am so that the cancer was not destroying the heart of me, my spirit. Eventually, I strung quite a few next days together to tell a story, this story, of accomplishment, of recovery.

I am a survivor that has traveled a long hard journey. May you start your list now and learn from a survivor, there is no time like the present. Do not wait till you are faced with a disease and feeling vulnerable. My new light, that of a survivor, is shining bright. It is called hope. May it shine on you!