How many invisible scars do I have? Let me count the ways.
During November, the #BCSM community is focusing on the invisible scars resulting from breast cancer. The latest #BCSM tweetchat transcript is here, and comments were flying.
We, members of the club no one wanted to join, have much to say about invisible scars.
Long after I got up from that chemo recliner and long after my radiated breast turned its normal flesh color, and long after my bilateral mastectomy, and long after my lockdown at ICU, I am still grappling with cancer-fallout scars. Scars that people who think I’m a victorious survivor don’t know about.
This post is a rude awakening.
I am living with Post Traumatic Stress Disorder. This is the first time I’m admitting this to the world at large, but I have PTSD from having had breast cancer and all the scares that come with it. I’ve experienced flashbacks, sleepless nights, triggers, and panic attacks. This is why I can’t handle tons of medical information. Luckily, I’ve had excellent treatment to help me cope with this trauma. I know I am not alone; so many cancer-affected people have PTSD (More on this condition and breast cancer in a future post).
I fear recurrence. Like so many breast cancer survivors with no evidence of disease (NED), I am afraid my cancer will return. I know too much. I know that cancer can recur many years after initial diagnosis and treatment. Maybe there’s a stray cancer cell, just lurking – ready to strike. I could go from NED to Stage IV in a nanosecond.
I fear leaving my daughter motherless – twice. Even though I don’t have metastatic breast cancer at this point, I still fear dying prematurely from a recurrence and leaving my daughter motherless. As my regular readers know, I adopted my daughter from China. For a variety of complex reasons, her biological mother left Ari motherless for the first 13 months of her life. Her birth began with loss. If I have a recurrence and die, I would be the second mother to leave her. I’ve taken elaborate measures to ensure that, should I die, she is well cared for physically, but I’m not sure how she would fare emotionally.
Going to doctors is still a huge hurdle. Doctor’s appointments are emotional agony. Seeing my oncologist caused me tremendous stress, even though he is a wonderful doctor. I’m ashamed to admit this, but I let two referrals to specialists expire because I couldn’t bring myself to make the appointments. They are top-notch doctors, but I just couldn’t bear to be tampered with. I lied to my primary care physician, telling her I lost the referrals. New ones are coming in the mail, and I will definitely be making the appointments and following through by actually going to see the physicians.
I wonder if the chemotherapy regime I received will cause more damage to me in the future. I have chemobrain that never went away, and my bone density has suffered as a result of chemo. I’m nervous about potential risk of future cancers.
I still struggle with body image. Objectively speaking, my reconstructive surgeons did an excellent job. However, my reaction doesn’t quite jibe with the outcome. Perhaps I should embrace my “new” breasts, but I feel a sense of loss and grief and anguish because the ones I was born with have been amputated. I regret not taking pictures of them before the surgery, but at the time I hated my breasts, knowing they were timebombs, and needed to remove them. I am gradually learning acceptance.
These are just a few of the major invisible scars that I must live with regularly. Despite these hurdles, I still manage to enjoy life. I keep up with hobbies I love and relish my time with Ari and wonderful friends. I take nothing for granted.
Like everyone, my time on Earth is limited. I want the world to be a better place for having had me in it.
Do you have invisible scars from any kind of illness? If so, please feel free to share them here.
Tags: cancer aftermath, fear of doctors, invisible scars, Post Traumatic Stress Disorder, PTSD, PTSD and breast cancer