“What now?” or “What are the next steps?” are questions I get a lot from people asking me how I’m doing post-surgery. A lot of people assume that just because I finally have the tumour removed, that I am now okay to go about my life.
I’m not. That’s not how Cushing’s works and just another reason to add to the list of why I’m so set on creating awareness about this disease. Whether the disease came from a tumour in the pituitary gland, adrenals or anywhere else you can get a tumour that causes Cushing’s, the recovery period is 1-2 years.
1 to 2 years. It all comes down to each individual. We are all different. Cushing’s is not a weight-only disease. It is deadly.
In that year or two following surgery, it is considered remission. You cannot fully know if your body has mostly healed from the Cushing’s until about a year later. MRI’s need to be done to ensure no growth has come back and blood work/urine tests need to be completed to ensure hormone levels are where they are supposed to be. A person with Cushing’s has had it for years, even if they didn’t know and the body needs major time to recover.
With levels of cortisol 5 to 10 times higher than the normal level, the body is constantly on a high. It affects the brain function (on top of the fact that there is a tumour in there – even though it is not a cancerous tumour, it does as much damage as one), internal health and physical health. High blood pressure, weakening of bones, muscle atrophy (loss of muscle), possible liver/kidney damage and so on. The longer Cushing’s is affecting someone, the worse they feel and the more deadly it becomes.
The only thing people physically witness this disease doing is the weight gain, acne, hair growth, dry skin, deep, purple and red stretch marks and cuts that don’t heal well and fade to scars that never seem to lighten. Just because we don’t “look” sick, doesn’t mean we aren’t. Just because the tumour is removed doesn’t mean we still aren’t sick. Takes a while to get better.
Cushing’s patients are in withdrawal after removal. We are weak, tired and dealing with hormones resettling. We still get body aches, major headaches, anxiety and depression (not all – again everyone is different but many of us do).
So my next steps? Recover fully before going back to work and committing to others before I am able to fully function for myself. I can barely go out for an 30-60 mins without getting tired let alone commit to a roll at a new company, or to clients or volunteer work I want to do. For now, I’m focusing on hobbies, my health (physically and mentally) and refreshing my marketing knowledge so that when I am ready to get back into the work field, I’ll be fully prepared. I’m using this time to become the best me I can possibly be.