Change in life is inevitable. I have found that very few things in life remain the same. Most things evolve into something, either for the better or for the worse. For the cancer patient, trauma begins the moment we find out we have it. It causes a ripple effect throughout the immediate family and close friends, changing forever the dynamic of each relationship.
Most good doctors do their best to get a patient through the rough patches in the beginning, and my surgeon did that well. What I didnít expect was what would happen next. I remember those turbulent times. Not much about my life looked or felt familiar.
A Broken Gauge
As time went on I knew I was going somewhere I just didnít know where. I was neither at the beginning nor anywhere near what looked like the end of this new experience. It took three years for lymphedema to become chronic and the pressure in my legs on some days was unbearable. I did my job well but by the end of the day I would pull into the driveway home, run into the house and collapse on my bed in tears.
Those were the insane times. I felt like I had been given marching orders to walk through hell without a road map or a tour guide. I felt distraught and helpless. My emotions were all over the place. My parents, family and friends didnít understand what shape I was in physically or what I was experiencing internally. My physician knew I had the condition, but it was not his specialty. Not having a healthcare professional to help or affirm the condition was hard. During this time my ability to cope became harder and harder.
I kept myself together at work because I knew how to do my job, and my relationship to my coworkers centered around that, so no problems arose. But during those first years emotional breakdowns came each day, then every few weeks. As time went by it would be three months, then six. It would take years for my body to heal and as it did, my mind and emotions settled down, too. But still, I need to accept some things and make adjustments.
The first thing that I had to accept was that I would never again be like I was before the surgery. At first I thought that I would get right back to my life, but that was not to be. In the beginning everything happened so fast there was no time for me to prepare mentally. The truth is whether a surgery is scheduled or done on the fly, we are not prepared for the outcome.
It took years for me to accept my limitations. Some days when I would go too long without a break, physical pain would increase and so would anxiety and fretfulness at not being able to endure. I would get so overwrought that what came out of my mouth, along with the tears, were unutterable syllables. Times have changed, however, and help is readily available for those who need it. Seek out the help that you need. Counseling helped me set new boundaries for myself to accommodate my new limitations. I had less anxiety and more peace of mind.
Adjusting to Permanent Change
Unprepared outcomes like this are jarring. Our schedules and routines are thrown off, and our relationships suffer. One of the hardest things for me was that I didnít look like I had ever been sick. Talking about lymphedema and compression garments were topics I avoided like the plague. But they were now part of my life. One of my legs was larger than the other, and after being stared at by a little boy one day on a lunch run for the office, I started wearing slacks only. I got clever and figured out how to disguise my look. I would match my slacks, shoes and would wear pantyhose over the full-length garment and I did a good job. I didnít do it out of vanity; that I had left at the door long before. I just found that I couldnít concentrate on my work if I knew at some point I would be stared at. It protected me emotionally and freed up my mind. But I would rather it had been known. I understand what people go through with ďinvisibleĒ illnesses because of my experience. Youíre limited, but no one knows it, and you have no idea how to get them to understand. It is hard to reconcile.
Times have changed, however, and help is readily available for those who need it. There are very good Patient Advocates and Psychologists that you can meet in person or on the Internet. I know a few on Twitter that I would highly recommend. There is now no reason anymore for anyone to suffer in that way. On the other hand, people who wonít even try to understand your condition, you will never be able to wake up. Disengage from them as soon as you can. You will do yourself a favor.
H.O.T. Ė Keep Going!
As you probably have guessed by now, the word hellway is like a booby-trapped hallway. Just remember that a hallway has a beginning and an end, you just usually can see the end from the beginning and you walk out without realizing it. In life, these beginnings and endings arenít as clear. We rarely see when we enter them, and our harsh circumstances blind us so that we cannot see the end. But there is an end to the hellway. The hellway is the transition, and just like a baby that is coming into this world transitions in the womb causing great pain to the mother, relief will come with the delivery. There is always pain in a transition and the time it takes is different for each person. Donít put yourself on another personís time table. Make adjustments as you need to, but just keep going and give yourself a pat on the back for moving forward. As the saying goes,
ďWhen youíre walking through hell, donít stop until youíre out.Ē