Being a caregiver takes a lot of strength and understanding. Ideally, a cancer patient will have a strong core of family and friend support surrounding them. Had we had more support, actual bodies surrounding us, this would have certainly lightened the load. As much support as possible is best. In our case, as the spouse I was the sole caregiver for Brad. Everyone said they thought I had it handled, after the fact. We were so sad to realize how many folks, both friends and family didn't even pick up the phone to say "Hello." Sadly, many folks run from the sound of the word "cancer" and avoid the folks who need the help the most. One of my brothers and his wife would actually take photos of themselves across the street from where we lived (we lived across the street from a theatre) and not even think of popping in to say "Hello." My best friend didn't answer my calls or even texts for over a year. I was crushed. I kinda understand. I guess some are built to reach out and help with moral support and others run away at the thought of it. It felt like folks thought Brad's disease was contagious. But seriously, through a text?
As a caregiver, I gave my all for Brad and to see the results made it all worthwhile. I wish I had known about Imerman Angels back then. Just one person to be an understanding ear with advice and compassion would have made the stress on me so much less. I have friends who were there for me but everyone has their own life going on. I stretched myself too thin. I should have taken some time for myself to relax, get a massage . . do anything to release some steam. As long as Brad was doing fine, both of our families left all of the emotional and manual work to me while they posted their photos from vacations and parties. It hurt so much. Folks avoided the fact that this is a serious disease and chemo is a killer. Most everyone avoided us. For those who are church goer's, I would reach out to the parish for support and even get some counseling. GET SUPPORT.
Going to chemo and watching Brad take in those toxins was so hard to do. Every second week Brad had infusions. Every appointment and every scan, tests . . all of it. We held hands all the time and I kept on letting him know how great he looked and how we were gonna get through this. I kept him believing. To see the stress leave him and his mind get back to thinking of his job and his music, that helped so, so much.
When things took a turn for the worst, Brad became mean and angry. He realized his oncology dr. had used him up until the chemo destroyed his immune system. Brad would likely have lived a lot longer in good physical shape had he known that the esophageal tumor was dead and had been all along. He had had an esophageal biopsy toward the end of chemo treatments, at this time I was recovering from a neurologist surgery and was unable to attend the consultation with is oncology doctor where he agreed to a biopsy. When the results came out, his doctor never told us that the tumor was dead. I know this would have definitely changed Brad's decision on whether or not to continue chemo . . a new chemo that Dr. Lobe had told us a year before, did nothing for his type of cancer. Brad believed in oncology, seeing how his father had been an oncology doctor. Sadly, his dad had passed by the time Brad was diagnosed otherwise, I am sure he would have told us to RUN! When Brad realized that he was robbed of his life, that I was right all along, as he yelled at me regularly (I didn't want to be right about any of it), his anger kicked in. It became very difficult to deal with his rages and I was all alone as I had been for the almost three years of trying to save his life. Had we had more support, this story would have been a much different one. It's heartbreaking but true . . many people vanish at the sound of the word "cancer". Again, if anyone can, please get all the support possible. I have friends who dealt with similar situations. I hope nobody goes through this alone. Reach out to family and friends and if they are not available/able to support, please reach out to an organization like Imerman Angels, a priest, councilor or any support group for help. It could make a world of difference.
I am here to help anyone in any way I can. I continue to update this website as I gather more information. Feel free to contact me @ firstname.lastname@example.org