I’ve always been the more social one in our relationship. I tend to make friends pretty easily and see everyone as a potential friend. Is this normal? Paul, on the other hand, is not quite as social although it may seem that he is to others. With his illness, however, he has a difficult time socializing because after all he’s been through with radiation to his brain, chemotherapy and a number of other medications, sitting and chatting with a few friends or family members leaves him feeling frustrated. He has windows of time during the day that he feels “normal”, but they are few and far between. Being someone who has always been schedule oriented (he’s a retired teacher), he has his day figured out from morning to night time, and manages to get through the day on this schedule. After some initial trial and error, he has discovered that eating helps his “brain fog”. I am his meal planner, and his meals and snacks are packed with protein and vegetables. Some days he is more alert and much like the man I fell in love with. Some days he just can’t seem to get his head to be clear. Weirdly enough, after dinner, he is the most clear for the evening. That’s about a three hour window of a clear head.
This is wonderful, but it doesn’t leave a lot of time for visitors who want to see him. Having always been a worrier, he gets pretty anxious days before leading up to the visit and worries he will not be focused enough to engage with people he cares about. It’s difficult for me, because I NEED to see these people and mostly have had to go outside of my home to see other people. That’s okay, but we have this great house near Cape Cod Bay which is a wonderful place to have overnight guests and hang out, but for the past year we’ve had no overnight visitors. We have our immediate family, of course, but no other family members, like my sister and brothers and their spouses or our friends we used to have here. I miss it. I miss hanging around, going to the beach, making dinners, going out to dinner and just socializing. I miss Paul. I miss myself.
There is nothing to do about it, because it is part of this disease. It strips you of a lifestyle you’ve grown accustomed to, it zaps your energy and strength, and leaves you feeling less of yourself everyday. It’s like you are isolated, both patient and caretaker, in a bubble where the whole world is revolving at one pace, and you are on hold in the same place. Yes, we have many, many blessings and we are so grateful for the life we’ve had together. Yes, we count our blessings every day. Yes we have love and a wonderful family. We are thankful for all of it.
BUT, WE also have CANCER and it is a thief, robbing us of all we’ve worked for and dreamed about.