Copyright © 1998, Helene Drobenare, MSW
I decided to write you this letter, because not so long ago when I was in shoes very similar to yours, and a dear friend gave me this advice. At the time, I didn't quite understand it, or maybe I simply wasn't ready to accept it, but he gave it to me never the less.
Just hearing that one of our parents has cancer can throw your mind into a sub- real experience. I am not sure I understood what I was feeling when I heard the news. Shock- denial-anger-hope?they were all there. I remember my first reaction. I couldn't get enough information about cancer. I kept looking for the book or article that would give me hope?would tell me?don't worry everything is going to be OK. Something that would tell me I would forever me my fathers little girl, unfortunately I never found that book.
The most important piece of advice I ever received from my friend?was the following. He told me that we were all going to need support. Of course I thought he was talking about my Dad, but he was taking about the entire family. While the cancer might be in your mom?s body you will all feel it. It might not be obvious, but it will take a strong toll on you. You will need a lot of support. It might come in the form of insomnia, or diet, or headaches, or heart-aches but it will be there. What I learned going through the process, was that I could be a much better care giver to my father, I opened myself up and let people help me. I needed to be strong for my father, and being strong isn't so easy. You will need many people at different times. Don't close them out. I'm not someone that easily shares my problems?I learned an important lesson though. The more I let people in the easier it became.
In my friend's case, his mother had breast cancer. She understood her prognosis and spoke about it easily, where as my father did not like to discuss it. Her cancer moved slowly, so she was able to compile a wish list and complete it. My father on the other hand, his cancer moved so quickly that we never got the chance to even make a wish list. And the word cancer was never allowed to be mentioned in my house. Two very different experiences, but yet very similar.
At first I thought it was crucial that my dad get into a support group and discuss "his problem". But for 70 years my father wasn't a communicator, why would he change now. He wouldn't. And I learned that it was my need - not his. And this was an important lesson for a child of a cancer patient. Be sensitive and clear on your needs vs. his needs. It was my need to talk about it- but it was my fathers need not to. He won. I thought it was because he didn't understand or was in denial. But it wasn't the case. He understood. He simply chose to accept it on his terms. If he was going to battle this cancer, live with it and face his inevitable death...then he would set the rules. I came to respect his wish. If he didn't want to talk about it- then that?s OK. It?s his cancer.
Indeed it was his cancer that we were all facing though. So often I wanted to go to a support group or wanted my mother to speak with someone, but we all used the same excuse?we don't have time- we need to be with Dad. It was a mistake. I can't stress to you enough, that we are simply not "super people" and eventually it will catch up to you. I had it maybe easier or different than others. I escaped every few months back to Israel, my home. An escape, might not be the right word. No I was no longer face to face with my father who was steadily deteriorating but instead my emotions and I were suddenly face to face and they were clearly winning this battle. I went through a roller coaster of emotions?from non-stop tears, to sleepless nights, to many many frantic long distance phone calls, to guilt, to anger?it was all there. What I later understood was that I needed to keep living my life. Through living I was able to give so much more to everyone in my family, especially my father. After spending endless hours with him at the hospital and then at home, I simply had nothing left?by giving myself a break whether it be a day or a month I returned in full force?able to relieve my mother and brother.
I learned through this process with so many doctors, nurses, physicians assistants, radiologists etc. to ask the right questions to the right people and not to stop asking until I was satisfied. What do I mean?can't ask if there is a cure unless you are prepared for the answer?can't ask how much time do we have unless you really want to know. The doctors, won't answer any question of this nature unless you ask them. I needed to ask, but it can't easy. When my father first entered the hospital, on his first night, my brother and I decided to ask if he could be cured. Our doctor, who had the sensitivity of a saint, said "No, I cannot give you a miracle cure for bone cancer, but I can promise you that I will make your father as comfortable as possible and extend his time as long as humanly possible". What more could I ask then this. Honesty and gentleness?a real mensch.
From that point on, I logically understood the end?but emotionally it took some time. And I won't lie, I also held on to hope. Hope for a cure, hope my dad would be strong and fight this. Fight this like he fought the monsters that lived under my bed when I was a child. He would protect us, as he had my whole life. This was my hope...and I held it very tightly?it was all I really had then.
Then it all began?Dad was admitted to the hospital for what seemed like an endless time. He needed radiation to his spine, which they said would take away his pain. While my father was being treated at the hospital, waking up every day was still a depressing thing for my father. I tried to get there every day before he woke up so that he first sight would be of me and not some nurse taking his pulse. Then we had a long day ahead of us. I made a routine for us...we ate breakfast in the day room, to have some sort of normalness to our lives. We then relaxed. Having cancer will take away a lot of their energy. It's hard to see and you won't want to?but be sensitive, that they normal ness have the energy of a young person any more. Radiation, while it doesn't hurt does have its side effects. After we relaxed, we watched some TV together and then they would come to take us to radiation. I always went with Dad. I brought with us the financial section of the newspaper and his walkman with his favorite singer playing inside. When we got there and he was waiting, I would read him the paper. Then I would casually shmooze with the other people. It was always good for him to hear other people's stories. As we say in Yiddish "Tzoreis Be?lighten". Then Dad would go in and a few minutes later come out of what I called his personal space ship and we would go up stairs to the tunes of his walkman. By time we got up, Dad needed to rest. And to tell you the truth so did I. We napped until lunch, ate and then listed to the radio.
When someone is going through this, their world seems to stand still, especially because they are in the hospital. Its good to try and keep track of what is going on in the world. By the afternoon, my mother would come, it would change the pace and then we always hoped for guests at night to take his mind off of things, and make the time pass. It might not seem so bad, but try doing this for 3 weeks. That was our first trip to the hospital. It was interesting, there was 2 people my father looked forward to seeing each day: his doctor and the Rabbi.
My Dad?s doctor made all the difference. His sensitivity and patience are what got all of us through it. My father would look forward to his visits, even though he knew there would be no new news or something drastic. His doctor's warmth and compassion are what became part of my father's routine?and mine too.
Dad spent the next 7 months in and out of the hospital. We always looked forward to those moments when the doctor would say he could go home, even though deep down inside, we knew it wouldn't be for so long. But home was my Dad?s heaven and there is where he wanted to be, with his own things and the people that loved him the most.
My Dad died in the hospital. It happened very quickly. He wasn't feeling well as my followed our usual routine and brought him into the emergency ward. Less than 24 hours later, I received the call that it was time to come home. Dad and I had no unfinished business, so I came home quickly?but I wouldn't worry about last words or something of that nature. The first night I got to the hospital Dad was unconscious and I guess while we never said it out loud we knew it was a matter of time. The next day was a bit of a miracle. Dad woke up and we talked, we all had our private moments together. I told my Dad not to worry, we would all be OK?that he had fought long enough and we loved him very much. Dad died in his sleep without any pain that night.
It's been almost 9 months and not a day goes bye that I wouldn't think about him. But the thoughts wouldn't bog down my mind are "what if" and "I could have". Dad got the very best care and was surrounded by love ?and while the cancer might have taken my dad?s body...the cancer can never take the love we all had for each other?and that?s what I hold on to every day.