I'll tell you a sad, but necessary story. When my husband, who has always been healthy, and he was in his mid forties, a very hard worker, suddenly started coming home with bruises we wondered what what happening. I reacted with, "gee honey, you need to be more careful." It didn't stop. The bruising got worse. Then extreme fatigue and headaches.
I tried to get him in for a check-up but no, he just didn't want to take time off work and figured it was a flu. Within days, it worsened. One day he walked up the 7 steps to the door, with a small bag of groceries, very light in fact, stumbled into his comfy chair, and fell asleep. He did not wake until the next afternoon. This was NOT like him at all. Finally, as a wife, I had to put my foot down and be the nag.
Into the doctor. I received a call at work and they were flying him to a specialist that evening. NOW. I didn't even have time to be with him. My husband being Native was bound by Native health care who makes the rules, so I was not allowed to go with, and with such short notice, he was gone before i was off work. We didn't know what was going on. No arrangements for a family member to be with him was made. He went alone. We didn't even know who he was seeing or why.
I received a call from him the next morning from where his appointment was. He said, "Honey I think I am at the right Department, they said I was supposed to be here. It is called an oncology department. (at this moment my heart sank), I asked them what it was, honey, they said oncology mean cancer. I'm scared and I'm alone. I didn't know what oncology means. No one told me I had to see an oncologist. Do they think I might have cancer?"
I knew what it meant as my mother passed away just a couple of years prior. Due to cancer. I frantically tried to find a flight to get up there, but it was too late. I received a call from my husband letting me know they put him through a bone marrow test that was more painful than anything and the tools even squeeked during the process. The results came back that he has Leukemia. He cried. Oh my god. He was alone, they sent him up there with absolutely not support, no knowledge on what oncology means, and no explanation on why. All I could do was weep throughout my shift. Weeping more because he was alone to find this out. We had always been joined at the hip.
So our journey began. It meant out of State to get his treatment. Neither of us could work and I resigned to care for him as required by the treatment center. We had two households to support including all the bills with that. All through this, I never left his side. Even when I had to sleep in an uncomfortable chair dressed up in isolation wardrobe, mask and gloves. No way, not after what happened and he found out all by himself. Not again will I allow this to happen to the man with whom I was joined.
Why do I bring this up now? Because, if I can help it, I want others to learn from our experience. Help does exist. You do have the right to demand to be there. You have the right to understand what is going on.
Here is where I list Advocates. You must educate yourself. Immediately and as quick as you can. Be an active participant. Do not feel as if you must stand back and allow what will be will be. Not in this circumstance. The more you know, learn, read, questions you ask and research you do, the better it is. At least a little security is better than absolutely no control at all.
- The first action to take is find advocacy, or educated yourself to better understand how to communicate with your medical team.
- The center you choose should have a team including a Social Worker. Make the Social Worker you best friend. He/She will have vital information on how to proceed when you hit a brick wall.