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Good evening,
Patti again.
Yes, Greg, after speaking to Hospice, Dean's spirits were so down. We thought our doctor had recommended Hospice, but we found out it was the hospital, so we were wrong. So much happening in just a week, we sometimes can't figure out which end is up. After speaking to Hospice, I do have a different feeling about them, that is sad, but what you say, is basically the feeling I received.
Thank you for the heads up on combining two drugs. This fear of the unknown is scaring Dean so much, and I have no idea how to help him. He is usually the one that has always been strong for me. He now keeps saying he is going to be a burden to me, I have to keep convincing him that we are in this fight together. No one is a burden. You are so helpful, and give us hope, I thank you so much for that.
When Dean made his first post a few days ago, I don't think he knew he would get such kind and caring replies. I have read everyone's replies to him, I know he is thankful that each of you are helping him through this long journey. I have to realize it has only been a week, one day we were making plans for an upcoming trip, and the next we found out our lives would never, ever be the same. Our trip is now going to be in a different direction for awhile.
Thank you Cathy for telling me that you and Bruce were in a daze for awhile, I worry about Dean feeling so fearful and thinking he will now be a burden to me. I try to keep reminding myself it has only been a week, Dean needs time to accept what is ahead of him, and maybe his fighting spirit will then return.
As I told Grey above, I was confused about the Hospice referral, apparently it was the hospital that made the referral. The oncologist didn't know anything about it when I told him what happened.
I feel as you do, when things settle down and Dean hopefully does well on chemo, we will research more options for us. Right now he needs time to accept what he is dealing with, I think maybe he feels like he is in a nightmare and wants to wake up and find everything is like it was before he heard the words - MDS. Thank you for sharing your feelings with me on waiting.
And Dan, also a great big thank you for bringing some of the new drugs to my attention. There is so much to learn, and sometimes not enough hours in the day to do it all. I am going to remember what you said at the end of your post - we need hope and belief!
Some good news, yesterday when I felt like I had no where to turn, our family physician called to see how Dean was doing. I was crying when he called because I was feeling overwhelmed, taking care of my mom, worrying about my recent mammogram - I have received a letter indicating there was something that needed a second look, then someone backed into my car while I was parked at the grocery store and of course the problem with Hospice.
Our doctor said he has a home health agency that he uses and said he would tell them to call us. They did, and came by today for a visit. The nurse was so supportive, she understood that I needed some help, as does Dean, so they are going to work out a schedule for the nurse, aide and therapist to come to our home. Dean is very weak, which is also something that is difficult for Dean to accept, he has always been active. When he tries to shower and dress in the morning it makes him very tired, he is having shortness of breath and coughing. Luckily he is eating, because he lost over twenty pounds, he does look like he is putting some of it back on. Dean is thin anyhow, so he was beginning to look like a toothpick.
Anyhow we are now ready for the battle. Chemo on Monday. Thank you again to each and everyone of you for your compassion, support and kind words. I don't know how to express how much it means to me. I sit down at my computer in the evening, see your posts, it lifts my spirits and gives me hope.
Hope and belief are the cornerstone of managing MDS.
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