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To: STAYINGCALM

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Hello Stayingcalm,
I have some questions for you, as throughout my time on this board I've read many of your posts. I feel that you give informed answers or opinions and are willing to share your journey. You have stated that you received WBR and I wanted to know how soon after did you feel you had issues with memory, and did you recognize them? My husband had WBR about a month ago and of course, fatigue has been a major issue, but he seems to be coming out of it, slowly, but feeling stronger every day. His hearing was affected, but as you said in a post, could be age or chemo, or both. I know that the "delayed, long-term, side affects" include the memory, just wanted to know if it could happen way sooner?
Thank you for any info you wish to share with me.

If any one else has a situation having to do with this topic, and would like to share, please do. Thank you.

Lucy

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Dear Luz,
(I think all of us here give informed answers and share what's going on, really!)

After I had WBR, it was maybe six months when I began to notice I had memory problems. It could happen sooner, I would say. I began to realize that I was forgetting to do things and having trouble multitasking, and worst of all, making spelling errors/transposing letters, not a good thing for someone who works in a library ;-)

Does your husband seem to be having memory issues? I suspect that how soon they are felt depends on how high the radiation dosage is or maybe how the dosage is spread out. I had 20 days and then 5 more of Tomotherapy.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Yes, I know that everyone that has ever responded to a post of mine has shared openly. And in almost all instances, have given me very sage and caring advice. In complimenting you, I hope I have not offended or slighted anyone.
Thank you so much for sharing. I have also participated in the Facebook movement. I even found some lovely fresh water pearl bracelets to give to family, friends and medical staff, along with the message that "Wear pearls in November for Lung Cancer" is promoting!
I love my husband so very much and , as I have always been, want to keep up with the latest info on lung cancer, so that he and I can better understand what he is going through, what he may go through and how best to deal with things.
He had the "standard" 10 day treatment, with the mask. Physically, all he experienced was a bad "sun-burned" scalp. He had already had chemo so had lost his hair already. No nausea, slight headache the first 2 days. His appetite has diminished a bit, but as he gained 40 lbs. during chemo, been eating healthy and sometimes smaller meals, more often.
He was affected by slight neuropathy to his feet, not pain, just a numb, tingling sensation. I have noticed he has a "lead" foot on the accelerator and sometimes trouble staying within the lines while driving. When I've asked him if noticed the speed or driving within the lines, he replies no. That's why I asked if you were the first to notice differences, or if someone else pointed something out to you.
I must tell you that right before the WBR he was told that the cancer was in several of his bones. Probably the reason why he did go ahead with the WBR, as the cancer spreading concerned him. At that time he became depressed, he said he thought that he was on his way to beating the cancer, and now it seems that it was not so. During the WBR period he was really depressed and the fatigue didn't help much. He does see a therapist and takes 30mg of Celexa daily. Never been one to open up. I have so encouraged him to sign up for this board, who knows, he could help someone else by sharing! But he says no, he'll just read over my shoulder. Of course, I do not put pressure on him. It would only be good for him if he wanted to do so.
The cancer has forced him to retire, and I feel that he is also dealing with the usual "what do I do now" that alot of retirees experience. Being fatigued doesn't let him desire to go fishing, play golf, the things he never had enough time to enjoy before all of this.
The memory issues are as you described, searching for the right word, remembering something that was said (even by him ) the day before. He still handles our finances but I fear that he may make a mistake that could hurt us, financially. Just last night he was going to withdraw $20 from an ATM. He withdrew $200. He had just received a new card as his old one was swallowed up by an ATM machine because he forgot to take it out. Not too much of a biggy, but wonder...
Emotionally, he forgets to say I love you or the other things that have always been a part of our lives. Do you think that cognitive thinking can affect emotional thinking? As I said, I love him so much. I just wish I could know if this is because of the WBR and chemo and depression?
WBR was a very difficult decision and we said that we would make a decision and live with it. I suppose we just thought that these issues would come later.
He is going to begin Zomeda in a few weeks to help his bones.
Thank you for your time and any answers you may give me. Take care, Lucy

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Dear Lucy,
It's definitely the WBR, it's all utterly familiar to me. I forget to do the simple things, like letting my boyfriend know I'm home from work, or awake in the morning (we live separately) or to sign out on Messenger with a "love you" as I always did. It's not that his feelings have changed in that way, it's the WBR. I would also imagine that the antidepressant might have some effect on his thought processes, too.

If he is able to talk about it, you can suggest that he write himself reminders about things that he really NEEDS to remember, get him an unobtrusive notebook so he can write stealthily ;-) I've forgotten so much, I'm grateful for the notebook where I wrote down my major hospital stays, etc., dates are the hardest thing to remember. Crossword puzzles are good exercise, I keep a book of puzzles in the bathroom - but you probably didn't need to know that =)

Remind him about things yourself, gently. I hate it that I need to hear the same thing over and over again, but I've accepted it, and I don't get mad any more. Let him know he's NOT losing his mind, and the memories are NOT lost, they just take a little longer to access. It's like downgrading from Windows Vista to Windows 2000, everything is still there, it's just a little slower.

Take care of yourself, too ;-)


Deb

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

Lucy, I have the same questions as you. My partener also finished WBR a little over a month ago. The fatigue has abated. Sometimes he seems absolutely fine, and sometimes he seems confused about appointment times or forgetful about details. I'm not sure how much I'm reading into things or imagining them and we haven't talked about it. I'm scared about long term effects, but on the other hand, having him around long term is the most important thing.
Karen

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Dear karenbeth,
Thank you for posting. All of these topics can be difficult to address. My husband and I have been able to discuss this one in particular. It isn't easy, I never wish to offend him, but somethings just have to be said. In regards to his driving, I would not forgive myself if he ever had an accident, hurt himself or some one else. When I recognize that he is having trouble coming up with a word, I give him a little time to come up with it, if he cannot, I ask him if "this or that" was what he was trying to say. We keep a calender with all appointments and important dates, and I ask him to enter the info when we get it. A few times I have been the one to forget! Something we experienced just last night, we went to pick up our son at work, I was driving and as I was pulling into the parking lot, my hubby said I was going the wrong way. I asked him to direct me to where he thought I should go, but we ended up in the wrong area. He said he was confused and turned around. I told him that it is not a place we go often and it was dark. But he said he knew that he had made a mistake. I know that this aspect of the cancer is hard to accept for him, it's hard for all of us. I think that it can get better, at least I pray it will. I know that, as you say, no matter how much he forgets, his presence in my life is what matters most. I have read that in the future, should he need, there are "therapies" to help him keep or maybe regain some of his skills. I have purchased crossword puzzles, games cards and many books, for both of us. They say everyone needs to hone their mind as we age. I hope soon he will be able to hit a few golf balls and go for walks now that the weather is cooling. He has told me and I have noticed that his gait has changed.
Best wishes and prayers to you and your partner. Stay in touch.
Lucy

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