Teddy Boy —not doing well
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Hi Susan, Your husband is sounding a lot like where Teddy is. I am wondering if anyone has suggested Hospice to you. Bringing in Hospice does not mean someone has a week to live. My goodness, don’t know what we would have done without them! They come and evaluate him and immediately we had wheelchairs, a walker, medication as their aim is to make sure the patient is comfortable. Your husband is spending too much time “trying” to be normal while his body is trying to fight what is in it, he has no energy left to just try to feel better.
Teddy has become very weak (combo of the Cc and so much Morph) and walks with his walker. His color changes daily from pale to a tiny yellowish hint. He is almost always cold. Rarely nausous but has a Med for that as well. Sleeps a ton and lately late afternoons are his best time.
What eased up everything was the fact we talk. We have talked a lot about what he wants and what will be and I have been honest with him the whole time. We both look at life like, ‘cut my arm off but tell me what you are doing first’. Cute thing is, if I tell him I got an answer on the CC Board, then that is what we do because we trust everyone here so much.
Far fro last….listen to your gut…it is usually right. If you like feel free to e mail me, if that might help.
Oh, if you don’t have Hospice yet, just tell your ONC you are ready and he sets it all up.Dear Lainy – So glad that Teddy is loving his bed. It has sure been a blessing for us. I really have no idea what stage my husband is in (I know his cancer is stage 4 but I am talking about how his body is at the functional level) and it is so hard trying to piece it together. He has been in bed more than ever, he is very pale, he has begun vomiting at times and this week, his balance has gotten so poor that we bought a cane and he fell twice on Thursday just moving from the bed to the restroom. We spent time out today with our family, but he struggled the entire time. He is definitely getting more pain and tenderness in his liver area. Then, thankfully, he might take a good turn and get some energy for a few days or a week and then be back in bed. I think he is declining and we see changes, but every change seems to become the new norm and it is hard to assess how he is really doing. The doctor said he looks better than he expected. We have had experts from UCLA and City of Hope tell us the only option for my husband is palliative care. Sometimes when I read of all the surgeries that others have gone through, I respect their fight, but I wonder if it is worth all of that. It seems for every good turn there is at least one or two bad that follow. I am not depressed or pessimistic, but I work so hard trying to figure it out, treat my husband well, respect his wishes (whatever they might be), and still am not sure where we realy are in the overall process. I definitely think we are losing ground – I guess I just don’t know if it is as expected or changing rapidly or slowly in comparison to the average. Maybe there really is no average and everyone is different. I hate to lose him and yet, we are losing him a little day by day and some of his best attributes are rarely ever seen now. Such a terrible loss. As to fentanyl vs. morphine, I think that we will graduate to morphine, maybe sooner than later as the fentanyl isn’t holding as well as it used to and we have upped to dosage once already. Thank you for your words of encouragement to me and to all of us on this site. Blessings to you and Teddy, Susan
Hi Lainy,
Glad to hear that Teddy’s bed arrived so soon, and also that he loves it as well!And I hope that the new doseage works well and does the job for Teddy’s side, back and stomach pains. Sleeping like a baby sounds good to me.
Love to you and T,
Gavin
Lainy;
I don’t have anything of importance to add as far as information goes. But I am sending tons of prayers to you and Teddy. You are such a wonderful caregiver. Take care of yourself also during this time. I pray that my time will be as peaceful and comfortable as you have made Teddy’s. God Bless you both,
JamieLainy,
Just to say I’m so glad Teddy is loving his new bed and his pain relief has been sorted out.
Take care of yourself too.
Love to you both
Andrea
Hi Susan. Teddy’s Hospital bed came only hours after ordering it yesterday. He loves it! I asked the Hospice Nurse about the Fentanyl and she actually thought the Morphine was better and had less side effects. Could also be a matter of opinion but the ONC increased the dosage. T is now taking 100mg every 12 hours (time released) with break through of 20 – 30 mg every hour or as needed. I just checked on him and he is sleeping like a baby. That’s all I want, right? Hope you both are good, as good as we can. It seems that there are quite a few at the same point right now, wishing them all a peaceful journey.
Lainy – My husband has back pain, but it is located higher up nearer the base of his neck and shoulders. Could be mets, but that is not confirmed. My husband says that the adjustable has saved him. He is so comfortable in, can change the settings and it vibrates which he says is a godsend. He also has constant tenderness in his abdomen despite being on Fentanyl 75 mcg. We augment with Vicodin when needed. My prayers to you and Teddy. Blessings, Susan
Lainy, God Bless You and Teddy, The pain you describe sound s very similar to the ones my wife has.She is still ambulatory but also needs much rest when she has been out . I read your words and my heart feels heavy and I hope and pray that you both get some relief. Your kinds words of encouragement to others gives us all strength, and I hope you can find some comfort in this difficult time. Sending many prayers YOUR way . Bob B
Hi Lainy,
As you know I have been on this site for such a short time. I do know however you are always able to help other people so much with your knowledge and warmth. Like everyone else my thoughts are with you. Like so many have already said the pain can be so different (I’m learning). My Mom’s pain is on the right side just under breast and also in the back on the right side of the spine. I did get a memory foam thin mattress for the top of my Mom’s bed and this has helped her so much. She said it is like being on a cloud, and that’s how I want to think of her.It’s our turn to send you many many hugs, we are all with you.
Frances
Lainy
I am thinking of you, and keeping you in my prayers. I am praying for peace and serenity to envelope you and Teddy, and am sending you a huge hug.
lots of love
Michelle
Lainy: When Tom had pain in his back, right side, it turned out to be a kidney stone. You may want to have them check for that? An x-ray will generally show a stone if there is one.
HUGS,
MargaretLainy,
I just wanted to pile on my own virtual hug. Hang in there – you are amazing and full of strength.
tom
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