shel15
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Thank you everyone for all your support and prayers. I wish one day this cancer gets the recognition like all the others.
I truly dont know what I would have done without all of you. Its so nice having a place to come and have people understand what your going through.
The kids and I take it day by day. We keep reminding ourselves that he is no longer suffering and is happy again. If we cry too much we also remember how much he couldn’t stand us crying. We joke about how he would get after us for getting so worked up about him being sick.
Tonight is our first night home alone with no one staying with us. Its Diffenetly one of the hardest nights by far. My anxiety is at an all time high.
The kids and I have been camping out in the living room together. I’m sure we will be doing this for a while. My daughter has a hard time going into her own bedroom by herself. I have to walk in there with her and she don’t like being left in the house on her own. She’s afraid she’s going to walk in the room and see him standing there.
My son has been kept pretty busy between my dad and my nephew. He has his moments but seems to be dealing with it better then I expected. He told my mom he had a dream about his dad and that he was with his friend and that his dad looked healthy and young again. It seemed to make him feel better.
I just wish the day my husband passed away he wouldn’t have done it when I walked out of the room. I feel like i didnt get the chance to say good bye. If I would have had an idea it was going to happen I would have never left the room. He just had a small fever the night before and hospice came in the fever broke. Hospice told me all his vitals were normal. The nurse had given him 48 hours to a week so the next morning when he passed totally threw me off guard. I just so wish he would have given me the opportunity to be in there when he went. I feel bad for walking out. Within 2 minutes of me stepping out he was gone.
Thank you everyone for always being here.Michele
I am so sorry for your loss. I just lost my husband on the 19th to this horrible cancer.
I keep reminding myself he is no longer suffering and is now happy and healthy again.
Sending lots of hugs and prayers your way.
MicheleThe fast few days have been a roller coaster. We have went from him to barley communicating, not eating, extreme confusion to now up talking and eating like crazy.
Now my main worry if this is what they call the spurt of energy( the calm before the storm) some get before the end comes. The hiospice nurse is fearing thats what is happening. Today is his birthday he is 47. The kids stayed home from school to celebrate it with him. They asked if he wanted a cake and he’s all for it. He was up this morning and ate 2 bowls of cereal which just frightens me. For the past 2 months i was lucky to get him to eat half a bowl.
He layed back down around 10am and its 1:15 now so I am beginning to wonder if the energy is wearing off.
The kids have only made it to school one day this week which was Wednesday but only made it half a day. After what they watched him be so confused Monday they have been real upset. At one time Monday he acted like he didn’t know who they were so he ran back in the room for a few seconds then came back out and said hi to them. That was the hardest thing to watch was the look on the kids faces.
The hospice nurse told me just to keep and eye on him and to be prepared for the worst to happen. She told me she can’t be for certain that this is what’s going on.
Seeing him with so much energy and being able to have conversations with hi. Is hard. It almost gives you false hopes like he’s going to get better. I know thats what it has done to my son.
I just want you all to know I appreciate each and everyone one of you. With out all of you I dont know what I’d do. This group is wonderful. Prayers and hugs of out to all of you.Michele
Hospice came in today and gave him some of the cream to rub on his wrist. So good so far. Has not vomited once today. Fingers crossed it keeps working. Night time seems to be the worse.
MicheleLainy, I believe I am ready. I want to be as prepared as possible. Plus with the way his nights are with his pacing and pains it makes me worry.
Thank You
MicheleLainy, no i dont recall you sending me the list. Of course I’m pretty forgetful these days though. Lack of sleep myself.
MicheleLainy, his ONC told me the other day when I spoke with her on the phone that if he done with treatment then on his next visit which is December 6 that she would set up hospice. My hubby is against it. I have told him how much help they would be. Hopefully by his appointment he thinks it through.
I wonder if because she wants to set it up does it mean he dont have much time left?
Thank you LainyThanks everyone on your input. I thought so too on what I seen that it was sketchy. Just needed to confirm to let my brother in law know.
I appreciate every one of you on here.Michele
Kris, thank you! Glad to know I’m not the only one dealing with in-laws who think they know it all. What gets me they have never been to one appointment!
I too call the doctors office and give them heads up on things. If he knew he would flip on me.I figured I better get an update on here.
1st.. My husband had a ct scan done to see if they could see whats the cause od his pain. Ct scan showed really no change. The doc said maybe there might be a couple of lymph nodes that may have changed slightly. But they are considering everything stable.
2nd… They give him delodid ( i think i spelt it wrong) for his pain. Which he has not taken. He refuses to at this point. He’s stubborn!
3rd… Now on September 27th his last chemo appointment he had his blood work showed that his one kidney level was low and the other is high. Also the ALK phosphatase has gone from 145 to 157 and AST went from 31 to 50 and ALT went from 55 to 75. Also he lost 4 pounds. This is within 2 weeks.
Don’t know if it means much but I worry because the pain in his abdominal pain hasn’t lessened at all.
So in the past month he has lost about 8 pounds.
I wasn’t able to make it to his last appointment with him because my kids had an appointment the same day. So him being him didn’t ask any questions on his blood work.
I dont know if i should get over concerned but I am.
He is really restless at night. He says that when his stomach bothers him the most. So he will get up a sleep on the couch with his legs up on the back of the couch. He says it helps.
Oh the doctor did mention that maybe the pain could be caused from some of the lymph nodes that are swollen in that area or scar tissue.
Today wasn’t a good day for him. He said his stomach has hurt and felt bloated a lot.
Just feeling lost today. I still find myself in denial with all of it. Then when he has days like this it hits me like a ton of bricks. Then i set and think how am i suppose to go on without him? I have no idea how to handle all of this and be strong for my kids at the same time!
Will post another update after his appointment on the 11th.Prayers go out to everyone going through this,
MicheleHi everyone. Thanks for all the input. I still have not been able to talk him into going in to be checked out. He just keeps telling me to call his oncologist tomorrow and see what she says. He’s so darn stubborn.
He says the pain is not as bad as before but I wonder I’d hes just saying that or if its gotten better. He’s up and gone with some buddies from work today so it must be better. I sure hope so.
He just doesn’t realize how I worry. He always tells me I have nothing to worry about or be stressed over. Man is he ever wrong. He says hes the only one that has to worry. Dont matter what I say he thinks it doesn’t have much effect on me or the kids.
What am emotional roller coaster this shit can be. I still try to figure out how he got this type of cancer. Just dont make sense.
I will update more tomorrow once I call his doctor and see what she recommends.
Thank you all so much.
MicheleThanks Lainy, I will have a talk with him. His pain is in upper ab part, on both sides and says its goes to his back on his right side.
If i question him too much or watch over him then he tries to hide it. Wish I could give him a swift kick in the butt.
He tells me not to worry and that its nothing. Me?, not worry, right!
Right now he has been up and running around outside.
Hopefully I can talk some sense into him.
Thank you so much, Michele
