Emergency room again

avisemi · February 2015

Hi all,

We are having a horrible day today. Quite frankly we are running in fumes and just don't have much left. So this is when I keep telling God that I know His power is made perfect in our weekness and that I know he doesn't give us more than we can handle. I just don't want this any more. We are so, so tired. I want to soar like eagles bur in reality I feel we are barely crawling right now.

Dima finished rads in Friday. thanks to this forum we knew this and next week would be hard. But we really did not realize just how hard. He has so much mucus that it causes him to vomit daily. Today the oncologist said the sores on his mouth are some of the worse he has seeing. He even gave him permission not to eat a single spoon by mouth.

We were so happy that he had only lost 2 pounds since radiation started until this week. in one week he lost almost 4 pounds. He is a very skinny guy so 4 pounds is a lot for him.

But the worse happened today. Because of the tumor he has to take a medication to prevent him from going to the bathroom all the time. Today, we were rushing to see the oncologist and I forgot to give it to him. This causes him to loose liquids and the sodium levels to drop below normal. This, plus barely any liquid intake today plus the vomiting just got him completely out of shape. We are in the emergency room now. His heart rate is way too fast. He has an iv on and we are waiting on test results. And it's all my fault. As if he needed more pain and discomfort. I feel so horrible.

I'm so tired of having to force him to take his meds, eat, do mouth rinses, etc, etc every day at least 3 time a day. He hates it. I hate it.

I could go on and on and on. I just needed to get it all out. There is light at the end of the tunnel. We can see it. We are just not there yet.

donfoo · February 2015

rough road

you are on the roughest part of the journey and naturally feel totally worn down. You are doing the right things and staying close to the doctors to help and you are doing great keeping up with the medications and care. One day at a time. Focus on eating, drinking water, and managing the pain. Take care.

wmc · February 2015

It's a bumpy road to go down.

Yes it is a rough road at times. You did the right thing by coming and writing down what you two are going through. It can help just to get it out. Now with that said, this is not your falt. You are the loved one/caregiver, not his nurse. If HE wants to beat this it is going to be up to him to do as much as he can for himself. You are worring all the time and you are not getting any rest, I would bet on this.

This is hard and everyone handles the Tx different and is effected different as well. He is having it very rough right now and it sounds as he might even had a pantac attach is why his heart went so high. This can be triggered if scarred or hard to breath and it releases adrenaline and it will rase your heart rate which will release more adrenaline. [I get very short of breath at times and my O2 drops]. He needs to take on a bigger roll in his care, and you assist him, not do everything for him. I realise there will be times when he is real bad, and you will have to do almost everything. Just not all the time. Most of the healing is up to the patient and how much he is in controll.

Please forgive me for being a little blunt as I don't mean to offend. I'm just telling like it is. I have been through this and much more over the years. When you hurt and they ask how much between 1 to 10. I've seen 11. The Dr said he would give me everything he could leagally, but it won't do much, he said sh**, he was not joking. The walls were moving at first and I felt nothing. Then came the TX and I screamed, and screamed. Then came two shots of morphine and I still screamed, but I stuck it out for the 1 1/2 hours I needed to to get well. The nurse was told she had to stay and take vitals, but the Dr left, he could not take it.

I am sorry you both are going through this, but you will get through it. He just needs to do more for him. I added you to my prayer list long time ago and you are still on it. You try to get some rest, you are no good to anyone if you are over tired. Just one day at a time, and together you will make it.

Bill

MrsBD · February 2015

So Tired

You are not alone! Please feel free to post your worries and concerns anytime. I remember the first few weeks after treatment as being the hardest. My blood levels kept fluctuating so much they needed to give me IV fluids six times in a month. You sound like a wonderfully attentive spouse. Don't beat yourself up over one misstep. As Bill said, the patient needs to take responsibility for his own care as well. You will start seeing improvement in a few weeks, but be patient. Healing is very slow.As far as the mucus, I also had a really upset stomach from it. My doctor said to take Mucinex liquid at night. I tried to spit out that glop during the day. Excess mucus is part of the healing process and will improve slowly over the next few weeks. Someone sent me a card with a wonderfully uplifting phrase, "The God who created you can put your world back together again." I've been praying for you both.

Beth

Ladylacy · February 2015

As a caregiver

I am my husband's caregiver and it is hard and stressful but I have learned in the last few years that to let him do all that he can for himself. I do keep a check on his medications to make sure he is taking them as prescribed and yes I do remind him from time to time and it is hard for me. But I figure he is a grown man capable of making his own decisions so therefore he is capable of taking his medications.

My husband decided two years ago that he would not take any further treatment after we were told that chemo would only prolong, not cure, and possibly hasten his time. He had already been thru so much that he decided no more. He has been on hospice since Sept 2013 and yes is loosing his battle, albiet slowly and that is very stressful for both of us but he still does for himself.

It is not your fault that medication was forgotten. Don't blame yourself over every little thing or else you will end up in the hospital. Caregiving is hard and yes we are not the ones going thru the treatment but we are right along side of them watching and hearing everything. My husband keeps a log every time he takes any medication or tube feedings and this has become very helpful for both of us.

Just remember you are important too and you need to take care of yourself too. And it is true that everybody reacts differently to treatment and the time it takes to recover. We were told upfront that head and neck radiation is the worse there is and the doctors didn't lie to us about that.

Wishing you peace and comfort -- Sharon

OrchidNancy · February 2015

Ladylacy said:
As a caregiver
I am my husband's caregiver and it is hard and stressful but I have learned in the last few years that to let him do all that he can for himself. I do keep a check on his medications to make sure he is taking them as prescribed and yes I do remind him from time to time and it is hard for me. But I figure he is a grown man capable of making his own decisions so therefore he is capable of taking his medications.

My husband decided two years ago that he would not take any further treatment after we were told that chemo would only prolong, not cure, and possibly hasten his time. He had already been thru so much that he decided no more. He has been on hospice since Sept 2013 and yes is loosing his battle, albiet slowly and that is very stressful for both of us but he still does for himself.

It is not your fault that medication was forgotten. Don't blame yourself over every little thing or else you will end up in the hospital. Caregiving is hard and yes we are not the ones going thru the treatment but we are right along side of them watching and hearing everything. My husband keeps a log every time he takes any medication or tube feedings and this has become very helpful for both of us.

Just remember you are important too and you need to take care of yourself too. And it is true that everybody reacts differently to treatment and the time it takes to recover. We were told upfront that head and neck radiation is the worse there is and the doctors didn't lie to us about that.

Wishing you peace and comfort -- Sharon

From one caregiver to

From one caregiver to another, all I can say is try not to beat yourself up. You are doing everything you can to help your husband and if you're not perfect, you're not alone. You are someone doing the best she can in an exceptionally difficult situation. Please don't expect that you can control every part of what's happening. I have been there and know how hard it is. I'm saying prayers for acceptance of yourself and your situation. Peace be with you, Nancy

debbiejeanne · February 2015

i'm sorry the road has been

i'm sorry the road has been filled with pot holes and you're in the er. i am praying for him to get better now that he is ON the road to recovery and healing. also, you are NOT to blame! believe me, we could NOT make it through this without the love and care of our wonderful caregivers! you do so much for us and we greatly appreciate all you do. you must take care of yourself also as without your support, the road becomes rougher. God bless you and please take care of yourself and let your hubby do some things for himself. we have cancer, we are not totally helpless.

God bless you,

dj

avisemi · February 2015

Thank you all. I did feel

Thank you all. I did feel better to just type it all up. Thanks for the encouraging words, suggestions and most importantly, the prayers. We are still in the hospital. Thank God we came when we did. Dima's sodium went up to 169 which is bad since 170 is already considered critical. We had some horrible couple of days. He is doing a lot better and the sodium is back to normal. They are keeping here to monito for 24 hours. It seems that some of the horrible things he was feeling were due to the sodium, not the radiation. We just didn't know.

D does a lot of his own stuff. He even continued to help with our kids. though, we got to the point where he could definitely could not do it on his own. im hoping with the sodium back on track, he will start feeling better soon.

hwt · February 2015

avisemi said:
Thank you all. I did feel
Thank you all. I did feel better to just type it all up. Thanks for the encouraging words, suggestions and most importantly, the prayers. We are still in the hospital. Thank God we came when we did. Dima's sodium went up to 169 which is bad since 170 is already considered critical. We had some horrible couple of days. He is doing a lot better and the sodium is back to normal. They are keeping here to monito for 24 hours. It seems that some of the horrible things he was feeling were due to the sodium, not the radiation. We just didn't know.

D does a lot of his own stuff. He even continued to help with our kids. though, we got to the point where he could definitely could not do it on his own. im hoping with the sodium back on track, he will start feeling better soon.

Sodium

I would think once sodium and dehydration are treated, D should start feeling better real quick. I hope so.

avisemi · February 2015

hwt said:
Sodium
I would think once sodium and dehydration are treated, D should start feeling better real quick. I hope so.

he is! and we went to his

he is! and we went to his doctor today and sodium is okay

ditto1 · February 2015

avisemi said:
he is! and we went to his
he is! and we went to his doctor today and sodium is okay

My prayers go out to you and your husband

and sadly I put my caretaker and wife Diane thru some of those times when I should have stood up and taken care of myself when I could. However I was so grateful to her (even when I failed to express it) that she was there for me and I know your husband is to. Hope he continues to recover and improve. But remember missing one med is survivable, loosing a precious caretaker may not be, so get your rest, rejuvinate your soul, body and spirit and trust God to handle what you cannot.

Emergency room again

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