frustrated and stressed

jim and i
jim and i Member Posts: 1,788 Member
in Head and Neck Cancer #1
It is time for Jim's PET but the scheduling computers have been down all week so they can't schedule it. argh! On top of that the lump under Jim's tongue is still there and I am getting nervous. We see the ENT again in two weeks so he can check it. Jim is also going backwards in recovery. The first month after treatment he was better a little each day. He was sleeping normal hours and walking to the mail box (which isn't far) everyday. Now he is getting progressively weaker, sleeps all day and night and has a sore throat. He did not have a sore throat before, even in treatment. He doesn't want to go to the mail box anymore and chokes on everything he tries to eat or drink. Just shaving in the morning wears him out and he has to sleep. Even getting dressed is a chore for him.

On top of all this, our money is almost gone. In this job market there are not to many who will hire an out of work pastor in their 60's. My health insurance expires the end of this month and our savings will run out the end of the year. I do not qualify for unemployment since I chose to leave my position to be able to move to the area for treatment and to take Jim to appointments and care for him. (He still cannot drive do to weakness and balance issues.) Does anyone know of financial assistance for the caretaker?


Please pray for Jim and pray I can find a church to serve or a job.

Thanks for listening and Blessings to you all.


Debbie

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Such a heavy load to bear
    Debbie you are carrying such a heavy load. Please put a little of it down here today and let me pick a little up. I can empathize with the scheduling problems as I have been fighting with my insurance company for a month now on allowing my Ct scans. I have two oncology nurses involved, emails back and forth and a box full of rejection letters from my insurer. Slowly we have got to the point where they will approve three of the four scans. However they misclassified one as a brain scan which is going to cause me problems on the radiology testing end. So it's been very frustrating but you have so much more going on. Please just vent a little and take a breath as much of this will work itself out. Jim's body is struggling to build new red and white blood cells after all the poison and damage. It can be a very slow recovery and yes sometimes it's two steps back and one forward. He will get better. Please take care of yourself if only for a moment today. Tomorrow take 30 minuets all for yourself. Let those straws fall from the camels back just one at a time.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    stress
    It is all very stressful, I agree.

    Steps backward - my Jim certainly had those. Did great immediately following treatment but had problems with pain, fatigue, sleep, losing weight - all kinds of things seemed to get much worse in the two - six months post-treatment timeframe. We came to understand this is normal. We are now about fourteen months post-treatment. Sure enough, Jim's weight is back up to an acceptable level, his fatigue has lessened, and while he still struggles with pain issues, we now know that the pain is radiation damage and medications have been adjusted and provided for this type of pain. They are not perfect but they are better. The pain is manageable.

    Dependent upon the denomination, I would hope there is some help for him there, but, failing that and if you are willing perhaps there is a way he could be a "floating" pastor - our retired ministers (United Methodist) fill in when an active minister is going to be away - for illness, vacation, sabbatical, etc.

    Beyond that, is disability available for Jim?
  • Hal61
    Hal61 Member Posts: 655
    #4
    SSD
    Hi Debbie, that's a lot to handle at one time. Like Ratrick said, try not to handle it all at once, since you can't anyway. I had radiation/chemo/neck surgery, and fatigue is one of the unpleaasant recovery symptoms. I felt like I'd just finished an eight-mile hike everytime I got up. It will go away. I'm 63 by the way.

    At Jim's stage, I wouldn't have been much good for work, unless someone would've paid me to watch TV or read. If you haven't looked into SS benefits for Jim, that's something you should do. I filed early for my benefits, then found an entry in the SS rules that allowed me full benefits, as if I had retired at 65. Through Social Security Disabiltiy I was allowed to receive the full amount because of the head and neck cancer (base of tongue in my case). Head and neck are considered special circumstances by SS, and cases with a record of diagnosis and treatment are moved to the front of the line when considered.

    I wish you and Jim the best. If I were an employer, a pastor in his 60s would be just the kind of person I would hire.

    Hal
  • Pumakitty
    Pumakitty Member Posts: 652
    #5
    Prayers
    I am sending lots of prayers your way. There is a caregiver association. I do not know much about it, but I have heard it mentioned. Maybe you could look for it online. I know that where my dad gets treatment, they have a person you helps with financial issues. I hope you soon find some relief.

    Kathy
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Hi Debbie
    When I was down to the ground with my second treatment and did not think I could sink any further I found that there was a basement under the dirt. But yet every time I went down deeper and deeper all I had to do was to look up and take the hand of my savior reaching down for me. I am not sure why he lets stuff like this effect his people who put there faith in Him. But this I do know like Job it is always for a reason, we can’t see it now but we will someday. You and Jim are both on the top of my pray list that somehow the lump will be nothing and money will be supplied.

    On the weakness he needs to get his Thyroids checked and on the balance he needs to try Ambrotose.

    Praying for you both
    ╠╣ONDO
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #7
    Debbie
    I would echo what Hal said- contact the Social Security people ASAP. Probably shoulda done that some time ago, if Jim isn't working. My Cousin went thru the long ordeal of C&R treatment, which didn't solve his C problem, then had one of those majorly-long Ops that took his voice box and quite a bit more, followed by a month of rehab in the hospital and a Nursing Home, and is still undergoing tests for stomach issues, along with speech Therapy, and he's basically paying for none of it. He's never really had a job for more than a couple weeks, doing seasonal farm work and tending bar for free commodities supplied by that bar as payment. His total bill for it all by now has to be over $250K, but he hasn't had to pay it. SO- CHECK OUT HOW THE GOVERNMENT CAN/WILL HELP ASAP.

    Hopes and Prayers are with you two.

    Believe

    kcass
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    Sorry for the confusion.
    I guess I worded things wrong because I confused everyone. Jim is retired and recieving Social Security, I am the out of work pastor who needs a job. We have been living on Jim's Social Security and our savings since June. I do appreciate all the suggestions and encouragement and thanks for the reminder to lay down some of this stuff since I can't fix it all anyhow. I don't know what I would have done with out this group of caring people.

    Thanks again.

    Debbie
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #9
    jim and i said:

    Sorry for the confusion.
    I guess I worded things wrong because I confused everyone. Jim is retired and recieving Social Security, I am the out of work pastor who needs a job. We have been living on Jim's Social Security and our savings since June. I do appreciate all the suggestions and encouragement and thanks for the reminder to lay down some of this stuff since I can't fix it all anyhow. I don't know what I would have done with out this group of caring people.

    Thanks again.

    Debbie

    Talk
    Talk to the Social Worker where the treatments are being done, they can help you find some help with the dollars.

    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #10
    Jim and Debbie
    I wish I could help you guys with more than just prayers, but please know that you have them.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #11
    sweetblood22 said:

    Jim and Debbie
    I wish I could help you guys with more than just prayers, but please know that you have them.

    Thanks Dawn
    Prayers are the most important thing so I thank you for all your prayers. I am a little less stressed this morning and feeling better about things. God got us through this far and I know he won't desert us. I guess I let everything overwhelm me for a few days.

    Take care and God Bless
    Debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    jim and i said:

    Thanks Dawn
    Prayers are the most important thing so I thank you for all your prayers. I am a little less stressed this morning and feeling better about things. God got us through this far and I know he won't desert us. I guess I let everything overwhelm me for a few days.

    Take care and God Bless
    Debbie

    Prayer
    Debbie you are so right prayer got you this far no need to give up now. Remember even the great Men of the Bible at one time got depressed or frighten at times. I love reading about Elijah what a man of Faith, but look how he put his tail between his legs and ran away one time. But God was right there with him all the way and God is right there with us all the way too.

    Take care
    Hondo

Discussion Boards