New here...many questions

[undefineddawn]

Hello,

My husband is the one who has cancer. We have 6 kids (2 still at home-13 &14 yrs old) and 4 grandkids. He just turned 50 this month & I am 39. He was dx with small cell lung cancer 2 years ago ~ March 17th & then March 19th of this year he was also dx with non-small cell. Before all this he was very healthy, & the type to never go to the doctor. Our whole marriage -17 yrs- he had never been to see one. Everyone in our house had gotten sick & had had swollen lymph nodes in the neck. This lasted about 3 days for every one but him. His neck -3 & 1/2 wks later- had a lump the size of an orange, & he decided to see the doc. That is where we started, & unfortunately his cancer had already spread by the time we saw a doc. Now they are talking hospice & we are scared. I am up now,(5:30 am)because he woke me to say how badly he is doing -but won't let me call anyone, & he said "Don't let the kids see me go out of here in a body bag."He is a DNR- & all tx except gamma-knife have stopped. He refused his steroids all of yesterday & he -as of 2 weeks ago- has 10 tumors of various sizes in his brain-not to mention he has had no tx anywhere else (his torso & pelvic area) in 9 mos.Doc said the cancer is resistant to the chemo now, & the Temodar he had been on didn't work for the mets to his brain. He has a good size tumor on his pitutary gland & all the rest of the tumors are in the right frontal lobe -except one. I need to know if not taking the steroids for 1 day can affect him to the point he has swelling in his brain. Please help- he won't let me call any one.He also started to see the tv guide words all mixed up & he has developed a tremor in his right hand. He was not able to put on his socks for the last 2 days- I did it for him. He has had bouts of severe nausea-which was relieved by disolving anti-nausea strips. He has begun to see "flashes"in his preriph. vision again. He also said some of the words on the tv , on the left side, were missing right before they went all wackey.He is having a severe migrane & it is the first time he has had any h/a problems.

[eric byrne]

Hi,

I just dropped by to check the mailbox,and bang-caught your post,oh boy,someone who really needs some quality support,and sorry you get me,where do I start?well obviously a warm welcome to LCSC,youve certainly got my attention,there are so many more experienced buddies here to help you,and will be along shortly.I am so sorry for you and what your husband is going through,I really dont have anything to offer medical advice lines that might be worthwhile listening to,there is http://www.cancergrace.org available to you which is staffed by an excellent team of oncologists,who will respond to any questions you have about lung cancer,and you wont have to wait too long for an answer either.

I am really plased to meet you,just a bit sorry about the circumstances,hope to have more visits from you,please post whenever, there is always someone here to give you some support,assuredly someone more competant than I.God Bless.

[RandyW]

my first instinct is to call 911 for medical help until they can see him on Monday. Comfort and pain management are always priority 1 in cancer care! I am sorry we have to meet like this but glad we have..

I would call 911 for the pain issues and everything else until Monday when his oncologist can see him! it is better to be in professional hands than at home some times to be on the safe side! at least they have facilities to treat him and keep him comfortable.

My thoughts and prayers go out to all of you at the house today and tomorrow as well. please keep us posted and check in periodically for more answers..

[undefineddawn]

Thank you Eric & Randy,

My husband is sleeping now, thankfully. Eric, I read your story & am happy you are doing well. I have yet to find anyone who has both of the cancers my husband has-at the same time- but I have found this world is so full of compassion & so many people who -if they reach out - can find what they need. I am starting to find I can do this for my kids, my husband & myself.But only after I asked for help. I majorly edited our story- and have been so scared from day to day-that is a relief to just put some of it out there. I seem to keep forgetting things & have begun to write every thing down so that doesn't become an issue. I am going to check out the link you sent Eric, & thank you, but I did call his doc & am waiting for a call back right now. I got him to take his steroids & nausea meds after the thin strip for nausea went to work, but he is still choking on saliva and seems to be making more than is normal. We have "Home Health as a Bridge to Hospice"in place and I was also able to get him to take some of the liq. morphine, it has helped recently for the excessive saliva & choking. He refused EMS, and is a DNR. I have told him that just because you are a DNR - you can still go to the hosp. -but he won't have it. I am not sending him anywhere he does not want to be- also I currently care for 5 disabled people out of my home- they live with us- & I now have 3 relief caregivers to help me with my people I also take care of- it was becoming too much. But I can't send him away if he does not want me to, & I do not want to either. I have the ability to care for him & have now got the help to be able to focus 100% on him & my kids. I am just scared so often, & worried about my family as well.Randy, thank you for sharing the link to your family and such a beautiful thing to do for her as well as yourself.

[RandyW]

glad you seem to have things under control but How do you make time for yourself with so many to care for?? You have to take care of yourself to take care of others!!! So...

Ultimately it is the patients wishes we have to abide by until afterward. Then it is our wishes for the final arrangements i believe! but as long as you have things under control that's a good thing!

[Joppette]

Hi Dawn,

Oh my goodness, you have your hands full. My heart and prayers go out to you my friend. This is a lot to handle. All I can say is that I lost my Sis to brain cancer when I was 30, my Dad 3 years later of the same thing, and I was 40 when my Mom died of lung cancer with mets to the brain.

So I know your life right now. It's not a good place to be. Make sure Hospice is firmly in place and running his care now. In Michigan, Hospice of Michigan pays for all medications once the patient is no longer in active therapy. That was a huge relief when my Mom was sick. She was paying $10,000 a month in meds before Hospice stepped in. They will help you in this journey. They can even provide respite care for you so you can get out and do something for you!

Be sure to take care of you too. With all those children, and your business of caring for others. I know this is easy to say and very difficult to do.

It sounds to me like the brain tumors have taken over and are dictating what he can or can not do anymore. Make sure he takes the steroids, they do help with the swelling. And yes, one day off can make a giant difference. Steroids are not a drug you can go off and on. It can make a huge difference in how he feels.

And try to let him allow the liquid morphine. It will help immensely with his pain, but also his anxiety. Which will increase his pain if not held in control. Did they give him anything for anxiety? If not, see if he can get Xanax. It is a great drug that will help decrease that aspect of his illness.

Lastly, respect his wishes. With Hospice, you should be able to give him some quality time at home. My dad was terrified of being in the hospital. Once he accepted that he was dying, he absolutely wanted to be at home. With Hospice we got the medications we needed to keep him as comfortable as possible.

I pray for comfort you for and the rest of the family and for him.

Judy in MI

[fillise]

I am so sorry to read the news about your husband. I, like others, urge you to get hospice involved as quickly as possible. They help not just the patient, but the entire family.

Susan