Hi everyone

ethan31kayla35

Idk where to start. But I will start with please pray for my family. My 31 yr old boyfriend was diagnosed with 3 different cancers almost 3 yrs ago its in his brain lung an bones. He has stage 4. He had full brain radiation about a yr ago. He struggles with remember anything . He thinks he can still do everything like before an when his sickness stops him you can see his spirit crush little by little. He was always a hard working able bodied adult. He provided loved an took care of us all. He started chemo 8 days ago. An he says everyday seems worse. I pray all the time. We all do.. I ask people where to help find things or how I can get medical equipment needed if his medicaid dont pay for it. I am working as much as I can in between caring for him our kids an drs.apts its hard to be there everyday. An we are struggling bad. I just simply need help finding resources to help with medical things everyone I call won't help an sends me in a circle which is even more frustrating. I love this man with all my heart an it hurts when he needs something an I cant help him with it. I am so greatful to be apart of a community that are facing the same struggles we are. I just feel alone an lost.

eDivebuddy

I can really feel how much love and strength you have for Ethan and your family. You have both been through so much already and I want to start by saying that you are doing exactly what anyone could ask. You are standing by him, holding everything together, and searching for help even when it feels like you are out of options. That takes real courage.

From what you shared, it sounds like Ethan’s cancer began in the lungs and spread to the brain and to the bones. That is something we see often with advanced lung cancer. The pain, fatigue, breathing issues, and memory changes are all common in people going through what he is facing, especially after treatment to the brain. None of this is his fault and none of it reflects weakness. The fact that he keeps fighting shows exactly how strong he is. I have or had lung cancer that spread to my liver, neck, and brain. I also had head and neck cancer that may have been a misdiagnosis.

Here are a few resources that may help take some weight off your shoulders. These organizations are used often by people in your situation and they can guide you to financial help, emotional support, or practical aid.

American Cancer Society Helpline1 800 227 2345Available at any time. They can help you find local support programs, churches that help families in crisis, oxygen supply programs, and other services in your area.

LUNGevity Caregiver Support
forums.lungevity.org
They have an active online community where many caregivers share what has helped them. It can be powerful to talk with people who truly understand what you are going through.

CancerCare
www.cancercare.org
They have social workers who specialize in helping families with limited insurance or Medicaid. They can assist with transportation, medication support, and counseling.

Also check with the financial counselor or oncology social worker at your treatment center. They can often help with copay assistance, explain what resources might be available near you, and connect you with smaller local programs. My financial counselor helped me receive copay assistance from two different drug programs that covered up to fifty thousand dollars a year. These local contacts can be extremely valuable.

If you want, let us know which chemotherapy he is on. Many of us have been through the same medicines and can share what helped with side effects and with pain management. I also have a post on LUNGevity with my best tips for getting through chemotherapy. It is here:https://forums.lungevity.org/topic/53856-my-best-tips-for-getting-through-chemo/

You can also read the beginning of my cancer journey here:https://forums.lungevity.org/topic/53203-the-real-new-normal/

I am keeping you, Ethan, and your children in my thoughts. You are not alone, even if it feels that way right now.

ethan31kayla35

https://csn.cancer.org/discussion/comment/1724882#Comment_1724882

Thank you I will be looking into the things you've sent. I appreciate you taking the time to message me back. I will find out the name of the chemo hes doing.. I also appreciate the help. I want to be able to help him as much as possible. And I feel very helpless lately. I watch someone I care so much about suffer an it truly breaks my heart.

John15_16

https://csn.cancer.org/discussion/comment/1724894#Comment_1724894

Stay faithful and strong Ethan, you and your family. When you feel hopeless, remember God is taking care of your loved ones and you. God will lift you up and help Ethan and your family every step of the way. God loves all of you.

cmpattberg

Hi. I'm stage 4 lung cancer. Started treatments (chemo, radiation and then immunotherapy) in Oct 2020. Spread to my brain and had surgery to remove tumor on upper left side of brain. Also have a tumor in my cerebellum. They were going to do radiation but found a new oral drug (entrectinib) that I could take. Evidently radiation in the cerebellum can be tricky.

Entrectinib gives me several side effects, but some could be from the brain surgery.

You are doing an outstanding job helping. I have chemo fog too. Memory just not like it was. Slower in my responses and talking is 'off' a little bit. Wife, God bless her, says I'm a 'different' man.

You could use some help from other caregivers. There are groups available online and live. We are part of Gilda's Club out of Minneaplis, MN. They say they are all over the country, try to Google them. We have online support for me and separate one for my wife. Quite helpful for both of us.

We are old and retired (early 80s) so we do not work. If you are working, does make it a bit harder on you. But you need 'your' time and 'your' rest - somehow you have to be sure that 'you' are in the best help you can be. Do not feel guilty about taking care of 'yourself'.

It is devastating for both of you. I took up writing poems to get stuff out of my head. Writing helped me not dwell so much on all my cancer/physical problems. In about a years time I actually wrote 85 poems.

Then I learned how to put them in 'Kindle' format and ultimately loaded my 'book' on Amazon. I tell you this because all the steps to getting it in proper formate and loading took quite a bit of self education. And the busier I was the better off I've been.

And last month I started to video myself while reading my poems. Then I had to learn how to make them available online (YouTube). I've loaded 4 of the poems online and will continue to do this. Busy, busy is good for me. The poems are all about the anguish of having cancer. So they are about 'my' cancer journey. Some are funny, some are sad, some hurt, some uplift. I think your boyfriend will relate to them. And they would give you a better idea of what he is going through, it's not just physical.

Here is the YouTube like:

https://www.youtube.com/watch?v=vzET3CBKKdo&list=PL_SGG-WJBbiw7Xfsyy-z2qVBEqHN8B56Z&index=3

cmpattberg

Don't hesitate to ask me questions. I'm been dealing with this cancer now for 5 years. And if there is anything help with, I will help.

Prayers coming your way as soon as I post this.