How can I be supportive when I'm 4,000+ miles away?

[CitronPearl97]

My brother is a 47 year old, retired veteran who was considered to be in relatively good health, other than knee/back pain from his younger military days. He was recently diagnosed with stage 4 lung cancer. He was being treated by antibiotics, for what they believed to be pneumonia, but when they failed to relieve his symptoms and his cough became much worse, he went to the ER. His wife then called and informed me they found an 8mm mass on his lung, had done a lymph node biopsy and were immediately going to start chemo treatments. She said they are worried about his liver function being compromised and will be administering chemo treatments every 2 weeks, dependant upon that. About a month prior to this, he stood up, heard a crack and felt pain in his hip but he is 6'7" 250+ lbs., not that uncommon. Over the next several weeks he continued to go to work, cut firewood and work at his shop. Who would of guessed an x-ray would show a broken hip? Because of this, I'm scared that the cancer has spread to his bones. Is that even possible? I'm sure there's a lot of info not being passed on to me which is totally understandable. They never expected to be going through this, it's a lot of information to soak in and retain, he knows I care for our dad since his second stroke, I help our grandparents and, I'm over 4,000 miles away so he doesn't want us to worry more than we already are. He and his wife are in Alaska while the rest of our family is mainly here in Maryland. I have someone to take my caregiver responsibilities and offered to fly up and do whatever I could until mid December, only because my husband deploys, then I'd return to Alaska. It's difficult for him to speak on the phone so I text him weekly to ask how treatments are going and let them know they are both in my thoughts. Surgery to replace his hip has been put off until he's through chemo. My best guess is because of the risk of infection and the threat of COVID. I'm sure this puts more weight on my sister in laws shoulders especially since she's transporting him to and from treatments and still trying to work since they've lost his income. There is a GoFund me page set up to help with other costs and he receives his care through the VA. I guess I'm just at a loss not knowing how to be helpful but not pushy. My brother and I have always had a "tough it out til you can't & then ask for help" mentality. I mean, he worked with a broken hip for a month and chalked up his cough to a sinus infection. I don't know what to do for them from 4,000+ miles away and there's so many scenarios racing through my head. Up to this point my family has never had to deal with cancer.   

[GaryG]

Hi and welcome to our group. We all know how disruptive cancer can be where your life goes upside down and you can do little about it. Your only option is patience because it takes time to see the results of his treatment. Since your brother enrolled  by the VA he will be well taken care off. At least he is young enough to be able to fight. There is always hope that lung cancer can be treated and we read about success stories here quite often.  As I said earlier you need to just be patient and hopefully wait for a good outcome. Best wishes.

[LexieCat]

Hi, and welcome.

Sorry to hear about your brother's diagnosis. I agree with Gary--I'd sit tight for now. Lots of us here are Stage IV survivors/patients and are doing well with treatment.       If the cancer has spread to his bones there are treatments for that. I have a bone metastasis and will start taking a medication with my next infusion this week that will strengthen my bones.

I'd just keep checking in every couple of weeks or so--maybe with his wife, to make sure he feels up to chatting. Chemo and other treatments can cause a lot of fatigue and it gets tiring talking to people and updating them all the time, even when you appreciate that they're thinking of you. 

You've made the offer to come out and help, so I'd let it be until/unless they decide to take you up on it. Even helpful visitors can cause stress. 

One thing that might be helpful (if you can afford to travel, maybe you can afford this) would be to send them gift certificates for food or grocery delivery, or a housecleaning service or something (ask before you do that--not everyone would welcome it). 

[Tom Galli]

Citron,

Welcome here. You might encourage your brother to join us on the Lungevity Veterans forum, here. In addition to tips and tricks for surviving lung cancer, he'll receive lots of advise on how to navigate medical care in the Veterans Administration.

Here are some ideas you might want to pass along. I would encourage he apply to the VA for disability. It is very likely his hip injury will be found to have started during his armed forces service. VA disability means a substantial monthly payment that is earned as a result of his selfless service. Moreover, you might encourage him to apply for social security insurance disability. This is commonly fast tracked for those with stage IV diagnosis. Here is some material about applying for SSI disability.

Stay the course.

Tom

[LouT]

Citron,

I think you've gotten some great counsel already so I'm just going to welcome you to our forum and invite you to look around.  Even though you may stand back for a bit you can also find some useful information regarding caregiving in our Caregiver Resources that you can find here.  Good luck to you and your brother.  Stay strong.

Lou

[Judy M2]

Hi Citron, so sorry to hear of your brother's diagnosis. I know the natural impulse is to be of help. In my case, I wasn't in any condition to have anyone visit me when I went through treatments in late 2019 and early 2020 (pre-Covid). Except for appointments for treatments and hydration, I was mostly bedridden due to pain and fatigue. Thankfully my husband was a good caregiver. 

You may want to suggest that his family set up a Caring Bridge site so they can post updates on your brother's journey. This way they won't have to tell the same story over and over. I've found it particularly helpful because it was difficult for me to talk due to vocal cord paralysis. 

You are already a caregiver with lots of responsibilities. It wouldn't do any of you any good if you traveled during this dangerous stage of Covid. In fact, even though he lives 5 miles away, I haven't seen my 99 YO father for a year now because we are both high risk. It's best to support your brother virtually for the time being. 

Many of us here never had experience with cancer either but we had to become "experts" pretty quickly. There are Stage IV survivors on this forum. The science has changed so much in the last few years and continues to move quickly. I wish your brother the best and thank him for his service. 

[TJM]

Citron

As a patient I agree with all the advice above. I know that having my wife be the primary caregiver has worked well. She is "reasonably" nice to me but will also kick me in the butt when needed. That takes a special bond.

My brother was a little younger than yours when diagnosed. We were very close. I talked with him on the phone often and made several trips to see him. Unfortunately treatments were not as available in the late 90s and he did not survive. My point in bringing this up is he knew I would do anything to help him and near the end he asked me to come down and take the night shift. Moral of the story is I think your brother will reach out when he needs you.

Wishing you the best. There is always hope till there isn't. Dont give up hope.

Last thing. If you can, make him laugh. The more the better. Anytime someone makes me laugh I call that a good day.

Peace

Tom

[CitronPearl97]

Thank you all for taking the time to respond & share your experiences, resources & suggestions.
Today I took the opportunity for a little “Me” time. It’s amazing what some encouraging words & a Jeep ride can fix. 
Patience is not one of my better qualities but I’ll use this time to improve upon that.                            The only person I would be helping if I travel, is me. I’m not ok with that. I will definitely be passing on the suggestions & links. I’m sure they’ll find this community as helpful as I have. 
I feel that we do have that special bond & you’re right, he’ll reach out when he feels the need to or his wife will when he needs a lil kick in the butt. Laughter is contagious & I don’t mind spreading it around                               
Thank you all for the encouraging words 

[Steff]

HI CitronPearl97,

I too am a caregiver, for my mom when she was originally diagnosed with lung cancer nearly 5 years ago.  Luckily I got about a year off and I am back at it now that she has leukemia.  Caregiving is exhausting, I like that you are taking "me time".  I live about an hour away from my mom (when I am not living with her as her caregiver, as I am now).  Some ways we keep in touch while I am not there, that do not include a phone call, is an app called Marco Polo.  I'm not sure how tech savvy you or your family are, but this app is like a video text message.  You record your video and its sent to your brother/sister-in-law and they are able to watch it at their own convenience.  I used to do this in the early mornings so my mom would have a wake-up message.  It brightened her day a lot.  It's free and pretty easy to use.  We also use Zoom, but you need to schedule that ahead of time so both parties can attend.  It just helps so much to hear AND see a face.  I also send cards/notes - nothing I buy, but something stupid I make. Or just a sticky note.  My goal with these is just to brighten her day.  I don't expect anything back, but my mom did get Marco Polo figured out and she usually sends me a video back.  We laugh about the fact that I can only see the top of her head half of the time and the other half I can only hear her because she has the camera messed up.  But we are having fun with it!

I've never used this, but have recently seen instead of meal trains, gift card "trains" for meals.  Because of COVID concerns, instead of people bringing over actual food, they send a gift card for a restaurant, grocery store, online store, etc.  The idea is that the family can order a meal or ingredients when they need.  This could be a help for your sister-in-law on those days she doesn't feel like cooking or can't get to a store.  I like this idea better than requesting for funds for food via Go Fund Me because Go Fund Me charges a fee when the organizer accesses the funds. 

You can be 100% supportive from a distance, you've just got to be creative.  And although a virtual hug isn't as great as an actual hug, for those of us who care-give from afar, it's the best we can do and is always appreciated.

Take Care, 

Steff