Anyone on this Stage IV journey alone?

dorimak

I went through separation and eventually divoroce over five years ago and received stage IV dx about 18 months later. My ex was subsequently diagnosed as bi-polar. Two of my best "friends" deserted me. I realized that our relationship was always about me solving their problems. I have three other girlfriends who coincidentally all decided to go back to school to change careers so are holding down jobs and studying so little time for anything else. the rest of the circle of other friends were couples and they all vanished when we separated. My family live in Australia and Ireland and my son lives in another state. I was living well with the disease until an incident this summer where RO had me on excessive steroids (as indicated by multiple other medical professionals including an RO) during radiation to retreat one brain met. i had joined a golf g roup and was making new friends but the almost two months on steroids brought me to my knees. My PCP says it can take years for the body too recover from being on steroids for longer than two weeks and i was on them for two months. I still don't sleep properly, my GI system is still recovering, and I have barely any energy to do anything. I had to hire a nursing service to take me to an appointment for an endoscopy. I fear how I will manage for the future and am so desperately lonely. I wondered if anyone else was in this situation.

SchnauzerMom

Dorimak, I hurt for you when I read your post. I wish I could be your friend in real life. Sending you a virtual hug and warmest thoughts.

berries

I’m so sorry to hear you are going through this. Can you join a local therapy / support group? I will say, although it feels like you are alone. You are NOT. Several are in your place and looking for you as a friend right now... give yourself time and space and be gentle with your feelings. Please know you can also reach out to me. I will PM you my phone number if you wish to call or text someone when you’re feeling low. But I promise you, YOU ARE NOT ALONE. *hugs and prayers for you, my friend*

candy-678

Dorimak- You are not alone. I am so sorry to read your post and hear what you have went thru (and continue to go thru). I think we have PM'd in the past.

How about your son? You said he lives in another state. I know you probably don't want to move, but he is your son and you are his mom. Could he, would he, take you in as things get worse and you cannot handle things on your own? You don't have to answer that. I know family can be frustrating.

I was scrolling thru the topics and when I read the title of this Thread I had to click on it. I too am alone in this Stage 4 journey. My siblings lives close, but does not ever come with me to appointments. They even forget when my appointments/scans are. "You had an appointment today?", they will say. My friends are busy with their own lives. I am single, no kids. I live alone. I fear what things will look like when I get worse. I seriously don't think my siblings will want to care for me when I cannot care for myself any longer. I REFUSE TO GO TO A NURSING HOME TYPE FACILITY. I want to live in my own house till the end.

PM me anytime.

exbrnxgrl

dorimak,

Not exactly in your position, but I do live alone (dumped the husband years before bc). Sounds like recovery from the steroids is a real challenge. When you’re feeling better, consider some volunteer work, groups or clubs for things you’re interested in etc., and a good bc support group. It is disappointing when friends let us down but since we can’t change the behavior of others, we have to forge our own path. Of course, there is always bco 😊. Take care

DivineMrsM

Dorimak, candy makes a good case for possibly moving near your son.

Where do you live? In a house? Are you senior citizen age or on disability for the mets? Would you consider moving to senior citizen housing?

My dh recently got work as maintenance man for a 60 unit, income based, senior citizen building in our town. I'm impressed with it. They've recently extensively remodeled and updated. There's a commons area where there are get togethers, movie night, puzzle building and a small library. It's a nice little community within a community, and I wouldn't hesitate to live in a place like that if I ever wanted or needed to. Also, our county has a Prime Time van that comes and picks up seniors age 60 or older if they need rides to dr appts, to get groceries, even for hair appts!

Could you look in to things like this where you live? Also, consider reaching out to a local church. Ones near me are always willing to help someone in your kind of situation. There may be a lot of services available near you and you have to seek them out. That's what I'd do. Taking action will make you feel better, and more in control of what you can control.

I had to use our Prime Time services this year, even tho I have family around. But I had to see my foot doctor a week after surgery, could not drive, and every single person I knew was unavailable. So I called Prime aTime and it couldn't have gone better or been a nicer experience. I will call again if I ever need to.

Sadiesservant

Dorimak,

I feel for you in your situation and also understand how challenging it is. While I currently have my mother as support, she's 88 and, god willing, I will out live her. At that point I will be alone. I'm single, no children and, to behonest, focused so much on work and home that I failed to nurture friendships as I should have. Now, most find it difficult being in my company regardless of my generally up beat attitude.

I worry about what will happen when my body starts to rebel. But, there are services out there to help us. Use them. You deserve to!

As others have said, you are not alone. Sending hugs from Canada.

dorimak

Thank you all for your heartwarming kindness and suggestions. My counselor suggested a support group. I had a friend pass away last year after living with ovarian cancer for ten years. She had joined a group for a while but it was so difficult because in a stage IV group, you have to deal with the loss of members passing away. I used to spend more time on this site, but have found it so difficult when a member passes away. To be honest, i even find it difficult reading how others are suffering so much or younger members and those with young children. I was getting very depressed for everyone.

I'm just 62 so too young to consider going into a facility and am still able to care for myself. My son is just a couple of years out of college. He lives in downtown Denver in an apartment and it's really expensive there. Up to a couple of months ago he was on the road during the week where he flew to a company at like 5:00 AM Mon and got back Fri night so little time at home. He's now in a new job. He's wanted to move to Denver since he was in College but worked here for a while. He accepted the job offer and then I got the brain mets DX and he wasn't going to go, but I felt if he'd stayed it would have felt like he was hanging around waiting on his mom to die. He has good friends in Denver and not as much to do here so I recommended he go. He had severe depression at one point in college and was suicidal. I have seen him transform since he moved and I was also feeling and doing so much better then. I sold my house and moved to an apartment earlier this year and had moved three years prior after the divorce so I just couldn't handle another move honestly even if it was only across the street. We did decide worst case scenario he could come back but for now I'm able to take care of myself and would prefer he continue to build a career and a community where he wants to be as he's estranged from his father and he too has no other family and is an only child. He has a few friends there that go all the way back to grade school so that gives me comfort. He does call me every day during the week. Honestly he's not well equipped for moral support and I walk a fine line with keeping him informed but trying to worry him too much. I wouldn't want to discuss my fears with him as sometimes I get irrational or really pessimistic. I think I'm just depressed.

Anyway, hopefully if I get to feeling better from the steroids I can get out more. I think that's my issue is not having the energy. Had a docs appt today and was wiped when I got home.

Hugs to you all. I do so appreciate you responding to cry for help. DivineMrsM what is Prime Time Service?

DivineMrsM

dorimak, I’m glad your son is finding solid ground on which to build his life. The early 20s are a difficult time, they were the hardest years for me. I truly understand your not wanting to interrupt his momentum. Our world as parents goes better when our kids do well.


Prime Time is a county-wide senior citizen organization where I live. They offer many services to anyone over 60 years old. This includes meals on wheels, transportation, support groups and more. They also have a center where seniors can go get lunch every day for $2 and can socialize. It’s funded by a levy and every time it comes up for renewal it gets overwhelmingly voted for.

You could check to see if there’s a similar program near you and see if they offer any services you could use. Age 62 often qualifies for senior citizen status, and like I said, our Prime Time services are available beginning at age 60.

I also can understand your needing and wanting to stay put where you are. Tho I did want to mention I wasn’t referring to moving to some kind of facility . The place my husband works is an apartment building where residents live independently, each has their own apartment with updated kitchen, bath and some with balconies. Many still live full lives, going out to breakfast with other residents, going on beach vacations, visiting out of town family members for extended stays, one man even goes out drinking on the weekends!

candy-678

Dorimak- I don't have children, but I do understand your thoughts on your son's situation. And also not wanting to up and move yourself. Hopefully you can find a support group to join. Or maybe some volunteer activities you can join for socialization and being away from cancer for a bit.

You can always PM me anytime and we can chat.

Hugs.