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I’m sorry about your diagnosis. When you meet with your relatives, soon I hope, make a decision on your Father and act on it. He needs to go somewhere else NOW, because your life is about to get very very busy (with treatments and appointments) and the treatments will probably make it difficult to take care of yourself. Taking care of him is out, period.

I wish you hope, serenity, and the best medical care in the coming days.
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someguyinca Aug 2023
We’re meeting today.
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Please look into CCRC living in California...............they start off in Independent Care and can stay until death with full comprehensive care; tell him your survival will be based upon your level of coping with stress, so you need his total cooperation. If the place is near you, you may be able to visit more often or stick to ZOOM/ FaceTime. (search CCRC living in California)

I hope you spend your time researching your own healthcare and let the professionals take good care of Dad. Wishing you much success in this fight for your life predicament. P.S., Look into a Wellness Resort if you can possibly fit that in your schedule....................mindfulness meditation can help you sort it all out.
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I was diagnosed with breast cancer earlier this year. I underwent a mastectomy.
My mom has dementia and my dad has diabetes. They live together at an ALF, and I typically visit at least once a week, unless I’m also taking them to doctors appointments. I have a full-time job as a teacher, so my visits are usually on the weekends.
I told my dad and mom about the cancer surgery and I asked my younger sisters to “pick up the slack” during my recovery. I didn’t expect much empathy from my dad (a good thing, because I didn’t get any) and my sisters did very little to contribute their time or energy. I don’t regret telling my dad the truth, because I needed to do it for myself-so I could process what was happening to me. It helped me take a breath and step back, to look at how much I was already doing for my parents and re-establish some boundaries for the good of my health. Ten years ago if someone told me that I would have to fight cancer without the love and support of my mom, I would never have believed them. She isn’t aware of my battle with cancer, just like she can’t acknowledge the birth of my daughter’s first baby, my mom’s first great grandchild.
My parents can’t see past their own immediate needs. Nothing else matters to them. Nothing else will ever matter to them again. It’s no one’s fault and I am sick of wasting precious energy on guilt or resentment. It is what it is.

My advice: don’t be afraid to be selfish as you deal with your health crisis. You must prioritize your needs at this time. Anyone who really loves and supports you would understand this and encourage you to do it.
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Someguy,

I'm very sorry about your diagnosis, and I'm absolutely NOT trying to make light of your situation, but remember Lance Armstrong:

"On October 2, 1996, at the age of 25, Armstrong was diagnosed with stage three (advanced) testicular cancer (embryonal carcinoma). The cancer had spread to his lymph nodes, lungs, brain, and abdomen." We all know how his story ended....I believe he is still cancer free.

So you never know, right? Keep thinking positive, and do what you can to support yourself. The first thing is to stop spinning your wheels with your dad if he won't agree to assisted living. Dealing with him (even if he's not hysterical, but just being stubborn) is going to go against you mentally and physically...both of which HAVE to be dedicated to YOU now, not him. So often the caregiver goes before the person they are helping. Try as hard as you can to ensure that it's not you. You can always visit him as often as you reasonably feel able when you are recovering, if he moves into a place near you.

Best wishes!
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Nearly everone gave you good advice. You will be unable to care for your dad when you are in the battle for your own life. My daddy died with mesothelioma from working in the shipyards during World war II. That was a long time ago, and thank God times have given us better treatments. You are going to need to take care of yourself and put aside as much stress as you can. You are in my thoughts and prayers. As you said, you have to get your affairs in order ASAP. Chemo and radiation will make you sick and weak, believe me on this.
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someguyinca: It is imperative that you take care of your own increasing health needs, else you cannot care for anyone else. As you stated, your father has enough money to go to the nicest assisted living place; let that give you some measure of comfort while you tend to your health. I am so very sorry to learn that you have lung cancer.
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Sorry that you are sick.

Thank you for giving us an update.

Be a little selfish right now and also avoid conflict with your dad. You need to focus on treatment, healing and recovery. Do not focus on any problems that your dad is having. Outsource his problems to others and shut your mind off from that.

Wishing you the very best.
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Hi,

Just wanted to update things. There was no good news at the oncologist. I kind of lost it there, because it was worse than I imagined it could be, they offered Ativan, and I took it. It helps a lot with getting the worst of the thoughts out of me. Maybe I should have taken this years ago.

Although, there's still something weird going on, every doctor looks at the CT Scan and say's they don't think it's cancer, but the biopsy said it was. I also wonder if there's a small timing issue here because the CT Scan was in the middle of a treatment for an infection. They may not be seeing what's really going on.

I get my first dose of chemo in 2 days, will meet with UCSF the week after and I should have a better idea of where things really stand, although in a way I kind of don't want to know. I kind of want to Han Solo it "Never Tell Me The Odds".

My cousin is taking over care of my father, he seems OK with it, cleaned the whole house to show us he could take care of himself and keep living there.

Weirdly, as I write this I feel really good. I'm trying to slam calories for the chemo, which is followed by the PET Scan, which requires a protein diet the day of the chemo.

Anyways, as my aunt put it, go to bed, if you get up the next day, it's a good day, repeat. And I just read a story of a 38 year old woman who has survived 4 diagnosis of stage 4 lung cancer over 13 years, and like me she never smoked and her symptoms sounded a lot like mine.

I'll keep getting up.

Thanks for your support everyone.
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NeedHelpWithMom Sep 2023
Wishing you all the best. Sending hugs and support your way.
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You are the number 1 priority. I was diagnosed with metastatic lung cancer in 2019 while I was a full time care giver. I lost my hearing completely. After much evaluation, I was diagnosed with a rare auto-immune disease (not cancer). Thankfully, they had a medication, given by infusion, that put me in remission. I am well and my hearing is better.

I decided to tell my mom since I was not sure I would be around to take care of her. Her reaction was “if something happens to you, who will take care of me?”. She was not normally selfish but her dementia made her afraid of everything. It just made things more stressful for me! As you put it, an additional burden. My caregiving duties did not change even through all of the diagnosis and treatment.

I am not sure how your dad will respond if you tell him but like others who have posted, put yourself first. Particularly if you have friends and family that can fill the gap.

You can come through this but it will take all your strength and determination. You will need every bit of your energy to take care of yourself.
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Hope you are getting multiple opinions and hope you're getting therapy to cope with all the emotions and medical interventions.

Wishing you wellness.
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Some guy, I really appreciate your update and wish you a good outcome.

Your ONLY job right now is to concentrate on your treatment and stay as well and as fit as possible. (((Hugs)))
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OMG, this is a roller coaster.

We were driving to the oncology center for my first chemo, 10 minutes out, and the phone rings. They found a mutation, so I’m going to be treated by a pill not chemo.

I don’t know what that means, if my odds just went up or not, but I know chemo sounded horrible and it means they must know what it is now and they have a specific treatment for it.

I seems like this has to be the first positive news in awhile.

Maybe, whatever you all are doing is helping.
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NeedHelpWithMom Sep 2023
Wishing you all the best, someguy! Please keep us posted on your progress.
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Some guy, I think that's great news!

I also think you need to have a sit down with your oncologist (bring a friend along to listen) and see if you can understand what this means. Yay you!

Has your cancer been staged? Small cell or non-small cell?
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So, here's the good bad news.

I have Stage 4 cancer with a ROS1 mutation. The doctor at UCSF said this was more common than you think because we don't screen for lung cancer like we do other areas. They missed it when I was in the ER for 3 days and took a CT Scan. And in my case it had already traveled by the time they found it. I've known this for awhile based on labs but didn't really want to face it.

In a weird way, had I smoked, or been in worse physical shape, they might have caught it sooner. Or if I had a very good and experienced general practitioner.

The good news is that there are meds. They're very expensive but between my insurance and manufacturer programs they'll be essentially free. They don't work forever but they do fight the cancer and my condition will improve. There is another drug in trials so when this stops working, we jump to that, which should be out of trial by the time I need it. And hopefully, by then, there's another drug.

The side effects are similar to chemo, but about 10% to 20% of the severity and variety.

Eventually, this could all end up in chemo, but it buys me time. Time to live.

As for me, I don't know how I feel. They gave me some low-dose ativan, which takes the worst of the dread away. It's such a weird place to be, and I never imagined this happening or that I would even have a chance to continue living.

Right now I just want to stay positive, get better, and start living.

Thanks everyone for your support.
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So, here's the good bad news.

I have Stage 4 lung cancer with a ROS1 mutation. The doctor at UCSF said this was more common than you think because we don't screen for lung cancer like we do other areas. They missed it when I was in the ER for 3 days and took a CT Scan. And in my case it had already traveled by the time they found it. I've known this for awhile based on labs but didn't really want to face it.

In a weird way, had I smoked, or been in worse physical shape, they might have caught it sooner. Or if I had a very good and experienced general practitioner.

The good news is that there are meds. They're very expensive but between my insurance and manufacturer programs they'll be essentially free. They don't work forever but they do fight the cancer and my condition will improve. There is another drug in trials so when this stops working, we jump to that, which should be out of trial by the time I need it. And hopefully, by then, there's another drug.

The side effects are similar to chemo, but about 10% to 20% of the severity and variety. While chemo kind of wrecks everything, this will probably only trigger a couple of much more minor side-effects, but there are some serious one's too.

Eventually, this could all end up in chemo, but it buys me time. Time to live.

As for me, I don't know how I feel. They gave me some low-dose ativan, which takes the worst of the dread away. It's such a weird place to be, and I never imagined this happening or that I would even have a chance to continue living this way once it did.

Right now I just want to stay positive, get better, and start living.

Thanks everyone for your support.
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AlvaDeer Sep 2023
Look on it that you are living with a "chronic disease" you will be living with until you die. And yes, the treatments are progressing at very rapid rates. I took adjuvant chemo for six months. To tell you the truth it wasn't all that bad other than I hated the "idea" of taking something into my body capable of killing cells! Bad taste in my mouth after infusions was kind of the worst of it other than THE FEAR monster. It took me a while to learn that looking it in the eye, planning out my demise, kind of robbed it of its power.

Thank you so much for your update to us because a lot of us are thinking about you and hoping for you. I have a Bristish friend who lived 6 years with Stage IV and who, just before he entered Hospice was not debilitated other than using O2 in a tank. He and his wife still went a whole lot of places and enjoyed life and his attitude was positive to his end, which was for him at that point eased by his extreme gratefulness for the medical community and for truly understanding how good life is even when it's tough. Bill was, to me, a marvel.

Keep on keeping on guy.
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Update from SomeGuyinCalifornia
Nov. 4.23

"Just wanted to do a quick update.

The drug is everything it's advertised to be. It's remarkable how much less cancer there is in me. It's also remarkable how much there was. I deliberately didn't look at the initial PET scan, "just tell me what to do", so this was the first time I'd seen it, and it was all over the place: brain, lungs, back, hips, maybe the liver.

And the drug is tough, I've been hit with a lot of side effects, but given the alternative, who cares, I'll live with them.

Regardless, I'm still here, and likely for a few years to come. It's been a good week."

That's FABULOUS news!
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Someguyinca, Praise The Lord!

May you be completely healed and live a lovely, long, happy life!
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Someguy,

So very happy to hear that the meds are having a positive effect. Will keep you in my thoughts.
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SomeGuy,
Thank you so very much for your update. It is wonderful to hear of your good progress. Appreciate you keeping us in the loop on this journey of yours, and so glad to hear your news.
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OP glad you are getting treatment for your cancer and it is going well. How is the situation with your dad?
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someguyinca.

I admire your relatively positive attitude despite all the side effects . Perhaps you could look into if there are volunteers to drive you to the store , walk a trail with you. Possibly look on your county website, enlist the help of a social worker . I don’t understand why the doctor could not refer you to a support group for cancer patients . It should not matter what meds you are on . It’s still a scary disease and you say you want someone to talk to . Maybe you will make friends at a group .

If your Dad ends up in the ER and you get contacted, tell a social worker to place him.
Good Luck
((((Hugs))))
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Hi everyone,

Just saying thank you for the thoughts. I'm still here.

It's been a ride too. I have a relative totally pissed off at me for reasons I grasp not at all but apparently it has something to do with something 35 years ago. When I reached out with my cancer diagnosis he showed up to meet me angry as hell. I thought he was going to take a swing at me.

On the funny side, I kind of lost it, nope I lost it, cried at the drop of a hat, for a couple of weeks. One of my friends saw it, couldn't handle it and called a mutual friend she hadn't been speaking with because she had, had breast cancer, and now they are talking again.

So, I'm a uniter and a divider.

I had someone helping with the caregiving and when I lost it, she lost it, and I discovered that I'm kind of a piece of shit, apparently, because I'm not up to the standards of Sam Neill. I think it isn't fair, because I was like him until I lost my vision followed by losing my s*** over it. I imagine Sam Neill isn't really Sam Neill either. It's easier to talk about a living a great life and facing death, when death's door is a bit further away. Ask me how I know?

Honestly, it's hard, and scary. I did find a guy who is as close to a specialist in my specific mutation, only 300 miles away, and we're going to see him in a couple of weeks. He's probably one of 20 people with fairly high-level experience with the mutation in the world.

One interesting aside, as I'm no longer my father's caregiver, and I'm going through some of the same things he is, I have more sympathy and we have more in common. My vision is off, and his is way worse than mine, hopefully a side-effect of the drug in my case, but could be a metastases or tumor in my brain, I've definitely got some. Regardless, we can talk and commiserate on the same problems, and we both need outside help.

I sure never saw this coming but I'm still here, with normal SpO2, 10,000+ steps/day, weight training 2-3 times / week and indoor cycle a couple of times / week. Even started blogging and may buy a piano to teach myself how to play a tune or two. I've got the time.

Take care everyone and don't "LOSE YOUR S***".
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Llamalover47 Dec 4, 2023
someguyinca: Thank you for your update.
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