I’ve gotten some pretty serious news from my doctors. We don’t know what it is or where exactly I got whatever it is, but there is the possibility of it being as serious as it gets. I’m under orders if certain things happen to go straight to the ER. I think, and I’m not joking, that the doctors don’t understand why I’m still standing. Now, it’s not impossible it’s something that’s fixable too but, regardless, I need to plan for the worst and hope for the best.
I want to have a conversation with my father about where he is in his life, a come to Jesus, conversation so to speak. He can’t live alone, not without help, but he’s completely deluded about his abilities and refuses, ever, to do things that would help him. That’s not true, he eventually does it, sometimes, just always months and years late.
But, if I tell him what’s going on with me, he’s going to freak completely out, and I mean completely out, so much so, that he’ll add to my burden.
What I’ve done is talked to the 3 people who are his closest friends and backup caregivers, told them my situation, and kept the information from him. Two of them confirmed my concerns about his ability, one of them pretty much sounds exactly like me when we talked about him.
If I pass away, he’ll have enough money to go to the nicest assisted living place in the area and stay there for as long as he needs, unless he lives to 120, and possibly even then. He would be around people, etc. And if he wants to hide in his room, he can sit there and do that too.
Any thoughts?
Again, we don’t know what’s going on, and modern medicine can be amazing, so maybe I’m wrong and I’m going to be around, but it’s damn scary.
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***".
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))))
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.
So very happy to hear that the meds are having a positive effect. Will keep you in my thoughts.
May you be completely healed and live a lovely, long, happy life!
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!
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.
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.
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.
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?
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.
Your ONLY job right now is to concentrate on your treatment and stay as well and as fit as possible. (((Hugs)))
Wishing you wellness.
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.
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.
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.
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!
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.
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.
I wish you hope, serenity, and the best medical care in the coming days.
I have told my father what I know and that I can’t be his caregiver any more. I’m going to meet with some family members about him soon. He wants to try and do it on his own.
A couple of people asked about my family, unfortunately, I never married, so I don’t have that resource. I do have some friends and relatives stepping up to offer help so I won’t be completely alone, but I will be alone for some of it.
There is one small benefit to this, it does put things in perspective, and it’s liberating in a small way because some things just don’t matter now.
Again, thank you for your thoughts and support.
You have cancer you need to focus on yourself. You dont have time to take care of him and entertain his fantasy of self sufficiency.
Dad needs to check his wants and do something he doesnt want to do because he loves you and cares about you too. Now the question is will dad or will he remain selfish and self centered?
My guess is dad won't make this easy for you.
You must concern yourself with your immediate needs....Prayers for you. and also use your support people.
Moreover, the conversation about your dad needing to face getting help will probably be easier.
My mom was like this. Every thing was a catastrophe and really stressed me out. But my husband always encouraged me to just tell her the truth, whenever the consequences. I think it’s good advice. As someone above mentioned, your dad may surprise you, my mom did many times .
Do what you feel is best for YOU, to tell him or not. Confer if you like with an Elder Law Attorney or your own attorney for discernment, options. And, perhaps confer with your father's PCP for their advice concerning consideration about telling him.
I would probably only give some of the info and withhold anything that you think would cause more trouble for you at this time.
My observation is that sometimes seniors (90s plus) can be quite stubborn in their refusal to take help or follow instructions that might make the caregiver's life easier. I finally had to put my foot down on one thing in particular. Things worked out once I held firm.
My mother in law is 101 and is extremely selfish at the moment and doesn't realize or care that her children are in their seventies and have their own health issues to have to deal with. Everyone is not going to live to be her age and the focus cannot always be on her.
I am glad your dad has several close friends that can rally around him while you take care of yourself.
Good luck and keep us updated!
I can tell you that personally because of my mom and the stress I’ve encountered I now have health issues. I r lost a lot of weight. I have chronic pain as well now. I faced with the same dilemma.
Do not tell your father the severity of the issue. Just say hey dad I am
not feeling great and I need to take a step back to take care of myself. And right now you need to do that. Be kind to yourself and don’t push yourself.