My Husband, My Life, My Love, My Family, My Cancer
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where I want to be!!!!0 -
Well, one thing DB did was mention it to our MPP. She mentioned the landlords putting us out in the street and mentioned me by name as a cancer patient on disability being evicted. Was surreal hearing about my situation in the government.
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Mel I wanna be there too. Wake up and walk a short walk to the water all the while smelling the salt and humidity crunching through pristine white sand.
Mara when they put it in words that is exactly what they are doing to you. Your brother and sil have your back so good to read how they support you. Hope your day is full of long walks and fluffed laundry 🧺!
Have a good one ladies.
Tany
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Tanya~I like your new avitar (sp?) that’s how we are in this living room. Nicely chosen
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I am doing a combo of mile long walks at home, Leslie Sansone after meals, doing surveys and other money making things, gonna squirrel away as much as I can and have already done a wash. It is in the dryer, I have found that if I tumble on no heat first for about an hour, I can dry on heat for about 10 minutes and it is dry. For some reason, the new dryer is quite efficient at drying at no heat.
I did write an email to my city councillor to suggest mandating that 10 to 20 percent of all these apartment buildings be designated for affordable housing, even if they use a small floorplan for singles and families. Said that it would take the load off the 6000 people waiting in london to get into housing. My ultimate goal will be to get into it and then I will have no worry.
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Holy smokes! This thread moves fast in a few days!
Mara - I'm so sorry about all of this housing drama. I agree with the sentiments that this does not sound legal. I'm glad you have people there helping you fight this. My younger brother is in a similar situation. His landlord sold the house they have been renting for the last 8 years. The vacancy rates for rentals in all price brackets is less than 1% right now and much worse for low income people so he and his family are moving early next year to North Carolina to find cheaper costs of living. I'm sad about that. I try to tell myself it will be a great reason to visit the east coast, which I haven't seen, but the distance will be hard. It's also getting harder and more expensive to travel so that will be challenging also. I'm glad you are finding some options. I would offer you my second bedroom if living in Oregon were an option for you.
Laurie - I'm so sorry to hear the treatments aren't working. I'm glad you are so at peace and focused on good times at Disneyland. I get it. I really do. I'm also very at peace with whatever comes. His will be done. My prayer is to outlive my parents because I just don't want them to have to go through it all. After that I am at peace with whatever may be. My prayers for you and your family as well. May you have many good days ahead with your family and friends.
Hugs to everyone. I'm sure I am missing some of the specific stories but I think about and pray for everyone here. I just had a bone scan that shows no major progression from the last bone scan in September. I was concerned because my pain levels have been higher and I am struggling to do my job. I think I see the writing on the wall and am looking at other opportunities I can do that may not be as taxing on me. I got stuck for a while grieving of a life that could have been but find that is not healthy or productive so I am working hard to reframe it into making the most of the life I have. Thus my extended absence from posting. I try to keep up but I was lurking for the most part. On my bone scan last week I was confused. I had the impression that I was NED based on my PET scan from May. The report read "near to fully complete resolutions of lesions seen on previous scan." In September and November there was some uptake on my bone scans however. My MO moved my appointment up to Nov 29th and I want to ask him if maybe the reading of NED in May was incorrect. I don't understand why I have continued uptake in my spine and legs if I am truly NED although I do understand bone scans pick up non-cancer processes as well. It just doesn't sound like there is no evidence of disease. I'm just wanting that clarification for my own piece of mind. I am back walking with a cane and struggling quite a bit with mobility. I have asked my PCP for a referral to a physical therapist. I'm thinking if the bones are truly stable maybe I need to approach things from a different angle and work on the muscles. I will appreciate his insight on this. It will only be the second time seeing him since my previous MO retired.
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Emac, that is very nice of you to offer for sure. I am touched by this offer. In my case, it will be a long time before the landlord can evict us if at all, I am stopping t he search for now and concentrating on treating surveys and other little ways to make money and will put that money away. If I can make 200 to 300 a month, I could make rent on another place until I get into housing. I treat the money making stuff much like a job now when I am here and not doing anything.
I like how you think of all possibilities when it comes to your mobility, not just bone related but looking after the muscles too. That should surely help a lot.
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I mentioned on here that my Palliative Care team wanted me to get things lined out-- Power of Attorney, Will, etc-- and that I talked with my sister and she agreed to be my POA. So I am still working on all that. I talked with my attorney last week about my Will and he is working on revising that and he is drawing up the papers for Power of Attorney for Finances. Then I messaged my Palliative Care team that I needed the paperwork for the POA for Healthcare forms and that my sister and I talked and she agreed to sign them.
So my Social worker called me today about sending me the forms and etc. Then we talked about not only my sister being the go-to person if I cannot speak for myself (POA), but we talked today about me being a "full code" versus "do not resuscitate". I told my Social Worker that I, at this point, want to have CPR if needed. I want everything done, right now at least. I know that when things get worse with the cancer, then, duh, I would let nature take it course. But, say for instance, I had a stroke tomorrow, or was in a car accident, I would want the chance to recover right now. That my cancer is doing ok right now and that I want to still live. The social worker did not say in so many words, but I got the impression he thought I was in denial about Stage 4 cancer and that I should agree to a DNR-- do not resuscitate. Like I said, he did not say that, but had that tone. I plan on mentioning this at my next Palliative Care meeting with the doc and the Social worker in attendance.
Then, after the phone call, I was thinking about it all. We do the Covid vaccines-- I got the 2 and the booster. If I got Covid, I would want the hospitalization and vent and everything to pull me thru. Should, as a Stage 4 cancer person, I give the vaccines and hospital bed to someone else? No. So why be a DNR just because I have Stage 4 cancer?
I know this is an individual decision, and I respect a person's choice, but what do you all think?
Are you "full codes" or "DNR's"? Do not answer that if you do not want to. I do not want to upset anyone. Just wonder if I am in denial about my Stage 4 cancer.
Do you guys have the papers to say you are still a full code?
This just really rattled me today.
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I am a full DNR for any reason, I get hit by a car, get a disease etc, don't bring me back. I know I need to get some sort of medical alert bracelet stating this, already got the form, family is full on board as well. Decided that as a single person, I did feel that if I was that bad off, did not want to be brought back. That is just my own value system, that is not a wide held belief for every single person out not to want to be brought back of course. Having read about what the social worker implied that just because you are stage IV cancer, it makes sense to go DNR. Uh no, that is up to the person, as you said there are other things that can injure you and you want to be brought back. Clear as day for me and Stage IV people certainly have the right to expect being brought back unless legally they have set up DNR.
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Candy, I also have a DNR, but I think if I was able to get better, my husband would try to treat. It shouldn't be an either/or until there is no more either, if you know what I mean. I would discuss with your sister that if there was treatment and you have a chance to pull through, she should let them treat. I may be naive about a DNR, but I would assume that's if there are really no options left. My husband's aunt had a massive heart attack. She was hooked up to machines, but her husband made the choice for them to stop treating because there was no brain activity going on.
So just looking at what a DNR means, it looks like it means if your heart stops beating or you go into cardiac arrest. If you’re on a ventilator and still have a heartbeat, I don’t think that would necessitate the DNR.
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well, i'm currently dnr but I mull over it regularly
Thing is, the chances of recovering from a code IN hospital are low even for healthy patients. I've said that if it's a small arrhythmia during a procedure, and they think they can get a stable rhythm with a shock then they can try but no long chest compressions...
I don't think I would have been intubated if I got covid. (My orders right now are dnr/dni)
Often if you run a code on someone even if you get them back they don't regain consciousness or they regain but they have severe complications, a long ICU stay, drains everywhere, intubation, tube feeding, dialysis, etc. It's hard to come back from that. And the cancer will make everything worse.
So then if the medical team says there's little chance of meaningful recovery, the substitute decision maker needs to make the call to stop treatment and the pt dies in the ICU, just days or weeks after the cardiac arrest.
I've seen stats between 25-44% survive the initial procedure but the issue is how many get discharged home and are anywhere near normal function. Like what if I survive but have to live in a care home?
Here's an article about how we tend to overestimate the benefits of CPR. https://www.reuters.com/article/us-health-cpr-expe...
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KBL, our advance planning asks about both, trying to get a heart going again and about intubating for ventilation. If someone is placed on a vent and can't be weaned off it/isn't recovering, the substitute decision maker can elect to withdraw care.
Btw, staying vented for a longer time usually leads to infection and cumulatively more lung damage. Vents hurt lungs. sometimes the only solution is a double lung transplant and cancer pts aren't going to get that...
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Candy,
I am still full code for now. I feel pretty healthy other than cancer. Twice in the past 5 years I have almost been hit by a car. If I was in some kind of accident where I would need temporary support, I would want it because I think I would still have a pretty good chance of recovering. Down the road, I may rethink my decision, depending on what happens with my cancer.
You could fill out your paperwork today as full code and then change it when you feel you would no longer want that. When I was a hospital chaplain, patients generally updated their healthcare POA with every hospital stay, just to be sure that we knew their current wishes. Sometimes they would have a copy to bring in with them. There is a great model living will-5 Wishes. It's copyright so I can't share it but it asks important questions for people and their families
Five Wishes is written in everyday language and helps people express their wishes in areas that matter most — the personal and spiritual in addition to the medical and legal. It also helps you describe what good care means to you, whether you are seriously ill or not. It allows your caregiver to know exactly what you want.
Five Wishes lets your family and doctors know:
- Who you want to make health care decisions for you when you can't make them.
- The kind of medical treatment you want or don't want.
- How comfortable you want to be.
- How you want people to treat you.
- What you want your loved ones to know.
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Candy, I have nothing in place right now, not even a will. I have part of the will complete, butI got stuck on some parts and haven't completed it. I, too, would want life saving measures as my health is pretty decent right now, but of course I would feel differently when my cancer gets more widespread. It's very hard to know how to fill out important forms.
Chicagoan, The five point list is very good. Thanks for including that.
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Thank you for all the posts. My Social Worker mentioned "Five Wishes" and said he would send me some info about it.
Moth brings out good points that even in a healthy individual that coming out of a code situation is rough and not many are successful without lasting effects and a long road of recovery. And with our cancers we are behind the eight ball already.
I just am not there mentally. To think that in a non-cancer situation--- stroke, heart attack, accident, etc -- I would have NO chance and they would just let me go.... I just cannot accept that right now. With the cancer being "good" with my 2 pills- a- day cancer treatment. I just do not feel I am THAT sick yet. You know, the "you look good" comments. And not on IV chemo or the "heavy duty" treatments yet. I am not ready to stop fighting yet.
But my Social worker made it seem I am in the minority for a cancer patient, and that I need to fill out the paperwork for documentation that I WANT to still be considered for life saving treatments. Like if I got in a health situation, with my Stage 4 status, it would be assumed I was a DNR and that I need it on file that I am NOT a DNR yet.
This is depressing. I felt a gut punch today that maybe I am not facing my cancer like I should. Hey, maybe I should stop isolating, and just do what I want, and if I get Covid and die so be it. Or, hey, if I have an accident, so be it. I just cannot think like that. Self preservation, you know.
Chicagoan- As a full code, do you have papers that say you are a full code?
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&so...
This is the form I am talking about. POLST form. Full code or DNR, tube feeding, vent or not, etc.
National POLST form--- Download and you can see the form.
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For those of you who would like to read more about the use and purpose of POLST forms, prior to retirement I researched, wrote, and published an article on living wills focusing on POLST forms and their purpose. They are essential a check off form designed to allow medical professionals to see quickly what techniques one might want employed in a dire situation. It's probably more information that most of you would want, but you can scroll through and get a better idea of what this form is and how it operates. Hope this is helpful to some of you.
https://paperzz.com/doc/8935141/reflections-on-the....
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Candy - I am currently a full code. Having worked in critical care through the pandemic I had to rethink a lot of this. Truth of the matter is, it's really important to talk to your POA and medical POAs about your wishes also. I have seen a POA in some cases override a DNR if there is any question at all about what the patient might have wanted. Like you, I feel like if I got pneumonia or sepsis and needed a vent for a bit or CPR with reasonable confidence of "recovery" I would want that now. Moth makes an excellent point that we severely overestimate how effective CPR is for meaningful recovery. I have had several conversations with my family that I would not want to be maintained on machines or tube feeds and I would want to be at or near my current ability to take care of myself. If any of those must haves were compromised, peace out, I have better places to be and I'll see you on the other side! I have also threatened to come back and haunt them mercilessly if they don't honor that wish.
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emac- As a full code, do you have that documented? A POLST form filled out? I know I need to discuss my wishes with my POA, as you said. But my Palliative Care Social worker said I need the form on my chart to show I am a full code.
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I am so far behind, I will do a more detailed post tomorrow. I know I have a DNR. We went to an attorney and had it done. I don’t want any machines or anything unnatural keeping me alive . If it’s time it’s time. I have never heard of full code though. That was a bee one for me to have heard.
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Hi all, we’ve arrived at the cabin after stopping in Odessa to see our friend in the hospital. He’s doing much better today, DH and Wes had conversations with full, clear sentences, they laughed and talked about events just before his seizures. He’s eating a bit and drinking, no IV and no feeding tube, yay!
As to the DNR topic, I have the paperwork but haven’t completed it, mostly due to moving. I feel good right now, so it doesn’t seem urgent enough, I’ll wait until we’re settled. Personally, I do want standard live saving measures, so long as the expectation is a full or nearly full recovery but if I am likely to loss my independence, don’t bother. DH knows my wishes but I think it would be nearly impossible for him to insist if necessary, it’ll definitely need to be legally documented.
Have a good evening
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Mae, good to hear your friend is doing better!
Wow ladies this is a good topic. I don't have anything lined up and I know I should. I feel the same way as Emac and Mae about it though. If we can bring me back to the condition I'm in now, go for it. If not, catch you on the flip side. Good resources, thanks for posting!
I have tried to bring up end of life stuff with DH such as asking what HE would want for himself and he doesn't like to talk about it. So I told him I'll just have him taxidermy-ed. : P
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Candy, I think you can see people and still look after your safety. Given your situation, a large indoor gathering would not be the best but perhaps a visit to someone's home, you could mask up etc or meet on a heated patio, lots of places have those I bet. Maybe meet in a coffee shop? While I can't really picture you in a crowd, if you are safe and further away from others, you may be safe enough. Obviously your comfort level of course.
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Tanya, thank you too for your always kind words. They help make me feel better. Yes, my laundry really is fluffy. Picture me like this...
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LOL Mara….. adorable.
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mara, please warn us before posting a video like that. I was having a "sip" of wine and I almost choked! Seriously, though, thanks for the laugh. It made me giggle - and today has not been a giggle sort of day.
I was reminded about the part in "What About Bob?" where Bob is in his new psychiatrist's office and the psych is telling him, "Don't think about everything you have to do to get out of this building. Just think about what you have to do to get out of this office..." It proceeds from there.
I'm feeling overwhelmed with so much stuff right now. HOWEVER, I don't have to get through everything right now. I'll get through tomorrow, then the day after that, and the day after that... I can do that. Right?
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Yes, one thing at a time is all we can do. If you can pay someone to take the load as well, that helps too.
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Candy,
The default in code status in the event you have not filled out a POLST or it cannot be found is to be a full code meaning you will receive all life sustaining measures that are available.
Jane
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Moth, thank you for the explanation about vents. It doesn’t sound fun at all.
Mae, so glad your friend is doing better. Have a great time at the cabin.
Candy, thank you for bringing up the discussion. It’s a good topic to bring up here.
Mara, love the gif. Lol.
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LOL, Mara! I love that video; super cute.
DNR discussion - this is very interesting. I don't have any paperwork done, and I had not really thought about it until now. Everyone has made good points, and Candy, I never really thought about DNR now vs later. When my dad was at the end of his life, my sister said he had a DNR. I didn't know what it was. My first thought was "Department of Natural Resources", lol. When you're faced with a problem, let's just go out in the woods and sit in nature.
Mae - have fun at the cabin. That sounds perfect to me right now.
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Mara I love the washing kitty
I did set up a DNR at both hospitals that are local. I have a will just to make sure my kids get everything.
good discussion about an uncomfortable topicTanya
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