A place to talk death and dying issues
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Dear Chuck,
Thanks for letting us know, my that was fast!! Susan was always letting people know she'd see them "on the other side", I loved that!!! As you know, she was an exceptionally upbeat, persistant & brilliant woman, and I'm so sorry for your loss...Kathy
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Very sorry for your loss. She was a wonderful contributor to this forum, I don’t think I ever interacted with her directly but I always appreciated her spirit as well as her informative posts. She seemed like a brilliant and resourceful woman and I knowshe will be missed.
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Dear Chuck, thank you for letting us know about Susan. I greatly appreciated her insights and sharing of experiences over the past 4 years since we first chatted about pik3ca inhibitor trials. I admired her research skills and how she was able to find and understand emerging treatments - I wish her list could have been even longer. My thoughts are with your family at this time. Heather
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Dear Chuck,
My sincere condolences to you and your family. I’m so saddened by this news. As others have said, Susan was always helpful and supportive, sharing her experiences with anyone who could use support. I connected with her early in my MBC journey when she provided invaluable advice about pleural effusion. She was an amazing woman. Rest well Susan.
Pat
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I’m so sorry for your loss.
Kris (KBL
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So very sad and sorry to hear about SusaninSF, sending love to her soul and spirit, and comfort to her family. She was pretty awesome and incredibly helpful here on this site.
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Chuck~I am so sorry for your family’s loss. Please know she was well Loved here also. May she rest in peace and may your family rest some , knowing how many lives she touched.
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Chuck ~ I'm sending my deep condolences to your family. This news is so very sad. Susan was such an inspiration and source of hope for me during the early months of my MBC diagnosis. I looked forward to reading her posts to see how she was doing. Rest well, dear Susan.
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Chuck, I am so sorry for your loss. We will miss her.
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Hi all,
We wanted to share with you our latest podcast, which we thought this thread would find helpful. Sending gentle hugs to you each.
Medical Aid in Dying Laws
Jan 20, 2023John McGeehan, MD, FACP, discusses laws that allow people to make the decision to end their lives.
Medical aid in dying laws, also called death with dignity laws, physician-assisted suicide laws, and right-to-die laws, are difficult for some people to think about, but for others they're hugely important. Listen to the episode to hear Dr. McGeehan explain:
- the history of how medical aid in dying laws came about
- the checks and balances in place to ensure the laws are used ethically
- the costs associated with using the laws
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I don't know what's going on in my head - literally and figuratively. I have an MRI of my brain coming up at the beginning of March. I've been having weird headaches for over a month. I'm afraid, of course, of more mets.
I've started purging stuff that I don't want someone else to have to deal with. I've scanned important paperwork, have a huge pile of documents to take to the shredding place, and have a huge pile of clothing to donate. I have certain songs going through my head. I'm just feeling sad. I can't really tell anyone. I don't think anyone really gets it, except for you all here.
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Sunshine99: Hang in there, Girl!! Purging is okay just don't jump on the Marie Kondo bandwagon. "Does it spark joy?" even if it is just a knick-knack and collects dust, yes it does But it feels good to get stuff done that should be done, or could be done sometime in the future. I made up my folder of important papers and requests for how to deal with me towards the end about a month after I had my DX. I had to order copies of my birth certificate and marriage certificate because who knows where there might be other copies.
Do the songs stuck in your head have particular meaning?
You are so right. People don't get it. "Oh stop worrying. You'll be fine" really doesn't help at all.
In your pocket for the MRI
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Sunshine99- I don't know what your situation is, but, I also get very down and doomed at times (especially when I. can't sleep)- I agree with elderberry - sometimes purging and getting things accomplished makes me feel much better. I also try to make a date with a friend, take a longer walk etc.
Really hoping the MRI gives you reassurance and no other news!
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Sunshine, I would like to give you kudos for actually accomplishing something. I get the feeling that the drug I started in January isn't accomplishing much. Having a 3rd thoracentesis tomorrow as the last couple of days I can't get a good breath. I'm afraid scans mid March will confirm my fears, however I don't seem to get the Financial stuff, paperwork, cleaning out, Etc accomplished. Don't go overboard and get rid of stuff you want, just feel a sense of accomplishment for what you've done.
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Sunshine - like most things in this world, the Swede's have a name for this: death cleaning. In fact, I think there is even a book on it called the Gentle Art of Swedish Death Cleaning which goes into the how and why of the act and how it helps to give mental support and closure. I imagine with the anxiety of 'oh great, what is going on now?' and an upcoming scan, cleaning and thinking of special songs is a way of soothing and feeling productive. I say go with it - better to do it now than when you are feeling better and its not winter!
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Thank you, everyone, for the encouragement. I did read the Marie Kondo book, and her sparking joy thing did cross my mind. These are clothes that have been hanging on a rack in the attic for probably five-plus years. I offered them to my housekeeper this morning and she is glad to take them.
It felt good to get some documents sorted and purged, since our filing cabinets were getting overly full of stuff that we didn't need to be keeping. So many things, like bank statements, are available online for 7 years.
I think the songs in my head are those from my college days and when I worked at a summer camp in Yosemite for those four years.
I promise I won't go overboard on getting rid of stuff. I actually ordered more "stuff" on Amazon this morning. I "needed" more storage containers for the little stuff that goes in my pantry/garage. Our little Craftsman house doesn't have a lot of built in storage.
It's cold (for San Diego) and gloomy here today, but I kind of like those days. I've always liked rainy days, even as a kid. Right now, I'm up in my attic working (and playing) on my laptop. My housekeeper is here today and I thought I'd just get out of her way and let her work.
Happy Valentine's Day, everyone!
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Sunshine99: I have too many shirts and tunics left-over from work. They are nice, not out of fashion nor so old to be cool vintage and therefore keepable/salable. I can send them to Goodwill. I keep thinking to myself, I could wear that shirt instead of the same old T-shirt. A while back I emptied a filing cabinet of really really really old bank statements. 1999!!! So God's sake. The local UPS store does shredding so I filled bags with them and wheeled them up the street in my Granny cart. But -- I found a folder of art work I had done when I was 18 (1968) I am glad I dragged them from home, to all the places I rented, through jobs/boyfriends and then a husband and a house. But most of the contents were really just big piles of papers. Like a manual for an appliance we haven't had for over 10 years.
Sunny here but chilly. It has snowed on the occasional Valentine's Day so I guess we are all happy. Spring is arriving.
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One thing that Marie Kondo suggested that helped me was "just because it still fits and is in good condition, if you don't wear it, get rid of it". We have a neighborhood "Buy Nothing group" through Facebook where you can post stuff- almost everything gets taken by someone which is nice that it doesn't go into the landfill. you probably have one in San Diego also.
My housekeeper took so many things and often distributed them to needy relatives including furniture- it was wonderful.
Cold in the Bay Area also- but, sunny.
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I was sort of forced into getting rid of many unwanted things as I am in the middle of major house renovations. It was actually shocking to realize how much stuff I had that I no longer used or needed. I live in San Jose but have mainly been staying with my older dd in Napa. I haven’t been warm since mid-December 😂.
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Sunshine99, elderberry and everyone else who shared. THANK YOU! I feel the same as I want to purge, get things in order. I also have friends saying oh you shouldn't be thinking of these things, just be happy for the days you have no matter how long they are. You could live for a very long time. I feel what they are saying is I can't deal with you talking about your death. So I just stop talking to them about it.
I did tell my dds about my jewelry. I wanted them to know the history of each piece. I told them and they looked at me funny then said mom write it down. We will never remember! I bought little organza bags and 3x5 cards. I wrote the story behind each piece. So I accomplished this which made me happy.
Also sunshine99 - the songs going thru your head. Download from somewhere and blast them out when you are purging.
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sunshine, there are people who get it. And with them you would feel better. If anyone does not and makes a comment " or i will be fine" I ask them what do they mean - do they know stats , do they know that I have metastasis that evenrually should stop responding to medication and I have increasi g symptoms until I put in too much morphine and get unconscious forever? Then listen to what they have to say. If their fear is stronger than their respect for me I diminish communication with them. But so name are not like that.
By the way , if you have symptoms- why are you waiting scheduled tests? Why do not you ask for urgent ones ?
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I read the Swedish death cleaning book and especially like Marie Kondo. These type books give me incentive to declutter and it always feels great to get rid of things no longer needed. That's the key. I'm not tossing meaningful stuff or living a meager existence. It is about editing out unnecessary stuff so what's left is more satisfying.
I think it's incredibly smart AND thoughtful to write down the history of things like family jewelry, and any friend who doesn't get that lacks insight. I do some genealogy and heartfelt information passed down for generations to come will be cherished forever. Future generations will be so grateful you took time to do that, which is what matters. You are leaving a legacy. That's important and worth your time.
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Luvdbyhim, I'll have to do that with the music. I do have a few playlists that are "mine" because they speak to me.
Anotherone, I don't think it's "urgent" but I just wanted my MO to know. I'm keeping track of these incidences. If the brain MRI shows nothing (as in an empty head) then I'll just make a note of the symptoms and file it away in my records. Otherwise, I'll bring them all up to my MO. It's only a couple of weeks before the scans, and I'm OK with that.
Divine, I do have a list of "who gets what" so my Dh doesn't have to figure all of that our on his own. My sister will help . She's super organized but I think even she would be overwhelmed with what to do with all of my things.
Carol
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sunshine99 - a list is a good idea. I REALLY like this! I am going to start one. I also would like to just give things away now so that I can see people use them or be happy using them. The other day my cousin who I am very close with said she liked my earrings. I took them off and gave them to her. I said I would like you to have them. She said no no no! I am still in denial and I dont want them. The funny thing is I would still give them to her if I wasnt on the fast track to heaven. I said no I want you to have them. She still said no. I said okay I will just put a note on them and you will get them later. I would really like to see her wearing them and enjoying them. Maybe I will give them to her for her birthday? Or I will put them on the list.
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luvdbyhim, one advantage to keeping a list (at least for me) is that I can track how long something has been occurring. You know how when you go to the doctor and tell them about something? They ask, "How long has this been happening?" I never remember exactly when something started or stopped unless I can relate it to some other event.
I have things I want to give to certain people. They don't want to talk about it. I get that. They are on my "list."
Carol
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I'm dying of MBC and it shows. I can't hide the sad condition I am in.
My daughter and her husband will be coming for a visit in a week and I'm petrified of how poorly they will find me. They live on the other side of the country and we haven't seen them in a couple of years, I think they will be shocked at how sick I am as I have been fairly quiet about my treatment and condition. My husband has been taking such good care of us, but large changes have happened since they were last here.
Plus the house is something of a wreck, my ability to cook and clean and shop is minimal, and I'm exhausted all the time.
I don't want to be seen like this. I need quick fix advice. Halp.
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PNW I am so sorry. Your family wants to visit with you so don't worry about the house. Are thereany local services that can help out ? Does your cancer center have a social worker that can refer you to a service . There used to be one called "cleaning for a reason " that provides house cleaners for no cost for cancer patients.
Sending you hugs.
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pnw, I'm so sorry. I wish I could help you or organize a clean-and-cook crew who could sweep in, do their stuff and sweep out again. I'm not good at asking for help, but is there anyone who could give you a hand?
We were diagnosed with Stage IV at around the same time. I hate cancer...
(((hugs)))
Carol
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just simply explain. I’ve been battling and I have to pace myself. just be your open and honest self. You’ve done nothing wrong. Maybe this will prompt more visits. I’ll be thinking of you and hoping you can just enjoy the visit.
I can’t seem to shake the cancer fatigue either. I live day to day. Pain killer to pain killer. I’ve learned to only do what my body feels like it can. I don’t set myself to fail by thinking I can do too much. Little steps daily. Maybe. Box by box? Organize room by room. I’ve Been purging. Getting rid of things I’ll never use or need again. I’ve found there is less to fuss over. Good luck with your visit. I hope it’s a Good one.0 -
pnw - MBC is not your fault, It is reality. Your children should be adult enough to understand your condition and if they don't want to or ignore it, you can't change that now. Yes, pace yourself! I tell guests that I have to nap 1-2 hrs each afternoon and that I go to bed around 8:30 or 9. Only way I can survive. So, they need to read a book, take a walk, fix dinner, whatever. Too much work for DH to cook? Pick up rotissiere chicken & prepared salad & pastry @grocery. If they want something else, they can go pick it up. Try to enjoy the personal connection and don't worry about the house, etc. If they ask what they can do to help, ask them to pay for a housekeeper to come cleanup every other week. My sister's friends organized this for her when she was still working & her DH had lung cancer. Most thoughtful thing they could have done.
Don't mean to beat you up! You can't do everything anymore, probably all of us MBC feel this way. Do feel free to come rant to this group, we understand, probably better than anyone other than your DH.
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