A place to talk death and dying issues
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Today is my 6th month anniversary of bco membership. Wow! Thank you everyone for welcoming and including me in this sprawling community. The Divine Mrs. M. was right, bco is a country, forum 8 is a town and the topics/threads are neighborhoods. This D&D topic/thread is my neighborhood and has lots of quiet readers/listeners and a few sharers/writers/more active participants.
I woke up thinking about how peaceful, drama-free and emotionally steady my slow dying process is for me.
I can credit external factors like living in a beautiful supportive place; having TLC from amazing friends and family; a hospice team that really cares; good food, beauty and engaging circumstances.
Yet, there are also internal factors like my many years of living with serious illness; meditation practice; creativity, prayer life and being of service; curiosity and warm interest in all that unfolds and a mild temperament. Also, my early NDE (near death experience) quelled fear of death.
It helps immensely not to feel like I'm hurting or abandoning loved ones by either my illness or my dying. Nor am I truly suffering in spite of a wide variety of physical symptoms including pain.
There is very little left undone in my life...and yet my very quiet and peaceful days are more full than ever - beauty, joy, pleasure in connection, drifting into and out of sleep (about 14 of 24 hours daily), loss of focus.
My hospice chaplain asked me to imagine a bowl to represent my "extra" time after I felt ready to die. Then she asked me what might be in the bowl. My imagined bowl was the crater of Maui's Mount Haleakala and it filled with the amazing sunrises I was able to witness there many years ago. All colors came to flood the sky and fill the dark, gritty crater with the most subtle light. Near me the silversword bloomed its beauty - so I had comfort (com- with, fort-strength) enfolding me, yet also nearby, tangible.
I know my experience is probably unusual, but it can be one of many stories about how we move toward dying. At the end I might end up fighting hard for my life again - I certainly have a lifetime of overcoming obstacles. Tough like a volcano, tender like a silversword, mercurial like the sky. Yet, I may be absorbed into the beauty of life's next phase, the phase we call death.
Sending loving kindness for all, Stephanie
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Stephanie I am sure your bowl of life and death is full of your spirit - giving and receiving love and kindness. Like a Buddhist monk getting alms from the universe for sustaining the journey. I am glad you are peaceful.
I know you will understand I tried to wait through draining too late.. made me sick. I finally got home out of the car and threw up. When I have too much ascites fluid on board movement makes me nauseous. We drove out to gorgeous Iris gardens and HUGE hostas and walked around the gardens. Normally I would have loved that and if I had taken the fluid off before I would have been ok. Timing ..ugh. Ibrance has not made me feel any better. The columbine, roses, dogwood and irises were gorgeous. I enjoyed it and while it took zofran and 40 min of laying down to recover I am back to life. The N/V has subsided for now.
I wish I could feel healed but I very much still feel sick with cancer. My gut is nothing like it should be. I never feel "good." I am happy to not feel nauseous and be able to eat a little. My weight continues to drop. My goal is to live until school starts. Mind over cancer. My DD3 has mental health issues and is plagued by suicidal thoughts. What irony that I fight to stay here to help her and she wishes half the time to leave the planet before her time is up or her life even begun. It makes me sad, angry and perplexed. Life is so precious and sweet. Being a teenager is hard but it is so temporary and fleeting then the rest of your life rolls in. Ironic I fight to stay longer then my life would be without treatment for cancer and she wants to leave while still young and healthy. Being a Mom is hard and mental illness is hard. Thanks for listening... sigh.
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Oh dear Rosevalley, I am listening deeply, taking what you shared into my heart and holding it/you tenderly. My hands went into a cupped nest to hold you as I read.
So much going on - your daughter's mental illness and suicidal wishes, your own struggle to survive, nausea and vomiting from ascites, worrying that the Ibrance isn't working fast enough or well enough to keep you here for your daughter until school starts in fall.
I too have had family and loved ones suffering depression, mental illness and suicidal thoughts. I too feel deep concern for their well being. And have been perplexed about what I can do to "save" them.
When I was 19, my 25 year-old boyfriend killed himself. He had everything going for him - beautiful, sensitive, a new career and home, big dreams, loving heart and a big depression - literally a hole that couldn't be filled by my loving. I'd already been working in crisis intervention and after his death, I've tried to "pay it forward" by showing up for others at the edge of life-and-death. To help them recognize their inherent strength and potential. To engage life's challenges and its beauty. To become empowered to live full, resonant lives.
Fortunately, i do know now, forty years later, that some people are alive because I stepped forward for them. And I know that many others lives have been improved because I care about them. But others have died, some at their own hands.
A while back I made the distinction between caring about, caring for and taking care of. When I did, it was referring to circles of care around me - many people care about me, but aren't in touch on a day-to-day basis. Others care for me and are more engaged. A very few are trustworthy and compatible, taking care of me.
Rosevalley, as a mom, you are responsible for taking care of your children until they are able to care for themselves - or at least helping them find the care they need from others, when you can no longer provide it.
Because I'm not a mom, I can only imagine the intense angst of "abandoning" your daughter due to your own illness and death. I can only imagine all that you'd be willing to do to stay alive and present for her as long as possible, until she's safely launched.
Rosevalley, in the six months I've known you, you've been intensely faithful to your calling as a mother. You have taught me so much about mother love, fierce mother love. I honor and treasure your caring for your three daughters and for your husband too.
There is no solution to your dilemma. It can only be lived through. Know you are not alone, that I and many others here care about you. We will listen and what you share will land in our open hearts and hands.
No advice, just loving kindness this morning. And tenderness for the places that hurt.
warm hugs too, Stephanie
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I am three quarters of the way through his book Being Mortal. Its a hard to read one but well worth the time and investment. I highly recommend it even though I have not finished reading it.
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Dear Stephanie- I know there is no solution and no medicine fix. The pull of life and love so far has been enough to keep her here. It is my wish, hope and longing that she lives a long happy life. I see more pull towards life then death but it scares me. I had a friend in high school whose brother killed himself. I will never forget the heart ache he experienced and the things other kids said. Cemented in my head. So many questions why. It must have been very hard for you to have a boyfriend who committed suicide. You were so young. Being a teenager is hard and being a grown up is so much better, better chance at self determination and freedom.
When I die and leave her life I wonder what effect that will have. It worries me. My Grandmother used to remark "all their troubles are over," whenever she passed a cemetery. I remember that from childhood. That attitude that death is a sweet easy way out of the difficulties of life is hard on those whose moods are dark and coping mechanisms weak. I hope the support we have woven will be enough to sustain her. I know that love alone is not always enough. I have some friends who are wonderful loving parents and their children have made very poor self destructive choices despite being loved, well raised, stable home, involved parents and family, good schools, activities and support. Sometimes we watch and pray they out grow their difficulties and sorrows. Being a mother and father is fantastically difficult. Living is hard sometimes.
Peace to you all and lovingkindness to all. rosevalley
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Hi all. I've had a challenging week and it's ending on a sad note. I had a second opinion at a great facility last week. I was very prepared with info and questions and had such high hopes that I would walk away with answers and a firm game plan. I was crushed when I was told there was really nothing new they could offer, and it would be best to stick with my current plan.
My current plan is not working. I've had progression on both chemo and hormones and I am weaker and sicker by the week. I had a 2nd lung biopsy on Wed and am anxiously waiting to hear from my doctor on Tues on whether it's primary lung cancer.
The 2nd opinion doctor did answer my tough questions about which treatments would actually benefit me. Her honesty was alarming.
I had planned to get away this holiday weekend and spend time with family and friends at a cabin in the woods. The weather was so hot and the allergens so extreme that I had severe breathing issues so we had to come home early. My daughter was so upset to have to leave her friends and I know my husband was sad to miss kayaking. Now I'm sad thinking that I'll be spending all summer stuck indoors and that my beach days are behind me.
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Noni, I'm sorry you've had such a tough time. It's awful to anticipate a nice vacation and then be forced to abandon plans because of health issues.
Has Faslodex been on your MO's radar? Many of us have had success with it.
Wishing the best for you,
Tina
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Noni - sorry to hear you vacation was cut short. I echo Tina's comment on faslodex or possibly Ibrance - It's working for a number of us Er+/Pr+/HER- gals. Please look into every new drug. And we are here for you! Rosevalley - sorry to hear about your daughter's struggle with mental health. Just continue to support her, you are not alone with family who have suicidal thoughts. Hoping for you to be here all summer and beyond for your children. You are a most loving and insightful mom.
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Ibrance is the next treatment on deck, unless the lung biopsy shows bad news. I'm so tired of feeling so miserable.
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Noni- If you have not been on faslodex or Ibrance and are ER positive then I would insist on trying it before you throw in the towel. Faslodex took me from hospice to living again. Seriously. Tina has had success with it and many others. Ibrance hasn't kicked in totally since i have only been on it not even 2 weeks. So I am unsure of it's effect. I am 99% ER+ and 90% + PR+ so it should work and it's too early to tell yet.
Hang in there. May your allergies and the side effects be temporary. It is very hard to manage the side effects and general weakness of having late stage cancer. It is hard. I feel for you. I feel for all of us! (((Gentle Hugs)))
rosevalley
Noni- I wanted to add that if you are having difficulties breathing perhaps you could ask your oncall oncologist for portable oxygen. Sometimes a a little oxygen might help you regain your activity and sense of well being. Just a thought to support you being more comfortable. I saw you were waiting for a lung biopsy. Even in hospice oxygen is allowed for comfort measures. It should be covered by insurance. It would be delivered to your home and is easy to use. At this stage of the game comfort and palliation should be our goal.
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Excellent book ,reading as well
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I don't believe we "abandon" anyone when we die. It's a natural progression of the game we call life. It's just the timing we don't know for sure. Kids expect to lose their parents. I cannot imagine how it feels as a parent to bury your own child. I am often surprised with how deeply people are affected by the loss of their parent unless it is "too soon". I lost my Mom when she was only 67 which I considered young (especially as her sister lived to 101), but I did "expect" to bury a parent. Then my Dad passed at 71 which seemed a bit better, but as his Mom had lived until 97, he was still too young. I handled their deaths with grace as it was "normal". So I expect to die without thinking I'm abandoning my kids and grandkids...
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Ugh.. it's been a hard day. It's just beautiful outside hot sunny and my garden is bursting. The cancer has strangled my gut again.. puking breakfast and lunch. Feeling bloated and nauseous. Just like back in Feb. The faslodex has worn off and I am back in tomorrow for more if they give it to me and I will be lucky to keep the Ibrance down. Here we go again. Now the subtle dance circling the drain.
barb1958- no 15 year old expects to bury their Mom. No Mom wants their 15 year old to experience that either. Expecting parents to die when they are old is different from having parents die in their 50s. I fully expected to bury my folks and did -Dad at 74 and Mom is still going at 77. I think when you have a kid still in middle school it is abandonment to them. They hopefully will get over it.
I am sick of feeling sick. I also know how bad things will get too.
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Rosie, so sorry you are feeling bad again...and you know how that spirals. Prayers and hugs your way.
I agree with you about our kids burying us. My daughter is 25, but she will still be devasted. My dad died when I was 28. Still miss him. We were great friends, and he never got to see his grand daughter. He would have been a great grandfather and they would have been great buds. That's the said part, you want your children to meet and be around wonderful people as long as they can. Such wonderful influences. My daughter missed out never getting to meet my dad. Yeah, they will all get through this stuff, some easier than others....but the thought I am the cause of that pain, makes me sad. Only 56, I think I am a few years older than you, prob won't make 60.... And that's a stretch....we are young...that's our life...you can't take the emotion out of it. There is beauty in the good times and in the fire. Difficult is an understatement t, but we do it. And you do it with such grace Rosie. And so does long time . Here is hoping for some more good days:)
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Can't get caught up with everyone, so will offer my own personal update.
Saw my oncologist of almost 24 years yesterday after a two-month interval. When I whipped off my shirt, he gave an almost audible gasp. It seems the cachexia is easing the flesh from my bones and cancer is drawing it to my liver and ascites belly. He saw and commented on many signs that death is closer now.
Since I'm not doing imaging or blood tests, we're drawing from symptoms I feel and signs we can observe.
All signs are pointing toward death and he asked me where I think I'm headed.
I told him that I'll still have work to do later, but will no longer focus on sustaining this dying body. It's been a long time now! I'm headed to a beautiful, happy place and I'll still be connected with all I love here. He wistfully asked me to visit him and I replied, "of course."
Sometime in this conversation, I began to cry. He said he'd never seen me crying before, but I reminded of being really frustrated with my failing body years ago. Then I said I feel such relief to know that I will die.
I think my wiring is opposite of most people's. Intellectually I know - I'm alive, I'm mortal, I will die. But my greatest fear is that I'm immortal and will be forced to live in my ailing, failing body forever. I do love life, but my body is a very broken vessel.
I thanked him for being my doctor and being willing to try (prescribe) all sorts of unconventional treatments.
He thanked me and said I'm his teacher and he learns so much from me.
He was getting a little misty eyed by then, so I just hammered him. Poor guy, he didn't have a chance. We had a good crying love fest as I told him how much he's healed my fear and disdain for doctors. That I thought they were limited, opportunistic, inhumane, but he'd proved me wrong over and over and I'm so very grateful. He just broke down then and we got another hug and he kissed my cheek and told each other we love one another.
What a mensch!
Then I chided him about his own healthcare and asked him to please stick around, because so many love him. Told him, I want to get to the other side before you and welcome you. I really, really don't want to outlive my oncologist.
We got a good chuckle, dried our eyes and made an appointment for four weeks.
Oh, he said his good doctoring is what everyone learns in medical school, then amended it, "I don't know what happened to so many others."
That's my personal update today.
Slow dying, my way to go!
Stephanie
Brodiaea - cluster lily and rattlesnake grass
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I feel that thinking you are abandoning your child(ren) just adds another layer of guilt to the dying process. I think we carry a rather heavy guilt load already with knowing we will be causing emotional pain to those who love us. I will be leaving behind 4 kids and 5 grandchildren....
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Rosevalley, how serendipidous that the very first time I've read this thread, I stumbled across your post. I completely know where you're coming from. Leaving a child or children that have not yet reached adulthood IS indescribable pain. The sadness is overwhelming. There is no comparison to leaving adult children behind. The only thing that gets me through is something my dear friend from these boards told me (she also left behind a 12 & 14 year old). She considered herself fortunate and honored that she had even those years with them and that she could have been hit by a drunk driver when they were babies. Her words stick with me always. Not that it makes leaving them any easier, but knowing how priveleged I was to be there to witness even a small part of their childhood calms me a little. We just have to have faith that they will be ok, no matter how impossible that may seem. Take comfort in the fact that because of all this, they will absolutely be kinder, more compassionate adults.
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Well said, barbe1958.
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I don't see how losing a parent at a young age makes someone more compassionate and kinder as an adult! I think we are all just wishing and hoping how it will be for those left behind. And as I have older children in their mid 30's I can assure you that the pain of leaving them is very deep and heartbreaking. It's not making it easier to die just because my children have grown up. They are still my babies....
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Oh Stephanie you are most blessed to have a doctor you love and trust so much. What a great experience. Wish I could give you a hug and make you a comforting bowl of soup, tea or whatever sounded good. To die slowly is hard and you do it with such grace and love. I understand what you mean about our bodies feeling broken. Hard to sail a ship that is constantly breaking down and taking on water... gallons of ascites! We know - every day for you - every other day for me. It's not normal to fill containers of fluid off your gut. (I just emptied almost a liter and it's increased lately) We are broken and filled with cancer. Death will be a sweet release and you have earned your wings. I will miss you here and hope we meet again on the other shore.
I woke up to nausea and throwing up. I was puking Saturday and yesterday and this morning. Once I got through the N/V and got some zofran down I was better. I too went to the oncologist. My labs were the best they have been in months. Perfect. Wish I felt good instead of lousy. My gut has stopped. I feel the faslodex has worn off. The Ibrance I don't know. Maybe the nausea is from Ibrance. Anyway they took tumor markers but they won't be back for a couple of days. The nurse I had was so sweet and the faslodex shots didn't even hurt. Well xgeva stings ... oh well. whenever i get puking it depresses me since I spent Dec-Feb so freaking miserable with unending nausea and puking. I was so weak and tired and sick. I just can't revisit those days. I want to be well for this summer. Trying to focus on that.may the faslodex shots work their magic. If they don't then it's DWD meds.
For all of us Moms - there will never be an easy way to leave our kids. It is just my opinion that leaving them before they are 18 is extra hard. They aren't mature and ready to be on their own. It would be devastating to leave them as babies and sad to leave them as teens when you just start to see them take their first flights... fly!!! I think it's human nature to want to be there as back up and support for those you had a hand in raising. What a lucky Mom you are Barb58 that you got to see your kids to age 30s! I would just love that. I am sure they love you back. Leggo- your friend was right in a sense that just to have gotten 15 years is pretty good. I got 20 and 21 for my other two, and I am grateful. I am grateful for the time I have had with my kids.
Grateful for you all too. Lovingkindness to you all. rosevalley
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Rose I did have stomach issues the first round. Prilosec helps the most. I had terrible acid with chemo and then with Ibrance. Now it's controlled with the PPI. Even puking isn't bad. I did have to try a couple different ones to get total relief. I know acid isn't the same as nausea. Wishing you relief.
We all know how much you've fought to stay around. Fierce mother is an excellent description.
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Zills- I take Prilosec and reglan. They do help. I feel a little better this morning. Praise for Faslodex - No nausea. I am sipping coffee. Yesterday was brutal though. I was worried I couldn't get the Ibrance down. Didn't really eat dinner. Took zofran twice yesterday. My onc said she will try and schedule the faslodex shots as close together as insurance will allow. Nice of her. Wish I could take it twice a month I would.
Zills you and I know how sweet and hard we fought to be Mothers. My first daughter was adopted then we got our "Oh my gosh your kidding baby" after 7 years of marriage. We were surprised and thrilled to have 2 kids in diapers. Then we decided (Dh and the kids and I) to adopt again in our forties. If I had known I would have cancer I wouldn't have adopted again and I feel badly to put my last kiddo through this. Still we did adopt her and I feel responsible to see it through as best as possible. I don't consider myself a "tiger Mom" as I am laid back and supportive - never hammered the kids to achieve top status, moderation and sanity was my motto and we never over scheduled the activities. I will hit the wall running if any of my kids needs something though. I remember my DD2 worried about a C in a math class. I said.."No one ever died from a C in a class. If that's your best effort and this is hard for you, then be proud of getting a C! It's ok - passing and all." She had great grades in other areas and Geometry was so not her thing. Can't be good in everything. My DH always had expectations of "B" or better in everything. That stresses kids out. Life is too short to get hysterical about everything.
It's like cleaning.. I keep a clean house but it isn't spotless. Since my cancer I walk and smell flowers, sit with the cats and walk the dogs first -clean 2nd. Life first. Garden time first. People and animals first. I am sure you can all relate. Cancer does put things into perspective. Today we are getting a nice steady shower. We have had very little rain and some higher then normal temps for this time of year so the rain is welcome. A sweet drink for Mother Earth. This weekend they are predicting temps near 98! That is super hot for here in June.
Prayers for comfort and peace for those in hospice M360, Hope, Stephanie and all others. Thank you. Lots of love to all.
rosevalley
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Not personal, but possibly practical for some members
From Australia
Coping with Mortality
https://theconversation.com/au/topics/coping-with-mortality
May 19, 2016
Here's what people in their 90s really think about death
Jane Fleming, University of Cambridge
It is rare to hear from people in their tenth or eleventh decade but their voices are crucial to shaping end-of-life care services.
May 19, 2016
Palliative care should be embraced, not feared
Ian Maddocks, Flinders University
Palliative care should be a time of shared care; when the doctor continues treating their patient's disease while symptom control and preparation for death track alongside.
May 18, 2016
Spiritual care at the end of life can add purpose and help maintain identity
Colleen Doyle, University of Melbourne and David Jackson, University of Melbourne
Research shows people who suffer from loss of meaning die earlier than those who maintain purpose. We can help people find meaning again by nurturing their "spirit".
May 17, 2016
Everything dies and it's best we learn to live with that
James Kirby, The University of Queensland
If presented with a client who has death anxiety, we ask them to tell us what exactly they fear about death. Once we have this information, there are several approaches to treating fear of death.
May 16, 2016
Adults can help children cope with death by understanding how they process it
Linda Goldman, King's University College
Children's perceptions of death vary with developmental stages. Understanding these is key to helping them normalise their thoughts and feelings when someone they know dies.
May 15, 2016
Fear of death underlies most of our phobias
Lisa Iverach, University of Sydney; Rachel Menzies, University of Sydney, and Ross Menzies, University of Sydney
We manage our fear of death by creating a sense of permanence and meaning in life. But for some people, death anxiety results in pathological coping mechanisms, such as being afraid of spiders.
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Cancer is so hard and this path so difficult. Hard on the family and us. Pray for all those suffering Patty, Blondie, M360, Hope, Stephanie and me too. Life is sweet but leaving cancerland is looking like a good thing. Blessings to everyone. lots of love. rosevalley.
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Hello Sister Friends,
It's been about a month since I posted and what a whirlwind month it has been! My son did graduate from H.S., we had a huge BBQ party, and two days later left on our mother-son road trip as planned. Flew from AK to Albuqueque,NM, rented a convertible and drove to TX, NM, AZ, then CA. We made it to our destination, San Francisco, where we spent 3 nights. I had to overcome a lot of "what if's" in order to go. We did camp some, and hotels, but the high point was walking so much. I even tandem biked with my son across the Golden Gate Bridge! I haven't ridden a bike in 3 years since diagnosis, and rode 11 miles!
The only difficulty I had was at Carlsbad Caverns, NM. Like an over-zealous dumbass, I walked too far down into the caves. On the return up, the dense air made me feel like I couldn't fill up my lungs, no matter how deeply I was breathing. I could imagine having a collapsed lung and passing out down there. I had to have a ranger call for an electric w/c to get me to the surface. Other than that, the trip went well, and was full of meaningful time with my son, with laughter & conversation. I feel blessed to have had this time with my son and hope I created good memories for him.
I realize after reading the recent posts, just how much of a connection I feel with each of you. I don't always remember your real names, but remember your stories. I don't know anyone else in my life who has Stage 4, although other people with terminal illnesses relate to me. But I feel like I can't talk to anyone who would actually understand the weariness of this ongoing treatment, and the frusteration I have with pain and memory loss. Lately I have had trouble placing a word in my sentence, and other people are starting to finish my sentences! I hate that, as I'm 43 and know what I want to say.
My pain has increased in the last 4 weeks. I have 50 mcg Fentanyl patches and 15mg Morphine ER (scheduled) and 15-30mg Morphine IR (as needed). Every morning I wake to a 6-8/10 pain and have to sit on ice pack until my IR kicks in. I do start radiation for two weeks on Monday, so maybe that will reduce the pain before I go on the next chemo.
I'm having a hard time being positive lately because of personal crisis with my Mom and how my sister (her POA) is treating me going through it. She seems to think I have endless energy and should be there for my Mother in-spite of my daily radiation & how I respond to it. I would certainly like to be there more for my Mom, but often am too tired or in pain to be involved. I think she's subtly mad at me for leaving her with the job of taking care of our Mom. Any advice?
My favorite quote some of you may like is "To Garden is to believe in tomorrow". I have loved gardening since I was a kid, and every spring plant something. This year my husband built a greenhouse and 4 raised beds for me, and I am planting still. I like to think of being here to harvest. My favorite past time is resting in my garden, with my ducks & chickens, and geese free-ranging.
God bless each of you with fortitude! Shelley
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Hello Ladies.
I work with the elderly and its what we call normal for someone of a certain age to pass away, but for someone that's young or with family members that need you that's hard to understand. Recently I started in this path called cancer, and I have no answers, no body really has and I know that for the most part we try to hold onto life because that's all we know. What I cling to is my belief in God and that while my mother was going as so many others have left, my assurance and belief is that I will see them again.
My heart and prayers goes out to all of you and your families.
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Was away from the boards for a week or two? But always thinking of this thread, thinking of the wonderful posts on this thread, talking calmly, but soul searching, loving, comforting, and profound. Taking me quite much time to catch up. Thrilled to read Blondie, enjoyed greatly Stephanie's accounts as always, loved Rosevalley's C grade approach, and moved by Shelley's "to garden is to believe in tomorrow" - I, too, planted a few flowers this month but without giving it much thoughts, now I feel even happier! It's raining here, making this quiet Sunday afternoon even quieter. Wish you all great comfort and peace today, especially Blondie, M360, Stephanie, Brenda, and others who are on hospice.
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I, too, love the "To garden is to believe in tomorrow". My DH and I added a new garden to a corner of our property yesterday and those words really hit home. I just told my DH as he brought my tea in and he likes it, too. Now it makes sense why we do some things.... (he did think I was planting some of the bushes too close together, but I ignored him
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This is a photo of my friend's garden. She's had breast cancer twice, last time 30 years ago, and gardens like there will be a tomorrow, a tomorrow, a tomorrow. When she moved to her home 30 years ago, the yard was bare dirt with a few apple trees.
It's so odd and wonderful what lives we touch in our lifetimes - and not all are human!
Shelley, thanks so much for coming back to us with wonderful stories of your wonder-filled trip. Only one mishap - yay! And so many good memories to share with your son.
Your pain, radiation and family relations with sister and mom sound really demanding now.
I too struggled with "being there enough" during the four years my mom declined with dementia. I was able to come for a monthly visit, but one sister handled the local, day-to-day medical and personal needs. My other sister, the financial needs. My role was the spiritual-social needs. We were sometimes like good-cop, bad-cop team with mom. It was hard, but my sisters made sure our mom had a better living place when she could no longer live safely on her own. My medical sister and I were with my mom when she died and I was actually singing to mom and stroking her head. It was one of the many miracles in my long life with breast cancer.
I am so grateful.
Anyway, my point is, we make our way. None of us are perfect or can do it all. I'm grateful that my sisters and I played to our strengths and supported one another as best able.
Shelley, you are playing to your strengths and now you require a good amount of self-care and medical-care just to keep going.
It sounds like your needs are in conflict with your sister's and your mom's, but maybe you can find a way to work together and meet your needs too.
Please take what you like and leave the rest of this. Maybe something will resonate and be helpful for you.
Sending many blessings and much admiration that you made your dream trip. Woo hoo!
warmly, Stephanie
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Okay, I'm dating myself again, but back in 2011 and again in 2012, the cancer world was rocked by two Zocalo Public Square stories about how doctors die. (1, 2) A recent study reported in the Washington Post says they die quite similarly to the rest of us, except for their use of hospice. (3)
Excerpt:
In one regard, doctors seemed to die slightly better than non-doctors: 46.4 percent of doctors used hospice during their last six months compared with 43.2 percent of non-doctors. Doctors also spent nearly 2½ more days in hospice than non-doctors.
But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.
"Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases," said Daniel Matlock of the University of Colorado School of Medicine.
This is striking because it is the opposite of what doctors say they'd prefer. One survey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.
Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease's progress, the surgery that was totally unnecessary and might even have sped up someone's death. Doctors have seen that happen even more often.
"Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be," Craig C. Earle wrote in the Journal of Clinical Oncology. "We, on the other hand, have shepherded many patients through this journey toward death."
That's why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.
But Matlock and Fischer think their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.
"These things that encourage low-value care at the end of life are big systems issues," Matlock said. "And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train."
There are definite limits to the study: It could not control for differences in education or income among people in the sample. Most of the doctors who died were white men.
But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing — it's much harder to write a prescription.
Worth considering!
Healing regards, Stephanie
References:
(1) How Doctors Die
It's Not Like the Rest of Us, But It Should Be
BY KEN MURRAY
NOVEMBER 30, 2011
http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/
(2) Doctors Really Do Die Differently
Research Says That More Physicians Plan Ahead, Reject CPR, and Die In Peace
BY KEN MURRAY
JULY 23, 2012
http://www.zocalopublicsquare.org/2012/07/23/doctors-really-do-die-differently/ideas/nexus/
(3) The sobering thing doctors do when they die
By Carolyn Y. Johnson
June 6, 2016
https://www.washingtonpost.com/news/wonk/wp/2016/06/06/how-doctors-really-die/
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