Best Of
Re: Books
Good Evening Ladies.
I finished reading today a book entitled "Bone Knowing" by Jennifer Allen. I would recommend it. One caveat that I will disclose, is that it tells the story from the perspective of the caregiver.
For me I was good with it and a lot of what the author spoke of are thoughts that go through my head about the caregiver end of things. It spoke of their spouse utilizing Gerson therapy and in the end conventional medicine. I could not fathom the caregiver burnout the author had on their journey. It is utterly amazing she made it through. It spoke a lot of quality vs quantity and what that means to each of us individually. Not a hard read and easy to follow.
If any of you are in to reading on the subject of death and dying, I would put it on your list.
I finished reading today a book entitled "Bone Knowing" by Jennifer Allen. I would recommend it. One caveat that I will disclose, is that it tells the story from the perspective of the caregiver.
For me I was good with it and a lot of what the author spoke of are thoughts that go through my head about the caregiver end of things. It spoke of their spouse utilizing Gerson therapy and in the end conventional medicine. I could not fathom the caregiver burnout the author had on their journey. It is utterly amazing she made it through. It spoke a lot of quality vs quantity and what that means to each of us individually. Not a hard read and easy to follow.
If any of you are in to reading on the subject of death and dying, I would put it on your list.
Re: Books
Same book as last post but another quote.
"It's not always about the things you've done, or the mistakes you've made. It's about the people, and what we're willing to do for one another. The sacrifices we make."
"It's not always about the things you've done, or the mistakes you've made. It's about the people, and what we're willing to do for one another. The sacrifices we make."
Re: Books
I just read another book entitled "Being Mortal" by Atul Gawande
It is about the role of palliative care in the health care system and how it is about quality of life and opening up dialogue about wishes that may need to be fulfilled later. It also talks about how utilizing palliative care ultimately decreases trips to Emerg and ICU due to earlier intervention by a palliative team which therefore decreases healthcare costs.
Here is one passage from the book that I found interesting:
"People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete."
I found it was well worth the read and would recommend it.
It is about the role of palliative care in the health care system and how it is about quality of life and opening up dialogue about wishes that may need to be fulfilled later. It also talks about how utilizing palliative care ultimately decreases trips to Emerg and ICU due to earlier intervention by a palliative team which therefore decreases healthcare costs.
Here is one passage from the book that I found interesting:
"People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete."
I found it was well worth the read and would recommend it.
Books
Good Morning All!
I am reading "The Book of Two Ways" by Jodi Picoult. It is an interesting read and goes back and forth between her being an Egyptologist and a death doula. I am going to post a part from her book that is in relation to the death doula part. I think some of it is fitting for us going through treatment, recurrence and palliative care. I hope you find it interesting or worth pondering. It is also going to be written here exactly from the book so I apologize that there is not use of pronouns in it.
"Things you shouldn't do when someone is dying:
Don't talk about when your aunt or your grandmother or dog died. This isn't about you, and the sick person shouldn't have to comfort you; it should be the other way around. There are concentric circles of grief: the patient is at the center, the next layer is the caregiver, then their kids, then close friends, and so on. Figure out what circle you're in. If you are looking into the concentric circles, you give comfort. If you're looking out, you receive it.
Don't say things that aren't true: You're going to beat this cancer! It's all about a positive outlook! You look stronger! You aren't fooling anyone.
Don't overact your happiness. It's okay to be sad with someone who is dying. They've invited you close at a very tender time, and that's a moment of grace you can share.
Don't think you have to discuss the illness. Sometimes, a sick person needs a break. And if you ask up front if he wants to talk about how he feels--or doesn't--you're giving him control at a time when he doesn't have a lot of choices.
Don't be afraid of the silence. It's okay to say nothing.
Don't forget: No one knows what to say to someone who's dying. Everyone is afraid of saying the wrong thing. It's more important to be there than to be right."
I am reading "The Book of Two Ways" by Jodi Picoult. It is an interesting read and goes back and forth between her being an Egyptologist and a death doula. I am going to post a part from her book that is in relation to the death doula part. I think some of it is fitting for us going through treatment, recurrence and palliative care. I hope you find it interesting or worth pondering. It is also going to be written here exactly from the book so I apologize that there is not use of pronouns in it.
"Things you shouldn't do when someone is dying:
Don't talk about when your aunt or your grandmother or dog died. This isn't about you, and the sick person shouldn't have to comfort you; it should be the other way around. There are concentric circles of grief: the patient is at the center, the next layer is the caregiver, then their kids, then close friends, and so on. Figure out what circle you're in. If you are looking into the concentric circles, you give comfort. If you're looking out, you receive it.
Don't say things that aren't true: You're going to beat this cancer! It's all about a positive outlook! You look stronger! You aren't fooling anyone.
Don't overact your happiness. It's okay to be sad with someone who is dying. They've invited you close at a very tender time, and that's a moment of grace you can share.
Don't think you have to discuss the illness. Sometimes, a sick person needs a break. And if you ask up front if he wants to talk about how he feels--or doesn't--you're giving him control at a time when he doesn't have a lot of choices.
Don't be afraid of the silence. It's okay to say nothing.
Don't forget: No one knows what to say to someone who's dying. Everyone is afraid of saying the wrong thing. It's more important to be there than to be right."
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@Taita love your pictures and you look splendid gal. Of course your grandaughter is just as adorable as the pictures from last year's trip. What great memories you've all been making. My only excitement seems to be my acceptance that I need more than just a cane to keep me on my feet. So the Red Rider joined our household along with my return from the hospital last week. Now to to make streamers for the handles, get a little bell to annoy people in front of me, and since I make sure the wheels have spokes insert some playing cards so it sounds like a pathetic motorcycle.
A yearish on Taxol and Avastin? That's about where I was when my Gemcitiabine and Avastin stopped working. I'm now just on a Gemcitabine protocol and we'l see after a couple of cycles whether it's keeping me stable or not. Just had cycle 1 Day 1 on Wednesday so we'll see end of June where we stand. Pure Taxol or even Gem might be an option for you if no new trials are in the hopper right now. You'll weather this like the trouper you are and have been all along. Just continue to stay focused on today....yesterday is gone and who knows what tomorrow might bring.
A yearish on Taxol and Avastin? That's about where I was when my Gemcitiabine and Avastin stopped working. I'm now just on a Gemcitabine protocol and we'l see after a couple of cycles whether it's keeping me stable or not. Just had cycle 1 Day 1 on Wednesday so we'll see end of June where we stand. Pure Taxol or even Gem might be an option for you if no new trials are in the hopper right now. You'll weather this like the trouper you are and have been all along. Just continue to stay focused on today....yesterday is gone and who knows what tomorrow might bring.
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@Tinazzie you're sure right about so many of us reaching ends of current treatment and looking for solutions moving forward. I've noticed the activity on this site comes and goes in cycles. Needless to say we get very active as our members struggle to understand thsir status, learn about treatment options and in some cases deal with persistent discomfort. It's comforting to know they come here for comfort and encouragement when needed.
I'm delighted to be out of hospital for the third time this year. What an auspicious start to the new year....NOT! But at least we've finally determined the cancer and treatment and the kidney issues have no relationship to the other so can be treated separately. It is a good reminder though that outside of our cancer and related issues can often be other heath factors that need attention and might slip by an oncology team who are focused on cancer related issues. Do make sure issues that are persistent get brought to the attention of our family physicians when not of primary concern to your cancer support. Thanks to the right attention to my kidneys I'm happy to say I"m back in treatment for my cancer and my kidney issues are understandable and manageable now. In fact, even though I had chemo yesterday I'm feeling pretty darn good today.
I'm delighted to be out of hospital for the third time this year. What an auspicious start to the new year....NOT! But at least we've finally determined the cancer and treatment and the kidney issues have no relationship to the other so can be treated separately. It is a good reminder though that outside of our cancer and related issues can often be other heath factors that need attention and might slip by an oncology team who are focused on cancer related issues. Do make sure issues that are persistent get brought to the attention of our family physicians when not of primary concern to your cancer support. Thanks to the right attention to my kidneys I'm happy to say I"m back in treatment for my cancer and my kidney issues are understandable and manageable now. In fact, even though I had chemo yesterday I'm feeling pretty darn good today.
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@Taita Thanks for the beautiful pics!
Hi everyone. Well...I was back at self-advocating today. I have been waiting to hear from the medical oncologist about an appointment...it's been over a week and I decided that I wasn't waiting any longer so I called the cancer clinic this morning and my nurse spoke to him directly. He is aware of "me" 🤣🤣 Unfortunately, there is a process to get appointments set up...so, still waiting! I haven't decided how annoying I want to be yet, but I really can't afford to "wait" any longer. If I haven't heard anything by Monday or Tuesday next week...they'll be hearing from me again. In the meantime, I am preparing a list of all of the questions I have for the medical oncologist when I do get my appointment.
Hi everyone. Well...I was back at self-advocating today. I have been waiting to hear from the medical oncologist about an appointment...it's been over a week and I decided that I wasn't waiting any longer so I called the cancer clinic this morning and my nurse spoke to him directly. He is aware of "me" 🤣🤣 Unfortunately, there is a process to get appointments set up...so, still waiting! I haven't decided how annoying I want to be yet, but I really can't afford to "wait" any longer. If I haven't heard anything by Monday or Tuesday next week...they'll be hearing from me again. In the meantime, I am preparing a list of all of the questions I have for the medical oncologist when I do get my appointment.
GloHo
1
Re: Hello
Please don't apologize and I did not think that when I read your post. What I did think was someone reaching out to a community of people going through some similar issues. I will say, I, for one have had my 'dark' moments as well. I would think that most have. It is hard not to especially initially and also when we sit in 'unknowns'.
I have done a lot of reading on death and dying and have a friend doing a course currently on becoming a death doula. I have learned a lot throughout it all and continue to learn. I have learned MAID is not the only option and that if one does not apply, it is fairly smooth process to have the application go through compared to before. I learned about Palliative sedation as well. Most of all, I have learned that the choice is ours to make. I, personally, have changed some of my thoughts on it from my reading. Some of the books give me a lot of food for thought. I work with a Palliative doctor as well so we revisit this scenario as my condition changes. It helps me a lot. What I have learned I don't want is the opportunity for my hubby and boys to miss out on having some meaningful conversations along the way which will help them with the grieving process. Interestingly enough, I recently read an article on a woman who chose MAID (brain cancer) but before her day came she taught her hubby how to cook, kids other things etc. The day of her chosen date she did laundry, tidied up, had a bath, came out and said "I am ready." What all of this says to me is that we can empower ourselves on this journey esp the latter part. That is enlightening to me.
I have done most of the legal stuff needing to be done and now am working on my 'legacy' stuff when I feel up to it. Like I mentioned in today's chat, one does not have to do it all alone. Let others help you with some of it. Like photos, memory books etc. If one even wants, you can dictate and someone can write.
It is all there. Pick away at what you want to and feel up for. Make informed decisions and enjoy what is in front of you. Like how the sun peeked out after the rain today. Or how I saw a Robin in my backyard today. I feel like I view things with more child-like eyes now instead of glossing over. It isn't always rosy and the darkness does creep in. It's okay as long as it doesn't linger too long.
Glad you found us and hope this site helps you along your journey.
Take care of YOU!
I have done most of the legal stuff needing to be done and now am working on my 'legacy' stuff when I feel up to it. Like I mentioned in today's chat, one does not have to do it all alone. Let others help you with some of it. Like photos, memory books etc. If one even wants, you can dictate and someone can write.
It is all there. Pick away at what you want to and feel up for. Make informed decisions and enjoy what is in front of you. Like how the sun peeked out after the rain today. Or how I saw a Robin in my backyard today. I feel like I view things with more child-like eyes now instead of glossing over. It isn't always rosy and the darkness does creep in. It's okay as long as it doesn't linger too long.
Glad you found us and hope this site helps you along your journey.
Take care of YOU!
Hello
I'm Ingrid from Ottawa. I was diagnosed September 2016 with HGSC stage 3 recurrent ovarian cancer. What a ride it has been! It had metastisized to my stomach. I had the complete hysterectomy, debulking and chemo. To date I've had 4 lines of chemo (6 treatments each, 3 weeks apart). I finished my last line in January of this year. I'm waiting for a CT scan to see what the tumours in my abdomen are doing. At the end of this line of chemo they hadn't changed in size.
So far, besides chemo no other treatments/drugs have been prescribed. I have read about other treatments patients go through and wonder if I'm missing something...
I realize that every patient is different. The question I have is if the tumours are still there (3) why wouldn't they do another surgery? Is that something that is done? Sometimes I wish that I had a person with me during my appointments that better understands the system/disease that could ask the questions.
It would be nice I think to talk to someone who is going through similar experiences as I find that I don't always talk about my cancer as it can get a bit dark at times and I'd rather spare people the thoughts.
So far, besides chemo no other treatments/drugs have been prescribed. I have read about other treatments patients go through and wonder if I'm missing something...
I realize that every patient is different. The question I have is if the tumours are still there (3) why wouldn't they do another surgery? Is that something that is done? Sometimes I wish that I had a person with me during my appointments that better understands the system/disease that could ask the questions.
It would be nice I think to talk to someone who is going through similar experiences as I find that I don't always talk about my cancer as it can get a bit dark at times and I'd rather spare people the thoughts.
ribohm
1
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@GloHo
You said it! It is a "fine line". Only you know what that is and what that looks like for you. We can over extend ourselves at times which makes it difficult. I believe we do it for "fear of missing out" so to speak. Meaning we try our best to find so much to look forward to and experience plus leave behind that it can be all consuming at times. I truly wonder how I every would have worked through all of this. I would have given it my best shot, that much I know. If I also know myself, I probably would have been in hospital because of it. So I am glad I retired.
Do what you can, when you can and enjoy. Take the time to slow down and smell the roses. We forget about that a lot or at least I do and I have to remind myself to do it.
I am looking forward to spring and seeing the new growth sprouting from the earth.
You said it! It is a "fine line". Only you know what that is and what that looks like for you. We can over extend ourselves at times which makes it difficult. I believe we do it for "fear of missing out" so to speak. Meaning we try our best to find so much to look forward to and experience plus leave behind that it can be all consuming at times. I truly wonder how I every would have worked through all of this. I would have given it my best shot, that much I know. If I also know myself, I probably would have been in hospital because of it. So I am glad I retired.
Do what you can, when you can and enjoy. Take the time to slow down and smell the roses. We forget about that a lot or at least I do and I have to remind myself to do it.
I am looking forward to spring and seeing the new growth sprouting from the earth.