Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Holiday and Feelings
Strongwoman
Moderator
Good Afternoon Ladies,
I am opening up this thread so others can post here and can see what is going on with others. Whether you celebrate anything or nothing, this can be a tough time of year as you see or hear about the hustle and bustle all around you while you sit in your own unique situation. Tough indeed. There are many thoughts or things that can be put here so I will start with a few things but please know these are things that come to my mind and welcome it all on future posts.
This time of year can be wonderful for some, it is a breath of fresh air as they possibly found out this year about their diagnosis, went through some sort of surgery/treatment and came out the other side knowing they were in the clear or have been deemed NED. That is awesome and celebrate it like it is no one else's business. I am happy for all that this applies to. The way the pandemic has affected all of our lives this past 2 years, I feel that everyone (diagnosis or no diagnosis) is celebrating family and what that means to be with them due to not being able to get together before. We have recognized as a society that we need that interaction in whatever form that takes for you specifically. Human contact is something that NOTHING can replace. It is why I entered the career I did when I was younger. At that time, computers were starting to take hold and they were coming up with newer and newer things. Especially things that could replace a human in the workplace. So, I decided that I didn't care how many advances they made, they can't and will not replace a human touch. It is impossible. It is the energy you feel from one person to another, not just the physicality of it. So I entered into massage therapy and until I was strongly urged to wrap it up this year by my team, I almost made it to 30 years in the profession and full time that I ended my career. It is not something that is commonality in that profession to have such longevity in it as most move on in the 5-10 year range.
This leads me to my next comment. There are those who have recently found out that they are no longer NED and require further treatment. This could be their first time, second or for some, 5th or 6th. I have seen many ladies on here relay their stories of what they have been through and it is very incredible. There strength, courage and support systems have definitely helped. Many are HGSC (which I have found by reading here), and seems to be a common thread of treatment, recurrence, treatment. This does not diminish in any way what any one of us goes through. It is tough no matter which recurrence it is. For others, they have reached the end of treatment and/or decided that they do not wish to continue for whatever reason that is.....I say good for you! It takes extreme courage to do that. It takes courage to tell your family and loved ones that as well. It is not an easy road.
All of us are on our different journeys with some similar threads. This forum is definitely an example of how a diagnosis of HGSC or LGSC or the other rarer types can present in any one of us differently and therefore so will the outcome. We never know where any of us are at unless we "share" on this forum. There are "ugly" sides of this disease and they do need to be out in the open and spoke about. It is good to have hope, bravery, the will to go on etc but there are some that are tired, done with it, can't fight any more. All of it is okay. Feel what you need to feel. Write about it if you need to. I know someone who keeps a "good" journal and another "bad" journal. In the bad journal, they put a warning on it "read at your own risk". In there, they put all the yucky, unkind, mean things they think sometimes either about a certain person(s), themselves, maybe even someone on their health team. If it works and gets it off one's chest, do it but don't keep it in. Some have journaled by putting random words that come to mind on a page, some write and burn, some just write. Some don't do any of that and find a way to get it out. I know that @Fearless_Moderator has shared that she has had some "outbursts" that included throwing dishes into her pond. It probably felt wonderful to do it at the time and such a release. Others cry and let it out, meditate and imagine things floating away, boxing them up etc. There is no one way that is "THE" way.
My point is, if you are feeling low now or in the coming weeks and/or even into January, recognize it. Reach out if you need to. Try not to sit in it and ask for help if you require it. There are mental health hotlines that are 24/7 in every province and probably around the country. Living with or having this disease is tough and it comes with it's own challenges let alone adding in holidays, family, friends or someone on your team. I think the best thing to keep in the back of your mind is either asking yourself or someone close to you that if you feel yourself going down a rabbit hole (depression lasting too long, extreme sadness, etc), that you get the help you need. It is tough to watch the world around us moving and planning when for a lot of us, our futures are uncertain or unclear.
I found that I feel like I am on a rollercoaster lately and hate it. I can be fine one moment, angry, down, back up, etc or a few of them combined. I was wondering if it was me, my medication or if I needed help. I found that what I, personally, am experiencing is called "Anticipatory Grief". You may not know what that is but here is a link to what it is. It can happen for a various of reason not just health reasons. Now that I know what it is, I can understand it better. Here is the link:
Anticipatory Grief: Symptoms and Purpose (verywellhealth.com)
I am on my own journey of planning for a future without me in it. I don't know "when" but while I have the ability to, I am doing things I want to do. I found some books at Indigo Chapters that help with leaving behind some memoirs. Here are the names of them: The Story of My Life and The Book of Me. I found one to leave for my partner is called Why I Love You. All of them have prompts in them to get you thinking and writing. I have found as I do these, I am sometimes remembering things I had forgotten. I do this when no one is home so if I need to have a good cry, nap or whatever I can and not have to explain anything to them. I am also creating a box for each of my boys and in it will be things like their school stuff I have kept, a book I liked to read to them, perhaps a personal journal, etc.... I am not done that yet either so am still thinking. I know some are making things for their loved ones and have asked for craft stuff to do so. Dual purpose, legacy project and keeps us busy at the same time.
I would like to end with saying "Do your best to keep in the moment". Our minds can take us lots of places if we let it. Get outside if you can even if it is standing at the front door stationary for a couple of minutes. It may change your perspective or where your mind was taking you. Laugh or for goodness sakes, laugh. Find a silly show or movie or book or something. It is so good to laugh. Listen to music and sing....who cares if you don't sound good. Dance......dance like the world is your stage. No our bodies (for some) don't do or look like they used to so get moving in some way and let your body hum with the energy. For those that are bed bound, find peace, enjoy the embraces you receive, the talking your loved ones do and let go.
Here are some passages I have found in some books I have read that I will leave you all with. They are exactly from the book so I apologize ahead of time for the lack of pronouns.
The Book of Two Ways by Jodi Picoult
"There are concentric circles of grief: the patient is 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."
"When you lose someone you love, there is a tear in the fabric of the universe. It's the scar you feel for, the flaw you can't stop seeing. It's the tender place that won't bear weight. It's a void."
When Bad Things Happen To Good People
"The facts of life and death are neutral. We, by our responses, give suffering either a positive or negative meaning."
Die Wise by Stephen Jenkinson
"Everything we do and don't do makes a wake, a legion of waves and troughs that pound the shores at the edges of what we mean, grinding away on the periphery of what we know. They go on, after the years in which we lived our individual lives are long passed."
"That is where fear lives, in the not yet, the not now, the not me."
"Not everyone in the world knows what we know, fears what we fear, sees what we see, loves what we love"
And with that last quote, I will leave you all. It is a profound quote and is so true for every single one of us on this journey of what is called Ovarian Cancer.
Be YOU!!! It is what those around you have gravitated to for a reason.
My hope is that this has resounded with some out there who may not know where they are currently "sitting" and give comfort to them.
I am opening up this thread so others can post here and can see what is going on with others. Whether you celebrate anything or nothing, this can be a tough time of year as you see or hear about the hustle and bustle all around you while you sit in your own unique situation. Tough indeed. There are many thoughts or things that can be put here so I will start with a few things but please know these are things that come to my mind and welcome it all on future posts.
This time of year can be wonderful for some, it is a breath of fresh air as they possibly found out this year about their diagnosis, went through some sort of surgery/treatment and came out the other side knowing they were in the clear or have been deemed NED. That is awesome and celebrate it like it is no one else's business. I am happy for all that this applies to. The way the pandemic has affected all of our lives this past 2 years, I feel that everyone (diagnosis or no diagnosis) is celebrating family and what that means to be with them due to not being able to get together before. We have recognized as a society that we need that interaction in whatever form that takes for you specifically. Human contact is something that NOTHING can replace. It is why I entered the career I did when I was younger. At that time, computers were starting to take hold and they were coming up with newer and newer things. Especially things that could replace a human in the workplace. So, I decided that I didn't care how many advances they made, they can't and will not replace a human touch. It is impossible. It is the energy you feel from one person to another, not just the physicality of it. So I entered into massage therapy and until I was strongly urged to wrap it up this year by my team, I almost made it to 30 years in the profession and full time that I ended my career. It is not something that is commonality in that profession to have such longevity in it as most move on in the 5-10 year range.
This leads me to my next comment. There are those who have recently found out that they are no longer NED and require further treatment. This could be their first time, second or for some, 5th or 6th. I have seen many ladies on here relay their stories of what they have been through and it is very incredible. There strength, courage and support systems have definitely helped. Many are HGSC (which I have found by reading here), and seems to be a common thread of treatment, recurrence, treatment. This does not diminish in any way what any one of us goes through. It is tough no matter which recurrence it is. For others, they have reached the end of treatment and/or decided that they do not wish to continue for whatever reason that is.....I say good for you! It takes extreme courage to do that. It takes courage to tell your family and loved ones that as well. It is not an easy road.
All of us are on our different journeys with some similar threads. This forum is definitely an example of how a diagnosis of HGSC or LGSC or the other rarer types can present in any one of us differently and therefore so will the outcome. We never know where any of us are at unless we "share" on this forum. There are "ugly" sides of this disease and they do need to be out in the open and spoke about. It is good to have hope, bravery, the will to go on etc but there are some that are tired, done with it, can't fight any more. All of it is okay. Feel what you need to feel. Write about it if you need to. I know someone who keeps a "good" journal and another "bad" journal. In the bad journal, they put a warning on it "read at your own risk". In there, they put all the yucky, unkind, mean things they think sometimes either about a certain person(s), themselves, maybe even someone on their health team. If it works and gets it off one's chest, do it but don't keep it in. Some have journaled by putting random words that come to mind on a page, some write and burn, some just write. Some don't do any of that and find a way to get it out. I know that @Fearless_Moderator has shared that she has had some "outbursts" that included throwing dishes into her pond. It probably felt wonderful to do it at the time and such a release. Others cry and let it out, meditate and imagine things floating away, boxing them up etc. There is no one way that is "THE" way.
My point is, if you are feeling low now or in the coming weeks and/or even into January, recognize it. Reach out if you need to. Try not to sit in it and ask for help if you require it. There are mental health hotlines that are 24/7 in every province and probably around the country. Living with or having this disease is tough and it comes with it's own challenges let alone adding in holidays, family, friends or someone on your team. I think the best thing to keep in the back of your mind is either asking yourself or someone close to you that if you feel yourself going down a rabbit hole (depression lasting too long, extreme sadness, etc), that you get the help you need. It is tough to watch the world around us moving and planning when for a lot of us, our futures are uncertain or unclear.
I found that I feel like I am on a rollercoaster lately and hate it. I can be fine one moment, angry, down, back up, etc or a few of them combined. I was wondering if it was me, my medication or if I needed help. I found that what I, personally, am experiencing is called "Anticipatory Grief". You may not know what that is but here is a link to what it is. It can happen for a various of reason not just health reasons. Now that I know what it is, I can understand it better. Here is the link:
Anticipatory Grief: Symptoms and Purpose (verywellhealth.com)
I am on my own journey of planning for a future without me in it. I don't know "when" but while I have the ability to, I am doing things I want to do. I found some books at Indigo Chapters that help with leaving behind some memoirs. Here are the names of them: The Story of My Life and The Book of Me. I found one to leave for my partner is called Why I Love You. All of them have prompts in them to get you thinking and writing. I have found as I do these, I am sometimes remembering things I had forgotten. I do this when no one is home so if I need to have a good cry, nap or whatever I can and not have to explain anything to them. I am also creating a box for each of my boys and in it will be things like their school stuff I have kept, a book I liked to read to them, perhaps a personal journal, etc.... I am not done that yet either so am still thinking. I know some are making things for their loved ones and have asked for craft stuff to do so. Dual purpose, legacy project and keeps us busy at the same time.
I would like to end with saying "Do your best to keep in the moment". Our minds can take us lots of places if we let it. Get outside if you can even if it is standing at the front door stationary for a couple of minutes. It may change your perspective or where your mind was taking you. Laugh or for goodness sakes, laugh. Find a silly show or movie or book or something. It is so good to laugh. Listen to music and sing....who cares if you don't sound good. Dance......dance like the world is your stage. No our bodies (for some) don't do or look like they used to so get moving in some way and let your body hum with the energy. For those that are bed bound, find peace, enjoy the embraces you receive, the talking your loved ones do and let go.
Here are some passages I have found in some books I have read that I will leave you all with. They are exactly from the book so I apologize ahead of time for the lack of pronouns.
The Book of Two Ways by Jodi Picoult
"There are concentric circles of grief: the patient is 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."
"When you lose someone you love, there is a tear in the fabric of the universe. It's the scar you feel for, the flaw you can't stop seeing. It's the tender place that won't bear weight. It's a void."
When Bad Things Happen To Good People
"The facts of life and death are neutral. We, by our responses, give suffering either a positive or negative meaning."
Die Wise by Stephen Jenkinson
"Everything we do and don't do makes a wake, a legion of waves and troughs that pound the shores at the edges of what we mean, grinding away on the periphery of what we know. They go on, after the years in which we lived our individual lives are long passed."
"That is where fear lives, in the not yet, the not now, the not me."
"Not everyone in the world knows what we know, fears what we fear, sees what we see, loves what we love"
And with that last quote, I will leave you all. It is a profound quote and is so true for every single one of us on this journey of what is called Ovarian Cancer.
Be YOU!!! It is what those around you have gravitated to for a reason.
My hope is that this has resounded with some out there who may not know where they are currently "sitting" and give comfort to them.
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Comments
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Wow, thank you for sharing your experience: feelings, thoughts, history and plans. What a generous gift to us all particularly at this time of year when many of us are feeling our losses and fears while the rest of the world is celebrating and gathering together.I’m also in the anticipatory grief stage while still grieving the loss of my spouse a year after my diagnosis, treatment and a quick recurrence. My family members (siblings, nieces and nephews) are scattered across the country, nowhere close to my home. Christmas was always celebrated at home with my husband; we exchanged gifts, went for a long walk in the woods, then he would spend the afternoon preparing a feast for dinner. Although now I receive many invitations to share Christmas with friends and their families, I stay at home because Christmas for me has always been a family celebration and I don’t want to intrude. This year I’ll definitely be at home, dozy with meds from a case of shingles, waiting for hernia surgery, then hopefully back on chemo (which has been in hold for the surgery).I’m considered “terminal” now with metastases and was told by my doctor last spring that I had a few months to maybe a year left, but I’m still here. There are days when I’m sad, and other days that bring me joy and a determination to be here beyond that prognosis. At the same time, I’m trying to prepare: clearing out stuff that is not of use to anyone, updating my will, arranging for the care of my pets. That part isn’t easy and I’m not very good at attending to all the details. (Anybody have any tips on what and how to do it all? Is anyone else going through this part?). I know my reluctance and the pressure to get it all done quickly is holding me back.So, back to Christmas: I’ll be glad when it’s over.0
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@HoldingOn
Thank you for sharing what is going on with yourself. It is through this honesty and bravery to feel safe to post topics like these that we assist each other in this process.
As for the holidays, my elderly Aunt (83) lives alone and her son's family don't always get together for Christmas. We already had the "discussion" about Christmas and her joining us. I told her that she isn't staying home. Those are my wishes especially if this may be my last (and perhaps not). As tough as it might be, I am trying to "normalize" it as much as I can but am positive there will be lots of tears this year.
Sorry to hear you had the pain of going through shingles as it is VERY painful from what I have heard. I also have a hernia but they will not open me up again unless it is emergency to my health. I wish you the best from recovering from your surgery.
I am going through what you are going through. I was deemed "incurable" and was informed in June of this year that I had "maybe 2 years or less" by 5 doctors, one of which was a palliative doctor and one ER doctor. So it hit home and I came to terms with it and ended my career as mentioned.
I have been preparing since. Looking into my life insurance, my kid's life insurance, updating our wills, applied for Disability Tax Credit, applied for CPP-Disability, downsized some stuff, making some "legacy" things to leave behind, thinking about specific things I would like certain people to have and why. This did not happen overnight and some ideas come to me over time. I have found that as I can check things off my list, my weight on my shoulders is lifted just that little bit more. I attend a weekly Palliative Group at Hospice as well as am reading books on Dying and Grief which is helping me. There are some days that I don't work on anything because I don't feel like it which is fine too even though I know the time is ticking.
In the New Year, sometime in January, I am going to explore things like funerals, cremation etc. I saw at a local store that they have these pendants that can be worn but that loved ones can put ashes in. I am contemplating on putting that in my little "packages" for some of them. But that is if I choose cremation. I am thinking I want a Celebration of Life and I want everyone to wear bright colours and have fun.
What I have learned is there is no right or wrong. Do what it is you feel you need to do on your own timeline and how you feel. I, personally, am experiencing more anxiety and will be speaking to my team about that very soon to see what can or can't be done about it. Even with a sleeping med, I feel like I could stay up and just "do" stuff to get it out of my head. I don't but find I am reading until midnight, taking my sleeping aide and then am back up by 6am. It isn't enough sleep but then again, there will be a time (I know) where all I will do is sleep so I think about that too.
This is all tough. Reach out to your team or local Hospice and see if there are any programs or people you can connect with.
All I can say is this....YOU ARE NOT IN THIS ALONE!!!!
As much as I am looking forward to seeing people, I will also be glad when they return to their proper places so I can work on "my stuff" and deal with whatever emotions come my way.
Does any of that help?
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I have never really discussed or asked the question as it pertains to time left. I imagine that at some point someone in my orbit of healthcare staff may bring it up. I understand where I am. Metastasized HGS 3C. Since I also have heart failure, it is starting to get tough with chemotherapy. It may be doing more harm than good. It's probably time to decide about quality of life. My husband and daughters do not understand , I'm sure. I think that after Christmas I really have to face this conversation.0
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@Cecile21
It is very hard for loved ones to watch us go through what we go through and to know they can't "fix it". I believe they do their best to put up a "brave" front but underneath there is a whole lot more simmering. It is important to remember when you do talk with them (whenever that is) that there are programs out there for them and resources they can tap into to discuss what they are feeling. It is not something "we" as the ill person can field all of it for them.
Now saying that, there are some, who choose to live going through this not knowing and don't want to know what a "worse case scenario" is. If that helps them and they don't want to know, so be it as the information given is a heavy topic and some want to live in the "present" which helps them continue along with their process. It isn't wrong in any way. Everyone has to their own choices to make.
As for how you are feeling with your co-morbidity (what it is called when you have an illness and another complicating factor), you may or may not want to know. It may or may not help to discover when to stop a treatment due to what it is doing to the other condition. That is only something your doctor/team can answer for you and your specific case. I, personally, need to know and am eased by what I know compared to sitting in "unknowns". My palliative doctor was wonderful and came to the house and spoke to everyone as I felt that they weren't "understanding" everything about what was going on with me. She was wonderful. She put everyone on the "hot seat" and asked them questions like, "what do you understand is going on?", "what is your fear?", and "what do you think the worst case scenario is?" and we went through all of them openly and honestly. It helped as I felt they were questions that they wanted to ask but not necessarily to me, myself. So we got it all out in the open. It is something maybe perhaps you can discuss with your team if it is time to do that with you....work with a palliative doctor? I don't know the answer to that for yourself but you can find out. Just a thought.
In the meantime, I am wishing as good as health that you can have over the next couple of weeks, hopefully enjoying some laughs, creating memories and the love that is felt is extra special. Absorb it all in and enjoy what is no matter how you celebrate.
For those others going through a roller coaster as well, in a book I read (I forget which one exactly) if you have any regrets, recognize them and put them aside. It said to pretend you are taking a rock from one pile, holding it and then letting it go into another pile and leaving it there. It is done. The visual helped me and I am practicing this as I move forward.
Not sure if you can join the chat tomorrow but would be nice if you can. If not, enjoy, stay safe (storm coming) and breathe and soak up all the memories you will create and make.
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Thank you for sharing your experience @Strongwoman; we’re in the same place in many ways and it feels good to know that there are others out there facing the same challenges. I too have problems sleeping, often going to bed at 3 and waking up at 7. None of the meds I’m on for sleep are helping much except for pregabalin, which was just recently prescribed for the shingles pain and is so effective for that. But with further reading, I discovered that pregabalin targets visceral pain. Visceral pain is different from somatic pain (see Web MD: What Is Visceral Pain) and it’s decreasing the hernia pain as well as the pain in my hip and leg that was caused when a surgeon accidentally clipped my femoral nerve during the initial debunking surgery in 2018. The bonus is that I sleep 7 hours straight now, and getting adequate sleep is, as we know, so important to our wellbeing and energy levels. Anxiety is another battle and I find a small amount of ativan sub-lingual helps when I get immobilized with fear. Some doctors are reluctant to prescribe it but I think your palliative doctor wouldn’t hesitate. Deep breathing, mindfulness-based techniques and acupressure are other options I’ve used with some success.
Thanks for sharing, too, your experience with preparations for death. It’s something I truly struggle with and yes, like you, checking things off my list lessens that sense of urgency and guilt for not getting it all done right now. The doing is tough and emotional, intertwined as it is with my husband’s belongings. Sometimes I wish I had a death doula who would be organized and objective and could make the appointments and ease my way through the process. (If anyone has any suggestions for someone in the Vancouver area, I’d be grateful to get their contact information.)
I wish you a peaceful Christmas this year and for many years to come @Strongwoman, full of love and laughter that your family will hold in their hearts forever.And thank you being so frank in sharing your journey; knowing that I’m not alone on this path makes it easier to keep walking0 -
Hello to All.
Checking in to see if anyone needs a pick me up today.
Send a shout out if you do. It can be a tough day.0 -
@HoldingOn
Thank you for sharing. From what a friend of mine out in B.C. has said, the death doula scene is larger and more present than it is here in Ontario. I had not heard the term until she brought it up and then read about it (kind of) in Jodi Picoult's Book of Two Ways. It is an interesting concept. I do not know costs of that either which would be interesting to know. Could you ask about that on a social media platform or through one of your caregivers if they are aware of any in your area?
Thank you for the words of encouragement too.
How did you manage over the holiday?
Should be interesting to see how emotions/moods/physical pain change or remain unchanged in the coming days. Out here in Ontario, we will be changing from a major snow event to warming temps and rain into next week. That can affect many things and many a person.0
