Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 Peer Support Volunteer. 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).
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@Sandi6
Boy…that is tough one. @Strongwoman is a very wise woman - heed her advice!!
I very much remember the uncertainty of how to move forward after those first chemo sessions ended and the anxiety of having my chemo security blanket removed. But I made it through and it did get better as time passed…still some ups and downs and that’s normal. Anxiety did return at Onc appts and scans…this is normal.The other thing I found personally helpful was to consider the “what-ifs” and the “unknowns” that popped into my head and think about what I would want to do in those situations. Once I worked thru those things, I found that I could relax and move forward. I do not believe in worrying about things that are out of my control or that may not even happen. But I do believe in being prepared and believe, for me, taking the time to address them ahead of time made me feel prepared to deal with them IF they should arise.I would also often approach my Onc with what if scenarios to find out what would be done on the medical side of things, too. I have to say, there was often a feeling of relief after having these heart-to-hearts with my Onc. It’s often worse to let your imagination wander than to get a definitive response to those unknowns floating around in your mind.There are also a lot of resources out there. OCC has books, videos and Zoom meetings. Wellspring has many activities both in-person and online. I immersed myself in Zoom meetings with both ovarian cancer patients and mixed cancer groups - the diagnosis is the same, the way we deal with things may be different but it was helpful to hear how others coped and moved forward. In addition to this group, you are part of a collective group…free to speak your mind and ask questions in whatever platform you decide to participate in and knowing that they understand what you are going through. There are also professionals available…social workers, psychologists, massage therapists, alternative therapy specialists…the list goes on.Yes, lots of days wth tears, anger, grieving and feeling mentally and physically worn down. One day at a time…you will get through it!!Let the new you embrace each new day with strength, determination and positivity.Sending hugs and support your way 🤗.0 -
@Strongwoman @GloHo thank you both for responding to my ’cry for help’. I’ve always been a strong, optimistic person but this has me feeling very vulnerable. I appreciate your advice and will try to just focus on each day, each moment as it comes. I’m finished chemotherapy at the end of May, just in time for boating and golf season, both of which I love 💗 I’ve placed affirmations from ‘Louise Hay all around the house. My husband is incredibly supportive, positive and takes such great care of me. I will start thinking about all of the good in my life, and less about my prognosis.
One concern I have is that I haven’t found anyone who has been diagnosed with ovarian carcinosarcoma. It would bring me some comfort to be able to hear other people’s stories, since it’s so aggressive. It scares me 😱
Thanks for listening. Much love 💕1 -
Well said @GloHo and @Strongwoman I couldn't have said it any better. How you compare chemo to a security blanket is precisely how I felt when chemo ended 4 months ago and that is when I started to spiral out of control with the inundation of my thoughts and fears.
I felt entirely unprotected once treatment stopped and was surprised by this feeling. I thought I would be much happier, but that was not the case. It took a solid month or so to pull myself out of the what if hole... What if what? I would tell myself. The cliche I can get hit by a car tomorrow would play over in my head and that kinda helped me to create some form of a daily routine to distract myself while doing things within my power to give me the edge for surviving.
I realize we are all in different places in our journey but thus far, I have been blessed that I do not have any pain ( except for shoulder ) which allows me to walk, walk, and walk again with some gym mixed in. We all know exercise is good, but I read a handful of small studies that showed a 33% reduction in death years 1-4. I took that and ran with it! It's within my control to exercise everyday.. for now... And it has become my new security blanket.
Like mentioned by our wise teal sisters there is no one size fits all approach or answer... Dealing with this life-altering diagnosis can be beyond challenging some days. I agree with all they have said from the anxiety , tears anger and the list goes on and on.
@Sandi6 you will find your way. Maybe not tomorrow or next week but it will come. I'm still working at it. I find I'm almost having a harder time grieving the loss of not being able to have a child of my own to the point my eyes fill up with tears when I'm out and I see a woman holding a little baby. I don't feel anger about it though and I know my heart will heal. One day.1 -
I have been reading all your posts, and feel humbled by everyone’s courage and intelligence and determination. You are all working through such challenges. I felt unable to join in the conversation as my present state is not so challenging right now. Remission. But I suffer pain frm Chronic Pelvic Pain ( CPP ) and so I focus on trying to reduce that so I can get out and do things. But the discussion about the process…I have to say that the words of strongwoman, “ the new me” really hit home. Two years and I am a very different person. I can see that this cancer has allowed me to shed bits of myself that were holding me back, that were about other people’s dreams, not mine, and that my fears were not grounded in reality.. It has brought my husband and I closer together and I am now able to accept, even enjoy, his loving and tender care of me. Being dependent has never been comfortable. Thats probably why I became a nurse and a therapist. Its still a bit hard.I could write more but it would become a novel. Hey, lets write a novel together. One chapter each. Fundraiser.You are my heroes.1
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@melissa. Thanks for the support. I am wondering if its been done before, maybe @Strongwoman would know.0
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@Hooodith I agree! Fantastic idea! 💡 Who cares if it’s been done before. We’re different people with life experiences through our ovarian cancer journey and all have beautiful perspectives to share. I believe it would help many, as women are unfortunately being diagnosed with this awful disease every day.0
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A couple of things today..
I have been complaining of just falling asleep where I sit over the last few months. These sleeps were of varying duration. Normally I wouldn’t think anything about it except one of the Drs in emerg suggested that I may have been passing out - not sleeping. I thought that was a bit far fetched - I didn’t have any of the passing out symptoms! I thought it was just phase 2.0 of fatigue. However, since my gas/passing out episode in the hospital last week, I noticed that I have not been having these little sleeps. I had also mentioned this sleeping issue to my care team previously, and on a number of occasions, but they didn’t seem to think it was anything out of the ordinary - so I just adapted. I have not made any medication changes other than stopping the high blood pressure meds in Feb, and the hospital didn’t give me anything out of the ordinary when I was in, so I can’t figure out why the sleeping episodes stopped. I am wearing a portable heart monitor for a week and I was hoping it might pick up whatever was going on during these sleeps…but since I am no longer experiencing them, guess I’ll never know. 🤣🤣 Now, I am still fatigued/tired and do nap, but in a ‘normal’ way.
The second thing..,my hair continues to thin after stopping weekly Paclitaxel almost a month ago. This seems odd to me. Previously, my hair would start growing back before treatment was even finished. Thank goodness it’s an even thinning over my entire scalp and not patchy. Just another oddity of side effects and how different they are each time you start a new treatment schedule (even with the same drugs)!@Hooodith Interesting idea for sure! I’m not a storyteller though and wouldn’t know where to begin!!0 -
OMG Ladies....you do get busy at times on here and then I have to play "catch up".
First @Sandi6 there are some things I would like to say before I get into anything else. Do NOT apologize on this forum. We all go through things and at different times. It will ebb and flow and that is okay. To not be ok is ok. The concern comes if one gets stuck in the "not okay" phase for too long. I and the other Teal Sisters don't want you to focus on the positive. This is a grieving process and I urge you to read past posts on Anticipatory Grief. It is real and something we all go through. I want you to share with us how you are feeling on any given day. Good, bad or indifferent. It is how you will go along on your journey.
I think you should reach out to wellspring.ca and see if you can connect with someone else who has the same type of cancer that you do. There may be someone or no one but it is worth a shot. They do a free one on one peer support program that you may find helpful. There are all kinds of resources out there for anyone to utilize. Wellspring.ca is one example of where you can find some. It is normal to be scared and unsure and we have all been there at some point in time. It is hard knowing what one has and the median prognosis of such without thinking of how it might relate to us with our own cases. As I stated in the other post, try to "chunk down" your days and not look too far ahead. I make the odd plan far ahead of time but most of mine are within a week or two that I make them. Too much can come up with how I am feeling etc to get too far ahead of myself.
@Hooodith I think that is a great idea and think we should brain storm later this week about it. @GloHo seriously? The amount you write? You could pull this off no problem. You just have to figure out where to begin.
@JoanEG How is today finding you? What are the doctor's saying now? I hope you get out soon and get home to heal there. In your own bed, own stuff and own routine. Remember to get your peeps to bring all your stuff for the ride home that I mentioned before. It truly is good to be prepared. The pillow was a must for all the little and big bumps! You will feel each and every one of them as your insides try to figure out where to settle in their new spots.
@melissa The loss/grief you are feeling around not being able to have a child is heavy. It does sound like the weight is being lifted slowly for you. I hope that continues. I wish you and hubby a wonderfully amazing time in Florida!
Take care Everyone!
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@Hooodith Thank you for joining in. I feel you are part of our forum and always will be. You may not be going through what others are currently but can offer some sage advice from when you did. You have a way with words you do and your wit is quick. All things we can use no matter the time and topic. Keep joining in....please..... 1
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@Strongwoman Dr Cohen (my surgeon) was just here. My labs are going in the wrong direction so I might have an infection brewing. He has ordered a CT scan, more blood cultures and might start me on antibiotics. Needless to say I am not going home today.0
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@JoanEG I'm sorry to hear that. I know you wanted to go home but it's probably a good thing you stayed. It sounds like your surgeon is on top of things and they can get on top of things quickly. How are you feeling physically? Do you feel like you might have an infection brewing? Btw, your great grand daughter is beautiful. Sending healing prayers your way0
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Hmmm well that is not good. Sounds like they may have caught it in the early stages. Perhaps family can bring you a few things from home like pillow or blanket that are yours to make you feel more at home. Rest up and let us know how things go once they start to get the results back. I imagine if you are fighting an infection, you will want to sleep more. Disappointing I am sure @JoanEG but you are where you need to be for now. One day at a time and fight those nasty bugs out of that body of yours!
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@melissa and @Strongwoman they say every cloud has a silver lining. My hospital bed has a beautiful view of the Olympic Mountains in Washington State. I. Am getting amazing care and have had lots of company,
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@Strongwoman
🤣🤣🤣
I know, right? But pulling together a “story” versus all the missives and complaining I do on this site are two totally different things. I’ll put some thought to it and see…at least get some thoughts down. 🤔0 -
Hi Teal sisters. I put that idea out with little expectation of any interest. Now I am gobsmacked that there is support for it. I know that people find writing a big challenge. This is because of our horrible education system that tells us there is only one way to write our stories. I agree with @Strongwoman that we could brainstorm this later. I will certainly be there unless my body says otherwise. And I will continue to contribute here.
@JoanEG My Island pal, it is hard to hear of your challenges. It reminds me of my first year post diagnosis. It seemed like one thing after another. You are in the best place. Not just the hospital but the view, and the lovely island that we call our home. You will recover and be walking your puppies again soon. And the daffodils are out everywhere, waiting for you. My camellias are blooming, and I am sure your garden has surprises for you too.We are having a mini summer here, just until Tuesday, when it rains again. But we need it, we really need it.0 -
I think I’m going crazy!!I woke this morning with these instructions in my head on how to wake up. It was simply to stay in bed for about 1/2 hour when you wake and before getting out of bed. I followed the instructions but could not think of where they had come from. However, as I was lying in bed waking up, I remembered. But, I now have no idea where these instructions came from again!! I do not recall anyone telling me nor do I remember reading them anywhere.Now I’m thinking that I was in some weird zone between sleep and awake and I might have had a dream about these instructions and just remembered and followed them upon wakening.Usually, I wake up all bright eyed (I am a morning person) and hop out of bed immediately ready to have my coffee and start the day!!
Guess I’ll see what happens when I wake tomorrow!! 🤣🤣0 -
What a beautiful view indeed @JoanEG. I, for one, can say I have not experienced a view like that from my hospital bed. In fact a couple of times it is of the building itself or I am stuck in the "other" part of the room with no window. So very thankful you have something to look at outside.JoanEG said:@melissa and @Strongwoman they say every cloud has a silver lining. My hospital bed has a beautiful view of the Olympic Mountains in Washington State. I. Am getting amazing care and have had lots of company,
How are you feeling today? @Hooodith certainly knows how to describe things vividly, doesn't she?
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Hooodith said:Hi Teal sisters. I put that idea out with little expectation of any interest. Now I am gobsmacked that there is support for it. I know that people find writing a big challenge. This is because of our horrible education system that tells us there is only one way to write our stories. I agree with @Strongwoman that we could brainstorm this later. I will certainly be there unless my body says otherwise. And I will continue to contribute here.
@JoanEG My Island pal, it is hard to hear of your challenges. It reminds me of my first year post diagnosis. It seemed like one thing after another. You are in the best place. Not just the hospital but the view, and the lovely island that we call our home. You will recover and be walking your puppies again soon. And the daffodils are out everywhere, waiting for you. My camellias are blooming, and I am sure your garden has surprises for you too.We are having a mini summer here, just until Tuesday, when it rains again. But we need it, we really need it.@Hooodith you garnered more interest than what you thought and that is a good thing.
Writing can be challenging for some but I feel there is a way we can help. I was thinking of starting a google doc and then sharing it with those that want to do this. What are thoughts on that?0 -
I read this and thought.....hmmm....does it really matter where it came from? If it is from a dream state and you followed through with it, wonderful. The question is, how do you feel about it in general? Did in impact your day in any way like make your morning feel better? What did you do today to get out of bed?GloHo said:I think I’m going crazy!!I woke this morning with these instructions in my head on how to wake up. It was simply to stay in bed for about 1/2 hour when you wake and before getting out of bed. I followed the instructions but could not think of where they had come from. However, as I was lying in bed waking up, I remembered. But, I now have no idea where these instructions came from again!! I do not recall anyone telling me nor do I remember reading them anywhere.Now I’m thinking that I was in some weird zone between sleep and awake and I might have had a dream about these instructions and just remembered and followed them upon wakening.Usually, I wake up all bright eyed (I am a morning person) and hop out of bed immediately ready to have my coffee and start the day!!
Guess I’ll see what happens when I wake tomorrow!! 🤣🤣
Whatever you do and how you do it, as long as it is what you want your morning routine to be, is all that counts! 0 -
Well Ladies.....I had "the phone call" yesterday while driving to a meeting. The surgeon has agreed to see me on April 1st. I am so thankful that I have a date and it is coming soon. Soon I will have some answers and things to ponder. Like surgery or no surgery. Risks and benefits. After care and prognosis. Then it will be up to me to decide what we are doing. Perhaps the call saying I had another obstruction prompted this and perhaps not. I am thankful for it regardless.
I also had a call to move my dental appt from next week to today and I agreed to see the Optometrist this week as well. I guess it is the week of :"me" appts. Maybe I should go get a pedicure too!
@Sandi6 How are you doing this week?
What I would like to encourage and ask for as well is for all those members out there who come on here to the site and perhaps feel they have nothing to contribute. I would like to say that you do. If you are sitting in NED status and may have been for awhile or you are done treatment and feeling good, what you can offer is your experience and your journey to others who are new. We were all there once ourselves. For those that don't post much, it can leave wonder if you are still in fact NED or something has happened and you have recurred and/or died. By posting now and then, it gives hope to those that are fighting or going through the treatment carousel who are wondering when they may get off. Hope is sometimes the thing we need or that goal post we need to know is there so we have something tangible to reach. So, if you are one of these that don't post often, I am urging you to come back on and post a little more to give these ladies some hope while they go through their own struggles. Thank you all who do. 2 -
@Strongwoman
Exciting news. I know there is some trepidation in what you may be told, but it is better than being in that waiting void and not knowing. It is your decision and you can take as much time as needed to work through your options before making the decision that is best for you.I agree with @strongwonan…all those NED gals out there, let us know how you are celebrating, what have you been doing or where have you been going?My NED story…we did a vacation to Costa Rica. Unfortunately, two days after we got there my husband became ill. Serious enough to send us to a hospital in a nearby town in the middle of the night!! It was his prostrate and of course we thought the worst but it was not cancerous. Thank goodness. I always bought travel insurance and this is the first time we ever had to use it…even on all those trips with our boys when they were young. The insurance process and people, the hotel staff and the hotel Dr were amazing through the whole thing!! Amazingly, our nephew and family were there at the same time! Didn’t get to spend a lot of time with them but it was really nice to see him and his family. We still managed to enjoy our time there while following Dr’s orders!!Right now, I am finding that I am getting the itch to get out and do things…probably spring fever. I went through this same thing last year and booked some theatre productions and musicals. We also did a slew of day trips. This year will be a little different because we now have to add puppy to our plans. She is a good traveller…so all should work out. 🤣0 -
@Strongwoman
Honestly, I have to go pee as soon as I wake up, so staying in bed is not really an option 🤣. This is fine with me as I’m a morning person and usually just jump out of bed as soon as I wake anyway. I did not feel any benefit and have found that if I don’t get up and just stay in bed it sets me up for a lazy day. Some days that’s fine, but I prefer to get up and get some things done early morning. That frees up the rest of the day to do other things. Of course, getting up and getting things done early morning is now dependent on whether or not I want to do things. I found the need to learn how to pace myself has really thrown off my “let’s get ‘er done” behaviour!! I have also learned to accept that…so all’s good.
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