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!
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That is the spirit @Sandi6 Planning to golf and get your treatments completed. You are at the half way mark which is exciting. Sorry to hear you are still a bit under the weather with your sinus infection. I hope that clears up sooner rather than later for you. The WBC coming up is good news too. I, too, hope that you are able to stay the course and complete your treatments in the scheduled time. Summer.....mmm...the images, smells and sounds are all inviting.....not too far off.
Something to look forward to!1 -
@Strongwoman I’m feeling more positive this week, thanks 🙏 I’m journaling more, and practicing gratitude. Very interested in legacy work, so I’m researching ideas. How are you feeling?0 -
Good for you @Sandi6 looking up ideas for Legacy work! Nice to hear you are feeling better in general. I do my best to practice gratitude and to bring it in to the lives of my nearest and dearest when I can.
I am doing well. Since going off the Tamoxifen, I am returning to my old new self and sticking to my low residue diet. I see the surgeon on Monday and am very curious to see what he has to say. In the meantime, I do my best to keep busy. Today is a soup making, dinner making, laundry day, get caught up on some things kind of day. Very relaxed with no set agenda. The way I like it. Dogs are enjoying the sunshine outside and are quiet. So nice and peaceful. The birds come and go from the feeder outside my window as I do things. A nice day in general I would say.
This week is a week of waiting....waiting to hear how my elderly Aunt's appt goes today and my Dad has one on Wed that I am waiting to see what his surgeon has to say. Then mine on Monday. Seems to be the way. Filling the time in between is not hard. Tomorrow I am taking an elderly friend to her eye appt and am sure will have a good chin wag on the way to and from. She is 85 years young.
Lovely English lady who can make one laugh. Wed will be my Hospice group. Thursday grocery shopping and Friday my hubby and oldest son are off for the day. Oldest one works this weekend so not sure when we will do a dinner yet or what they want to do. If I can make it, I will as I do enjoy doing it. I like to see their tummies full and that they are content with what was made. I figure it fills the day and enjoyment is had by all. 1 -
In light of some of the conversations on here as of late, I found this quote that I thought was fitting:
Fear is a reaction, courage is a decision.
Winston Churchill
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As common themes have emerged in the past few days, the one word that comes to mind is: UNCERTAINTY.
I found a webinar on wellspring.ca that speaks to that and found it interesting. I thought I would share it here in case those that are feeling the uncertainty want to view it at their leisure.
Getting Unstuck When Life Feels Uncertain - Wellspring
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Hi my sisters
I am sorry I dropped out. I was doing well. Except for having the flu which was horrid. But my CPP was in abeyance and my mental state was OK. Then last week my NP , who is my primary care giver, dropped a very large rock in my pool. I still cannot write about it, it hurts so much. And scares me terribly. I cannot even write about it without bawling. She triggered a bladder flare, and I am trying to deal with that now. It is all about differing philosophies and ethics. I will write about it when I can. For now, please keep me in your hearts.2 -
@Hooodithsending you strength and love. You know we are here for you when you are ready to talk. ❤️0
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Hello ladies sending my best wishes for good health to everyone. I am going to attempt to share a link.I found this concerning as I have P53 mutation and have just started Zejula after frontline.
hope link works0 -
@flory
Interesting and concerning read. I’m definitely going to have to reread cause I just woke up. Looks like something that is going to take me back to review my bloodwork during my PARP treatment and speak to my oncologist. However, most drugs that we are given do have a secondary cancer warning…but it is interesting that they did a separate piece on this one in particular.Thanks for sharing.0 -
So….I headed to Toronto this week to get the biopsy done and to begin treatment. Unfortunately, only one of those things happened!!
Biopsy done. Feel fine. Felt a bit weak because no food, no fluids and hotel sleeps are not conducive to strength. I had an appt immediately after my biopsy with my trial team. Had to call my son to come get me after that appt. Just didn’t feel it would be wise to try to walk back to the hotel feeling as weak as I did. Was feeling a bit of tenderness the following day, but no pain. Of course, my biopsy was delayed an hour because they had an emergency patient they had to do. Since I was scheduled to be the second biopsy in the morning, I wasn’t expecting a delay. Figures!!My clinical trial treatment was delayed because they have to wait for the heart monitor results. I sent the monitor back on March 20 and the company should have received it by the 22nd. However, when I finally got around to tracking the package, I discovered they did not receive it until yesterday!! I lodged a complaint with Canada Post…I don’t think anyone has ever called to tell them how their incompetence results in delayed cancer treatment! Anyway, my trial nurse has been busting her butt trying to get my results from my hospital…to the point of calling a couple of times a day. Upon hearing that the company just received the results yesterday, she then proceeded to contact the company and get confirmation that they would expedite my readings and get them to the hospital by end of day!! So, fingers crossed that she can work her magic and get the results today. The short weeks for Easter make it even more difficult because she only has today and Tuesday to get them so we can confirm my treatment start for next Wednesday. I am kind of surprised, but very grateful, that my trial nurse has gone to such extents to get my results so I can begin treatment. I’m sure that on top of everything else she has to do that this was the last thing she needed!!On top of all that, my port is definitely not working! The problem is they can’t get the blood return going. Unlike my chemo nurses at home who would use a solution to unclog the port, the various nurses who tried to access my port for the biopsy IV, just said it doesn’t work, we have to use a vein. I spoke to my trial nurse about it and she indicated that they would have someone look at it and try to get it going again. It has been finicky for a few appts now but others have been able to get it going. It was only three weeks from last use that the problems started. Hopefully, during the clinical trial, it will be used on a more regular basis, but I’m not certain about that. It looks like my weekly blood draws after treatment are going to be done at the blood lab and not in the chemo unit, so likely vein draws. I doubt that I will be able to have a new one installed during the trial because it is surgery so, if they don’t get it working, looks like vein draws. I guess the other option would be a pic line…does anyone have any advice on that?My primary Onc has been keeping tabs on me and had scheduled a follow up for yesterday. So I brought her up to date and she is going to shoot a note off to the trial Onc about our talk. She also indicated that I can contact her at any time if needed.I’m just feeling like this is taking way too long!! It has just been one problem after another. I’ll be glad when I start and can nail down the treatment schedule!! The travel to/from Toronto has not been as bad as I thought it was going to be…so there’s a positive! 😁0 -
@GloHo I've had a PICC line twice and a Port once. I had a lot of problems with the Port forming a biofilm with acted as a valve preventing blood flow. I was always under stress that it wouldn't work. The annoyance of the nurses didn't help the situation. I also found that only the oncology staff knew how to properly use it. While it's great to not worry about bathing and not requiring weekly cleaning, I was happy to switch back to a PICC line again. Its been a lot more reliable for me. The insertion isn't a big deal and they just pull it out after the last treatment before a remission break. That's my 2 cents worth.
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@Hooodith I feel the anguish and pain in your post. I know you will share when you are ready. In the meantime, take care of yourself. We will be here to listen, and offer whatever support we can when you are ready. Hugs
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@flory It has been awhile and thanks for posting that info. I will be review that link to the article in the coming days. Thank you for posting it for those that have the p53 mutation.
How are you doing?
Take care and don't be a stranger to the site. 0 -
@GloHo You are having a journey with this trial, aren't you? It must get exhausting. It sounds like you are on top of it though. I do hope you get some answers soon so that you can start treatment on Wed. It sounds like all the staff have been working with you on this which should bring you some comfort as well. How are you finding being in Toronto and the hotel etc? Have you been able to enjoy anything?
Well ladies I will see whomever connects at 1pm today...
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Thank for your contribution re: PICC lines @jmbarrhaven
I think I would consider a PICC line if I had the need for one. I, too, had difficulties with my port and subsequently had to have it removed.
Wish you the best whatever your decision is @GloHo0 -
@jmbarrhaven
Thanks for weighing in on my dilemma. It helps. I agree re chemo nurses…they have been the most accurate at finding a vein, if needed, and the only ones to take a few extra minutes to fix the port without grousing about it!!I will talk to my team about this whole thing…see where it leads.0 -
@Strongwoman
Well…given the weather when we’ve been there and that we have puppy with us and my clinic schedule…haven’t really had time to enjoy Toronto. We are definitely not yet comfortable about leaving puppy alone in the room and she is getting more used to the noises each time we go. Once the better weather comes and the patios open, we’ll be able to do more together. Can’t say that I mind the rest I’ve been getting though. My husband is a Torontonian…absolutely loves roaming about!! He has been many places while we’ve been there. I don’t like shopping or crowds, so I’m not complaining about not being able to go with him on his little jaunts. 😁 So it all suits me fine right now. I am sure I will want to do more when it warms up.
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Sounds good. Glad hubby like it so that he is occupied while you are at appts. I like the vinyl shops there. I am sure Kensington Market would be a good scene too.
Ahhh yes, patio season. Seems far off but isn't really. Hoping I can enjoy something this summer including a bit more in my diet. Will see what surgeon says on Monday.
Keep us posted @GloHo and have a wonderful weekend. 0 -
Good Afternoon Ladies. It is the last Thursday of the month. Can you believe it?
Some may have plans this weekend and if you do, create memories, enjoy the little things and rest.
I was fortunate to attend on Tuesday evening an event put on by our local Hospice that fit in with our last Teal Thursday. They had the authors of "Hope the Best, Plan for the Rest" come and speak. Talking about how to bridge the gap between "in the dark" and "in the know" approach to your healthcare. To have a palliative (I know it is a terrible word and everyone thinks the worst) approach to your journey. To have communications with your teams about why you may do X or Y and what both those look like. To not take everything at face value and to learn how to ask the questions you want to and make them understand from your heart where these questions are coming from. If you haven't already watched the video from last week, please do. They have a book too if you are interested in that.
I wanted you all to know that @Eileen is still with us but at the end stage of her disease. She sent a message letting me know she isn't on OV dialogue much and is spending time with her family. I will update everyone if I hear from her or anyone from her family in the future. Hugs to @Eileen
We have had some engagement from some of our NED gals which is so nice to see. As I feel they provide HOPE to all and are there should any one of us have anything specific we might want to ask them. I do hope to see them on more.
Well my friends, where are you at today?
I am battling another obstruction. Started yesterday and so far I have had no nursing, no vomiting and have been using oral meds. I am fatigued but doing okay overall. Thankfully my surgical consult is coming on Monday.
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@Strongwoman
Sorry to hear you have another obstruction. Can you un-obstruct on your own?
The information you have been providing sounds interesting and I do want to take a look. My mind just isn’t where it needs to be right now…I think all the obstacles I’ve been hit with lately have just put a damper on my spirits. I’m sure once I hear that we are moving ahead, I’ll readjust to a more positive mindset and get on with things.It was nice of @Eileen to touch base with you. She has been an active member of this group and I often wondered how she was doing. I am so glad she is surrounded by family and friends at this time.0 -
Well I can't unobstruct only use meds they would give me via injection to mitigate the symptoms. So I used Dexamethasone last night and this morning which helps with the inflammation in there at the time. It is what we used last time when I needed the nurse. I was in consult with my Palliative Doctor last night via text about it as well. I am able to eat jello today and clear fluids. Going to try a cup of soup shortly.
You take the time you need. The info is there for when you are ready and able to view it. I am sure your spirits have been dampened. I am not sure what to expect or what I might go through once I have my consult on Monday. My elderly Aunt and my Dad are going through testing and possibly surgeries too which adds a bit of stress. My poor Mom not knowing who to attend and when. We will get through it. If she needs to be with my Dad, I will recruit others close to me, my Aunt will have her son and others to support her. Communities are great that way.1 -
Hi ladies,
I'm behind on participating in the chat but have been reading everything. I'm getting ready for Florida as we leave in a few days. I will write a more detailed one soon.
@Strongwoman I can't believe again you're having to deal with another obstruction. Sigh. Monday is right around the corner and I hope the surgeon has a plan for you1 -
Yay!!! So happy to hear your vacay is right around the corner. So exciting! Hope to see a couple of pics when you return. You go enjoy and don't worry about anything except enjoyment!
Yes, it is close and I am thankful it is Monday. I will post any findings either that day or the following day. It will depend on how I feel.
Take care all and enjoy your weekends. 0 -
@Strongwoman
Geez…so much going on!! Sounds stressful, but will be manageable when the time comes. I agree…communities are great that way!!
EVERY time I speak to my Onc she asks a lot of questions about my bowels and orders me to keep on top of that! She spooks me every time she talks about it!! I know how serious it is (thanks to this site). I think I am doing enough. I stay away from foods known to cause me constipation. If I have a couple of days without a movement, I take Senokot. I have also noted that some meds slow me down so would take a Senokot to get ahead of it. Should I take Senokot daily? I know there are cons to that…but haven’t really researched it yet. I will have to ask my Onc that question as well and dive into other options she would like to suggest. Are obstructions more likely a result of where the cancer is or constipation?0 -
GOOD NEWS!! The trial is a go starting next Wednesday!! I will be posting about my clinical trial journey separately. 😁
My amazing trial nurse got her hands on my heart monitor results and there are no issues. As expected given all the other heart tests I’ve had that didn’t reveal anything!!3 -
Sorry to hear about @Eileen, my thoughts and prayers with her and her family through this difficult time and @Strongwoman for letting us know.I am not on the chat most Thursday but I read all the comments. I was diagnosed with ovarian cancer ( stage 1A) in October 2020 had total hysterectomy and 6 sessions of chemo.I saw my oncologist every 3 months for the first 2 years, and now every 6 months. I have not had any reacurrance since, my point being that early detection and treatment is important.1
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Today, I find myself grappling with emotions too heavy to bear as I confront the harsh reality of my ovarian cancer diagnosis. It's as though the weight of the world has settled upon my shoulders, pressing down relentlessly with each passing moment. The words of the doctor echo in my mind, a stark reminder of the finite nature of life and the fragility of our existence.
Sadness envelops me like a suffocating shroud, casting a shadow over even the brightest moments. I am overwhelmed by waves of despair, each one crashing against the fragile walls of my resolve, threatening to engulf me entirely. It feels as though I am drowning in a sea of uncertainty, unable to find solid ground amidst the tumultuous currents of my emotions.
In moments like these, I seek solace in busying myself with mundane tasks, hoping to distract my mind from the painful reality of my prognosis. I bury myself in work, in chores, in anything that will grant me temporary respite from the relentless march of time. Yet, no matter how fervently I try to escape, the truth remains ever-present, a constant reminder of the finite nature of my existence.
The thought of having only months left to live fills me with a profound sense of grief and disbelief. How can it be that my time on this earth is so cruelly limited? There are still so many dreams left unfulfilled, so many memories left unmade. It seems unjust that life should be so fleeting, that our moments of joy should be overshadowed by the specter of mortality.
And yet, amidst the darkness, there is a flicker of hope, a glimmer of light that refuses to be extinguished. It is the knowledge that even in the face of adversity, there is still beauty to be found, still love to be shared. It is the realization that every moment, no matter how fleeting, is a precious gift to be cherished and savored.
As I navigate this journey with ovarian cancer, I am reminded of the resilience of the human spirit, of the capacity to find strength in the midst of sorrow. Though the road ahead may be fraught with challenges, I am determined to face it with courage and grace, to embrace each moment with gratitude and love.
And so, I continue to journey onward, one step at a time, guided by the unwavering light of hope that burns brightly within my heart. For even in the darkest of times, there is still beauty to be found, still joy to be shared. And though my days may be numbered, my spirit remains unbroken, a testament to the enduring power of the human soul.
With love and resilience, in solidarity with each of you beautiful women. 😘
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