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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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@Hooodith @GloHo Hello. I am weighing in now after being under the weather for a couple of days. On Tuesday night (had been building all day) I experienced another Ileus and had to call the nursing on call. I had 2 subcutaneous ports put in and had both Halidol and Hydromorph. My last injection was yesterday before lunch of Halidol. I had them remove them today. I am weaker than normal and fatigued a bit more but am better. Every day should be better from here on out.
@Hooodith I am saddened to hear of your experience and recall you saying you were a therapist prior. This must have been very difficult for you in so many ways. I do sincerely hope that there is a solution out there for you. I think that @GloHo suggestion of WellSpring is a great idea. I have another resource as well if you would like it that my Palliative Group Coordinator gave me when I was looking for something for my son as well. Hoping the change in your depression medication helps as well. I am saddened and mad that she did not take your statement about "passive suicidal thoughts" seriously. It is terrible way to be treated and a horrible that the professional was not acting professionally.
@GloHo Thank you for sharing and your input. I will keep my fingers crossed for you on Monday as well.0 -
Welcome Ladies to the 2nd last Thursday of the Month! Can you believe it? I can't.
How was the weekend for everyone? The week? How is treatment going? Where are you all at emotionally/mentally this week?
I had another Ileus that started Tuesday and had me calling the nurses Tuesday evening. Thank goodness for my SRK Kit that keeps me out of the hospital. I had 2 subcutaneous ports put in. One was for the Halidol (nausea) and the other Hydromorph (pain). I had thrown up more than once before she got there but was spared the dry heave portion of it. I required meds through the night and into the next morning. My last injection was yesterday before noon of Halidol and I had them remove the ports today.
I am weaker and more fatigued than usual but returning to my own self again. I have a ham and black bean soup on the stove, made avocado brownie muffins and am going to make corn bread to go with dinner tonight. My driving force is going to a Fear Farm tomorrow night with my boys, one of their gf's and my best friend. I have no idea how I will do at such an event and evening but am giving it a go! I will let you all know how I fair out. On the Saturday, I have my niece's final wedding dress fitting. Hopefully after that, I will help my sister (her mother) find a dress. My parents were down from Belleville since Friday and left late Tuesday afternoon. We had Thanksgiving Dinner and played 5 Crowns with the boys. It was fun. Plus I went dress shopping with my Mom and found her a dress that looks amazing on her and she feels great in. We found the dress, shoes, jewelry, scarf and shawl all for $126. I love consignment shops!
@Hooodith asked a very good question prior to our chat. She wanted to know what Wellspring was. For those that don't have the link, here it is: Wellspring
This is a place you can go to for different online programs and support. Here is an excerpt from their home page:Helping people live better with cancer
At Wellspring, you will find a range of programs designed to help provide connection and belonging, ease physical pain and emotional distress, build strength and mobility, and reduce fatigue. Specialized financial, workplace, counselling and other cancer-related supports are also available.
Well Ladies, that is it for me, where are you all at and how are we doing this week?2 -
Hi. Heading to my annual GP appt. I am going to ask to set up an appointment to discuss palliative care in this area. I know she is part of the team in town, so should be a good discussion when we get to it. I will also be doing some more research about services and supports out here, plus all the helpful information provided by many on this site…will make for a very fulsome discussion!!@Strongwoman Thank goodness you have the kit and can get immediate care at home!! I do hope you are feeling better. It certainly doesn’t sound like it has slowed you down at all! The Fear Farm sounds like fun. Enjoy.0
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@Strongwoman. I looked at Wellspring. There are no centres in BC.0
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@Hooodith - Wellspring is similar to Inspire Health in BC. If you haven't had a chance to look at their program and support offerings, you could try their website and see if they have what you're looking for. Or, please feel free to message me with what you're looking for and I can see what I can find out for you.
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Hello everyone. @Strongwoman I’m so sorry you had a rough couple of days but happy to hear you are returning to your usual self. Enjoy the Fear Farm tomorrow it sounds like a fun outing with family! I had my first appointment with the medical oncologist yesterday. She was lovely and answered all my questions before I even asked them. My son was with me and she thoroughly explained what was to come without sugar coating but in a positive way. She was a little puzzled by how bad my nausea has been but didn’t seem overly concerned. The medication my gyno. prescribed seems to control it really well. My treatment plan will be 6 chemo cycles of 3 weeks (carboplatin and paclitaxel). Surgery will happen after my 3rd cycle. Full hysterectomy, debulking and removing my appendix. I’m just waiting now to hear if they were able to schedule my chemo here in Duncan or if I will have to go to Victoria.It is my birthday on Sunday and every year on the weekend closest to my birthday two of my sisters and I go on a card making retreat at a fabulous B&B in Qualicum. I’m really looking forward to it.0
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My great granddaughter heard us talking about me losing my hair so she picked out a hat for me. ❤️🥰 Who needs hair when you can have built in braids!
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@JoanEG Adorable! Who wouldn't want hair someone so precious picked out.3
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@Strongwoman it is also the perfect colour!0
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@JoanEG Lovely pic of your great granddaughter. Its these young ones who keep us fighting for our lives. I have eight grands. One has just begun the LPN program at VIU, one is graduating with a degree next May. I am determined to be at both their grads.Sounds like you lucked in with your oncologist. You are getting exactly the same chemo drugs that I got last year. They worked well for me. Please ask me if you have any questions about it.1
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Hello My Teal Sisters! How is everyone today?
Here in Ontario, it is a rainy, dreary kind of day. What is the weather in your province today?
I have been to the market and Costco this morning and that is it for me. Oh and funny story.....I got home and I said to my son, "Can you take my boots off as I don't want to bend down." He said, "Sure, Mom." Then as he took one off he looked at me and said, "Did you put on 2 different boots?" I replied, "I don't know, did I?" Then we looked down and started laughing cause that is exactly what I did. I was wondering why it felt funny when I was walking....this explains it all!
I am pooped! Currently making shepherd's pie as it seems like that kind of day.
First, I want you all to make sure you have signed up for the National Symposium on Nov 7 & 8th. If you have not done so already, please make sure you do. It is going to be great!
Second, have all of you responded to the poll regarding Teal Thursday's? If not, make sure you do as this is the time to make your voice heard. If this day and time is not working for you, let them know.
I have been contemplating what to write today and while I was prepping my dinner, it came to me. It looks (from this past week) that the conversations have been a little low. There is nothing wrong with it, it is something I noticed. It makes me curious as to what is going on in everyone's world. Are you enjoying life? Contemplating or dealing with emotions regarding any news? Are you in treatment and not feeling well? Whatever it is, know you are not alone and we are all here for you. Please feel free to speak about anything going on in your life even if it does not have to do with cancer. This is a safe space to do so.
I attended my first Open Art at Hospice last Friday. It was great. I brought stuff to work on but they have everything there and you can use anything in the studio to make something. It also helped me come up with another project I was wanting to do and the woman running it will help me with it. I have had so many great interactions since joining the Hospice Palliative Day Program and want to share it with you all. If you are in my shoes and know what your future looks like, reach out to them and see if it is something for you as well. I am doing a Horticultural workshop on Monday there.
I did post earlier this week what my results were but will put them here as well. My regular Oncologist was ill so I had a replacement. The replacement, I have seen before and even then she was not up on LGSC and treatments etc. Needless to say, I did know more than her and I am not saying it braggingly but more frustrated than anything. My CA 125 level has dropped by 16 points from last month which I wasn't expecting. I was drinking my turkey tail tea and also taking something the naturopath had given me last year (I felt I needed to use it up). So I am not sure if those 2 things attributed to the drop or not. The puzzling part for me is this, my creatinine has gone from 62 to 49. My urine has changed and I have constant back pain on the left side that is kidney related (I have only my left kidney really working for me). I know from reading that they need 3 mos consecutive to see if it is indeed kidney related (possibly liver also) but I don't know if I can wait that long with my right one not functioning. My question is: Is this the time we talk about a left sided nephrostomy and try to preserve whatever is left functioning of the left kidney? Or am I beyond that? Or, or, or? I am also dropping weight and have lost more than 15% of my body weight. So, concerned I am but more so curious to see what is going on and what we do or don't do about it.
I almost have my friend's last legacy project completed. I will show a picture of it next week as that is my aim in completing it.
The time says 1pm so it is time to get this started.....
Who is out there today? Anyone?1 -
Just came in from gardening. I was not able to do any outdoor work for 3 months due to severe anemia. Since they stopped my chemo 5 weeks ago, I have finally been able to get out there to put my garden to bed for the winter. Trying to do a bit every day. Not too many days left. Even bought 30 bulbs and have been putting in a few every few days (in addition to the 800 or so I already have). I was even able to mow the lawn. Will use the mower to crunch up the leaves.
Went to emergency about 2 weeks ago with leg pain. Turned out to be deterioration of my lower back. They did a CT scan. Actually, when I was in the machine the nurse said they noticed a request on my chart for a CT scan post chemo. They decided to go ahead with it as part of the emergency scan. Enabled me to get the results in 2 hours instead of 2 weeks. I went from "tiny" tumors after the 4th chemo to "hazy" after the 5th. I have a follow up on Nov. 7th. I am thinking if asking them if I can have the 6th chemo. I would dearly like to get to remission status. They gave me a year, if I can do that. I so want that break.1 -
@jmbarrhaven Good for you! Sounds like you are being kind to yourself and chunking down your gardening activities as well. By what you are saying you are planting, I sure would like to see a picture of what comes up next spring! I am sure it will be beautiful.
Sorry to hear that you had to have an Emerg visit. They are never on our list of Top 10 things to do. Glad the CT scan results were quick, no waiting and you don't have to repeat as quickly. Sounds like the chemo is working and hope your visit is positive. Crossing my fingers that your Oncologist is receptive to the idea of one more chemo before a break.
"They gave me a year", what does that refer to? Prognosis? or Chemo Treatments. I want to be clear before I respond to that as well.
So, glad you could join in when it worked for you.
Take care0 -
I was originally diagnosed in 2021 as early Stage 3, so my tumors were microscopic. 6 chemo treatments gave me a remission of 1.5 years. This time, they said that they expected I would do well again with chemo and that I would achieve remission again and this time it would be a year. However, I developed an allergic reaction to one of the platinum chemo drugs. My kidneys were in poor condition and there was no substitute drug so they took me off chemo after the 5th. However, my kidney function appears to have recovered somewhat so I am thinking that I may be able to have the 6th.0
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Here are a few photos of my garden. I was not able to give it my full attention this year. I am thinking of hiring a professional gardener to help me next year. I am a retired landscape architect, so I am picky.1
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@jmbarrhaven How has treatment been on your body otherwise? If you don't mind sharing, what does "my kidneys were in poor condition" mean? Was that bloodwork that is showing that? I am curious as my right kidney (last testing) functions at 24% and the left one was 76%. So my left kidney is doing all the work which I think is worsening as well.
I think it is wonderful that you may be getting a year off of chemo (if I am reading that correctly) and that must feel wonderful that it is so close. Would that be a fair assessment?0 -
@jmbarrhaven They look beautiful. What part of Canada do you live in? How long did you do landscape architect for? I bet you would be picky. Not unlike many of us who have a profession and find it tough to find someone to do something in our own professions.0
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Yes, correct, a year to recover and no chemo. My creatine level went up to 127. So it was entirely based on my bloodwork I also had problems with chemo destroying my red blood cells. I had to have a blood transfusion either immediately before or after my last 3 chemos. It didn't help that I had back-to-back chemos starting in April, I had 3 of 4 for breast cancer, a 6 week break before I started 5 of 6 chemos for ovarian cancer which reoccured and took precedence over the breast cancer treatment. So I had 9 chemo treatments in 7 months.1
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@jmbarrhaven Thank you for replying and the clarification. That is a lot of chemo in a short period of time. No wonder your body started to rebel.
I will remain hopeful that you and your body get that break that is very much needed.0 -
I live in Ottawa, so the palette of woody plant material is restricted by very cold temperatures, but the reliable snow cover is good for perennials. I practiced for 40 years, 25 in the private sector and 15 in the public sector, specifically the federal crown corporation the National Capital Commission.0
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Hi everyone. I was at work earlier finishing up a fiscal year end before my chemo starts. I have a tentative date of Monday, Oct. 30th for my first round. I’m just waiting for confirmation. I spent a love,y weekend at a B&B in Qualicum Beach with my sisters. It was a scrapbooking/card making retreat. I got a great start on my Xmas cards and enjoyed spending my birthday with my sisters.0
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Hi @Strongwoman @jmbarrhaven
I always mean to come to this Thursday chat but never seem to remember. Strongwoman it is definitely a Shepard's pie kind of day, I don't know where you are in Canada but here in Montreal it is dark and gloomy, but at least not freezing yet. @jmbarrhaven glad to hear you will be getting a year break from chemo, you must be ecstatic. I can only imagine having to battle both breast and ovarian cancer. I myself just had round 5 of 6 yesterday and am trying to tidy up before fatigue sets in. My magnesium was low for the first time, I guess that explains all the kicking I was doing while trying to fall asleep. Onco pharmacist sending magnesium Rx to pharmacy now. Have a good weekend ladies : )1 -
I am so inspired by everyone’s stamina, while going through so much treatment and loss of function in some organs. @Strongwoman, I have a story like your boots one. My sister was walking down the street with my son and her daughter when they noticed that she was wearing a blue and a black pair of the same style heels. She looked down, and said casually,, “Oh yes, I have another pair just like it at home” and continued walking. She was always a quick wit.
I had chemo yesterday, after a long and difficult kerfuffle about scheduling, which I may already have mentioned. I am feeling physically unwell, but strangely energetic. I just finished cleaning up the business end of my kitchen. It must be the dextramethazone, which I get to-take for another three days. But I am in pain, and that is a new one with this combo. The dex also seems to clear up my other issues with my guts and my overactive bladder, so I wish I could be on it for the rest of my life. My CT scan showed NED, and the bloodwork I had done on Tuesday showed that my CA 125 had gone from 800 down to 400 after my third chemo, so this fourth one will hopefully push those numbers down even further. Two more to go, and I hope I will be considered in remission. Around about Xmas. I am also much less depressed now I am on the Ecitalopram, but I am returning to my old counsellor who says she has room for me again. After my horrid experience with the counsellor at our medical clinic I feel very relieved about that. We are having an early winter out on the coast. Snow and low overnight temps. Lucky for us, the snow missed Gabriola and Nanaimo, but fell on either side of us and all over the mountains. When the sky cleared they looked spectacular. But I still don’t want winter to come. Our friends across the road are packing up their RV to drive down to their other house in Florida in early November. I am quite envious.Thats me for this Teal Thursday, I am registered for the symposium but as its Zoom I am not confident our machines will handle it. The last time we tried, it kept failing.
So keep on carrying on, sisters, you are an inspiration to me.1 -
@JoanEG That is amazing! Did you have fun while making them? It sounds like a wonderful way to spend a weekend. What are you doing this weekend, supposing you are having treatment on Monday? Any plans? Hoping that you do have treatment commence on the 30th and that it all goes well.1
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@melissa Thank you for joining in. This Thursday Chat seems to go on afterwards and I welcome it! Whatever gets us chatting and communicating. So, thank you for joining in. I am near Toronto and it is gloomy but warm. I raked some leaves a few minutes ago. I believe tomorrow may be our last nice day and then it is to turn colder. I get my winter tires on Tuesday and will be fine with whatever comes after that.
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