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How wonderful. What bloom or bud are you most looking forward to seeing emerge soon?
I still have trouble with the bouncing and my innards. It causes me great discomfort if I do so and therefore avoid it. I hope this is not the case for you. I, too, am looking forward to getting out in my garden next week. I find it therapeutic as well
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I also meant to comment on this @JoanEG I remember people calling this the "peach fuzz" stage. Time will tell what happens and if it stays or goes for you. I know you are prepared for either. Keep us posted as to what happens.
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@Strongwoman I have made peace with my how my husband's life ended. I have come to realize that obviously things had progressed so much more quickly than expected and in the end he was at peace. He was lucid up until about 1/2 hour before he passed and the family was all there with him. It was horrific in that it was like a bloody crime scene but he was not in pain. It's been seven years and I miss him everyday but I don't dwell on the way it ended I celebrated all the wonderful years we had together and the lovely family we raised. It just came to mind when I was chatting with GloHo about end of life planning. How we hope for the best and plan for the rest but there is always the unexpected!
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@Strongwoman yes to the peach fuzz! That's exactly what I call it! :)
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Ohh @Lorraine5845 I am saddened to hear you are still in hospital. It would be very difficult to not go down a rabbit hole with that news and finding. I am thankful you contacted your pyschologist and hopefully got some help or felt better after. Glad to hear the electrolytes are returning to more normal as well.
Yes, I hear you on the "some things you need to talk with someone outside your family and friend circle." It is why this group/forum is helpful and for me, my Palliative Day Program at Hospice. Both of these places, I have found I can bring forth some of that stuff I wouldn't dare say to family/friends because I feel like it would worry them more. Please know we are here, and it is a safe space to let forth anything you are feeling. We will be waiting for when you are ready to do so.
In the meantime, go for a walk on your floor, try and find some strength to do it and get those legs working. It is amazing how fast we can lose motion in our bodies due to inactivity from illness. My elderly Aunt and I were discussing this very thing yesterday. I find when I end up in hospital, I start slowly with my lap around the floor and the frequency and slowly build it up. Maybe it's my wishful thinking also that if they (nursing) sees me enough times they might encourage the doctor to let me go home too. 😉😅
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Exactly about the Hope for the Best and Plan for the Rest. It's all we can do. It is settling to hear that you have worked through the situation and grief and are able to now see all the wonderful things you two created and had together. Some struggle for a long time with this, so give yourself kudos for being able to view it in such a way.
Thank you for sharing something so personal with us @JoanEG
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Hi everyone
I had a couple of things to get done today since a big chunk of my week is taken up with trial travel. Finally got the snow tires off and got my oil changed. Both very much overdue and needed especially since I am driving to Toronto weekly right now!!
Nothing else new for me. Just trying to get my head wrapped around the 3-6 month wait time to see if this new immunotherapy is working. Last time I had a huge increase in CA125 at the beginning before it started to go down…and we saw some decrease in tumour size…then it stopped working and started to creep up again. So I know what “might” happen. I am trying to clear my head of that experience and start this new drug with positivity and hope. The trial schedule allows for CTs every eight weeks and I believe I will get my CA125 each cycle (tbc) and, of course, I will try to drag things out of them about what they’ve seen with this drug so far - even though we are just in Phase 2 there must be something going on that they can share - like why did they add this second cohort for ovarian cancer???
I think I am getting cabin fever in addition to trying to adjust to my new schedule and working around the travel time. The schedule changes at Cycle 3 and from 5 onward to once every three weeks.
Time to start looking for some fun things to do and get out more. Also have to start a list of house stuff I want to do…it’s starting to clog up my brain 🤣.0 -
Has anyone been tested for or started on Elahere for Platinum Resistant Ovarian Cancer in Canada - can you share how you got the testing and on the drug? Thanks.
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@BellaDonna1959 There have been a couple of ladies on the site that have looked into this. If you type it into the search bar, you will be able to pull up the conversations that were had in the past. They did go into some detail about it then. Hope that helps.
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Good for you @GloHo getting some things done that needed to be completed. I was a little late to the meeting yesterday due to errands. I was taking advantage of my youngest being home still and utilizing his muscles with my errands. First stop was off to get bird seed at the local Farm Supply place. Then he had a meeting for his new work in which I played a word game and talked to a gf the entire time he was there. It turned out to be 1 h 45 mins. We then left to do the Costco run and then home to unpack etc. It is absolutely crazy how time flies by some days. Glad I got it done.
I, too, still have to do the winter tires but need new tires so have been busy pricing those out. Today, my nephew and his two children are coming for a visit. I am hiding some smartie packs for them and have a bunch of craft stuff to do with them. My parents are arriving today and will be here for dinner. So, a busy day all around.
I am looking forward to hearing about your trial and any answers to questions you pose to them. All of it may help another Teal Sister in the future.
Next week, I want to start working on my gardens outside. I will have to chunk down what I work on and what day(s) so that I don't overdo it. It brings me such joy to work on them. Our chestnut tree is starting to come out with buds which is always a welcomed site. The crocuses and mini irises have come and gone. The daffodils are out and the tulips have yet to open. My solomon seal is poking out of the ground and the sedum is starting to look greener. I haven't been down the hill to look at the lilac bushes to see what they are doing yet. I love their fragrance in the spring as you walk or drive by them. Spring.,……so full of fresh starts and things to come. 💕
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Good Afternoon Ladies on this last Thursday of April!
So, how many of you have been out and inspecting your gardens? What does everyone have coming up in them? My daffodils have emerged this week and my tulips have yet to come out. I have Solomon's Seal poking out of the ground and my Sedum is off to a good start. I noticed my Bleeding Hearts are showing growth as well. I have picked away at 3 of my 5 gardens this week. I am hoping to do more tomorrow as it will be warmer and before the rain comes here on Saturday. I have heard in the news that in Southern Ontario that we may hit a humidex of 30 on Sunday. It feels bizarre to have that already. Those of you in other provinces, what is the weather bringing to you? I see that there are some wildfires in BC and Alberta which seems early as well. Hope everyone is safe.
It looks like our site has been a little quieter this past week. For me, it was due to prior engagements etc. My parents came from Belleville last Friday and left on Sunday. They stayed at my Uncle's to sleep but were mainly here. On the Friday, my nephew and his 2 wonderful children (age 2 and 4) came at noon and left at 6pm. It was loud and fun and we all relished the quiet after they left. Good for me and my parents to see them all. On the Saturday, I went out with my Mom for a little bit and we hit the yarn store (of course ;)) and then home. My niece and her hubby came for a visit that afternoon and both my boys were home as well. A lot of chatting and reminiscing by all. We had dinner and then my parents left. I think I vegged most of Sunday.
I started what is called a Temperature Blanket for my oldest son. So you find out the weather for every day of the year you want (I chose the year he was born) and then make a chart for colours to correspond. I have 8 colours and it is interesting to see the pattern emerge. He loves green so I did my best to stay in that pallet but did have to choose some alternate colours to make it work. I am in the month of March now. Here is what it looks like so far:
Once I finish his, I hope to do my youngest son's as well and his will be in purples.
As for me, I must say that I am feeling good. I have continued to take my Letrozole and Turkey Tail Tea daily. I have an appetite and energy. So far, so good and as I stated above, I have been doing some work in my garden too. I am curious now (after having time to contemplate) if my rise in CA 125 level had anything to do with the change in medication last month. I stopped the Letrozole and went to Tamoxifen for a week, then nothing for 3-4 days and back on the Letrozole. Hmmm…….one does wonder. I can phone in and ask for bloodwork and may just do that in a few more weeks to see.
I have had no success with Traditional Chinese Medicine thus far. I have emailed 3 of them and not a one has returned my email. I should call and follow up and have not yet. It is frustrating though. I gave them a basic background and all I really wanted to know is yes, I can treat/help or no, I cannot.
Next week is what we are calling D-day. It is fast approaching the time we were told to be out of our home by the landlord. We will see what happens next. The paralegal is on standby for the following day (May 1st) in case someone shows up here and then she can speak with them. So soon, we hope this matter will be more transparent as to where it is headed.
Oh yeah! I wanted to share one other thing. I have a plant at the house and it is by my front door. The other day, I noticed some new growth but it looked a little different. I sent the pic to my Mom and Aunt and asked if they knew what was going on as it looks like it might be flowering. I then sent it to my nephew's fiancee who seems to have knowledge with plants. She told me I have a Dieffenbachia. She said that they don't flower often and that it is amazing that I have 2 flowers. I actually think I have 3 as I noticed a small one the other day. Here is what I am talking about:
How has everyone been this week? What is going on in your world's? Anything you want to share? It doesn't have to be journey related. Feel free to share what is on your mind this week.
I will now stop talking and wait to see who is on today and where the conversation will go. I am so thankful that I feel good and hope it lasts a long, long time! 😀
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Hello @Strongwoman! I must say - again - how you fill me with so much admiration, for all that you do and make time for. I love the blanket! It’s beautiful how the colours come together. Green is actually my favourite colour, so no surprise! I’m sure it will be something your son will treasure for years to come.
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I wish I had some of the energy that you have - or that you make time for. The treatment that I’m on is an oral chemo. 2 weeks on and 1 week off, then bloodwork and if ok, repeat. It really seems to drain me of all my energy by the 2nd week. I’ve been on it for close to 8 months now and it also seems to be losing its efficacy - slight signs of progression in my last scan.
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@Tinazzie I am sending you some energy now…..
I am so sorry to hear that this medication makes you feel like this. To hear you are experiencing this AND that it may be progressing is disheartening. Have you discussed what next steps may be? Do you know what you want to do like proceed with more treatment or take a break? It is a lot to process and understand what it feels like to sit in it. Every person does process differently and how it affects one day to day. I wish I could wave a magic wand and have it disappear for you or to let you have a bit more energy that you do. It makes one appreciate "feeling well" doesn't it?
Hugs 🤗
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Aww Thank you @Tinazzie Glad you like the colours too.
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I did want to ask some of our Teal Sisters in Ontario about the online healthcare app for accessing your records, appointments, bloodwork and such. I think I’ve heard some of you mention it, My daughter lives in Ajax and is actually facing some issues for her own. She had been experiencing severe cramping in her stomach, along with a lot of blood loss, then I got a call from her husband this weekend letting me know she was in the ER. 8 hours there then sent for an ultra sound. It happened again 2 days later. My first instinct was to catch a plane and go there to be with her. But, I know I’m too weak to travel on my own.. Anyway, the scans showed that she has a Subchorironic Hematonia - and possibly in very early stage of pregnancy. I am so worried. Given my history of ovarian cancer, I want to do everything to protect her going thru what I did, when it was too late. She has more tests to do and I thought the app would be helpful. She hadn’t heard about it. She will also need to find a good OBGYN. Where do we start? I’m so worried about her. I’ve always been there for her, but now that we’re apart, me in Nova Scotia, I can’t really advise her properly. Any advice would be appreciated. Thanks.
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@Tinazzie First, I am saddened to hear that your daughter is going through this. For an experience that is to be so joyous, she is facing some concerning medical issues. I am truly sad that her pregnancy is currently clouded by this.
I would then ask what hospital she is at. OR Ask her to look up on the hospital's website which platform they use for patient record access or call in. I am in and around the KW area and I know Hamilton has a separate one. So, it ultimately depends on location. Those would be first steps. She might even be able to google the info as well to find out.
Second, I would get her to stress to her OB/GYN your gyno history so they are aware of it. I would ask her to relay your symptoms before discovery and any previous gyno issues you had. If you have an identifiable gene mutation that you are aware of, share that with her so she can relay it too. If she doesn't have one, then I would think that she should contact her family doctor. I am surprised that considering her being at hospital that this question did not arise then.
I feel that I would want to do the same as you and then come to the realization that I would be unable to travel. It must be so hard for you and her. The only other thing I can suggest is offer to be available via phone or face time when she is at an appt so that you can be there and hear everything. It ultimately rests with her and what she would like to do regarding that but if you offer, then you have done what you can.
I hope some of this info helps both of you. 💕
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I’m so sorry to hear your daughter is going thru this and truly understand your distress at not being with her. As @strongwoman mentioned, FaceTime is a great option for you to be there for her.
I believe the health portal for the Ajax area is MyChart. Just look up MyChart and see if her hospital is listed.
She should be able to get an OB/GYN referral from her GP.
I, too, wish I had @Strongwoman’s energy! Sorry to hear that you have the added fatigue from the drug and that you may be experiencing progression. I know my ONC uses a percentage of increased growth from the scans before she changes up my drugs. So, although the drug may be losing its efficacy, it may still be working to slow progression, giving you more time before you have to change to a new treatment. Are you getting regular CA125 tests? Have you spoken to your ONC about next steps?
Thinking of you and sending positive vibes to you and your daughter.1 -
Good afternoon @Strongwoman and all. I have had a busy week! Last Friday I had three good friends come to visit. They brought lunch and we spent a lovely afternoon catching up. Saturday I had lunch with my siblings and again we spent hours just catching up on all the family goings on. Sunday I took it easy. Monday my GP came for a visit. It started out as just a social call but of course we wound up discussing my care as well. We even delved into the hard stuff such as palliative care and MAID. She is such a gem and I’m so grateful for the relationship we have built over the years. Tuesday I got my wings back! I was allowed to drive! Yay! I went back to work (I’m a Weight Watchers coach), got bloodwork, picked up prescriptions and got groceries. It was so nice to be able to do these things without depending on someone else. Yesterday I went in to my office (I do contract bookkeeping for a local business) and started getting caught up after being away for almost seven weeks. Today my granddaughter-in-law came to visit and brought my newest great grandson and my neighbours also came for coffee. I also cleaned my house, changed my bedding and did laundry. It is a rainy day here and it feels like a good afternoon for a nap!
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Good for you!! So glad you are able to do all the things you love to do.
I’ve never seen a Dieffenbechia flower - amazing!! Can’t wait to see the pics when they bloom.
I’ve also never heard of a temperature blanket!! I’m going to look that one up (although I don’t like working with different colours and all that entails)…is an interesting concept and is personal to the person you are creating it for.
As for me, just continuing with the trial. Will be posting cycle 1 notes soon…had some technical issues. Nothing exciting happening.1 -
@Strongwoman you are so talented, that blanket is gorgeous and such a unique gift. It sounds like you have also been very busy. Spending time with family is such a blessing.
@Tinazzie I’m sorry to hear the treatment you have been getting is making you feel unwell. That is frustrating when you are not seeing benefits. It sounds like your daughter is also going through a lot. It must be very hard to not be there with her. My daughter lives in Saskatchewan and I am in BC so we have faced th same issue. Talking on the phone and FaceTime are ok but they don’t make up for actually not being together. Sending positive energy to you and your daughter.
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Thanks @GloHo I haven’t been overdoing it. My work days consist of putting in 2 or 3 hours so nothing too tiring. I definitely need to start moving more. I’m such a fair weather person I haven’t tackled too much outdoor activity yet. I have post op follow up appointment on May 3rd so I’m hoping to get the okay to start doing more physical activity. I’m hoping my next round of chemo doesn’t drain my energy.
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Thanks for your supporting thoughts and advice, @Strongwoman, @JoanEG and @GloHo.
I looked into the MyChart app, as you suggested, @GloHo, and it does include the Lakeridge Hospital that she has been to and may have to go to again. I have sent her the link so she can download the app. I know she also does bloodwork done through LifeLabs sometimes, so those may not be available. But it would be good for all the other times and procedures. Thank you!
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@JoanEG That is great news! Glad to hear you are able to do more and have been. It is so hard when recovering to not overdo it and then pay for it later. I have learned that the hard way. It's why I divide up my gardening now because otherwise I don't think that I either would be able to get up or move again. One might think it sad or one can look at it as a new reality. I choose the latter. 😀
It is so freeing when one gets their freedom back when they can drive again. I don't even think I can describe the feeling beyond "being freeing". It is like one's wings have been clipped and one gets them back. I often wonder if we subconsciously make a list of things we will do once we have our freedom back that comes with driving. You know how it goes, we ask someone to take us to "X" medical appt and even if we have other things we want to do, we limit it to the essentials so as to not take up someone else's time. I felt like that anyways. Why? I have no idea because the people that offer truly want to help.
It sounds like you had some great discussions with your doctor/friend and went into some subjects we may not be either ready to face or want to discuss. I am glad you were able to do that. Information about all of it, allows one to make decisions that are right for each of us as individuals. Sometimes those decisions change as time wears on as well. Good for you for being able to have those discussions.
What a precious gift to be able to see your great grandson. I am happy to hear your grand daughter-in-law dropped by so you could see him. Beautiful and memorable! 💖
Sounds like you are having some great days with family and friends. Returning to work must feel good too.
So glad you shared with us! Hope your follow up visit goes well and you are able to do a bit more. Hoping the chemo doesn't cause you to be unwell for long periods. 🤗
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@Tinazzie Life Labs should have its own website that you should be able to log into and see the results there. My parents just did it for my Dad's results. Perhaps suggest that to your daughter as well.
Please keep us posted.
Take care💕
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Thank you @GloHo I was pretty amazed about the flowering. It's pretty incredible, actually now that I know it is not common. I truly don't do anything special to it. You know like sing or talk to it. ;)
A volunteer at my day program at Hospice was making a temperature blanket and is where I got the idea from. Yes, it will be something special for hopefully both of my sons. I hear you on the sewing in of the ends, etc that goes along with it. It does take up a chunk of time at the end to do it. Worth it though.
It's the way it goes sometimes…….all quiet for awhile and I for one, enjoy that opposed to the flurry of activity around my health. Quiet = good at my house. Hope the trial is going as well as you have hoped it would and that the treatments are working. Looking forward to your updates when you have some. In the meantime, enjoy what you can when you can!🤗
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@Strongwoman 😊🤗
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Good Morning Ladies
It is with great sadness that I post this morning. Our beloved Eileen has left our world surrounded by family on April 17th. Her daughter has emailed me to let me know so that I would be able to tell you all. She definitely had quite the battle in the latter half of her journey and will be missed. I am very thankful that she had family around her, as did she, in the final part of her journey. She was a very courageous woman as you can see from her posts. Please feel free to comment on your interactions with her or posts of hers you have read in the days to come. As when we lose one to this disease, there is a part of ourselves that go with it and all it involves. I will be here for all as the grieving occurs. 😥
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@Strongwoman I am so sorry to read this. She had such a rough go of it over the past months. I’m thankful she had her family with her and I hope her passing was peaceful. My thoughts and prayers go out to her family.
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