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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Options
Comments
-
@JoanEG Congrats on your new Grandbaby! Such exciting news and babies bring so much joy! Enjoy every moment you get to have with him. Thanks for sharing your good news and the pic.
Glad to hear your numbers are down and that things are progressing along nicely regarding surgery. It will all come together and truly is not that far off. How are you feeling about it all now that it is approaching soon?
@GloHo I feel that attempting to figure out the cause first before going ahead with any prescription is a good solution. How does that sit with you? I hope your Onc is in agreement regarding coming off the blood pressure pills. I know I would love to stop mine anytime. I know it is medication induced as I was perfectly healthy prior to this. Would love to see that be one less pill for yourself.
How are you feeling or what are your thoughts about the Gemcitabine versus the weekly Paclitaxol? I am sure there are pros/cons for each.0 -
Apologies to all for not being on earlier. I am preparing to head to my parents 3 hours away and was out doing errands before we leave tomorrow. Still not sure if we are going or not but didn't want to be racing around tomorrow doing it.
Hoping we are going. I think I need a change of scenery. 0 -
@Strongwoman I have to admit that I am feeling pretty nervous about the surgery. I am so exhausted right now from my last round of chemo I can’t imagine how I will feel after surgery! I haven’t felt well enough to go meet the new great grandbaby but hopefully on the weekend.0
-
It is very normal to feel nervous about the surgery @JoanEG I did not have chemo prior to mine but had very low blood and required blood transfusions prior to my surgery which had me quite fatigued too. Let us know how we can support you in the coming weeks.
After surgery, it is a tough journey. When I say I "shuffled" more than walked, I am not exaggerating. It was tough and hard but I got there and I know you will too. Do what you can to be prepared and it will help you along the healing journey.
Feelings will crop up and tears may flow, all normal and ok to not be ok or for it to come out in that way. Soon, the day will be here and the waiting and unknown will be behind you.
Here is to hoping that you will get to see your new grandbaby this weekend and basque in the newness and baby smells. They are intoxicating and does well for one's soul. Hugs.1 -
@Strongwoman thank you for always knowing just what to say. I have to admit the tears are flowing today.0
-
@JoanEG How lovely to have a new ggbaby. Look at those eyes! They are already taking in the world, in wonder.I am glad you have a date for surgery. They won’t tell you the time until the last minute. For instance, I had my stent replacement booked for a Monday, they called me on Friday afternoon to tell me to be at admissions by 10 am Monday. That is NRGH anyway.@GloHo Why do you want to get off the high blood pressure pills? Are they bad for us?@Strongwoman Thank you for the poem, it was a great reminder of how things change. But I didn’t understand your reference to LLs and dark times. Maybe I don’t need to, but it was a bit disturbing.I am still struggling with my bladder, and my NP is going to try and get me a urologist in Victoria, since the Nanaimo ones seem to be unavailable. It still may be a long time. It is so frustrating. Without my bladder pain I would be feeling pretty good right now. She says I have interstitial cystitis.We have a big clump of snowdrops under our plum tree, they remind me that spring is groping upwards through the cold soil, and that soon there will be daffs and bluebells, and the camellia bush will flower. I can’t wait.
I hope all-of you in Ontario really enjoy those seven days of sunshine. We have had days of record high temps but with accompanying sluicing down rain. Today we get dry weather and some sunshine too. For a few days anyway, then its back to rain.2 -
After I wrote that last comment I went on to facebook and read a post my friend had written, about Imbolc. Imbolc is a Celtic festival celebrating the halfway point between winter solstice and spring equinox. No wonder I was noticing the snowdrops and thinking about the spring flowers.. so Happy Imbolc everyone, and may Brigid bring you good health and sweet flowers.1
-
@Hooodith The reference to LL's and dark times has to do with my living situation. We rent...the landlords have been awful to us since wanting to sell the house last year. I have had to have my gf here for support/protection from the start due to their antics. They have been awful from the start and above all don't believe I am sick. They keep "poking" at us and it's the last thing we need esp me. It has worn at me emotionally esp when they were pushing hard last year and I wasn't doing well with it at all. All I am worried about is food in to me, will it pass through and BM's. Desperately hoping that I don't have another obstruction. It all brings up terrible emotions from it all. We have a paralegal that is dealing with it and am thankful for having them as a buffer between us. We do our best to cooperate and are met with opposition constantly. It is wearing on anyone. We will get through it. 🤗
As for you...that sounds very uncomfortable. What does one do for the interstitial cystitis? How do you deal with it and the pain? I hope you get to a urologist sooner rather than later.
Ohh snowdrops....so simple yet so pretty. Like tulips....love them! Wow....I can't fathom spring flowers yet only due to climate...otherwise...bring them on. It is so nice to see the spring new growth and life being breathed back into all the trees, shrubs etc
And yes...Happy Imbolc! Let there be some glints of happiness.
0 -
Hang in there @JoanEG I have had several teary moments myself this week. It happens and I have learned to surrender myself to it. It happens, it is a grieving process and it pokes through every now and then. Sometimes light and sometimes harder. I lean into it, figure out how to get through it and carry on. I find music, writing and my art work helps a lot.
I will be thinking of you! 1 -
@Strongwoman I am so so sorry to hear about your landlord problem. It sounds like hell. But I am glad you have a buffer now. How can people be so cruel? As if you don’t have enough to deal with.
speaking of which, IC is incurable and they don’t know the cause. I have had problems with my bladder for years but this has now flared. Probably due to the stress of having cancer, and chemo. It is painful, like having a constant UTI. My NP left a message that I am on a one year waitlist for a urologist in Victoria. It is very depressing. I am going to try naturopathy and acupuncture. All the medical treatments are short-lived, and very invasive. I am hoping this is a flare and might die down.0 -
@Strongwoman thank you. I’m sorry to hear about the problems with your landlord. A nasty landlord is the last thing you should have to worry about. Some people are ruthless.0
-
@Hooodith
No, not bad for you. I was put on the meds because I had Avastin-induced high blood pressure. I’ve been off Avastin for almost a year now and wanted to get off them sooner. Since I was going through different treatments (different drugs) we figured I’d stay on them because some of the drugs had similar warnings. Now my blood pressure is continuously below 100 and my chemo Onc suggested it might be time to stop them. I’m all for it - one less pill to take.0 -
@Strongwoman
I agree with figuring out what is causing the hemoglobin drop first…I just wasn’t sure if waiting was the best option with the way my count was dropping. She felt I would be ok even though I still had two treatments before I see her. My count remained stable at my last treatment…so not another drop, but still at the low end of norm.I am running out of treatment options so even though weekly Paclitaxel isn’t reducing my CA125, it has been rising slowly so I have remained on it. My CT later this month will probably determine where I’m headed. Next standard of treatment is Gemcitabine…I am still trying to research options for combo treatment and then will try to convince my Onc to do it! As usual, I will deal with whatever it brings my way!!Some days I just feel lost because I feel fine (quality of life is good, no pain, no other complications) but because I’m running out of treatment options it’s scary. Do they just say that’s it…no more treatment options…sorry.I am looking at some potential clinical trials in Detroit (2-hour drive) but I am the sole driver and don’t want to do that trek in the winter. Plus I have to figure out if that would even be a possibility.1 -
@Strongwoman
Sorry to hear that you’re still experiencing issues with your landlord. Glad you have a paralegal to work that end of things. The landlords sound awful!!!
I hope you can figure out a schedule that works for your bowels. One day fluid…one day low residue…or some such combination. I tried fluid for a day and I couldn’t do it! I had to eat. I don’t know how you do it but I can definitely understand the toll it is taking on you emotionally and physically. I know that some days I am just waiting to have my BM…then if I don’t, my mind wanders to those dark places, I take my laxative, wait and hope it works.When is your next appt with your Onc? That’s when you’ll discuss your treatment options right?1 -
@Strongwoman
Forgot to mention…
When I was starting to experience constipation and they told me my lesion was very close to my bowel, I began worrying about potential blockages, I did some research and came across “colonic stents.” It has been quite a while since I looked it up, but it has been at the back of my mind to raise if I did have a blockage. I do not know all the pros and cons, and haven’t done extensive research, but you may want to look it up to see if it might be an option for you.1 -
During my meltdown on Teal Thursday I stumbled across this poem. It made me feel like I was heard and seen. I hope you can view it in the photo format.
1 -
@Strongwoman
I hope you were able to head to your parents. Change of scenery plus change in weather plus some Mom-pampering…sure way to lift your spirits and get some renewed energy!!0 -
Hello Everyone! I had to take some time away as I struggled with my bowels again. Reverted back to liquids, upped my Restoralax and tried to relax. It finally worked late today. I know I would have been in a bad spot if I had not done that when I did.
Now @JoanEG that was a wonderful poem and thank you for sharing. It rings true for so many and conjures images in our heads of positivity and troops rallying around us. I am thankful it resonates with you and helps to lift you up. This week will be one day at a time for you. Be patient with yourself and allow whatever comes forward to just "be". Let it stay for however long it needs to stay, recognize it and let it go or move on. You are stronger than you think.🤗
@Hooodith Thank you for the kind words. Our Landlords are something else for sure and am thankful daily for our paralegal to buffer from us the volatility they spew forth.
I do hope the naturopath has some solutions. I did read that acupuncture does indeed seem to help with your IC. Fingers crossed 🤞 it rings true for you as well and you obtain some relief. Does CBD help with the pain at all or have you tried that? It may help with some of the inflammatory part of the IC as well. May be worth a try....???
@GloHo Thank you. We did not go this weekend but are leaving Friday to go there. It's been a tough week. The sunshine today helped. Talking to the paralegal on Friday helped to quell some fears/emotions within me. Thank you, I did look up the stents and will inquire about it. Not sure if it would help in my case but worth exploring and finding out answers. I do hope they come up with a date for me to be seen soon. I truly feel only surgery will help. Guess we will find out soon enough either way. Most definitely in my case when the BM is not the way it should be, my mind goes to dark places it shouldn't. Interesting how fast it resorts to that in times like these. Will see if I can start to rewire that neural pathway. 🤗
Thank you for the kind words as well. It is wonderful having all the support from those on this site as well as our inside circle we have around us daily.
@Eileen Thought I would check in with you to see where you are at. I do pray you are able to give us an update. Wishing you well thoughts and peacefulness.🤗
@Taita How are these days finding you? Have you been able to rest and enjoy family around you. I wish you peacefulness as well.🤗
@babs272 How are the days finding you? Been awhile since we have heard from you.
@melissa How have you been spending your days? Feeling better daily?
@HorseGirl How are you doing? Any news you want to share with the group?
To all others I wish you all well. Peacefulness, pain free and support of family and friends. Thinking of all of you and your strength shown throughout your own personal journeys. 🤗💕💕0 -
@Strongwoman glad you found some relief for your bowel issues. Thank you for always being so supportive. You are our glue! ❤️0
-
Hi Everyone well I am now as of this week being put on palative care. Despite the weekly abraxane my CT has sown it has grown throughout my abdominal wall. I feel it growing with my hands. They just drained 3 and half litres out of me a week ago. Was able to eat more but now back to throwing up. Using my Nausea pills. Odanstran and the metrocloprimide. Having issues drinking water too. Reseen my oncologist. She is back. She is going to put me on oral chemo. It wont help much as it is maybe 25 percent chance. Start that this coming wed. She is going to arrange to have a permenant drain put in for me, but told me those dreaded words I'm looking at maybe a couple months now.
My daughter's were with me. My own family Dr called me as soon as he got a copy of my CT as well and talked with me to make sure my oncologist were doing everything possible. And if I need help call him.
I'm at my daughters right now. Basically I cannot make my meals clean house etc anymore. I'm still walking on my own and having a shower every other day. But that is getting difficult now too. So when palliative nurse comes to see me I think it's time for a few items maybe a chair in the shower if I choose to stay with my daughter. Maybe a walker too just in case. Been trying to get in touch with this 1 cremation srrvuce through email the last week or so but no answer ill try phoning them monday. Their a sister company of one of the funeral homes here. My bgf came down and moved in with me but had to go back home for a week or so to deal with urgent personal matters.2 -
Oh it now too started growing on part of my liver now.0
-
@Eileen I am very saddened to hear this. How are you holding up with it all? It is a lot. How are your daughters doing with it? Do you know if you are wanting to stay with your family until the end or go to Hospice or a Palliative Unit at the Hospital? It's a lot to think about and I am thankful I know where I want to go so that my family does not have to face this and make the choices. You sound very uncomfortable most of the time. The permanent drain for the ascites can help for sure and does have a few hiccups afterwards but am sure they will help fix those for you. I wish that you are as pain free as can be and that these other symptoms are put to rest soon so that you can rest. It's a lot and draining on you for sure. I wish that you are spending time with the family when you can and are lucid enough. Do your best to let go of anything you are holding on to and find peace for yourself and others. The time has come for you to rest, spread the rest of your love and find peace.......
Kindly keep us updated as you can. We will all be thinking of you. 1 -
@JoanEG Thank you for your very kind words. 1
-
Hello ladies
I hope the weekend brought a smile to all of your faces even if only for a moment. This weekend i reconnected with an old friend, one i have not seen in or spoken to much in almost 15 years. During our dinner she started talking about her uncle who is going through cancer and how he is taking medicinal mushrooms, turkey tail etc.... I replied.. oh! some women in my online support group take those.
Want to laugh ladies? now, had I become a stand-up comedian one of my genres would have been self-deprecating humor as I can make fun of myself and tell you all that I truly thought the turkey tail tea was made from REAL turkey tail : ). What a dodo bird I am. It reminded me of a scene from the film The Addams Family where the character Wednesday Addams approaches a girl selling girl guide cookies and she asks " are they made from real girl guides?"
@Sandi6 I had tried sending this message out last night but for whatever reason it simply would not post no matter what I tried. By now you may be done your first chemo session and I hope it was smooth sailing. I was going to tell you about my experience and how like @Strongwoman mentioned I reacted as well. It is very very common to react initially especially with Taxol. Im not sure that was one of the drugs they would be giving you as you mentioned they might proceed with a different combo for your subtype. Bottom line, reactions are scary, but very manageable. Oncology nurses are very well trained and know what they are doing. In my centre they work together and can spot a reaction a mile away. I have no doubt you will be in good hands.
@JoanEG was thinking of you as you expressed worry about your upcoming surgery. 110% normal. I was a complete disaster the morning of my surgery. My anxiety was severe to the point i was so nauseated I could not brush my teeth due to gagging. The good news is you have just about completed your chemo, only one after surgery, that combined with your positive CT scan results you may end up having a shorter surgery, fingers crossed. From what you said it sounds like your team has all their ducks in a row and are taking all the necessary precautionary measures. I will be thinking of you on the 12th : )
@GloHo hoping the weekly Taxol will start to lower your CA125 and that your upcoming scan is positive. I have my 3 months post chemo scan on the 9th. If anyone has any suggestions on how to not drive oneself crazy during the wait and see period i am all ears. I hope you don't need gemcitabine, but if you do I have heard good things about it from my onc.
@Strongwoman thanks for asking how im doing. I am trying to be consistent with the gym, I average 3 times a week and enjoy the endorphin release it brings. I hate winter and am looking forward to going on walks on our nice warm lilac scented summer evenings. I was sorry to hear you have to deal with nasty landlords hopefully karma shows them the error of their ways. I hope by now things with the low residue are looking better. Perhaps your body just needs more time to adjust?
@Hooodith I am sorry you're having a hard time with your IC hopefully you will find a solution that provides relief soon.
@Eileen I have no words.. All I can say is I hope you are getting the care you deserve and are , or will get what you need to be much more comfortable soon. To say you have been through a lot would be a great understatement. You are a fighter and I admire that, I pray the chemo pill shrinks the tumors. 25% chance is not nothing. Don't give up xo.1 -
@melissa that’s so funny! Ewwww turkey tails!
I just found out my surgery is now changed to March 4th. So next up round 6 of chemo on Feb 19th. I had very informative calls with the nurse and the anesthesiologist this morning so I have that out of the way. Other than the inconvenience to others I’mmkay with the new surgery date.0 -
@Eileen
I am so saddened to hear your news. I do hope the chemo pill and ascites drain provide
you with some relief from the pain. It is good to hear that you are able to stay with your daughter for the support you need right now and it sounds like both of your Drs are there for you and are doing everything to keep you comfortable. You have been a warrior throughout your journey. You are truly an inspiration.
0
