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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@Strongwoman we do this every year and it’s so much fun! Here are a few pics. I’m the short one with white hair. The other two are my much younger sisters. (9 & 10 years younger). 😁
This weekend I will be doing a big yard cleanup. I live on an acreage and I have a giant maple tree right in front of my house that has finally she almost all it’s leaves. So it will be a bonfire and weiner roast with the grands. We had a freak snowstorm overnight Tuesday. Absolutely unheard of this time of year on my island in the Pacific! Knocked out power all over the place but luckily mine stayed on but I had no cable or internet. I was glad it was back on when I got home a short time ago.
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@Hooodith Thank you and I loved your story. Made me laugh!
I, too, surmise it is the dex that is keeping your energy up today. Pain is a new one. Make sure to mention it or call in tomorrow if it is still there. I don't believe that is a normal reaction to chemo. I am thankful that it has helped the bladder and gut issues as well. I have been informed that the dex can assist with that and help to calm things down. I am happy to hear you were able to get in with your former counsellor and let that awful experience be behind you. I am also envious of your neighbour's hightailing it out of here. If only eh?
The symposium is usually available afterwards for viewing as well. If you are unable to catch it live then you should be able to catch up after. Hopefully you will have some success with it.
You take care of you and don't forget to go rest. You will be tired and tomorrow may be a quiet day.
Take care.0 -
@JoanEG
Those are great pics and what a set up you 3 have! I was looking back at my photos on my phone and was thinking last night that I need to get them off and make some albums with them. Next on the list....
That is a big maple. I also saw 2 dogs in there. Are they yours? Cute.0 -
@Strongwoman I was actually just out for a walk with those two! Here is the rear view 😁. Yes they are mine (well they think they own me). My granddaughter came to live with me in 2017. She lived in a small town in Saskatchewan and came her to attend university… she brought along her 2 dogs. She now lives with her boyfriend and the dogs live with me. I wouldn’t give them back even if she wanted me to! They will be 13 in January and have never been separated.
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How do you post pics on here? I am technically challenged.1
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@Hooodith No worries. You can save your picture and then attach by tapping the paper with the fold down in the corner or you should be able to copy and paste.
Let me know if you need anymore help or if anyone else has some helpful hints.. jump in and help out.1 -
Hello All and Happy Friday.
I am including some pics today. First 2 will be from going the Fear Farm a week ago with my gf, sons and one of their gf's. It was so much fun.
This next one is my youngest sister and myself waiting for my niece to try on her wedding dress and final fitting.
Hope everyone enjoy's their Friday. Today in Ontario we are to get a warm but rainy day with the potential to beat an all time high for the day. But.....tonight the temp is to drop down to 1 degree. I hate to say it but I feel that white stuff is just around the corner for us.
Have a great day everyone!2 -
@Strongwoman great pictures! You and your sister sure look alike! Happy Friday.0
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@Strongwoman What great pictures! Love them! Still haven’t figured out how to do it yet, but my techy hubby will do it for me if I can’t. Lovely sunshine here today, and lots of people messaging me with good wishes. I feel loved. Hoping to get out for another walk today, like yesterday. The Dex is giving me so much energy, I may cook dinner tonight. I have connected to InspireHealth which is BC’s answer to Wellspring, and have been trying to connect with their Zoom orientation, but problems with volume. Today Himself is getting his double vaxxes, flu and Covid. I have to wait till I am over this chemo, and before my operation. Its so hard to keep all these appts in the safest places, its a bit discombobulating.Happy Halloween everyone, Gabriola does a big fireworks and bonfire on Saturday at a beach park. Hot dogs, hot choc, fireworks. All put on by our marvellous volunteer fire department. They collect the money for the fireworks for a few weeks beforehand, catching people at the ferry line up. Its a big community event. I hope I can make it, wearing a mask and well wrapped up.2
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Heard from @mjmck21 this morning. She sent me a text very late last night. She feels she is hitting the end of the disease now with the bowel obstruction she posted about several weeks ago. She does not think she has much longer to live and plans on using MAID if the pain gets too bad. She asked me to communicate to all of you participating in this Thursday chat forum how grateful she is for the support and comraderie she received from it. It is one of the mixed blessings of this forum that as a collective of mostly late stage ovarian cancer patients we get the joy of getting to know each other followed by the heartache of losing new and valued friends.5
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@jmbarrhaven I want to personally thank you for letting us know and for being there for @mjmck21
I am saddened to hear about @mjmck21 and what this disease is doing to her currently. I want you to know @mjmck21that you have been a big part of this forum and all your input and advice has been welcomed and helpful to many. Please know that you have made a difference and contributed to enrich many lives. I wish you a peaceful ending and that you go as you would like to go. I am saddened to hear it has come to this stage and know there will be many hands to take when you get there who will show you the ropes and welcome you.
It is with a heavy heart that I say goodbye to you today and hope you are lucid enough to see or hear it. We may lose you but another star will shine bright in the night which will be you! Go in peace.
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@jmbarrhaven Please convey my hope for peace to @mjmck21. I will be thinking of her a lot, wishing her an easy transition, surrounded by love.
@JoanEG, how are you doing? I think you had your first chemo yesterday or Monday. Let me know if you wanna talk. Do you get the Dex days, like I do?Its not Thursday, but I need to say that I have had a much worse time with this chemo infusion after-effects. Yesterday I took more painkillers (opiods) in one day than I have ever done before. They were necessary, but it worries me, and its a good thing I have spares because my NP refuses to ever give me more. The hospital clinic dr was surprised to hear this and said that they do not limit them if they are needed. I sometimes think that medics think I am an addict, but I get no joy from them, except the joy of being pain-free. But I am habituated to them which means that as time goes on they become less effective. The pain I experience is gut pain. Sometimes a prolonged ache, sometimes spasms and cramps. I am not blocked or bunged up at all. No-one has explained what it is. My NP says it is the chemo. I would welcome ideas about this. I have been taking Buscopan occasionally, with much care as I do not want to experience Ileus. It helps a bit.I am very tempted to ask mon onc to give me less of the chemo. I am on Doxyrubin and Carbo. The Dox is very toxic and hard on the body and this body is now 77. The trouble is, its working. My numbers are going down, I could be looking at a long remission. But I am not sure I can do two more of this, and people say it gets worse nearer the end of the regime. All comments welcome.1 -
@Hooodith Thank you for sharing and not waiting until tomorrow. There are times we need the support now not later. I can hear the anguish in your post. I am sorry to hear you are experiencing this and feeling not heard. If you don't mind sharing, what opiod are you on? Is not short acting or long acting? I was on a short acting one and got switched to a long acting one which proved to be better for me. I had no idea that first I was on a short one and that there was an option of a longer lasting one. This decreases the constipation equation greatly esp with taking Restoralax or Lactulose daily. I saddened by the lack of understanding of your pain and any solutions for it. I do sincerely hope you get a resolution soon. I, too, would rather not take anything but don't have that option anymore. It is what it is and I have come to a resolution with that within myself. I am glad you are being careful with the Buscopan as well. The abdominal "gut" pain is awful and I do understand what it feels like esp when you do not get any relief.
Why are you hesitant to ask for a decrease in the chemo? Is it not worth the inquiry? Or are you just "done" and don't feel like asking anymore? I say this as I have been like that during my journey. It is tough navigating it all.
I am thankful to hear that this may cause you to have a long remission. It sounds like it feels like the goal post is set way back for you currently. Would that be a fair assumption? I truly hope it is not as awful for the next two rounds for you. You are having a tough go and your body is telling you so as well.
Know that you are heard and feel free to write when you feel the need to. We are all here for you.
Take care of you.2 -
@Hooodith I too have had a lot of problems getting opioids for pain associated with chemo side effects. I have routinely had to beg for them. Its not as if they have any reason to believe I will abuse them. One of the few benefits of the revolving door of oncological assistance at a teaching hospital is that occasionally you get someone who is willing to write you a prescription for a decent amount of pain medication. It is very aggravating. I find that it has caused me to hoard a small stockpile for times when I am desperate. It is especially ridiculous for a terminal cancer patient.1
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@Strongwoman. @jmbarrhaven Thanks so much for your swift and empathic response. I am on Hydromorphone, 2 mg tabs. A maximum allowed of 10 mgs per day. I have been on them since March 2022, at first because of severe muscle and joint pain post chemo, then I had a roller- coaster of painful medical problems. I was never long enough out of trouble to be able to get off them. I had a kidney infection with sepsis, a very problematic uretal stent, pulmonary embolisms, debulking surgery with insufficient pain management post op, bladder pain, gut pain, plus a back problem with nerve pain, requiring me to use a walker, and chronic migraines. And the problem of pain mgmt is compounded by the two people closest to me, my husband who is my caregiver, and my Nurse Practitioner. My husband is wonderful, and would do anything for me, and does, but he is terrified that I might overdose, and reacts when I want and need extra hydromorphone. He is scared that one day he will come into my room and I will be dead and it will be his fault for not being more vigilant. My NP is rule bound, and says it is “not good medicine” to give me more, and that, “ after all, its not like you are palliative” So these two, between them, ensure that I rarely have enough pain meds inside me to give me complete relief. We also save up spare pills on those lovely days when I don’t need the whole five, and I am able to take them when desperate. The fear is that I will run out of them before the prescription renewal day, and the pharmacy will not give you any before that because they are a controlled drug. But the pills are becoming less effective, and sometimes I really need to take two. This idea is greeted with extreme concern by my husband. This is in spite of the fact that in Emergency, if I go there ( reluctantly, its a horrible journey from our little island) they go on giving me hydromorphone until the pain has gone. And by injection, too, which is highly effective. I am interested in this long acting opioid you mentioned. It would be great for the hydromorphone to last longer than the three hrs it seems to these days. I would definitely like to know more about it.This is Day 8 post chemo and I am still in pain , exhausted, and bedridden. I am definitely going to ask mon onc to lower the amount I am getting from now on. I am having a stent replacement surgery on Monday, day surgery but a general anaesthetic. I don’t know at this point whether or not I will be well enough for it.0
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@Hooodith Thank you for sharing. You are on a short acting one and why you are taking it so often. They only last an hour or two. I started on mine due to back pain so bad post surgery. When I started taking more my Palliative doctor suggested the long acting slow release ones so that the effectiveness was longer. I started on a low dose ( I believe 3mg) every 12 hours. It was very effective. It is Hydromorphone I am on. It has been increased due to my palliative state and pain management. I function normally and still drive. Initially I did not but am now fine. If it were me, I would inquire about it and ask why you wouldn't be a candidate. You would probably be taking less on a daily basis. I have 1 and 2 MG ones for breakthrough meds when needed. I try not to take them unless absolutely necessary due to the constipation issue with them. I hope you are heard and are switched. Pain is pain and they are not living it.
I hope you are either well enough or it gets postponed to do the Stent replacement. It probably takes a lot out of you. I had the discussion today with my palliative doc about possible nephrostomy in my near future.
I am glad to hear you will discuss lowering your dose for the next 2 rounds. It perhaps may be the right decision for you currently.
You are doing well and understand the bad/down days. Constant pain can add to that and I, personally, in my past work seen it first hand with the best of them. It is hard to not have it affect you in some way (constant pain) as it slowly wears away at oneself.
All the best and let us know what happens
Reach out anytime!1 -
@JoanEG. Thanks for your sendings. It means a lot.@Strongwoman. Thanks for this information. I am going to ask about the long acting hydromorphone. Yes the constant pain does wear me down, and it will drive me to MAID if it goes on too long with no relief. I am wondering about spending some time in the palliative care section of our hospital, just to get this sorted out. It is supposed to be for respite care and pain mgmt as well, and has a very good reputation. I am also going to contact our community hospice program co- ordinator and see if she has any suggestions. Thanks again for your wise counsel.0
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Good Day Everyone. Welcome to the 2nd day of November. Can you believe it? I can't. Time flies.
Let's all send @mjmck21 well wishes due to her bowel obstruction being irreversible. Let us hope that she goes as she wants and that the transition is smooth and pain free. Thanking her for all her contributions to this forum. I am saddened to hear her bowel obstruction is winning the battle. Go in peace my friend.
I did a workshop at Hospice on Monday which was to create on a plain mask, items from nature that will intentional as we face the coming winter months. We were given about 45 mins to do this and there were a variety of sources to work with.
Mine represented the following: Creative, Grounded, Rosy Cheeks, Drown the Noise, Courage
It was a fun workshop for sure and glad I went.
How is everyone doing this week? I have seen some posts up this week and some new sisters as well. Some, I have not seen any activity for a bit. Is everything ok? Want to share with the group or privately?
Let me/us know and we can go from there.
Today, I have made honey bran muffins and have put chili in the crock pot. That will be about it for the day for myself.
I finally finished off my friend's Legacy projects she was unable to do herself. Here is a picture of the blanket I made for her nephew.
So, ladies, what is going on in your world and what would you like to discuss today?1 -
Good afternoon. My doctor informed me yesterday that Trametinib will not be covered by Novertist and by my insurance. It will cost me approx. $9,500 per month.. just don’t know What to do - Doctor suggested to start avastin/taxol instead for thé low grade serous. Thanks0
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Hello @Belouche1 Welcome to our group chat. Is this the first treatment you would be getting for LGSC?
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Hello and Happy Thursday! It’s been a while since I participated in this chat, however, I always do go back and check in.
I’m so sorry to hear about @mjmck21, and am hopeful she will pull through! I always found her to be so positive and determined to fight this. My prayers and best wishes are with her. Thank you @jmbarrhaven for letting us know and do keep us posted on her condition.
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No I had radiotherapy, caboplatine/taxol, immunotherapy and a major surgery in 2020 - all thé cancer cell are situated around my right lung and chest- i was diagnosed with borderline stage 1 in 2003 and reoccurance in 2010 - at stage 4
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