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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That would be a wonderful, groundbreaking moment in time if/when it happens @melissa We can all hold on to that thread of hope it may one day come to fruition.2
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@JoanEG. Yes I was in Nanaimo, watching for a senior with white hair and glasses, but none of them were you. Now I know why. I was there by ten and out by 12:30 pm. I came home really tired, had a nap and woke up with a headache. Soon I will be having cold roast chicken and broccoli salad. I had Thrifty’s steak and kidney pie for lunch. When I am on Dex I get hungry and I take the opportunity to eat lots.
Hope your recovery is smooth and uneventful.1 -
@Hooodith I typed that reply this morning but didn’t hit the post button! 🤦♀️. My day was very long. 9:45 to 3:45 but it was a much better experience than round one. It went off without a hitch with all the extra precautions. I even got some Christmas shopping done while I was there, Yay cyber Monday!
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@JoanEG. Love it! And what beautiful eyes you have. You are doing much better than I am. I have a headache and am still in bed. I see we both have the dex roses in our cheeks. I bought Xmas cards yesterday so may get to them this afternoon if the headache goes away. Carry on carrying on!1
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@jmbarrhaven
Thank you for letting us know and sharing @mjmck’s obit. Amazing woman!! I had the pleasure of meeting her through a couple of online support groups via Zoom.0 -
Well I'm touching basis with everyone's to let them know how I have been doing.
Got out of the hospital only a week and half later to go back in. Major gi bleed. They rushed me into trauma. They did another CT where I found out that 1 tumor that developed back in sept on my out right side ascending colon penetrated my colon and is growing inside. I knew their was a blockage last time but they couldn't see one. Hence my bowel issues having backup of fecal matter. Sure I had a bleed last time but they said oh we think it's your internal hemmroids. Well I had active bleeding now and they saw it was coming from where the tumor had come inside. So OK let's try coloniscopy again to put in clips. And possible radiation to caterize it. I had Dr speak to my daughter because he mentioned a few procedures. Some not looking good. Possible bowel death and so on. OK this time the smaller tube and colonoscopy successful. Clips in. I was retake off myblood thinner and within 25 hrs stopped bleeding day of colonoscopy.
Dr said OK then we will do a procedure where we go through your groin put in a filter in the vein near the tumor to prevent any blood clots from going to your lung or heart and keep u off blood thinner. Then Dr mentioned that he spoke to the radiologist depth team and the consensus was unless I have active bleeding they will do radiation to caterize. Oh OK. Well thinking I'm going to go home today. As I had procedure done filter in. My oncologist came in we spoke. Then we said OK as long as my hemoglobin is stable cannot see any reason I cannot go home. Then my oncologist comes back and says do u know your scheduled for 5 sessions of radiation. Oh no I understood unless I'm bleeding I wasn't. He said yes Dr didn't put note anywhere. He said he only found out by checking on cancer clinic site for my next treatment that this was arranged. Oh OK. Supposed to start tonight for 5 days and while I'm having it I cannot do Abraxas. They cannot do both. OK. The clips also will help the radiologist pin point where it is to precisely.
Just last Xmas bc here in Kelowna got a new radiation machine that is very precise and better than other one.
I know the other hospital Dr said yes they do it from the back and they have to make sure they don't hit my kidney or liver.
My oncologist told me it will also help kill and shrink the tumor. So I'm glad they are going to go this route. I'm now feeling better oh OK their here now to take me1 -
@Eileen You have had a lot going on since your last post. I can't imagine what that feels like to go through it all. Nice to see/read that you were not alone this time and that your daughter came. How is she doing with supporting you and all the new discoveries? How are YOU, mentally, emotionally and physically? You have had your first radiation treatment in hospital? Will you be going home or after the radiation treatments are completed? From what my cancer friends have noted is that the radiation side effects kick in about the 2nd week. If you do experience any side effects, I sincerely hope they are minimal and manageable. Your poor body has been through enough. I am crossing my fingers that they have figured out your issues and you can heal/recover now.
Know we are all here to support you through your journey. Thank you for updating us. I am sending purple 💜 healing vibes your way.1 -
@jmbarrhaven
I'm saddened to hear about the passing of @mjmck21. She really lived an incredible life. Thank you for the post and link as well. My thoughts are with her family. May she rest in peace.0 -
@Eileen Thanks for sharing your before/after photos. Do you feel empowered after shaving the rest off? Any emotions attached to it before/after? I recall being emotional before and had to go for a walk to "shake it off". You look great in both pics and look happy. Were you off to a fun workshop today (if you want to share)? I am always curious as to what is out there for one to get involved in. You are doing great with your journey, reach out anytime and thank you for sharing the pics. It's great to see smiling faces.😊1
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@Hooodith Those headaches continue to plague you. I am thankful you had your tea time on the weekend sans headache. These seem to debilitate you. Refresh my memory, are these due to side effects from treatment/medications or chronic from pre-cancer? You mentioned your medication for them works, is there anything else that helps with alleviating them? I truly wish the headaches subside soon.
Take care0 -
@Strongwoman that was me who had my head shaved today! 😁. The workshop was Weight Watcher’s, I have been a wellness coach there for 6 years.1
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Talked to the radiologist he says goal is to stop the bleeding not control the cancer he said. He said it might kill some cancer cells and shrink the cancer inside the colon. From what ive been told cancee inside the colon is almost closed off my colon. Now the radiologist is only thinking of only doing 1 treatment not 5. He said doing 5 can put me at higher risk for possible bowel perforation. I dont know. I want to be safe but I feel 1 isn't enough. The other person in that department I was speaking to was saying maybe he will do so many based on my positioning CT they just did. The girls tried to ask him afterwards but he was already gone. Tonight at 630 I have my first radiation treatment. I am maybe hoping for more than 1. He mentioned that if they do 5 and I end up bleeding again they won't go back in and do another 5. But if I have the 1treatment and I end up releasing then they can go in and do another one.
I feel frustrated ...first I get oh yes it will help kill and shrink the cancer in my colon from the on-call oncologist here I've seen numerous times in this hospital to the radiologist saying that this isn't the goal here. IItis just to stop the bleeding. It may help shrink and kill some but he not sure as they don't normally use radiation for ovarian cancer.
I do understand that this was initially what they were going to use it for but i feel after speaking with the oncologist he gave me hope only for the radiologist to shut it down so to speak.
It was my b day their just this past sun so both my girls came down and we did a video stream with my son and they bought me a new phone as my gave up the ghost. It's a refurbished one but still trying to get use to this one. My old one was a Samsung lg4. This is a Samsung galaxy.0 -
Apologies @JoanEG. My brain had a big brain fart there. Is that rewarding work for you being a Wellness Coach? Good for you...6 years is amazing!0
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@Strongwoman not a problem and I love working as a coach. I believe in the concept of weight health based on science and a sustainable, lifetime approach.0
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Happy Belated Bday @Eileen. Not the greatest place to spend a birthday. On the other hand, it sounds like you were surrounded with loved ones and were able to connect with your son further away. Good news on the "newer" phone for you. It feels good to have technology work when we need it to.
Regarding the radiation, it is my understanding that it is not a standard of treatment for ovarian cancer. This does not diminish what you are going through and how frustrated and possibly confused by the conflicting information you are receiving from each health professional. If you took this information and put it aside, do you know what type of quality of life versus quantity that you would like? Have you even had time to pause and think about it? I am thankful to hear your daughters are there with you and helping to advocate for/with you during this conflicting time.
Thoughts and good vibes I am sending your way. Keep us posted as to how you are doing.
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@Strongwoman. My migraines began after my hysterectomy in 1997. When they developed the first triptan it took me two yrs to risk taking it. When I finally took one, when I had a bad migraine, and my husband had driven me to the emergency parking lot outside the nearest hospital, I was waiting to go into anaphalactic shock when my migraine disappeared….completely. It felt like a miracle. And those triptans have been a miracle for migraine sufferers. But you can get rebound headaches from them, which is, I think, what I have at present. If they are, I have to try and lengthen the time in between pills and drink coffee in the mornings.Thanks for your concern about them. I hope I didn’t offend you with my comment about your chin. Personally I love strong chins, but then I am biased from there being so many in my family. I don’t have one as I take after my father’s side.Thanks for all the support you give everyone on this chat- line. It has really helped me, and everyone else, I am sure.1
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@Taita
Thanks for sharing your experience on weekly Taxol/Avastin and Gem and now your current Topotecan treatment. I am trying to research combination treatments…and trying to build a case to retry some in different combos and doses. Maybe there’s a magic elixir we haven’t tried yet!! As you said, it is a disease of one and who knows what might be the right combo for me.I just finished my second weekly Taxol. Just noticing a bit more fatigue around day 4, but it is manageable right now. Just got my hair cut short in preparation for hair loss. Opted not to get buzz immediately this time round.0 -
@Eileen
Happy belated birthday.Boy, you sure have had a very rough go of it lately! I see your strength and determination to get through this has not diminished and I understand your frustration at receiving these mixed messages. I hope your radiation treatment went well last night. You are an admirable lady. Stay strong. Sending positive vibes your way.0 -
Hi everyone
I have a question for anyone that maybe can answer. So this morning my husband tested positive for covid ( symptomatic) now me I just finished my last chemo 14 days ago. So far I'm negative and have no symptoms but I'm sure it's just a matter of time. What concerns me is that my wbcs always seem to bounce back around day 17/18. Has anyone gone through covid while on treatment?0 -
@Hooodith Thank you for sharing about your headaches and origin. Sounds like you are playing a game of balance that keeps tipping one way every once in awhile. I think you have it mastered and hope the rebound headache dissipates soon.
You would be hard pressed to offend me and especially when you are making a comparison like you did. It is not something I attributed to my heritage before and thank you for making that connection for me. My Great Grandmother was a Char woman and grew up in Portsmouth area in a Barnardo Home. That's all I really know and I do have to get back on Ancestry and do some of my own digging around again. I tell you, my to-do list keeps getting bigger instead of smaller.
It is my pleasure to help anyone on this site. If it helps someone get through their day, alleviates some stress they are feeling about something or to have a place to vent, then I consider it all good. If I don't have any solution, someone will on this site. That is what is so awesome about it, the sense of community that is here. I am thankful to have found it myself and to be able to give back after the support I received. 0 -
@melissa. When I started chemo last year, I was given a booklet. One of the things it said was that as I was immuno- compromised, I needed to avoid any infections and if I had symptoms or suspected an infection,I should go straight to emergency as I had less to fight it with. I think at 14 days you are still immuno- compromised. Its probably not what you want to hear, but I would call an ambulance, tell them you are at risk of Covid, immuno- compromised and need to be in care. If you get it, the hospital will be able to oversee your hhealth and may have special stuff they can give you. Good luck, am thinking of you.1
