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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@Tough as Teal, you are so right, this has been the windiest Spring I can remember, I'm surprised more trees are not down. 16c today but the windchill makes it feel like 5c anyway0
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@Fealess...I'm having trouble with blood counts, so I've only just begun cycle #2, part two of it is tomorrow but I expect I will be delayed again due to low neutrophils. In cycle 1 I was delayed twice. But I am feeling very good, much less bone pain and stiffness since starting cycle 20
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Ladies, before I talk about me...I have some sad news to share. I know this site is very focused on hope and encouragement but from time to time we have to accept that not all of us survive this disease. In this case you both wil remember Gaylestorm who was a very regular member of this forum last year. Unfortunately she lost her battle and left us January 27. If you're interested, you can go to https://www.facebook.com/gaylegoodrichart/ where her family posted her last words, the obituary she wrote herself. I will miss her terribly. She was a very talented artist, some of her work having been shared here, a devoted mother and grandmother, and a woman of such honesty and integrity as she fought valiantly over the short course of her disease. RIP dear Sister and friend to all of us.2
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Good morning everyone.
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Aww...that is sad to hear about Gaylestorm, I do remember her.
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Chemo had some hiccups. 2+ hour delay. I wasnt the only one. Fellow sitting near me was quite ticked. I found myself doing some de-escalation. When i did go in, nurse asked me why i was on reduced amount of caelyx. I had been, on two previous tx but dr and i had discussed that this 6th round I would go back up to full pop. This caused further delays until they could reach dr. She confirmed, so then another delay for pharmacy to make new bag. I also learned from nurse that chemo unit, at direction of cancer centre, is overbooking, intentionally. Because they know nurses will work harder to get everyone done. I am not sure what to do with that conversation.Extreme fatigue this week. Can easily sleep 4 hours during the day. Stomach unhappy. Doing betaderm steroid cream to manage hand and foot issues. So far, good.0
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Gaylestorm gave me lots of encourgement and perspective. She was very talented. And strong love for family.1
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@BeamBlossom and @ToughAsTeal can't agree with you more about the weather. I just can't seem to get warm and these gray blah skies are so depressing. I was hard pressed not strangle my son the other day as he told me about the 16C+ temps in Calgary and the green grass and flowers that are starting to emerge. I do need that so badly right now.
Beamblossom are they giving you anything to boost the neutrofils? That's so frustrating when treatment gets delayed. I was telling someone earlier today that when I was first diagnosed I dreaded the thought of treatment at first. But that's been replaced by welcoming knowing something was flowing into my system and killing cancer cells and I dread the pre bloodwork worrying there might be something off to delay a scheduled treatment.
Otherwise I have to admit I"m in a black hole right now. Gayle's passing hit me harder than I expected. Then layered onto that was the fact they forgot to do my CA last week, the weather, being involved in 4 cancer related projects that all blossomed at once and feeling Cancer Overkill right now, and generally feeling crappy. This too shall pass say I !0 -
Oh no.. . So sorry to hear.0
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I had surgery feb 22. Still dealing with a 3-4cm open incison. Had Round 4 chemo on March 24. The flu like symptoms were way worse this time around. Anyone find that normal? Thank goodness was only 2 days. Starting to feel better.0
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@Fearless - Vol Mod ....sorry to hear of your feeling down, I've found it helpful to "get away" from cancer every now and then. That's not my usual MO. I'm more of a deal with it head on type, but with this disease I find getting away from it has given me moments, actually hours, of forgetting I have ovc at all and those are the very best hours of all.0
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Hi @Eileen Good to have you back again this week.
@ToughAsTeal ouch, what a day that was for you. Sheesh about the comment about working the nurses harder by overbooking...what idiot thought that might be a good idea. Those gals work hard enough as it is and we need their minds clear and focused to make sure of no mix ups as we get our treatment. Good that you caught the error in your bag of Caelyx. I have found of late that I'm double checking things I wouldn't have normally checked up on. They do seem so busy that orders don't get written up sometimes, or one hand doesn't know what the other is doing. My CA last week a prime example. I even asked, as she was doing the draw, if the CA was included in that weeks' blood draw requisition and she confirmed it was. Then I got distracted and didn't watch the tubes as they were filled. Seems she forgot the yellow one...that's the one earmarked for CA. So the lab didn't get it.0 -
@Tough as Teal...is this your last round #6? Very frustrating to hear of the overbooking, I think they are doing that at my cancer centre as well, it is so busy compared to my frontline treatment time 2 yrs ago. I usually am booked towards the end of the day so it is a little more quiet, but mornings are madness. I can't understand why we can't have funding to run it 12 hrs a day or longer and some of the weekend as well, they tell me it is a staffing problem.0
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@chris03....are you having Taxol/Carbo? I found treatments tougher starting with treatment #3, glad you bounced back, but as chemo has a cumulative affect on us, they can get tougher as we go along. Hopefully just 2 more left for you?0
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re stepping away... that made me think of something said in the Recurrence session last week... finding myself googling "too much". That said, the other big item in my heart remains in Ukraine. When the gas/oil depot was struck, my cousin was messaging me, telling me they were in the shelter. I couldnt wrap my head around that. His wife is pregnant with first child.I dont have energy to bake (nor desire to be around food). Will try for a short walk if wind guts decrease.0
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@chris03 welcome back. Sorry you're healing so slow. If I recall your 4th chemo is actually the first after surgery. The others we done prior to? But yes, not unusual to have the intensity of side effects increase and the toxicity from the build up of chemo increases. And remember, you are still in surgical recovery so everything is going to feel a bit worse for awhile. Just make sure your cancer care team is aware of any changes in side effects and how tolerable they are. There are approaches they can take to help mitigate any discomfort where necessary.1
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@ToughAsTeal
Good gosh, that is a horrible situation for your cousin, I can't imagine the horror those poor folks are living. I do find it tough to watch the news some nights and I pray Putin gets stopped and soon.0 -
@Fearless - Vol Mod thank you. I needed that but if encouragement today0
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Mmm I was surpised here at the cancer clinic where i go to in Kelowna it wasn't as busy. Normally I am booked for early mornings at it gets packed by the time I leave in 4 yrs. But alot of empty chairs. Not that that is a bad thing. I go in for my 2nd IV of just Avastan next week. Noticing a bit more fatigue this week.
I do have a question though on ports as i put in a request for one. A little nervous about having 1 put in. Does any here have them in your chest and if so how do you find them. Are they bothersome or anything?
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@fearless my CA125 continues to rise. Is there any chance they can just have you in for that draw? Or maybe it will he done on your Avastin week?@BeamBlossom I am happiest when booked first thing after opening. Biggest delay i have had with that is 1.5 hrs. We have an hr drive there, and then hour drive home. I did ask at my last appointment about switching tx to a closer satelite clinic, but, would be under the care of a general oncologist. I dont want that. I want gyne-oncologist.0
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@ToughAsTeal
I don't even have family over there yet can't imagine what those folks are going through. I have to turn off the news as it just breaks my heart to see the suffering that war is causing and for no legitimate reason. I pray for your cousin and their unborn child. Are they still there or have they been able to evacuate to somewhere safe?
@BeamBlossom you're absolutely right. Too much 'cancer' swirling around me and I need to step away. Fortunately one project ended last night. The ongoing one with Queens U is going to be told I"m on a 30 day hiatus so they'll just have to wait for any input from me. And I'll find something fun and frivolous to fill in the time I''ve freed up.0 -
@Eileen love love love love my port.1
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@Eileen...I have had 2 ports, the first one didn't work out very well as it was putting pressure on nerve feeds down my right arm, so after about 4months I was losing strength and muscle control, so it was taken out. Then when I recurred, I had another one put in on the left side, there have been no issues with it. I am in favour of them because I am a venipuncture chicken, just hate dreading that IV poke everytime, and once when getting a CT it took 8 attempts to get a vein on me. The port takes away all that anxiety and speeds things up too. I would recommend it.1
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Hi ladies, it's been awhile since I have joined in on the conversation but I do read all the comments every week. I am very sad to hear about @gaylestorm,my thoughts and prayers to her family.0
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@Eileen in the beginning it felt a bit weird... now i dont even remember its there. Locally, when going for scan, i have to request certain time so that a nurse in ambulatory care can access it. The nurses/technicians in our medical imaging unit are not qualified to do it. I am sure if i went to Hamilton, it would be different.0
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@Eileen I still say the best thing I did for myself was get the port. I've had mine for almost two years now. I was nervous about the procedure to have it implanted and laugh now at how easy it was. You're just left with a little bump on your chest underneath the skin. It doesn't bother me. You can swim, shower etc. freely. Really no restrictions with it. The nurses access it with a needle they insert into the bump for infusions and that doesn't hurt at all...at least it doesn't for me. A wee prick and that's all.1
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Ty @BeamBlossom and @ToughAsTeal for letting me know. Was concerned about any issues afterwards. Ive been doing my research on here to see what people wrote. Seems all good. Sorry to hear @ToughAsTeal that your CA125 is continuing to rise. When may i ask did it start to rise? Hows been your scans? Or Do they plan to switch u to another regiment?0
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@Fearless - Vol Mod i have family in Lviv, Ternopil, and village north of Ternopil. My one older cousin is confined to bed from stroke. They have no way to transport him out of the apartment, and so he and his wife will stay. My male cousin, he cannot leave because of his age. Is doing some work for Ukrainian army now. Same with other female cousins. Will not leave sons and husbands behind, are caregivers for elderly in laws, etc. Only one cousin left for poland. She, her daughter and grand-daughter.0
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@Fearless - Vol Mod I have been doing really well, next 4 months check up in mid May.Just read @gaylestorm obituary and like you described her it's so easy to see her strength and determination to the very end.0
