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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@Fearless_Moderator I used to get nosebleeds very often when I was younger and they were pretty terrible. I had a relative nurse tell my Mom to run my wrists under cold water until I could get it to slow down. It does work and I did this with my kids as well. Not sure if it will help you but it might.0
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Hmmmm, sounds weird @Strongwoman but it won't hurt so soon as I'm off our chat today I'll try your suggestion. Worst case I'll have nice clean wrists!0
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As for the Palliative Day Program at Hospice:
It is a referral program but you can self refer and don't have to referred by a doctor. You just call and speak with someone and then will receive a call back to be able to join.
They try their best to keep numbers in the group at a minimum (I believe under 10) to make it more effective.
There is one person who moderates it and 2 volunteers that join the group as well.
Everything is confidential and you sign a waiver as well regarding this.
This program runs from 10am-1pm on the same day every week. The first hour is coffee and general chat or issues one may be going through, second hour is a group activity (yesterday we did a trivia thing) and last hour is a hot lunch and general chat.
Everyone is at different stages but have palliative diagnosis. Some have surpassed their given date and others not. It is an opportunity to share, ask questions and also receive some information you may not already be aware of. It is a safe space to chat about how you feel etc with no judgement.
Everyone has different cancers/diseases which is good as well.
I felt it was what I was looking for and needed.1 -
@strongwoman that sounds excellent for those of us who are not curable but looking for ways to live with this disease for as long as possible. I wonder if all Hospices have the same program? I think I'll make a few calls this week and see what's available out my way.1
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@Fearless_Moderator I had a friend of the family who utilized a different program there also inform me they have a library of books. I will be asking about that as well to see if there is anything there that may help. I am a big reader so it would be good to check out what they have.0
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Happy Thursday everyone. Rough couple of weeks. Had CT Scan on Monday and Mammogram on Tuesday. Good news if I read the weird report right is that the treatment is finally working on the rogue lymph node and the breast cancer. 🤞. Will know tomorrow when I meet with my Dr. Bad news is as I mentioned before the last round of antibiotics played havoc with my bowels and things still aren’t back to normal (exhausting) and it has resulted in a hiatus hernia from coughing and strain going to the bathroom. As my nurses say I have side effects from the side effects. Lol! Have to laugh or you would cry. Toe and finger nails are getting more tender as they come off but managing. Shortness of breath is an issue and while I am stable my ascities is increasing. So, I really can’t complain, all in all manageable but frustrating. Lapelga is working to keep my WBC counts up and I am starting to have better days this week. Looking forward to a warmer day tomorrow!!0
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@Fearless_Moderator I hear you about the nosebleeds. Mine are mostly in the morning and I really find if I “blow them out” it stops. I know it’s weird but it works for me. Then my. Nose just continually drips but it is less annoying. 😉0
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@Taita That sounds rough. I am sorry you have had to go through all of that. But I do agree with your statement "have to laugh or you would cry". Totally true!!
What do you do to keep your spirits up and/or to keep your mind off things?
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I was out with my hubby on the weekend and he wanted me to try on a new pair of Blundstones (shoe/boot). I did not have the energy or strength to be able to get them on even with a shoe horn. It really hit me and upset me to see that I am getting weaker and I don't like it one bit.1
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@Strongwoman good question. Usually it is easy for me but it has been one thing after another. I am exploring counselling, I think it is time. The best positive focus for me is my family. I am very lucky. I did go out last Saturday to a neighborhood “progressive” cocktail and appetizer event. Five neighbourhood houses including our own. Longest walk was 50 yards. Ha ha! One of our neighbours is going through a really rough time with metastatic lung cancer and she and her husband and daughter joined us. If I say so we looked pretty good!! Had a great time. Only a few hours and Sunday I was EXHAUSTED! It taught me a couple of things. Put yourself out there even if you don’t feel fabulous and I was surprised how good it felt to “socialize” and no way we can do the Hospital Gala next month!! 😂. It is a 7 hour affair.0
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@Taita I'm so glad to hear from you today. Many thanks for representing us and our needs to the federal government recently, especially given all that's going on with your health. I understand the trip you all made to Ottawa was a real success...although I guess you can't measure it until we see if we get into the next budget. "show me the money" eh.
So sorry your bowel issues continue and now a hernia. I have an incisional one just above my belly button or at least what serves as one that was created when they closed me up after surgery. Great cancer surgeon but let's just say a course in cosmetic surgery could be a Christmas gift for him. A piece of my bowel protrudes into it and is just danged annoying let alone worrisome when they keep stressing with me that I'm high risk for a bowel perforation while I'm taking the Avastin. But I'm like you. In the grand scheme of things I'm OK. Not great but OK I'll take.
Oh and the Lapelga was a Godsend for me when I was on Cisplatin for almost a year. Kept my WBC's right up where they belonged and that was mid Covid so I almost credit not getting it to how well my immunity system was working. Which reminds me, after this chat I must book out new Covid shots.1 -
@Taita I do try to put myself out there even when I don't feel like I want to go. I agree on the tired part but it is something to get out. I am struggling with the company thing. Some company I want to see and others, I let come as it will make them feel better but I don't feel the joy from it. It is a hard thing to navigate.
I am happy to hear you got out and enjoyed yourself and to come to some self realization.
Thank you for your input. It is inspiring.1 -
@Taita @Strongwoman please add me to the club. I remarked to my husband just yesterday I feel like this is the beginning of the end. I'm so tired all the time, between the neuropathy in my feet and lower legs and something going on in my hip or lower spine (MRI next week) my moblility is just about nil. But on the upside, my oncology team are really focused on improving my quality of life and there is a plan from which we're making wee steps in inproving things. I'm learning now that even the smallest postive change is a time to celebrate.1
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@Strongwoman I hate to say this but learn to say NO. If the visit is for them and doesn't bring you joy, then say no. The hardest thing for me was realizing this a time in my life that as a "giver" it's time to say NO and do those things that me ME happy. It sounds so selfish but it feels so good when executed kindly. @Taita I credit my counsellor (social worker at KGH) for getting me to change my perspective.
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@Fearless_Moderator
I so agree with that. I have also had to let go of "the dangling apple" as well. My other trial drug and doctor that would get me that seem to have "fallen off the face of the earth". That is even with myself, palliative doctor and nurse case manager calling. It was creating "false hope" for me and I can't go there. So I have to put it in a box to be opened another day. I think it is the only way I will get through it.
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Ladies, bye bye from me for today as well. Stay strong....you all continue to demonstrate enormous resiliency. So keep moving those mountains and I'll do my share too.
See you next week.....
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OCTOBER 27TH AND WELCOME TO ANOTHER TEAL THURSDAY!
Brrrrrrr......after a lovely snap of warm weather, it seems old man winter is trying to sneak in and greet us. My son sent pictures of snow where he is out west. Here in south-east Ontario is just COLD although the sun is shining. But as long as there are leaves, even one, on the trees I think I'll still call it fall. Hmmm, sort of a metaphor for us.
Has anyone had any radiation? It seems, if the MRI I had at 7 this morning confirms, my leg trouble is caused by a nodule pressing on the psoas muscle and some nerves and it's been suggested I begin 5 days of radiation next week. This is something I haven't had before, nor has it been mentioned very much on our site here. Just wondering if what they are telling me rings true....you feel nothing, common side effects not much more than some nausea and diharea but could get some pigment change later. It just seems too easy LOL.Well, time to get started ladies.......say hello and inroduce yourself........
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Good Morning
Well restarted my chemo yesterday of the gem and avastan. Had my port in now since a week ago last monday. All good it was really surprised minimum pain after freezing worn off. I talked to my oncologist on tues about some of you that did Lapegla. She said here in BC they have to fill out a special form and she was going to look into it for me. Firgured it was a good option as my first chemo with gem really brought down my levels. So i got a call from the nurse and she asked about my coverage and being that i am on persons with disability, that with the form the drug called Filgrastim it would be fully covered through my bc médical. I take 2 shots a week while on chemo. I will have to ask though about the week off. As for myself been more tired these days. I guess with all the chemo its ti be expected. Weather here gloomy today. I heard some parts of alberta already getting snow. Brrrr. Not ready for that yet.0 -
Oh i should mention the nurse told me while i take these shots to keep my wbc up i dont need weekly blood cbc done. That and being that my platlet count is back up to 168. I guess she said my platlet count was like 100 last 4 weeks ago thats why i had to be checked weekly.0
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Oh sorry to hear about your leg issues. @Fearless_Moderator. I often wonder myself because ive also been getting joint pain myself recently. I do know that this Filgrastim will also cause some joint pain in my hips etc my oncologist mentioned. I hope not to bad.0
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Hi @Eileen. Glad to have you back this week.
Yes, the Gem is particularly hard on the WBCs. Glad you've found a solution that's covered by insurance. And the added fatigue is normal with Gem. At least it was for me when I was on it last year and during primary treatment. It sure would be nice if someone would find something to help boost our energy levels while and after chemo. It seem to be the most common side effect for all.0 -
Oh for sure id go for that. Even vacuuming and washing my floors i had to take breaks like man. So same here with weather nice for first few weeks really warm then brrr. Still lots of trees still green here lots red and some falling off. Its 8 here today looks like rain. I'll take it over snow any day.
So i go in to the cancer clinic tomorrow with my new shots for a teaching class on how to administer the Filgrastim.0 -
@Eileen, assuming the Filgratim you're taking is like the Lapelga and other WBC boosters I've had the side effect of joint aching and pain is quite normal. I found Tylenol quite adequately managed it for me. But check with your oncologist for his/her preferred intervention if you feel you need something to help with the pain.0
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I read that Lapegla u only need 1 shot where as Filgrastim you need more, not as potent i guess from what i read. I guess thats why i do 2 shots a week. But yes i will ask the nurse tomorrow. I was reading that claritin helps an antihistame. But im allergic to that go figure eh lol.0
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I take it that means they're expecting you to administer the shots yourself? If that's the case it's easy. I was on daily blood thinners last fall that I had to inject myself for 3 months. Towards the end I felt like I was running out of spots on my belly I could use. But it was pretty easy to do. When I had the Lapelga I went to the nurse in town and she did those for me. I guess because I had them in the back side of my arm which is difficult to get at yourself. Although I never did ask if they could be positioned elsewhere on the body that I could reach myself. Fortunately town for me is only a 15 minute drive and it go me out of the house once a week so I didn't complain about having to go to her.0
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Oh yes i take enoxoparin the blood thinner in my stomach daily. Same here running out of spots. They said its in the stomach too0
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Oh yes the cancer clinic for me is only 6kms away so yes about 10 min too here.0
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Not sure about you but I found that with the enoxaparin shots sometimes Id bruise badly at the injection sight and sometimes nothing. It took the bruises ages to disappear, although they were useful to remind me which side of my belly I'd used the week before. Also noticed that some sites ended up with scar tissue under the skin. But not always. But I can still feel little bumps on my belly that I assume won't go away, not that they bother me at all.0
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On the other hand i did notice even though i wasnt able to have my full gem the first sesson my ca125 did go down a bit by 30 not much but it was like ok. So the nurse was happy this time i will get to do my full 8 and 15 day gem without doing the cbc blood count weekly for those.0
