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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@jmbarrhaven Those are wonderful things to look forward to. I know I was excited when I could do some things in the garden again. I have to chunk it down over a few days now and either kneel or sit on my bum to do it but that is ok! I will take it. I love getting my hands in the earth. I feel like it grounds me.
I have not mowed the lawn yet. I find mopping and vacuuming tough enough on my abdomen but would love to do it. That is another thing I have always loved doing. Attending events and/or spending time with family and friends is great. I had to learn to spread it out. Like 2-3 outings a week and then the rest down time. I get so tired if I try to pack too much in. It is so difficult though. It feels like we have been grounded forever and finally we get to come out and do things.
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@babs272 Nice that you could join us today! I feel sad that you aren't up to Thanksgiving this year. Is there a way that someone could help you make those dishes to make it easier on you? Perhaps have a grandchild (if old enough) come over and have like a teaching session with less work for you?
What kind of pie are you thinking of making?
I am sorry to hear about your blood pressure issues. What are the docs saying about it? Are you on a couple of meds for it or one only? Does resting help or it doesn't matter what you do, it remains high?0 -
To all out there, have a wonderful weekend whatever your plans are. I am off to clean a fridge out so we can bring it inside. It is currently in the garage. Our big fridge (which is fridge only) stopped cooling this past week. We had a repair person look at it and because it is in an enclosed casing, they can't fix it. They said the people that do the price starts at $1,200. The fridge cost a bit more than that and is only 6 yrs old. Since we are probably moving it doesn't make sense to buy a new one when most places come with appliances. It is sad to me how major appliances don't last anymore and that one has to replace them every 5-10 yrs.
I will check in periodically if anyone joins later.
Take care ladies.0 -
I have be,en on BP meds for a few years and taking a waterpill when needed. Something is not right .I was to start round 7 today and just could not get BP down.
The apple pie will be easy to make, since I canned my apples from last tear for pie filling. So juicy and better than store bought. I just need to make the home made crust for the deep dish pie. The candied yams, I can make in 2 days
When BP is over 150, they will not do the chemo. I was upto 170 yesterday. Highest I have be'en. Just need to get it down.
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@Strongwoman. I just want say that not all of us live in Ontario, so weather related comments can be a bit confusing, esp. for us west coasters. Ours has been a mix of sun and rain recently. Luckily, enough to bring our local ( Gabriola Island ) fire risk down to moderate.
I have had a headache for days. My migraine pills don’t help. My husband pointed out that I had not had any clonazepam for four days, so I took a half a pill, drank a lot of coffee, and it has receded. I am crossing my fingers that withdrawal was the problem because tomorrow I have to get up really early to get the ferry and go to the hospital for a CT scan. Which will perhaps tell mon onc whether I need more chemo.I just started the new antidepressant last night. I am so hopeful that it will improve my mood, and my pain levels. The blurb about it on- line says it reduces pain by 30%. And of course, depression makes pain worse anyway. I think though, it might be a chicken and the egg issue.My friend is doing Thanksgiving at her place on Sunday. We are bringing the yam dish. As long as my headache has gone. Then we are invited by our neighbours for dinner on Monday. I must be careful not to overdo it. I am usually so thrilled to be with my friends that I stay too long and it takes days to recover.I don’t know why, but lately I have been planning a musical evening. We used to have them regularly in our living room. We would invite our singer/ musician friends and have an evening of many different genres and styles of music. All acoustic. Yesterday I made a list of invitees and came up with 20 people, which included some spouses who like to come and just listen. I am not sure if I would be able to do this as it involves making a date far enough ahead that invitees could plan to be there, but this is tricky for me, not knowing if I will be up to it. Has anyone else done something similar?Anyway, Happy Thanksgiving. One of the things I am grateful for is this forum and the info and support I derive from all of you. : )0 -
That sounds like fun! We use to do thebig dinners at Thanksgiving since I was very young. Then I did it for the family until last year. i passed it down to my oldest Daughter. The other daughter does not have the room.
On the West Coast here, the weather may be still sunny for Monday.
Good news, my apple pie is in the oven and then to the freezer for Monday.
Yam dish to start on Sat. I thinkI can make it. Right now, my back is aching real bad. They say its arthritis. Joys of getting older and cancer treatments on top of it all.
I understand the feeling we go thru. Will I have the energy today or tomorrow. I get so warn out from the simplists task. I try not plan too far in advance. I just say, depends how I feel.
Just take it all day by day. One step at a time.At 69 I am slowing down.LOL But, still faster than my husband. LOL
Have a great Thanksgiving all across Canada!1 -
Sorry I’m getting here so late! I’m new and forgot about Teal Thursday. Wishing you all a Happy Thanksgiving whatever your plans may be.0
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Thank you. 🤗0
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@JoanEG Happy Thanksgiving to you as well. Glad you were able to join on Thursday. I know it wasn't at the exact time but that is okay. I have gone on later myself if I couldn't make it to read how everyone is.
I truly wish you get some assistance soon regarding drug coverage and that you have less symptoms soon too.
Take care1 -
@GloHo Checking in to see how you are feeling post-treatment week. Do you have any plans this weekend?
Take care and hope treatment wasn't too hard on you this past week
Take care0 -
@Strongwoman happy Thanksgiving to you and your family. Today has been a good day ( no nausea) and I am thankful for each and every day. 🥰0
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@Strongwoman
Well, you never cease to amaze me. Thank you for checking in on me. I have been pensive and considering my options. So, in addition to treatment, a lot of quiet, reflective time last week. My CT scan showed progression - within "stable" range - but when I had my bloodwork done last week, my CA125 had risen slightly. Spoke to oncologist about next steps if it is true progression and she indicated that there are standard-of-care treatments available (weekly paclitaxel, gemcitabine, topotecan). She also indicated that I should start looking at what's available in clinical trials if I am interested in that route again. I have just started researching clinical trials...there may be one or two potential trials, but I'll have to speak to my oncologist about them. I would also have to go to Toronto for treatment...okay, as we can spend time at my son's and visit old friends - I guess travel back and forth depending on the schedule and side effects. A lot of unknowns in respect to logistics, but nothing that can't be worked out. Most trials require a month clear of prior treatment...so that takes me to the beginning of December...just thinking about the weather and getting around TO throughout the winter...yuck! Not sure if I'll be in a position to take a holiday from treatment for any length of time. Lots of stuff to be discussed and worked out. As you can see...my mind is whirling! I am just rising above the fog that has enveloped me for the last week. I was hoping immunotherapy would provide me with a little more time...
I have one more treatment cycle before my next CT at the end of the month and then we'll see what's up.
I cooked a traditional Thanksgiving dinner and enjoyed it with my husband, my son and his girlfriend (and puppy, of course!). My other son stayed in Toronto to do his Thanksgiving feast with the in-laws. I miss those get-togethers, but there are so many people that attend, I don't want to risk catching something.
Hope you had a great trip to the Sault. Sounds like a much needed respite.
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GOOD AFTERNOON LADIES! How was the weekend for everyone? Did anyone participate in some family events over the weekend? If not, how did you spend your weekend.
Hubby and I went to Sault Ste. Marie for the weekend. Long drive from where we live 7 1/2 hrs but it was worth it. I have enclosed some pics below of the area. The ones I am showing is the bridge to St. Joseph Island and the one picture I am showing reminds me of a Group of Seven painting. This was pointed out to me by a fellow friend at my Palliative Day Group yesterday. In fact on the way up there is signs saying that the area is where the Group of Seven painted many photos. I found that very interesting. On the way home we came through an area called Blind River. Along the river, I sighted many bald eagles. According to my brother-in-law who is an avid fisher it is ripe with salmon etc and he calls it "Eagle Alley". I was awed by it because we don't see many down my area of Ontario. We saw no other wildlife to speak of but came through a few areas that stated "moose crossing". Impressive as they are, I would like to see them from afar and not near the road.
From checking in with a few of you over the past week, I feel that some are in a stage of flux. I also feel that there are some real raw emotions that some are dealing with. It is all good and part of the healing and accepting part of the journey. It is okay to not be okay. As we process information we are given, it takes each and everyone of us time to process it and what we feel we need to do with that information. There is no right and no wrong as to how we each do this. As long as we don't get 'stuck' in a stage, it is okay. If you feel you need more guidance or need to vent there is always this forum and if not, you can always private message me if you prefer. I have some resources I can share with you all. The main thing to remember is that you are not alone.
For those of you who are in a 'good' stage of your journey, feel free to share that as well. If you are doing something fun in the future and want to share, that is great. Sometimes those posts are great for our souls and can pick one up if one is having a bad day. We need to celebrate the good as well as recognize those that are not in that phase. It is also wonderful to hear from the ladies that are NED or get a break from treatment. I like living vicariously through those that are and remember what that was like. An escape of what is even for a few minutes.
I love hearing funny stories and am enjoying @Hooodith poems. Anything you want to share? The floor is yours ladies......let's find out how the past week has been for you!3 -
Hello everyone, I hope all had a good weekend. I saw a lot of my friends for Thanksgiving, and it was my birthday as well. I overdid it as usual, and just spent the last two days recovering, very tired. But on Tuesday I got good news from the dr at our little satellite clinic in Nanaimo. The CT scan I had on Friday showed NED! Now I wait to hear from mon onc this coming Monday about whether I should continue with the chemo. I sure hope he says I can stop. Also, a friend told me about the side effects of a drug I have taken for years, that can cause urinary problems, that I have also had for years. So I stopped taking the drug and it seems to be making a difference. Fingers crossing it will be the answer and my quality of life will improve. The rain has stopped here for a few days, and I am enjoying the sunshine. Best wishes everyone.1
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@Strongwoman Thanks for the lovely pics. So glad you had such a great trip, and thanks for the encouragement to share, whatever that looks like.1
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@Hooodith That is wonderful news! Happy Belated Birthday as well. It is hard to not get fatigued esp when one is having a good time and enjoying the company of family and friends. I will keep my fingers crossed that you will be able to take a break from chemo. I am also happy to hear that you may have found the solution to your urinary issues. It is interesting how pieces get put together and we figure something out. I am thankful that your friend mentioned that to you.
Glad the rain has stopped. The sunshine, full of warmth and goodness. Enjoy it for however long it lasts.
Thank you for your update!1 -
Hello everyone. Just touching base and LEARNING, LEARNING, LEARNING. My journey is just beginning and I so appreciate all of your comments. @Strongwoman thank you for all the useful information you have provided. Also your pictures are gorgeous!
@Hooodith A big HOWDY NEIGHBOUR! I live in Duncan,
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@JoanEG Welcome, welcome, welcome. Are you having sunshine currently where you live as well?0
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@Strongwoman it is very foggy here right now but the sun is poking through and I expect the rest of the day to be warm and sunny.
I just got back from a lovely walk with my dogs. I really need to get something done in my house today. I have to make the most of the days I'm not fighting the nausea. I will pop in and out between chores. 0 -
@JoanEG Sounds wonderful. It is exactly what I am doing currently as well. I am getting soup on from stock I made this morning, doing bedding for when my parents come tomorrow and am going to make sushi for the first time with my eldest son. I have to keep going or I will fall asleep. There will be time enough for that later. Currently I am all about doing, doing, doing.0
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@Strongwoman so far I have put fresh linen on my bed, thoroughly cleaned my main bathroom, dusted everything (ugh I hate dust), washed the linens that came off my bed and hung them on the clothesline. Time for a break! I still need to vacuum and wash the floors in the bathroom and kitchen.0
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@JoanEG As they say to me "Don't do too much". LOL I pretty much do too much daily. Do whatever makes you feel good. If you need to rest tomorrow, so be it. You have accomplished a lot today.
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Hello everyone. Just arrived in Lisbon, Portugal today. Tired but oh what beautiful weather! Heading out on a Tuk-Tuk with our guide/driver tomorrow. Youngest daughter, her husband and our youngest almost 3 year old granddaughter are with usHad a great Thanksgiving but had some terrible news on the Friday. The Gem did not work at all. New 5 x 5 cm tumour, significant progression and Mets to my bladder. Start on (daily for five days and then two weeks off) of Topecan on the 23rd when I am back. This is the last single agent on my list. Best I can hope for is to keep it stable. We are exploring brilliant ideas at Princess Margaret. Even though I am ineligible for trials, who knows there may be something.As I said to my family Thanksgiving weekend. I am not going to win this game but I am going to try and stay in it as long as I can.Allowed myself 24 hours to cry and be pissed. Anymore than that and you miss the good stuff happening in life. Onward we go! 💪Have a great weekend1
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@JoanEG I am on Gabriola. The Nanaimo clinic just does chemo, for radiation we have to go to Victoria. I had radiation in 2017 when I had breast cancer and spent weekdays there for three weeks. Do you have somebody to go with you to your first appt? My oncologist is Dr Atwell. I have only ever spoken to him via telehealth or over the phone. I will think of you on the 18th. Let me know if you have questions. I don’t know how to do personal/private messages on here though. I am quite technically challenged.1
