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).
Let's get started! Come and introduce yourself
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@flory
Hi. I may as well chime in too 😁. All of the suggestions are right on the money! For me, I did not plan anything for the week following treatment. That way, there was no pressure or stress of not feeling like doing something or having to cancel. It was my time to focus on me and work through my side effects. Sleep and rest are your friends…listen to your body. I also found that my stomach would get upset and I didn’t feel like eating anything. Me, being me, tried to wait it out for the first two cycles and it lasted for a couple of days. Then I decided to try the anti-nausea meds they provided as soon as I started to get that feeling and they worked within half an hour. The upset tummy was gone and I was able to eat. I only had to take one (sometimes two) tablet each cycle. Your side effects are unique to you. You will figure out the rhythm. I found documenting my side effects helped both as a reporting tool for my oncologist as well as a reminder of what and when to expect things in the following cycle.
Hope your chemo goes well today. Keep us posted on how you’re feeling and reach out if you have any more questions.1 -
Hi new to this site. My name is Deborah and found this resource in the Zejula drug pamphlet at the end of my treatment journey (so far). Wish I had known about it at the beginning after reading about alot of the issues I had struggled with.
Im happy to have this resource now and to have the support moving forward.1 -
Hi Deborah,
Welcome to the group and congrats on being NED!
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@Alexson Hello and welcome to the group.
I am thankful you found us and saddened you did not have this group to help you through the beginning of your journey. Sounds like you had some struggles. Anything you want to share so perhaps ladies can learn from? Where are you at in your journey currently? How are you doing emotionally/mentally?
Be sure to check out our Teal Thursday online chat. It is at 1pm ET. Feel free to follow along or join in. Also don't forget to sign up for the National Symposium and perhaps learn something new or find a new way to assist you in your journey.
Is there anything specific currently that you want to chat about?
Let us know and we will help you the best we can. Again, thankful you found us and have reached out.
Take care of you.
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Thanks @JoanEG. How are things going with your journey?0
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@Strongwoman I am waiting for a call to start my chemo. I had a rough day today. I was very nauseous and then spent the afternoon vomiting. Ugh. I’m feeling a bit better tonight so hoping for a better day tomorrow.0
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Aww @JoanEG I am sorry that you are experiencing this. It is very difficult when we vomit. I would stick to liquids for a couple of days....broth/cup of soup, jello, Gatorade ( one is fine), Popsicles, ensure etc Then introduce some semi-solids If you can't tolerate semi solid then I would stick to the liquids. I sure hope this subsides and you get that phone call soon. You can always call next week if you haven't heard anything and see how long the wait may be.
Again, rest and crossing my fingers that it calms down and you feel better soon.
Take care of you0 -
@Strongwoman thank you. I honestly knew very little about ovarian cancer before my diagnosis. I never would have thought nausea and vomiting would be part of it. I’m learning to make the most of the days I feel good and just take it easy when I don’t. I appreciate your guidance.0
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Hello beautiful friends!
I’m very happy to have found this group! I was diagnosed in October, and surgery has been postponed to December 22, 2023, as they’ve discovered a blood clot in my right lung. 🫁
Every day brings new challenges, and I’ve felt so alone. I live in a beach town on Lake Huron, am a retired Principal, and am feeling overwhelmed with everything that goes with a cancer diagnosis!
I would love to hear any advice or suggestions for post surgery healing.
looking forward to connecting.
Sandi 😘
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@Strongwoman let me know approximately what time you are on in the morning so I can ff!0
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Hello @Sandi6 welcome to the group. I am sorry that you have been diagnosed with ovarian cancer, but glad you found our group. Everyone is supportive and kind. We are all in the same boat and need to look out for one another as like you mentioned, a new cancer diagnosis is overwhelming.
You will notice that any question/concern you may have will usually be answered swiftly by a member or peer support volunteer.
Sorry your surgery got delayed but luckily they found the blood clot and hopefully they are treating it accordingly. I could give you lots of advice for the post op period you can message me directly if you like. Do you know if your surgery will be done robotically/laparoscopically ,or a large incision?
Some of us are more recently diagnosed like yourself, and others are more experienced? That doesn't sound right! But I'm sure you get what I mean. I myself was diagnosed with stage 3B clear cell ovarian cancer in June, had surgery in July, started chemo a week after and just finished my last chemo November 15th. Do you know what type of ovarian cancer you have? Feel free to disregard my question if it makes you feel uncomfortable.
Lastly, do you have the support of friends and family? I find that to be vital so far in my journey2 -
@JoanEG It starts at 6am ET0
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@Sandi6 Hello and welcome to our group. Thankful you found us and have reached out.
Your exact words of "am feeling overwhelmed" is exactly where many of us have sat in the beginning and sometimes even later down the road. The information can feel like it is coming in fast and furiously. The appts for this or that and talking to family and friends. We can wonder "the whys--why us, why now, why this" and the physical, mental and emotional feelings that come with it all. Overwhelmed is at times an understatement.
What I can tell you is this, you are here, with us, your fellow Teal Sisters. We will be with you, through it all if you want us to be.
I imagine you may have been put on a blood thinner of some sort to deal with the blood clot and may soon be coming off of it of surgery is next week for you. I have my fingers crossed that this is the case and that you will be able to have the surgery as planned.
Surgery can look differently for all of us depending on what they found, location etc.
I went into surgery only knowing for sure that they would definitely open me up from pubic bone to the belly button. It was in the air as to whether they would open me to my sternum (chest bone) and whether I would have an ostomy when I awoke from surgery. It is scary or I was as I recall. The not knowing played with my mental well being as I tried to think of all of the "what if" scenarios of what it may look like. I can tell you that it was tough post surgery. I persevered and here I am now being able to assist you along your journey.
As far as tips post surgery, here are some that you may find useful:
Have someone stay with you
Get a raised toilet seat
Get a shower chair
Have Ensure and gingerale on hand
Freezies or popsicles too
Nightgowns instead of PJ's (I couldn't handle anything around my abdomen for awhile post surgery)
Ovol ginger chew tablets (assisted with the gas post surgery)
Have prepared meals for the family (if you do have that)
Walk every day even when you are sore and tired. I walked or more like shuffled assisted with lots of breaks due to pain ot requiring rest a few times a day and short distance. I gradually increased the length as I improved and started walking unassisted as my strength and stamina improved.
Nap
I required a little step stool to get into bed as my bed sits high off the ground
Take your meds as prescribed and talk to your team if something doesn't seem right
I am sure there may be more to say.
On our home page there is a link to a free pdf or hard copy of By Your Side which basically guides you through some of this and dealing with ovarian cancer.
On every Thurs there is a Teal Tea which is an online group (not zoom) where anyone can ask questions, converse, etc about ovarian cancer an living with it and more importantly a community of like minded people
This forum is a safe space and is yours as much as it someone else's or mine. We help each other through it all.
Feel free to reach out again. If you do know what type of Ovarian Cancer you have, it will help with assisting you through the process.
Again, sorry you are going through this but happy to have you join us here. Hope you find this site useful and supportive along your journey.
Take care and reach out anytime!
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@Sandi6
Welcome. Sorry to hear your surgery was postponed due to a blood clot. Hoping that the treatment for the blood clot has worked and your surgery will go as scheduled next week. I have high-grade serous that was discovered as a result of tests conducted following my hysterectomy over 4.5 years ago. I was diagnosed with stage 2c. I remember being angry, sad and confused when I was diagnosed. So glad you found this group…you can share whatever you are feeling on this site and know that we will all understand and support you. Ask all the questions that you have, too. There is sure to be someone who can provide advice.I love Lake Huron and whenever we are up there I find myself in awe of the beautiful blue waters and will often just find a bench to sit and watch/feel/listen to the St Clair River. I can only imagine that the beautiful scenery there will bring you some peace and tranquility as you recoup from surgery.I, too, was in education…although the admin side. I began at the Toronto Board, ended my career there as the admin to the Director, and retired from EQAO a few years ago. Are you recently retired so dealing with the change in lifestyle that way as well?1 -
@Sandi6 Welcome. I hope your surgery goes ahead and you recover well from it. I was diagnosed almost two years ago with stage 4. I have found this group to be really helpful, supportive, and informative. We are all in this together, even though we are spread out across this huge country. I live on Gabriola Island, just off Vancouver Island, in the Salish Sea. I never tire of the beauty surrounding us here. I have only been to Ontario a couple of times, once to Toronto and once to Ottawa, both in winter, so I didn’t see it at its best. But I have seen pictures and it looks lovely in the lake country.1
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@Hooodith Hello, we are sort of neighbours, as I live in Nanaimo. I was diagnosed in July 2018. Are you aware of the Women’s Cancer Group in Nanaimo, led by a cancer survivor? The group meets once a month at the library in North Nanaimo and every second Tuesday for coffee. Coffee alternates between QF Harewood and QF Northridge. If you are interested I will get more specific info to you. It is a lovely group of women who love to laugh.0
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@CrazyCat. Hello, sister in BC! No, I didn’t know about this group, thanks for telling me about it. ATM, travelling is difficult, but if and when I get my pain under control, I will try to attend. Yes, please give me more info’. My email address is judither@shaw.ca. Thanks a bunch! @JoanEG, would you be interested as well?0
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Hello beautiful friends!
Thank you so much for all of your responses. My ultrasound has shown that I’m clear of blood clots and am excited to have surgery on December 22! My birthday is tomorrow, so I’m looking at surgery as a combination birthday and Christmas 🎄 gift 💝4 -
I will be thinking of you and having a good outcome. 👍2
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@Sandi6 First and foremost, Happy Birthday. Hope you are enjoying your day.
Second, that is great news. Being able to have surgery as scheduled is great. Any plans between now and then? Do you feel you are as prepared as can be for both the surgery and afterwards?
Kindly let us know how we can assist you along your journey. Thanks for letting us know your positive news.
Take care of you!
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Thank you all! I’m grateful for this support and am open to any suggestions for preparing for this surgery.1
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@Sandi6 Thought I would check in to see how you are doing post surgery?0
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Hi @Sandi6 The holidays and all it entails can be very busy and you had the surgery thrown in there. Curious to know where you are at and if you have been recommended any treatment post surgery. Hoping you are doing well but would love to hear an update sometime. Thinking of you. 0
