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Hello to the Group
Hi Everyone,
I'm not 100% sure how to post in this forum so hoping this winds up in the right spot! (ironically I'm an IT professional)😉. I am 55, from Calgary, and was recently diagnosed (July) with Stage 4 high grade serous ovarian cancer and just completed my 3rd round of chemo. Taking a small break while waiting for PET and CT scans next week to see what's next (surgery or more chemo).
I feel like I've been "going through the motions" a bit since my diagnosis and start of treatment. I'm taking this little break to take more charge, find out more about treatments and managing side effects, and especially connecting with others who understand what I'm going through. I was excited to find this resource! For me, this "adventure" is going to be more a mental game than anything else. Life was especially messy before my diagnosis so this is a whole new level. I will take any and all mental health supports/suggestions available.
Looking forward to connecting.
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Hello @BennieTBear and welcome to the forum. I'm sorry to hear of your diagnosis. I too am HGS however stage 3 and diagnosed in February. My journey started with surgery (debulking, total hysterectomy & bilateral salpingo-oophorectomy) and then 6 rounds of chemo. It sounds like they started your chemo fairly quickly from diagnosis. That's always good to hear.
How are you coping through your chemo? What chemo drugs are you receiving for your infusions? Do you have any specific side effects you want to learn about from a management perspective? There is a category about side effects in this forum so that may be a good start to flow through. Regardless feel free to post any specifics. There are a lot of people in this forum who are/have experienced side effects of varying kinds so I'm betting someone will have some insights for you.
It is indeed a mental game. The Teal Sister group in the OVdialogue can be a great source of support. Additionally Ovarian Cancer Canada has some great resources available on their website. I'm not sure if you've had a look around but here's the link that outlines some of the available support areas:
Please let us know how we might best be able to support you.
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Hi @Alwayslearning thank you for connecting and sending the link.
I'm coping okay I think. There are good days and bad days. I started with the Paclitaxel/Carboplatin combination. However, the first 2 rounds I reacted to the Paclitaxel (which was rather terrifying) so they switched me to the Nab-paclitaxel for the last round. I haven't experienced many side effects other than nausea and pain. The worst is the leg pain. I'll have a look through the side effects section and see what's there. 🙂
I started chemotherapy right away because I had a ton of fluid on my right lung (pleural effusion) that kept recurring and I was having to go to the hospital for a thoracentesis every 3 to 4 days. The chemotherapy has slowed that down and it's been over a month since the last one now. I was actually diagnosed because I developed a really horrible cough and ended up going to urgent care because I thought I had pneumonia. They took a chest xray and then sent me to emergency to have the fluid drained. The hospital did a CT scan and here we are.
I'm curious if anyone else has had experience with fluid on their lung and if it went away after surgery/chemo.
I will have a look at the connecting link. My family and friends have been amazing and supportive, but they don't understand what I'm going through so want to connect with people who are in the same boat. I did sign up for the 1 on 1 Peer Support through Wellspring so looking forward to that.
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Hi @BennieTBear sorry to hear you have nausea. I can relate. I took Ginger Gravol a lot and ginger candies. They helped me quite a bit for what it's worth. Can you describe the leg pain? Perhaps its neuropathy. I know that's a side effect many have experienced.
I do find it interesting how everyone gets to their diagnosis. Every story seems to be so different and it seems, a complete surprise to so many of us. Hopefully someone in this forum can share any experience they had with fluid on their lungs. I hope that continues to diminish for you.
I'm thrilled you have such a good support system however you are correct, no one but you can really understand your experience and all the emotions surrounding it. I'm glad you signed up for the 1:1 Peer Support. It sounds like a great resource.
At 1pm EST today, there should be folks online for Teal Thursday. The topics for the online chat are set by whomever joins for the day. Our amazing moderator @Strongwoman often leads the charge. If you are free and interested, it's another space for connecting with other Teal Sisters. It's under the Encouragement & Support category on the right side of this page. You should see a thread for Teal Thursday.
Keep us posted on how your scans go. Fingers crossed for positive momentum.
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Hi again @BennieTBear …I was just looking around the site and found this one thread on leg pain. Not sure if it is similar to what you are experiencing however thought I'd share. There could be more leg pain threads as previously mentioned under the "Side Effects" category.
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Hi @BennieTBear I just wanted to check in and see how you are doing?
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I am doing well. I had a CT & PET scan a couple of weeks ago and I met with my oncologist last week for the results. Looks like I responded well to the chemo, so I'm going for debulking surgery which is happing this coming Monday (the 7th). I'm a little overwhelmed and pretty nervous about the surgery. But more nervous about the additional rounds of chemo (3 to 6) that will be coming soon after. My last chemo treatment was September 4th and I'm feeling really good right now, so there is no part of me that wants to go through that again. I will… but I REALLY don't want to.
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Hi @BennieTBear . I'm so happy for you that you responded well to the chemo. No doubt you are overwhelmed and nervous about the surgery. That's completely natural. Take deep breaths. Also, don't hesitate to discuss any anxiety or nervousness with your medical team. They have options for helping to address those feelings. Also perhaps write down any questions you have that may be leading to your nervousness and ask your medical team. I was always asking questions which for me, helped, as it took away some of the unknown that led to some of my nervousness.
I can completely understand how overwhelming it all is. Try to focus on the surgery for now. Heal from that and then focus on the chemo. Also pat yourself on the back for the chemo infusions you have completed. They suck. I know. However, you got through two and should give yourself credit for that.
I'm sending you lots of positive thoughts for your surgery. You've got this. Please let us know how you are doing when you are up to it post surgery.
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@BennieTBear Good Morning. I thought I would check in to see how you are healing from your debulking surgery and how it went. Hopefully you are on an upswing this week with it. Take your time and don't forget to walk when you can. Drop us a line and update us when you are feeling up to it.
Take care
Strongwoman
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I saw this, and thought I would share it. Since retiring, this is something I have worked on daily. Slowing down from a busy pace was difficult. Living every day for what it is and staying in the moment was too. These are learned behaviours from past habits that were not necessarily good for myself. Now, finding the joy and beauty in a day or a person is what I strive for. If we slow down, we can all find something to bring or show us joy. 💗
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