Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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 Community Champion. 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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Let's get started! Come and introduce yourself
Comments
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Welcome @kattie666. This is a wonderful supportive site for women...I'm sorry to hear that you've had to endure a diagnosis, treatment around the pandemic and your kidney issues..I am sure your team is looking out for you..give you the right balance for your cancer and kidneys.1
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Hi @kattie666. Will you be having 6 chemo treatments, 3 weeks apart? When is your second chemo happening? It's interesting that a couple of people recently mentioned here, that they have stage 1c. That's what I had, with adenocarcinoma, and clear cell. My diagnosis was in 2016, and now I'm No Evidence of Disease! Hope your treatments go smoothly!1
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Yes it will be 6 treatments, 3 weeks apart. July 9 for next infusion. Thank you for the encouragement! 1C for me as well. So happy to hear you are disease free! Gives us so much hope!1
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Welcome to the group @kattie666. So sorry to hear of your diagnosis and your complicating factors. But on a positive note, your cancer has been caught early and I'm sure your medical team will ensure the appropriate checks and balances in your treatment plan. Never a good time though is it. Covid just makes us all feel that much more alone..so use this group to stay connected and for the support you need. We're all here for each other.2
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Hello @kattie666 - COVID has changed everything we do in the world - but we will find a way to muddle through and get to the other side. The good thing right now is self-isolation practices are already in effect. I tried to stay home, unless absolutely necessary, when I was having chemo and keep away from the possibility of getting a cold or some sort of infection. Of course, we all have masks and gloves in our purses now, don't we? Hang in there, before you know it, you'll be ringing the bell to celebrate your last treatment!
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Hello @kastoyles- Thank you for the encouragement. Tears are sure coming easy these days. I am trying to control them to a minimum. I have been through the wringer before....brain aneurysms clipped in 2012- a nasty side affect of the Polycystic Kidney disease (my dad died at the age of 28 from one).... I keep telling myself that I didn't survive that just to let this take me..... My biggest tears come when I think about my husband of 38 years and what this is doing to him..... not being able to be in the hospital with me is pretty hard on him. We are both trying to navigate chemo and am finding good info on what to expect on this site. Thank you all for any info or tips!1
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Sending you much support and hugs across the internet @kattie666 - hope you are doing as well as can be today.
Thank you for sharing your challenges and we hope you will find much support around this site.
Do you already have a copy of By Your Side - the OCC resource guide?1 -
@Flowergirl- I have ordered a copy of By Your Side. It will be sent as soon as possible,,,..delayed due to this pesky virus going around.... Good day today. Happy Canada Day! My VERY supportive daughter will be spending the day with her crew (4 of my 6 awesome grandkids!) That opportunity will close next week as she will be going back to work and I will be getting my second chemo treatment. Hanging in!1
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@kattie666 - let the tears flow! There are better days ahead! My husband was amazing - he still is - and was the best caregiver I could ever ask for. I didn't have to do anything except rest and get well. He cooked, cleaned, did the wash, even bought me tummy control panties (twice) and pads after my hysterectomy! Sounds like your husband is as loving as mine. Yes, it will be hard on him too but you have each other for support. The COVID situation sucks - but you'll get through it with flying colours! Hang tough Teal Sister!
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Hi everyone! I’m 42 and have stage 3C high grade serous ovarian cancer. I had surgery 3 weeks ago to remove ovaries, uterus, tubes and a tumour on my bowel. My first cycle of chemotherapy is on July 9. I’m trying to be brave but I’m pretty scared. My husband and five year old son are being super supportive. We don’t have any extended family in Canada and are relying on a network of friends for help. They have all come through in a big way but it’s difficult with no other family in town. I’m happy to find this group and hope to get to know you better.0
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Welcome @nadiaC. I am so sorry that you have been diagnosed with ovarian cancer. It is a difficult and I'm glad you have supportive family and friends...I'm happy that you have found this wonderful support group. We've all gone through some form of ovarian cancer and some or all of the different treatments. This is a safe, non judgemental, group of women that can understand what your going through. It is scary but utilize your oncology team. They can answer lots of the medical stuff..we can answer some of the other stuff. My team were wonderful and the treatment room nurses were the best...the difficult part might be restrictions in your cancer centre because of the COVID thing for a support person coming with you to your treatments. Just check with the centre. There is some wonderful drugs to combat the chemo side effects and let your team know how your feeling, they can help. There may also be local ovarian cancer support group in your area that you can connect with. I am sending you good strong positivity your way for your first treatment day 9 July. You will get through this. As I like to say..you will kick it..welcome!!1
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Hi @kattie666 Thanks for your message. I’m glad that chemo cycle 1 went well for you. That’s awesome! I’ll think of you on July 9
My surgery was June 10 and recovery seems to be going well. I don’t have anything to compare it to though. Still some pain and discomfort and I zonk out every afternoon for a nap. But otherwise okay. 1 -
Hi @Bluebird. Thanks for the welcome and excellent advice. I’m really glad I found this group and that I introduced myself today. It’s been a whirlwind month and I’m still coming to terms with my diagnosis. Your tip about making full use of the oncology team is helpful. I’ll let them know how the chemo affects me. I can have a support person for the first treatment but not after that. I’ve heard that the treatment room nurses are nice. The nurses on my medical team have certainly been excellent. I heap questions on them and they have endless patience. Thanks so much for the positivity and support for July 9.
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Hello. I was diagnosed with stage 3 clear cell ovarian cancer in May. I will be going for my 3rd cycle of chemo this coming week. I look forward to receiving support and information.0
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Welcome @cbot. I'm sorry that you have an ovarian cancer diagnosis..how have your chemo treatments been for you? I'm glad you have found us...it is a wonderful site to ask questions and discuss. Of course use your oncology team for the medical questions but we all have gone through some kind of treatment so we understand and can support you. You can also order the book..By Your Side from Ovarian Cancer Canada..sorry I dont have the link..its a free book with lots of info...and depending on where you live..there might be a local support group for ovarian cancer...1
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Welcome @cbot @nadiaC and @kattie666 . My name is Shellyza, and I was diagnosed with 1C clear cell ovarian cancer in September 2018 . I am now 32, and this past February , I marked one year in remission. I also work as an oncology specialized pharmacist at the hospital where I was treated. I have found that my perspectives have changed quite a bit after my cancer diagnosis, treatment and recovery - sending you sincere best wishes.3
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@cbot Welcome to the group you will find a lot of support and useful information here. I was diagnosed with endometrioid ovarian cancer in November 2011. I underwent several surgeries as well as chemotherapy. I hope your chemotherapy is going well, the worst side effects for me were fatigue, nausea and low blood counts. Before I stared my first chemo cycle, I attended an orientation session for new patients at my cancer centre.
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Welcome @cbot and @nadiaC ! Like @ssajwani , I was diagnosed with Stage 1C Clear Cell - in February 2016. I had six rounds of chemo. I'm now four years NED. Other than fatigue, some nausea, minor neuropathy I made it through with flying colours. The side effects seemed to get worse with each treatment, but the drugs helped tremendously. Listen to your body - if you need rest, then get rest! This isn't the time to be a hero! OV Dialogue is the meeting place for your Teal Sisters - come here to learn, support, vent or be uplifted. We're here for you.0
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@nadiaC....I am so glad you have found this group. I too am a survivor of 3C high grade serous... February 2017. And gal, I'm still here to tell the tale. Like you, I was new to the community I live in so my darling, stoic, ever cheerful husband and I were pretty well on our own. It sure did bring us even closer together. My surgery went well. Other than a blip at the start of my chemo (turned out I am allergic to Paclitaxel and had to have a different drug combined with the Carboplatin) I pretty well sailed through chemo. Of course no Covid at the time so Wayne was there for every treatment except for two and amazing how effective Facetime can be when you need that 'high touch' connection. But rest assured the staff in the chemo room, no matter which cancer center, are simply amazing. Beyond administering the medication, their priority is to make the experience as easy for you as is possible. So make sure you communicate with them...they need to know if you're experiencing any discomfort. And they're very adept at responding and reacting to any necessary changes to make it better for you. But whatever the case, I quickly found how lucky I was to have been diagnosed when I was. Yes, later on in the journey but at a time where there have been so many advances made in treatment of our disease. In fact, I am a further beneficiary of all of that research having relapsed at the end of 2018 but having been holding my own thanks to two little pills I take, twice a day.
Is this all scary? Heck yah! But this community is here for you....use it whenever you need to. And check the Walk of Hope site. You may find a Walk in your community where you can connect with other survivors...or reach out to the OCC Regional Manager for your area. She or he may know of a local support group to connect with.1 -
Hi @Fearless! Thank you so much for reaching out and sharing your story. It gives me hope. I’m starting chemo on Thursday and am infinitely nervous. But I had a major stroke of luck. My sister was able to enter Canada today and after she quarantines for 14 days I get to give her a hug. Thank you for the tips about the cancer treatment nurses. I will use them and FaceTime and my kindle. I’m curious about the two little pills you are taking now and glad that they are helping. I will check the walk of hope site and try to find a local support group too. It makes a huge difference to connect with women who have been or are going through this.
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Hi @kastoyles and @ssajwani! Thanks for the welcome. I’m thrilled to have found this group of Teal Sisters. My first treatment on Thursday feels more manageable already after hearing from several people in this group.0
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Hi @jnrichmond and @kattie666, welcome to OVdialogue. Sounds like you two have been through - and are going through - a lot....you're both 'keeping life adventurous' with twists and turns around every corner to say the least :-).
I, too, am 61 years old @jnrichmond and I'm just so happy for you that your medication works well for both cancers. That's a huge win! I find it strangely beautiful that you're grateful for your breast cancer. In my experience, both professionally and personally, sometimes the most difficult things in life end up being those for which we are most grateful, and from which we learn the most; often about ourselves or just about life in general. 2019 sounds like it was trying! You deserve to rest up and enjoy some hard-earned peace now for a nice long while!
@katie666 it's so lovely to see the humor with which you're approaching your diagnosis and treatment...Good for You! A good sense of humor never hurt anyone but it sure helped a lot of folks!! I hope your chemo treatments are progressing uneventfully and without too much discomfort. I'm curious as to how chemo is delivered when one has lower kidney functioning because on my last physical, when thinking of returning to work (before covid hit), my doctor told me my kidney functioning was down. This led me to wonder what that would mean if my cancer returned and I needed chemo again. Anyway, if you're comfortable sharing, please feel free and, if not, that is absolutely fine. I can certainly do some research and/or ask my oncologist next time I see her.
Best wishes to both of you for improved health and well-being. Sincerely, M.
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@nadiaC..your first treatment might be a long day..pack a treatment bag (it's what I called mine). Pack a drink or two..a few snacks..your phone, tablet or iPad...or I'm a little old school so I had a crossword and seduko. Oh and earbuds...I usually slept for the first 3 hours of my treatment because of the drugs before treatment...made me sleepy..I just asked for a warm blanket and had a great nap...you'll do good!2
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@maggiemae Hi! Yes humor is how we handle life! Thank you for your comments! As far as my Poly-cystic Kidney Disease, my creatinine level will be tested the day before each chemo to determine the prescription for the chemo drug. It clears through the kidneys so the dose is based on my current function. My kidney dr is monitoring my treatments as well because I am treated in Hamilton Ontario where all the hospitals are connected. Appointment for blood work and Dr. one day and chemo the next, every 3 weeks for 6 rounds. Round 2 is this week.
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@kattie666 - are you going to Juravinski??? That's where I had my chemo treatment.
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