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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Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Nice to be on your last chemo!! Let us know which oral med you’re going to be on.
I hope your post-op goes well and you can return to the things you have been missing.
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@melissa I will definitely be glad to be done with the iv chemo! Also thanks for all the amazing pics! It looks like you are truly having a wonderful time! 😊
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I just got home from my appointment with the chemo onc. He said I will be on an oral medication after my final round of chemo (May 8th) but I didn’t write down what it was, ugh and now I can’t remember the name. Oh well I will find out on Wednesday when I go for my chemo. It is a beautiful sunny day here and I have my sheets in the washer and I will hang them in the clothes line to dry. I can’t wait to have spring fresh smelling sheets on my bed! Tomorrow I have my post op follow up appointment and hope I will get the ok to return to my yoga class. I really miss it!
I hope everyone is enjoying a beautiful spring day. 🌺
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Thanks for posting the pics. Beautiful greenery and it looks so lush!! Can’t wait to walk in the conservation parks. Interesting how your maple dangles. Our maple definitely does not have that unique feature.
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@GloHo I have been thinking about your first question through the night and I don't think I have an answer for you. I feel it is based on our unique situations. I would say that if you had any type of bowel involvement either surgically or where tumours are located, that yes, I think the conversation should be had about eating and what to avoid etc.
As far as seeing a GI specialist right away, well, mine was a general surgeon and no, I don't think it imperative to see one right away. All of us heal in different ways and respond in different ways to treatment and surgical interventions. Sometimes, we have to "wait and see" before we can go to the next steps. I don't know if everyone would be considered "high risk" for surgery a second time as that would be individual to every single person. What I would encourage is open conversations with your team and if you feel like you have been doing or on something for awhile, know of any treatments/trials; discuss them and see what happens. The worst thing that can happen is that they will say "no". If they do, ask why and why you wouldn't be a candidate.
The intervention I chose not to go with was called a Nephrostomy. In my case they were recommending a double nephrostomy. If you don't know what it is, I will describe it briefly here. They will go in (I believe with a radiologist), locate the kidneys, insert a tube from your back into the kidney and then the other drain end will empty into a bag that is attached either around your waist or leg. This tube would be covered and has to be monitored and changed at certain points in time. One has to learn how to care for this and empty the bags etc, One also has to learn how to live with it. In my case, it would have meant 2 tubes emerging from my back and then learning how to sit, sleep, etc with it. It is something I chose not to do due to what quality of life I wanted and I have not regretted my choice. We have been monitoring my bloodwork closely monthly and my creatinine levels have been good plus one can live with one kidney. This is what I was basically doing until seeing that now my left one is starting to show wear. In my case, I am not sure if this is something that would be re-considered at this time but I am ok with it not being looked at. I had been told earlier that if I did decide that I wanted to proceed that it could be all set up in a matter of days so again, my worries about it diminished.
As for either bowel or urinary stent option, I think we discussed this initially regarding the kidneys and ureters. Due to the material they are made out of, if I had a stent put in, the tumour would end up pressing on the stent and it would cause the same result so I would have gone through that procedure for the same outcome. As for a bowel stent, I think due to my sigmoid colon anastamose with the initial surgery, that this was not a possibility. The only possibility that I knew was a long shot but explored anyways was to see if they would be able to go in safely to see if they could do an ostomy of some sort but as we now know, the answer for me, is no.
The biggest take away from this all is as you have stated and we continue to discuss on this forum. Quality vs quantity and what that means for you as a person and individual. That is something that is yours and yours alone. For me, quality of life and how my boys and husband see me until it is my time, is very important to me. I want to be able to be out and about doing things I love and being with people for as long as I can until this disease rips that decision away from me. I found that book and podcast series, "Hope for the Best and Plan for the Rest" very reassuring to how I chose to live my journey. There is no right and there is no wrong. There is ONLY what is right for YOU! I wish each and every one of you the strength and tenacity to ensure you empower yourselves on your journeys and that you live your best life with those choices!
Take care everyone!💕
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Thank you @JoanEG for sharing a part of your journey with us and to let others know that this low residue diet is something probably many of us are on to keep things at bay. That we do it to not have situations worsen for us. Missing foods is one thing, being too ill because one ate them and in pain is something totally different. Let's keep empowering our journeys! 😀💪
OUR COLLABORATIVE BOOK
I, personally, would love to see this come to fruition. I have checked with OCC and there has NEVER been a collaborative book done before on Ovarian Cancer.
So it was first initiated by @Hooodith that we each do a chapter for a book on our own journey. It was met with a wonderful response.
So, please let it be known who would like to do this, seriously and we will workshop through this together to have it come to fruition.
It does not matter the type of cancer you have or where you are at in your journey. I feel that in order for this book to be complete, it will be a compilation of many journeys and experiences. It won't be full of the stats and generalities that we find on the internet but instead be full of life experiences to give a better whole picture to many out there.
So I encourage @jennhood624 to see if Hannah would like to weigh in with her journey with Juvenile Granulosa and all the other ladies out there with both the rarer types or complications of having a more common one and what that looks like.
So, come on ladies.....tell me again....who is in this?!!!
Let's get brainstorming and make this a reality!
Re: Intraperitoneal ports - failed twice before chemo
@Alwayslearning Thank you for sharing your detailed journal and experience. I, too found ginger chews very helpful when I was undergoing chemo. Looks like you are resting when you should and figuring out your eating. Avoiding constipation is a key for many of us.
Looks like the ice packs are helping you and that is fantastic. Whether myth or truth, only way to find out is to try it yourself and see how it applies to you.
Take care of you and reach out to chat anytime or to update us. 💕
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I don't believe we have dogwoods here but I bet they are beautiful @JoanEG You definitely have much more out than most of us for the time of year it is. It's why it is so nice to share and see what others are seeing on a daily basis. Grass cutting is definitely in our lawns near future too.
The array of flowers and birds sounds wonderful to see and hear. Thanks for sharing. 💕
Our friends were just here that are expecting in a month's time and their first. So nice to see their excitement and joy in bringing a new life into the world. Glad we get to be part of it.