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).
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Comments
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@Sunflower it was so heartwarming to read all the responses as everyone reached out to @NovaScotiagirl with words of support and encouragement. I was especially happy to learn that you too, are in Nova Scotia and have offered support on such a personal level. I find these dialogues so incredibly important because it enables us to connect with people who are actually experiencing OV cancer and all that comes with it rather than friends and family who can only sympathize. I had debulking surgery in August 2023, chemo x6, and have one more treatment of Bevacizumab next week. I am currently NED, but I’m realistic about what to expect down the road. I truly appreciate the opportunity to support and be supported by this community of brave and loving women.❤️
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@sunflower I also live in Dartmouth!
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@NovaScotiagirl awesome! Please feel free to reach out over email anytime and we can grab a coffee or you can meet some other teal sisters too.
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Sounds like you have made some great connections in Nova Scotia and hope it all works out. @NovaScotiagirl Thank you @Sunflower for reaching out and welcoming her into your fold. Sounds like a great group you have out there and support system. 💖
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@Strongwoman thank you I believe I have.
I randomly met a lovely 27 yr old today who has been diagnosed with Ovarian Cancer. I have given her the information for this group, Teal sisters groups and information to find the books available through OCC to help her understand and advocate for herself on this journey. I have given her my contact also to reach out if she needs to just talk. I hope she joins our group.
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Sounds wonderful and hopefully she will join your group. Sounds like a lovely one and one that you can get together often. @NovaScotiagirl
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Thank you for sharing you wisdom, encouragement and hope. This forum is so helpful especially when we face those really difficult times. At my 4 months post-chemo follow-up, the CA125 markers had gone up (an accurate marker for me), and then I started experiencing some abdominal discomfort, so my oncologist rushed through a CT scan and it did indeed show that the cancer was growing on the peritoneum. Since then my CA125 markers have climbed high, very quickly. I anticipated a recurrence, but not so soon. My prognosis is poor, and that was shocking news, but my doctor did offer chemo and I decided to do it (not an instant decision). This time it will be Carboplatin (again) and Caelyx; I'm anxious about the latter because it's the first time for me and I've heard it's awful. My doctor arranged for an IV port in the chest so I can continue swimming - nice that she acknowledged how important that is - but if I get the palmar/plantar peeling skin, then I can't swim anyway, so I'm really hoping I don't get that side effect. My 2nd line of chemo included Docetaxil and that resulted in terrible mouth infections and a hospital stay, so I guess I do look at past experience and anticipate the worst. I also get 5 days of Grastophil injections post-chemo (like last time) because of neutropenia, and those contribute to the fatigue. Chemo will be 1x/month for 6 months - not sure if that schedule means it's more potent? Anyway, since this latest diagnosis, I've done a lot of advanced care planning work with my brothers' help. I've been reading Hope for the Best, Plan for the Rest and it's an excellent book. Doing that advanced planning work has made me feel good because I've accomplished a lot and it gives me and my family more peace of mind. My Christian faith is very important to me and gives me strength and comfort. I've been doing a lot of fun things in the last few months and weeks, including challenging things like travelling, because I wanted to enjoy them while I have the energy. I agree that acceptance is key, and only that can lead to positive action. I'm still nervous about tomorrow, and getting things organized at home preparing for chemo, but there's no point obsessing about it beforehand. One day at a time.
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Thank you for your kind words @Hobnob I am sorry to hear of your recurrence and climbing CA 125 levels. I am thankful that there was a treatment option for you. Deciding on whether to embark on it or not must have been difficult as you weighed the pros and cons of both doing something and not. None of it is easy or easy decisions to be made. It is very much individual to our own unique situation. I am sure you will have some hurdles to cross as you make your way through your treatment and hope you have a wonderful team that will make some of those hurdles less the best they can for you.
I am happy to hear that you both found that book and that you read it. I found it immensely helpful myself and have made plans on paper for my advanced plan so that the family does not have to think about nor worry about if what they decide is what my wishes are or not. Being able to read the last chapter which goes into what happens at the very end was something that provided a lot of comfort to me. I was finding it difficult to garner info on what does happen near the end and that they were honest about it. This book provided that and more. I, too, continue to plan and do things with family and friends and do my best to enjoy it at the time. Currently, I am journaling for family and some days it leaves my emotions fairly raw. I do my best to regroup and be done with these emotions before the family comes home from work for the day so they don't see it. Some days I find it hard to hide some of it and they do see some sadness but we can't shield them from everything. This is one of the last pieces I have to do for them and change up who I am writing for depending on the day. Acceptance of what our prognosis is can be difficult to accept and process. Some days are better than others regarding that for me. The journal writing and thinking of actually not being here one day can come vividly to the mind and other days, I can write telling stories I want to share with them. All depends on the day and me. Thank you for sharing what you are doing and how some of this has helped you. In sharing, we connect and find ways to accept and carry on day to day all the while knowing that time is precious and we put a value on it like some may not. Please feel free to continue to share your journey and what you are doing to prepare. You never know who it may help to get through some tough news and carry on the best they can. 💕
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That's wonderful that you have found some emotional release through journalling and can tell stories for your family. It is very hard, so anything we can do to help ourselves and our loved ones is important. It sounds like you are not on treatment and have no treatment options left. I've journalled occasionally, when I feel like it, and have resumed writing a simple gratitude list each night. When I got news of my recurrence, I finally felt like I had to face the elephant in the room and be willing to talk openly about advanced care planning. I was always willing to talk about the cancer, but I had avoided talking about end of life until now. It still feels so awkward for me and everyone else. Take care.
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@Strongwoman I finally heard today from the satellite clinic, not the onc. The nurse offered me a chemo infusion tomorrow. When I told her about not hearing from anybody for three weeks she was very apologetic, but it was obviously not her fault but the fault of the people at the main clinic in Victoria. I told her I had phoned but not had a call back- twice. I turned down the chemo tomorrow. I had already decided it was too close to the wedding and I don’t trust my onc when he says it won't make me ill. Why should I believe anything he says? So I will s tart chemo on Sept 9th. It is just Carboplatin. Is this what standard of care means?
I still want to change my onc but I am no nearer knowing how to do this…0 -
@Hobnob You are correct when speaking about me. There are no treatment options left to me. I continue to take my Letrozole knowing it is probably doing absolutely nothing but side effects are minimal so why not. It also then allows me to get bloodwork every 3 months and a check in. Otherwise it feels like one is discarded to the side and forgotten about. I am in contact with my Palliative doctor on a fairly regular basis to help to mitigate symptoms that come up and for that I am forever grateful she is there. She is prompt when responding and usually has some trick up her sleeve to get me through the current crisis and to another day. My family does not like talking about this part of things and all of them get worried when I don't feel well. Everyone is on eggshells when I am unwell and in the back of everyone's head is "is this it". So that is hard for all as we navigate through it all. Everyone puts on a brave face but underneath they are worried and highly emotionally charged wishing they could take away the symptoms for me and make it all "normal" again. Thankful that they want to spend time with me and find ways to plan days together to continue to make our memories for as long as we can. Thankful I am mobile enough and well enough to do so too. I am open with them all and will discuss anything they want to discuss. Mostly I reassure them that everything will be okay and I have done everything I can to make sure it will be okay for them after. That Hospice will help them with their grief and be the place to be when I start to go downhill. I try not to push conversations and see what naturally comes to the surface. Preparing a book for hubby because he will have things to do that used to be my responsibilities and will need to change or contact some people. I continue to make things in my Art Therapy for my loved ones and those I want to leave a little something behind. Finishing up some Kintsugi for my niece, nephew and boys today. I will start working more on scrap booking next week. I borrowed my Mom's stuff and then a dear friend dropped off all her stuff she isn't using anymore so I can use it. People are so kind.💖 I also don't have to work around any treatment schedules, just my own body and what it decides to do on any given day. So that is a blessing and most of this work is subtle and low key which I like.
Sounds like your world has opened up lately re: conversations and advanced planning which is great. I found that book extremely helpful (as you did) as all of it were things I thought of and how we then "live with being palliative". Not "being palliative and dying" way of thinking. Palliation is a way of living and being once you know you have reached that stage. Finding out all the things you can do to empower yourself and make decisions that are empowering to you for your own end of life too are great for the mind and soul. It feels like something controllable when everything else feels so out of control. It can also open up some valuable conversations one may not normally have with family or friends. I believe I have even asked mine if there are things they want to know or discuss with me.
I wish you the best with your current trial and will await updates on how you are doing with it along the way. I will also await to see how some of your conversations or planning goes with family and friends around it all. I will be here when you need. Be that to vent, cry, laugh, be frustrated, whatever it is and however those emotions come forth along the way. You are not alone, my friend! 🤗💗💛
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@Hooodith I am thankful that you finally made a connection even though it was lengthy and had some hiccups along the way. I am sorry that the infusion may not work out the way you anticipate but respect you wanting to feel your best for the upcoming wedding. Some things can wait for treatment to begin because what they bring us like joy and memories far outweigh anything else. I know @JoanEG has given you a name to contact at a different institute, have you had the opportunity to make this connection? It may be worth the call and see if it changes anything for you when you are ready to begin treatment after the wedding. It may also be worth speaking with someone else and give you some peace of mind.
As to "why should I believe him" meaning your Onc, I can't answer that. That is your relationship with him and yours alone. I would go with what your gut is telling you and how you know you want to feel for an event that is so important to you and all the joy it can bring you that day. It wouldn't matter what the Onc said to you regarding that, you know how you want to feel and be that day and that is all that matters. Delaying until after it is over with is completely acceptable. "Is this standard of care treatment"? Meaning the carboplatin…..I believe that would be considered a standard of care treatment that they revert back to when looking at treatment options for someone. Do you know or does your Onc know if you are eligible for any trials out there? Are you open to trying any trials if there are some available to you? Knowing that also helps making decisions going forward. Good questions to ask yourself and be prepared with questions for your next appt, if you are interested. If not, then go with what is being suggested and ask what happens if you choose to do nothing which is a choice in and of itself too. Wherever you sit with it all, is the right decision for you and factoring in the traveling I know you have to do as well which can be wearing.
In the meantime, find some things that bring you joy and do them. Make some plans with friends/family and have some laughs or cries and see and do some things you would not normally do on a given day. I am hoping to convince my hubby to go and try out a French pastry place that is fairly local on Saturday for something different to do. Will be nice to go for a little drive and then nice to get some delicious food that we would never make. Something to help fill the day and create a memory for us together. Today I am off to Art Therapy at Hospice to finish up my project I have left there. I love going there. It is like walking into Michaels, picking whatever you want and working on it without paying for it and amongst people you get to know and interact with. I get a cup of tea going and get lost with my thoughts some days. A peaceful place to be to create wonderful things for my loved ones. I still have some projects to finish up at home and love that too. Hoping to go the Play with Clay with my oldest son in the coming days and working on something there with him and possibly his new friend. I have some reading I want to get back into as well and am going to start that in the coming days. I started a new knitting pattern for a blanket that is called "whirling windmills" and have just finished the centre part last night. Next are the petals and I will decide on if I will do them in the same colour or alternate colours of the "petals" before I start. Oh yeah…..spending money at the local yarn shop! FUN!! LOL Currently I have picked a mint colour. I already ripped the entire thing out once and began again. It looks so much better now. Well I have rambled on enough for you……so enjoy your day and keep in touch. Thinking of you daily! 🤗💕
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@Strongwoman Thanks so much for your response to me. I needed someone to say its OK to put off the chemo in favour of this very inportant wedding. It is going to be a family reunion too, of our first and second generation family of fifty years. Hopefully there will be a third generation soon, but I must not expect that too hard, after all, they may not want children.
I am wondering about this book you are all talking about. What is it called and where can I find it? It sounds very helpful.
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@Strongwoman I hope you enjoy all the stuff you plan to do today, and eat today. Thank you for all the great words you give all of us Teal sisters. You reall make a difference in our lives.
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@Strongwoman I loved reading about all of your handmade artistic projects. It is so special to be engaged and making gifts with so much love for special people.
I could almost taste the French patisseries. Yum.
I hope you have a wonderful, treasured weekend.💕
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@Strongwoman I love that you are doing, making, creating! You are living and making plans, instead of waiting for the end that inevitably comes for all living things. I am trying to do the same, living in the now and moving forward with my “projects”. How wonderful that you can knit! Never could get the hang of it, sewing either. I would love to see the blanket once you get it started.!
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@Hooodith Thank you and thank you for your very kind words. They touched my heart in more ways than one!💕
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Thank you @NovaScotiagirl The French bakery was small but had a lot on hand so much to choose from. I was able to bring home some creme brulee too which was divine!
Turns out I was tired. I had a 4 hour nap yesterday. Was still able to sleep last night as well.
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The book is entitled "Hope for the Best and Plan for the Rest" . I found the link on Amazon and am posting it here for you.
They also have a blog that they do that follows the book and has much more. Here is the link for that in case that is a better way for you to obtain the information. It is called The Waiting Room Revolution
Book | Waiting Room Rev (waitingroomrevolution.com)
There you can find a lot of info out too. I would recommend either forms to any one of you. Depends on your learning style and how you want to receive the info.
Hope you find it useful.
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Thank you @HorseGirl I will definitely post some pics once I am done. I started another blanket this weekend and am almost done it. I will show both blankets soon.
As far as the work I do, well it is one way to fill the day and it is also another way to show my loved ones I was thinking of them and planning all the while.
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I'm sorry to hear that you have no treatment options left. Your strong, positive attitude and spirit are an inspiration, as well as the creative projects you have on the go which give you hope and joy. I wish you all the best. My chemo was three days ago and it went fine. Today is my last day of the three days of IV hydration. This is a standard treatment I'm getting. Waiting for the side effects to emerge, and trying to stay active.
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@Strongwoman Thank you so much for the book info. We ordered it on kindle and I am one third of the way through it. It is so good, but I have to take a break from it as I feel a bit overloaded. Time to window shop on the Temu site.
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Yes, the content can be "heavy" at times and is one of those books that allows you to pick up/put down as needed.
Glad you are enjoying it and found it @Hooodith
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I know everyone’s situation is different Hooodith, but I share these thoughts in case something here is helpful to you.
When I had a recurrence, spring of 2022, I was told that I could begin treatment right away or wait until I had symptoms, and that it would not make a difference to the results. I chose to go ahead, mostly because I preferred the timing, as you have considered in your choice. My oncologist at the time (a lovely lady from the UK who was in Victoria as a locum) discussed with me three treatment options, and she guided me towards the ultimate decision.
Option 1: Carbo and Taxol again,
Option 2: Just Carbo which she called the “heavy hitter”,
Option 3: Carbo and CaelyxI/we chose option 2 because it seemed "safest" for me. When I was treated the first time, IP chemo with Taxol and Carbo, my blood counts were hit hard and the side effects were very unpleasant. As they were mostly caused by Taxol, I chose to not use it again. By starting with just Carbo, she said that we could add Caelyx later if needed. As it turns out, it wasn’t needed, so I’m confident we made the right choice. Besides which, it was much kinder to me than the first chemo treatment. I was back on the golf course the 4th day after chemo, golfing 3 or 4 times a week, up until cycle 5 and 6, which just happened to coincide with the end of golf season, lol!
You might wish to ask if you are a candidate for a PARP inhibitor, which you would begin after completing chemo. The research is evolving, and they are finding some very positive results. I started on Niraparib (Zejula) soon after finishing chemo and am very fortunate to have minimal side effects. I’ve been on it for a year and a half and will remain on for a total of 2 – 3 years, yet to be determined.
Also, my current oncologist told me they are now doing some clinical trials in Victoria. He suggested that I may be a future candidate. Doesn’t hurt to ask!
And my final thought, if you are not comfortable with your oncologist DEFINITELY ask for someone else. The oncologist I have is young, positive, up-to-date and extremely personable. He is quite new to Victoria and became my oncologist at the perfect time for me!!! I have also changed who I see in Nanaimo and am extremely happy with the change. (Are you comfortable sharing your location on Vancouver Island?)
I wish you the best, Hooodith, and invite you to reach out if you have any questions of me.
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@CrazyCat Thank you so much for this information and encouragement. I live on Gabriola and get chemo at NRGH. I am not happy with the doc there either. But I have no-one to talk to about it, nor about the onc in Victoria, who I think is burnt out. Who did you approach? I generally feel abandoned and invisible and unsupported. I did ask my onc about parp inhibitors but he just brushed me off, no explanation, no discussion. My primary caregiver, an overworked nurse practitioner at our local clinic, will not help. She says I have to advocate for myself, that this is not her job. Sigh.
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@Hooodith I can totally relate to your frustration. At NRGH, at the desk where you check in, you can ask to have a different doctor. That is how I did it. I kept ending up back with the same doctor, but now I finally have consistency, seeing the doctor I wanted to see. I believe there are now only three doctors, 2 full time, 1 part time, as one recently left. So I'm not sure if it will work for you, as they are really stretched at the moment, but it's worth a try. Having cancer is stressful enough, we shouldn't be worried about getting proper care!!!
I got the same reaction as you re PARP inhibitors, from the doctor I had when I began my treatment. As I said, my new oncologist came along at just the right time for me. I didn't even ask, he said "I want to put you on Zejula". He became my oncologist just as I was heading into cycle 5 of carbo treatment.
I prefer not to name doctors on this site. I would love to meet up with you for coffee so that we could discuss your situation and perhaps I can offer suggestions. Are you likely to be in Nanaimo soon? I could meet you at the ferry if you wish to come over as a foot passenger, or anywhere that works for you. Let me know what you think. Take care Hooodith, and hopefully we can meet up soon.
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@CrazyCat Thank you again! I would love to meet you for coffee! The next week is full, with getting ready for a family wedding. Possibly the week after, I could meet you at the Pantry, the restaurant across from Starbucks. I could def. walk on and get there by myself. I never thought of talking to the people in the office. And it seems like such a harsh thing to do in public. I dread them asking me why I want to change my doctor. I hate hurting people’s feelings. But then nothing changes….
I will give you a shout after the long weekend. You have lifted my spirits…
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@Hooodith this sounds great, I'd love to meet you at the Pantry. I'm happy with coffee or breakfast or lunch, whatever works for you. The week of Sept. 2 is looking good for me - let's do it!
When you ask to change doctors you do not need to give a reason, and there is usually no one around other than you and one or 2 ladies in the reception area. I spoke to one of the doctors about it and he said it's not a problem, they've learned to not have large egos.I'm glad I have lifted your spirits, it is what Teal Sisters do for each other :-) Keep your spirits lifted and enjoy the family wedding!!
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Hello ladies, I read your comments often and I thank you for sharing your journey with all of us here. Today I need some advice. I’m currently being treated at Credit Valley but I would like to move my care to Princess Margaret. I fear a reoccurrence may be brewing and I would like to switch hospitals before I begin any new treatment . Do I ask my family doctor to refer me to PM? Or do I ask my oncologist at Credit Valley to refer me to PM? I worry that asking my family doctor would blindside my oncologist and I don’t want to offend her. Any suggestions on how to proceed? Thank you!
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