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Good morning (in B.C.) @Strongwoman and all Teal Sisters. It is a beautiful day here with highs supposed to reach 27. I had chemo yesterday and have the Dexmethasone flush today so I am staying out of the sun. @Strongwoman you continue to inspire with all the things you do. @GloHo what a lovely photo of two “moms”.
As I previously mentioned I had chemo yesterday and again I pounded that gong! Round 2 of 2 is done ✅ So next is a phone appointment with Dr. Fiorino (my medical oncologist) May27 at 9:30 when we will discuss the daily Olaparib (PARP) inhibitor. Until then other than blood tests I have nothing on my dance card except gaining some weight and getting stronger. Oh and growing hair on my head and getting rid of it on my face! 🤣. I mean seriously couldn’t the peach fuzz have stayed off my face?! I will be celebrating Mother’s Day with my son and family on Saturday and I’m looking forward to a day with kids, grandkids and great grandkids.
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I will be writing up my Cycle 2 update in clinical trials soon. Nothing new to report. Have lost a bit of weight - gradually - so keeping an eye on that.
My former boss invited us to stay, as guests, at one of her rental cottages in Quebec. We’ve booked for the middle of July!! Can’t wait to see if puppy is a swimmer 🐾.
This job was not my career job…it was a side job that I kept at after retirement (online, work from home). She has always been very supportive of me and always kept in touch to see how I was doing. When her mom was diagnosed in Dec, she reached out to me to guide her in things to expect re treatment, etc. Unfortunately, the disease was very aggressive and her mom passed before treatment began.
I discovered that I have an aversion to making commitments too far in advance. It took a lot for me to actually book the cottage for a July date!! My treatment has been so up and down, with frequent drug and schedule changes, that I hesitate and sometimes do not follow through on making plans in advance. I knew I did this…but didn’t realize how bad it was until actually having to make a commitment. I think I was able to do it this time for two reasons 1) she knows my situation and understands that something may come up and 2) if things change with my treatment…I know it is ok to take a chemo holiday!! Especially for something that is going to be so good for me! What I can’t control is the physical part, which would be the only thing that would put a wrench in my plans. I feel fine now…so 🤞.1 -
@JoanEG You look so happy! So nice to see that smile. Ringing that gong is great. Yes, I hear you about the peach fuzz and the face. When I was starting to grow hair again, I thought "God, seriously, the face?" I don't think we realize all the protective ways our bodies really do protect our skin. Now you can't see it but when it is growing in, we definitely see it.
Your Mother's Day will be wonderful spending it with your son and his family. I think it is amazing you get to see and be with both grandkids and great grandkids.
How are you feeling about taking Olaparib? Have any questions in mind to ask your Oncologist?
Weather sounds wonderful out there. I have been slowly washing up my spring/summer clothes and changing over the closet etc. Yesterday and today I did pull out some warmer stuff as I was a bit cold.
I have been binging The Gilded Age. I watch it and think how much fun the people who make the costumes must have had. The outfits of the ladies is so decadent and fancy. It is truly awe inspiring when you see what they end up wearing.
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I hear you on the not making plans in advance @GloHo I tend to do the same as well. I am getting better at booking only one outing a week with a friend and navigate where we go to eat based on what I can at the time. It is interesting that we default to this, isn't it? Perhaps it is because we are so scheduled as we go through treatments etc not knowing how we will feel that it is like a protective mechanism. Hmm…I am sure someone one day will do a study on it.
The break and stay in Quebec will be wonderful. It is a beautiful province as well. I hope you go and enjoy it for all it is worth!
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@Strongwoman I do have a few questions about the olaparib for my onc. but I also have a cousin who has been part of a study on this drug since 2017. She was given 6 months when she was diagnosed 9 years ago and here she is thriving today. It gives me hope and she has been a great source of information.
@GloHo I hear you about making plans too far in advance! I have started to give myself permission to say yes. I think it’s better to have to cancel if I am unwell than to face the regret that I didn’t take advantage of the opportunity.
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Count yourself blessed to see a picture of me!!!🤣🤣🤣🤣 I rarely share pictures of myself…yes, I’m one of “those” people!!
Travelling is a bit much…pros and cons. I will probably include some thoughts on this in the clinical trial thread so people will have an idea of what to expect.
It is funny how we do “protect” ourselves. I can think of a million reasons why I should do something but that one default pulls me back. I even know I’m doing it but haven’t been able to get past it. Maybe this will help me turn that corner.
Just tried to look to see if there was such a study…nothing. Would be interesting.1 -
That does leave one feeling hopeful about the Olaparib. Glad to hear your cousin has beat the odds. Questions are good and sometimes they are answered before we even ask them at an appt. Good to be prepared regardless.
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What a smile!! Congrats on completing your treatment.
Looks like your hair is coming in nicely. Tip…when your hair gets to a certain length where you think, I kind of like this length…take a picture of yourself at that point. I did and then when my hair grew more and I decided I didn’t want it as long as before…I had a picture of what I wanted for my hairdresser to refer to. 🤣 Oh yes…the peach fuzz…I was also surprised at that.
I was on Niraparib for a bit - not sure if side effects are the same. I was ok on it. TIP: For Niraparib, there was a lot of blood tests at the beginning to ensure I was on the correct dose. I was able to go to the LifeLabs near my home so I didn’t have to drive to the clinic to get the bloodwork done. The nurse just gave me a requisition that covered a few months to show at LifeLabs each time I went.Your Mother’s Day plans sound wonderful. Enjoy!!
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Yes, I know that about you and pics because I think this is the first one I have see of you and why I commented. Thank you for being brave and willing to share it with us all here.
Travelling can be a bit of struggle and the fatigue associated with it as well. It adds on to what we are already feeling so I can understand that point of view.
Here is hoping you have turned the corner with planning ahead. Gradual will be best and sustainable.
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Well Ladies. I am going to head off and bring my laundry in now as it looks like we might get some rain. Glad I got it out for a bit and perhaps it won't take as long in the dryer now.
Off to binge The Gilded Age and knit away.
Take care all. 💕
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Puppy playing with her sister (white) at the dog park this morning. First time they’ve been together since being adopted!! Yes, she is exhausted…almost two hours of play and puppy shenanigans!🐾
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@GloHo thanks for the tip on the hair! Your puppy definitely looks all played out! I bet it will sleep the rest of the day, My son and daughter-in-law are driving to the B.C. interior on Sunday to pick up a new puppy. They live on a farm and already own four dogs. One of their dogs is a Merema which is a livestock guardian and this time they are adding an Estrela also a livestock guardian. Both breeds are also great with kids. Here is a picture of the new puppy.
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Had a phone appt with my mumbling onc today. Luckily my husband got most of it, which was that my bloodwork and CT scan showed no tumours or disease progression. I wish I could drink wine and celebrate. On the May long weekend most of my family are coming here to help us celebrate our Ruby Wedding ( 40th ) A casual get together. I am hoping the weather stays as warm as it is right now. Happy Mothers Day to all mothers…
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Happy Mother's day to all you beautiful ladies.
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@JoanEG I bet you are proud and should be. Taking in that many children, working with them to adapt to farm life and all it entails on top of adapting to a new family means tons of patience, love and support. It shows on all of their faces. It is inspiring to know that there is humanity out there and your bunch is doing amazing with it. Thank you for sharing the pics and the story behind it all.
Glad the puppies had a great play and then was tired after. Great exercise and socialization for sure!
@Hooodith Sounds like you aren't a fan of your Onc by your description. Or is that off? The news of no new progression or growth sounds very good. You mentioned you wish you could have wine and celebrate……is there something stopping you from doing that? Your 40th celebration of your marriage is amazing! A ruby one they call it eh? What are the plans for the Ruby Celebration…..something casual…involves…???? I truly hope you have a great time and enjoy who joins you on that day and that you create some wonderful memories to last lifetimes. I think I am picking up on a bit of melancholy from you but could be way off. Want to make sure you are doing ok….let us know in your due time.
In the meantime ladies, I may have mentioned I had no wheels the other day or not…..I don't recall. Anyhow, I went to go to my Hospice program on Wed and my breaks wouldn't work. This was weird as I used it the day before with no issues and keep up with all my maintenance. Needless to say, it had to be towed on a flatbed to the mechanics and I got rides to and from my program. Well the mechanic called last night and low and behold he said something made a gigantic nest under the hood of my jeep. In doing so, they also chewed through the main vacuum line that supplies lots of things like the brakes. So better than we thought because we thought it might be brakes alone which can be expensive. This is to be a cheaper fix, by how much, who knows. But can you believe the damage the little critters did? We think it is the red squirrels around here. I will definitely be happy to get my wheels back soon though. Freedom ripped away but on the other hand, no one knew if I was at home or not so that was nice too,
HAPPY MOTHER'S DAY TO YOU ALL!!!! Hope you enjoy it in any way you like in the days to come because it does not have to be just one single day.
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OMG! Brake failure! Those little buggers! That could have been disastrous! You obviously found out in your driveway, right?
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@Strongwoman yikes! It’s a good thing you didn’t get out of your driveway! Happy Mother’s Day to you. 🌺
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🌸 HAPPY MOTHER’S DAY everyone!!
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Happy mother's day to all the mommies out there xo
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Ya well ladies, now I have to wait patiently for the part to come from the USA. I have been "grounded" since Wed last week. Good note, no one knows I am home so that is great. NO pop ins which I don't like. I went to Play with Clay today with a friend and had to tell her there the news. We cried and hugged. She has been so great during this whole thing. At Christmas one year, she saved my butt because I had NO baking done. She brought in a nice big tray for us all and every Christmas since has done one. She even wrote out all her recipes for me so that I can include them in the boys' cookbooks I am doing them up. So kind. So nice to have supportive people around us all.
I finished my blanket and will post a pic on Thursday. I am busy knitting up some baby cocoons/sleep sacks for friends we are visiting on Friday to give to them before their arrival of their new bundle of joy. We will give them something after as well but want to take them something that day. So special it is, new birth…..of anything. Gives one hope or it does me.
Hope everyone is doing well and had a wonderful day or weekend. Chat soon all!
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@Strongwoman. I have a concurrent disorder called chronic Pelvic Pain ( CPP ) Used to be called Interstitial Cystitis. It is misunderstood by the medical profession, and undertreated, particularly if you are a woman. I had problems for years but it really got triggered by the cancer and a kidney infection. The pain is really bad, and thats what gets undertreated. Diet is part of it. I cannot eat or drink anything acidic. Alcohol is out. I never drank much anyway, but sometimes I would love a glass of Valpolicella. I am fed up with my onc because even though he knows I have poor hearing, he makes no effort to speak loudly or clearly, and sounds frustrated when I ask him to repeat himself. What people don’t realise is that people who are deaf and hard of hearing do a lot of lipreading, so phone conversations are extremely challenging. He is in Victoria, and I am a ferry ride and 80 miles away by road. But I am thinking of insisting on going there for these appts. He also avoids explaining things to me, even when I ask directly. I am envious when I read of women on here having lovely helpful conversations with their oncologists. I don’t have helpful conversations with anyone. My Nurse Practitioner, who is my primary caregiver, told me six weeks ago that she couldn’t continue to prescribe opiates for me as I no longer had cancer. This was because the chemo had ended and there was no sign of disease progression. I told her it was for the pain of the CPP. This was not good enough, and she started t reduce my dilaudid, telling me there were other painkillers she could prescribe. The next time I saw her, a very stressful month later, she admitted she had no alternative painkiller. So I am still getting the opiates, the only pills that kill the pain in my bladder. One of the things that really pisses me off is the fact that she is a different person when I take my husband into her office with me.
I am looking forward go the weekend and seeing most of my family. Two weeks after that I have a uretal stent replaced.0 -
@Strongwoman it sounds like you are making really good use of your”grounding!
@Hooodith I’m so sorry you are having such a rough time with your oncologist. I must have really lucked out as the one I have in Victoria is amazing. Is it possible to have your husband included in your phone conversations using speaker phone? Or as you suggested in spite of the travel insist on in person appointments. As for the other I’m glad you are continuing to get the meds you need, chronic pain is so hard both physically and mentally. Sending you a big hug.
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@Hooodith I am saddened by what you are going through. I also understand your perspective and have watched this occur with a patient interacting with a different physician the same thing occur with her hearing loss. It is why I go with her to her appts. When I am with my friend, the physician has an accent which doesn't help matters, speaks in a normal tone and doesn't deviate from it. I then translate loudly to my friend, make sure she understands as the physician waits while I do this. This occurs the whole appt. If someone doesn't go with my friend, she has no idea what has happened. It is still unacceptable that the physicans are not the one changing their approach to client care when there is a hearing loss. Phone calls would be nearly impossible for this as well without someone else helping, It is a lack in the system (among other things) that need to be corrected. Physicians are busy but they need to slow down and meet the patient where they are at. I hope this changes in the near future for all.
As for the pain that you feel and have been treated more recently with the Long acting Dilaudid is working, what is the rationale for taking you off it? Because your ovarian cancer is under control? Do they think that these two are separate beasts or interlaced in coming up with a diagnosis? There is no harm in keeping you on the long acting Dilaudid and you would prolly use less meds because it is being slowly released into the system to combat the chronic nature of it. You did try other analgesics prior to this and it wasn't working so why change something that is now. It also seems like you NP came back with the same understanding after she really looked into it. I would fight to stay on it, personally. The only other options I have read that may work for it are nerve blocks if it is more neuropathic pain. Has that ever been discussed or visited as an option? Pregabalin was another med I read could help in conjunction with some other pain meds. Needless to say, I, too would gather my man up and take him to your appts with you. I know there is travel involved but sometimes when that physical person is in front of you and your support is there, care is altered and you are listened to better. What are your thoughts on this and would this help in you in any way? If it will, do it or try it the once and see where you get. It also sounds like your scans etc is showing no new growth and markers are down for you? Is this the first time this has happened in the last few months? How are you feeling about that.
I am glad you are looking forward to seeing the family. Is this for the celebration of the 40th Anniversary? I hope it a lovely day filled with good friends and family. I hear you on the acidic and alcohol. My gut doesn't like any carbobation at all and alcohol, I don't chance. With my tummy not liking most of the stuff I want to put in it but don't, it doesn't warrant the pain I would be in after. I am truly hoping hooking up with the TCM will help at the very least with the eating part of my issues if nothing else. I am so hungry and really want to eat more but have to stick with all this safe stuff to avoid a major crisis. I will update you with any progress I make. He comes off his reasearch sabbatical the 20th of this month so hoping to hear from him soon.
I say, stay the course, keep hubby involved and make an appt to go see them next time. I would also explain to them the frustration you are having because you can't hear and ask if they can make accommodations to have this appt go smoother. Start with that and see what they say and what occurs. All you can do is ask and if they don't change, frustrating but have your hubby do the talking etc. You can talk too if you want and don't become aggitated which is hard to do when you are in it at the time. I wish you the best, hope you feel heard here now and that this will help you moving forward. Thank you for sharing as I know this has been weighing on you for a long time. Brave you are to be vulnerable and to share. Big step, Be proud of yourself, 💕
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