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Can anyone else not believe that it is May already?! It feels like 2025 just started but here we are 5 months in! 

Looking forward to having you join the Teal Thursday chats for May by posting below. If you have any questions please let me know. 

All the best!

Hello Everyone,

   If springtime has arrived in your area, I can imagine that you are out enjoying the weather, or doing springtime activities. Spring has definitely arrived here on the west coast. We are enjoying blue skies and warm sunshine (17 - 20 c), with more in the forecast. 

   My update is that I am in my 4th week of recovery from the hysterectomy/debulking surgery. My stitches are itchy as can be, but healing well. I am walking daily and can easily do 3 km, but it is a guessing game in terms of how to stay within the recommended limits. I will go for a 6 week check-up with a local gynecologist in my town and hopefully will get the green light to do more movement and activity. 

   I have a telephone appointment booked with my oncologist at the end of May, presumably to go over the pathology report and discuss further treatment. As I mentioned previously, the surgeon took out the remains of the tumour, but said he didn't find anything else to remove, so I am wondering how she will interpret that in terms of my health trajectory? I understand that things can change on a dime, but I am hoping that she will take into account my previous good health, no complications in chemo and no complications from surgery, instead of quoting broad, possibly outdated survivorship stats. (I mention outdated stats because I read an article on the "My Ovarian Cancer" site which stated how rapidly things are changing with more effective treatments and longer survivorship than in past years). 

   I have decided that I want to see this doctor in person, rather than a telephone call. It feels too impersonal to talk on the phone about my health. I am willing to travel to Victoria (3.5 hours drive), as I have a strong need to be "seen" and have a direct, interactive discussion. I called this morning to change the appointment, and I hope it goes through. I am in the process of assembling some questions to ask her.  

   I also learned this week that BC doesn't use a team-based approach model for ovarian cancer patients, therefore explains why I feel disconnected from this type of medical support. There is an oncology team for breast cancer, so I wonder if it relates to the fact that breast cancer research/ support is well-funded? 

   These are my musings for today!  Sending you all warm wishes and hoping all is well!

Leslie 

@LeslieA  Hello and thank you for your update.  Basically, you are sitting in limbo for now.  That is ok.  Sounds like you are healing well and getting those walks in really helps as well.  I think seeing your Onc in person is a fantastic idea and hope you get to do that.  So different from province to province in their models. Glad you found out they don't use a team based approach so that you are prepared for that. Glad you are in good spirits too.  Keep up the good work and we will chat soon.

It is now past 2pm and I am going to log off for now.  Be nice to get updates later from some of you ladies as you are probably busy now.  Well you all take care and enjoy the rest of the day.

Hi@LeslieA. You are doing great if you can easily walk 3km at 4 weeks post surgery. 👏 I don't think I got there until 8+ weeks and I was quite fit beforehand. 
I drive 3 hours to see my oncologist so totally understand that need. Good for you for requesting that. 
It is strange that we don't have consistency across the provinces but I think that even occurs in province too. 
I hope you continue to progress so positively!! That's for continuing to share with us all. 

@LeslieA I'm sorry the request was denied. It does seem odd. Too busy? Not a great way to position it.
Can you request a video appointment? That shouldn't take any more time than a call. Perhaps you share your feeling of disconnection with the nurse? 

The oncologist's secretary explained that the doctor sometimes works from home doing her phone calls, so in-person meetings must be planned ahead of time with her pre-approval. I will discuss my preference for an in-person meeting with her on May 28th. And on the theme of medical disconnection, I didn't meet the surgeon until the day of my surgery, and didn't know who was operating on me until about a week before. Maybe that is the regular protocol these days? 

@Leslie  Obviously our journeys and requirements are all different.  We both deal with the same cancer centre and I am extremely grateful that I haven't had to travel to Victoria for every appointment.  I'm sorry you have felt disconnected.  Almost two years in I have only met with my oncologist, in person, twice and the nurse practitioner three times but I have had monthly phone appointments and when I was getting chemo I had an appointment with one of the staff oncologists at the local hospital prior to every treatment.  As for meeting the surgeons there are only two oncology gyno surgeons on the island so I was quite satisfied with speaking to Dr.Cohen by phone prior to my surgery then meeting him and Dr. Mazgani the day of my surgery.  
You do what you feel you need!  Definitely ask for an in person appointment if you feel that is what is right for you.  You are your own best advocate.

Hi @LeslieA

I sure hope that is NOT the protocol - this is definitely not patient-focused care and a horrible "trend".  I would file a complaint, but I don't know how things work in BC.  In Alberta there is an online patient feedback form that I've used a few times now - sometimes with good results, other times, not so much, but that's OK, as long as I have the opportunity to voice my concerns or make suggestions on how they could improve, I'm happy to have a way to register these things and they do keep the statistics for it (the Patient Coordinator told me over the phone), so it does matter.
I don't see why the admin person wouldn't just book you an in-person appointment if she manages the Onc's schedule?  That is so bizarre to me.
I sure hope they improve how they manage patients!  All the best at your May 28 appointment :) 

As far as I know, there isn't a feedback system about the medical care we receive, at least it wasn't offered to me. I was very interested in providing feedback about my hospital stay and the exemplary care I received from one nurse in particular. I have thoughts about other aspects of my care that could be improved for the good of all future patients. I might do some poking around to see if an online feedback avenue exists. Thanks for the idea! 

Leslie
I am so sorry to hear you cannot get a conversation with your oncologist in person if requested. I am just going to say “that is not ok”. I see you are a counsellor. I am a psychologist who does research on client/professional communication. Again not ok. I appreciate these days we have a mix of phone and in person but if you are needing an in person session an effort should be made to make that happen. You are so correct that connection is important and for some that can happen on the phone or zoom for others in person is important. I hope there is a way to make that happen for you but sorry you may need to assert yourself. This whole cancer journey is crazy enough without feeling frustrated that you are not able to have meaningful conversation with your oncologist.

I was telling my oncologist and PA about a session I had last fall with a family of a child with learning needs. They told me they know it is going to be bad news if their child’s physician wants to meet in person and not by phone. I hear parents if kids in school say that too. They get a call or note home unless it is bad and then they meet in person. I think professionals are not award of this. My oncologist (who I really appreciate and am fortunate that I know she and the the team “know me”…….maybe because I make sure they do ha ha) and I had a great discussion. She acknowledged appreciating my sharing this.

I hope your surgery recovery is going well and are feeling better. Great there is minor discomfort. I was living for a BATH after mine!! Sending you good energy and hope you get to a more comfortable place with you communication with your oncologist…..and oh, by the way. you are busy too!!! Healing and living with cancer…..also a full time job :-)
LF

Thank you for your thoughts Graciebelle. I must admit that I "have a bee in my bonnet" (such an old term!) about the impersonal side of medicine, so I have decided to do a couple of things. I made an appointment to see my GP next week, because I want to talk to her in person so she can "see" me in this state of reasonable health. I have some questions to ask, but nothing urgent about my health for a change. She has been a disembodied voice on the phone over the last 6 months, so enough of that. I also intend to give her a handmade card to thank her for diagnosing me so quickly & activating the system to save my life. I am very grateful.

I will also be seeing the local gynaecologist for a 6 week surgery checkup and I also intend to thank him for his encouragement during a very dark time last November when the tumour was taking me down. That bit of encouragement sparked hope in me and gave me the courage to keep going. 
I want these doctors to know the important role they play in their connection with me, even if it's one office visit. I have also made a point of sincerely thanking every tech person, every nurse and every doctor for helping me so far, and that is a long list! 

Linda, you are likely correct about the faltering health care system not meeting the needs of cancer patients today. I read once that cancer will affect approximately 50% of our aging population. I hope that stat is wrong. Our Victoria Cancer Care Centre serves Vancouver Island which is over 500,000 people. We have a handful of oncologists in Victoria but I couldn't find the current number. So no wonder the backlog. 

There are plans to open another cancer care centre in Nanaimo, a town at the halfway point on the Island, which will make a difference, I hope. 
Some provinces like Ontario are way ahead of others in terms of oncologists and related health services and I am glad that people can access the care they need. 

I love this so much. Acknowledging people that support us is so important. You’re taking control of the best you can. Well done I have this help you feel more in control. Love it! 😍Well done I have this help you feel more in control of it.

Hi @LeslieA. I understand the importance of recognition for folks that sometimes are just 'doing their jobs' however, their job can have such an impact on us. I took my GP flowers the first time I saw her post my surgery as she was the one who helped me get into PMH so quickly. Her smile of appreciation said it all. I also gave each one of my chemo nurses a Tim's Gift Card. It was for $25 so a small amount however, they treated me for 6-8 hours and for that, I was truly appreciative as they word hard.

I hope your doctor will appreciate your need for an in-person meeting when you speak with her (I still think she can videoconference even if she's at home...for goodness sake, the technology exists). Regardless, how and what you desire as your care is what's most important in the end. Here's a quote I heard from yesterday which I think applies, "A good decision is one that feels right for me." So regardless of what the healthcare provider says, what you want is what is the most important thing. Keep the strong will going!

Also, I hope you are continue to heal more and more each day! 

What a great idea. Alwayslearning! You always feel so appreciative of their skills, but also their care and friendliness.  I have yet, since the fall of 2019 when I became an unwilling member of the club who visits the Bliss Murphy Cancer Centre in St. John's (NL), come across anyone who has been anything but warm and kind and patient, with my questions and concerns.  I consider them all angels at every level of responsibility.  I know the Covid pandemic set health systems back globally and they have yet to catch up, but so far I've managed not to fall between the cracks with ours. 

Good afternoon Sisters!  I'm calling today "Thankful Teal Thursday". One year ago today I had my last (fingers crossed) round of chemotherapy!  Like@LeslieA and@Alwayslearning I also took gifts and cards that I had made to my care providers.  For the kind chemo nurses I had a sign made for them.  May 8/2024 I banged the gong and gave the nurses the sign.  

Congratulations@JoanEG. Great pics and love the quote. May your health do nothing but continue in a positive trajectory!!

Thank you! 🫶

@JoanEG   So happy for you celebrating one year from ringing that gong!  What a day to celebrate indeed.  You have been feeling great by your posts and all you have been doing inside and out for work. Keep it up!  You are amazing!

@Strongwoman Thank you.  I hope you are doing well. 🩵

Yes a videoconference could work for me if that's the only option. I met with my GP and a locum doctor IN PERSON this week & they gave me some reasonable time to chat about my health. What pleased me was seeing this particular locum doctor who saw me last October when I was sick with cancer symptoms but not yet diagnosed. It was a full circle moment to have both doctors see me now, feeling & looking much better! 

That's good to hear@LeslieA .  I'm glad you got to have a good chat with your GP and the locum you saw previously!  I am so fortunate that my relationship with my GP includes her just popping in for tea or answering questions that I text her.  She actually complains that I avoid in person office visits, lol.  I had a telephone appointment with my oncologist this morning but everything is so routine now, thank goodness, that it only lasted about 5 minutes.  I will have my next telephone appointment with her in 2 months unless something changes.  I will also have my 6 month CT scan in July.

Happy World Ovarian Cancer Day to everybody! I hope that the next drug that cures us all is just around the corner. Never give up!

@Tanja …I'll toast to that!! 🍾🩵

We. Are. Warriors. 

@Tanja   Yes. Happy World Ovarian Cancer Day to everyone!  I, too, hope they keep researching and find that drug, trial or something that will help one of our types and finds us a cure.  One never knows when that day will come but we all know they are working diligently in trying to find something for us. Fingers crossed they continue to work as hard as ever and that day is here sooner than we think. 

Take care and have a wonderful weekend!

That is great news @lbarr72

It will make the weekend that much sweeter!!

@lbarr72  That is wonderful news that there is stability and no evidence of spread. That is great news going into the weekend with. Thank you for sharing that with us.  It is nice to hear both the good and bad news on here. So nice when it is good news.  Keep up the good work and enjoy the weekend!

Hi everyone. Beautiful day here in southwestern Ontario ☀️.

Just a quick check in…

I was approved for the trial and had my first infusion yesterday. Very uneventful…thank goodness. I'll provide more details in my clinical trial post. 

I have been quite emotional this past week. I usually get a little anxious when I start a new treatment but now that I've been through a treatment without incident I should start feeling better. Plus, I just drove home from Toronto this morning and am feeling tired. Plus🤣🤣, my car wipers weren't working this morning. I just needed to get the morning dew off the windshield!! So I had to deal with that when I got home because I'm headed back to Toronto on Monday!! My mechanic checked it out today, is going to order the part and fit me in tomorrow!! Bless his heart!!

Have a great long weekend everyone!!

Oh yeah…trial requires FULL sun coverage. I look like a beekeeper 🐝🤣. 

Hey@GloHo you do indeed look like a beekeeper! 😁. Nice to hear your first infusion went well and that you will be able to get the issue with your wipers dealt with before you have to head back to Toronto.  
it just started to sprinkle here in Cowichan, we desperately need the rain!  Enjoy your weekend!

Well @GloHo that picture is fantastic. You do indeed look like a beekeeper. I'm so glad you were approved and are on your way (and with incident). I think they would have been foolish not to let you participate since you are the resident expert on trials! I hope you continue to progress with no incidents and thanks again for keeping us all informed as you go through these trials. You are leading the way for others and as we know, hopefully improved treatment outcomes and an ultimate cure for us all.

Sorry to hear about the windshield wipers. I know how frustrating that can be. Drive carefully when you return back to T.O. on Monday. Hopefully the road won't be too bad since it's a long weekend and people shouldn't be at work.

@GloHo and @JoanEG et al. I hope you all had a nice Thursday. Sorry I missed connecting again. I always seem to have appointments that conflict. I had my appointment at PMH for my Parb clinic check in. My bloodwork looked good and my CT scan from Feb was clear so I marshal onward with my Lynparza (full dosage still 300mgx2 day). I'm now 10 months in and other than my persistent abdominal pain (side effect???), seem to be doing well. I have a colonoscopy (routine) scheduled in a few weeks so hoping that goes well although am not looking forward to the prep (ugh).

I did also have an appointment with Dr. Roebotham in the Sexual Health Clinic at PMH. She was very helpful and I'll post a separate note on that.

I hope everyone has a great Victoria Day weekend and that the sun shines on all your lovely faces. 

@Alwayslearning good morning!  Good to know things are going well with you.  I'm 11 months into taking Lynparza also on the full dose and thankfully have had no side effects.  I do not envy you the colonoscopy prep, ugh!  I will be interested in reading your about your appointment at the Sexual Health Clinic although as a 74 year old widow that ship has sailed!  
Have a great weekend!

Hi @JoanEG I'm very happy that you've had no side effects from Lynparza. I follow a group on FBook (Lynparza/Olaparib Support) and there are many and I do mean many (which makes me very sad), that cannot tolerate the full dosage. 

As for Sexual Health - never say never!!! 

Have a great weekend too!

Ooops…posted by mistake. Meant to select delete not send 🤣🤣

Hope I'm not posting this twice…I don't know what happened to the one I just tried to post.

I look like a be

Hi everyone, hope you've had a lovely long weekend!

Did anyone watch Canada's Got Talent?  

The one fella Darren Leo (comedian) was really a great advocate for Ovarian cancer because his partner Marrell (not sure of her name spelling?) had ovarian cancer.  He mentioned some kind of research project in Boston that was put on hold.  

Anyone know what he was talking about? 

Hi@DiamondGoddessYYC I did not however when I did a google search of OVC research in Boston the attached is what came up (AI generated)…

Here's the you tube clip.  If you don't want to watch it all - start at 4:06minutes in is where he mentions Boston Scientific in 2018 acquired a "medical device to detect ovarian cancer early" and he encourages them to re-start the project!
https://youtu.be/iZzFcKc8uM0?si=wbZprHCDzw6dRYWy 

Hello everyone. It's a very dreary rainy day here in Southwestern Ontario on the shores of Lake Erie. It's been raining for a few days now, non-stop. Plus it's cold. I'm not enjoying this version of May spring temperatures. Wanted to check and see how everyone is doing out there. I have a routine colonoscopy on Tuesday. It was scheduled for last February, alas that's when I was diagnosed with OVC and so it's been deferred until now. I'm hoping the outcome will be 'unremarkable'. I am not looking forward to the prep however! 

I hope others across the country and enjoying sunshine and warmer weather. Look forward to hearing from you.

Good afternoon @Alwayslearning and everyone.  It's a lovely sunny day here in my area of Vancouver Island.  We too have had our share of rain and cool temperatures lately so I'm looking forward to the next few days that are looking sunny and warm!  Nothing new to report here which I am truly thankful for.  Eleven months in on Olaparib and feeling great although I am gaining weight at a remarkable speed.  I think it is more from the low fibre diet than anything else.  Since I can't fill up on veggies I seem to be eating more carbs.  I'm a coach for Weight Watchers and I talk the talk but can't seem to walk the walk these days.

Hi @lbarr72 and @JoanEG ... first I'm jealous of your sunshine @JoanEG because I think I just saw the ark go by my house!

With regard to both your comments on weight gain and Lynparza...I'm 10 months in and have also noticed weight gain. I'm up two clothing sizes. I eat very healthy, I'm not on a low fibre diet, and I was either swimming up to 40 laps a day in a pool or walking about 5km - at least 4 days a week. Yet the weight continues. I'm in a Lynparza FaceBook group and there are quite a few woman who have reported weight gain, even though it is not listed as a side effect. While I was 58 at time of my diagnosis, and well into menopause, I did undergo a total hysterectomy, plus bilateral salpingo-oophorectomy. With that very rapid drop in any estrogen producing parts of my body, this could also be a cause. Who knows. It is frustrating I will admit.

Hi Everyone,

   I thought I would also check-in today. I had a telephone chat with my surgeon recently to discuss the pathology report that was developed from the full hysterectomy/debulking surgery in early April. The surgeon was very happy with the report, saying that it was "excellent and couldn't be any better." They couldn't find any cancer in all the areas they biopsied. They removed a very shrunken, dead tumour. He told me to celebrate this result.

   An exam yesterday with the gynecologist confirmed that I am healing well from the surgery. He said that he was very happy to see me and as we talked further, he said that my health was dire when we first met in November 2024. At that time, I felt encouraged by him and held that bit of encouragement in my heart throughout the infusions, the medical procedures, the operations, the scans, the endless bloodwork. I thanked him yesterday for his encouraging spark and what that meant to me, amid the grim faces/neutral tones of some other medical practitioners.

   This might explain why the oncologist in November offered a prognosis, which I refused to hear. If it was poor (like I am quite sure it was at that time), I wonder how that would have affected my treatment outcome? I might have given up and arranged for MAID, believing it was hopeless. The power of language to uplift or destroy. 

   Next will be a phone call meeting with my oncologist on May 28th. I am not sure how many infusions she will want, but I am guessing 3. Ugh. I am curious what she thinks about my prognosis now, and I am sure she will talk about the high rate of recurrence, which is appropriate I guess.

I see my task is to "be here, now" and not perseverate on the future. It's a challenge to do, but I am trying. 

Leslie 

  

@LeslieA what a lovely and positive discussion you had with your surgeon. Congratulations and yes...take and celebrate the win!!!

It's so nice to hear that your gyno gave you encouragement and that you had the mental fortitude to hang on to that. I agree that words can be more powerful than actions that's for sure. 

It's interesting as my oncologist at PMH has not spoken to me about recurrence. Likely she mentioned it when we first met in the broader context of OVC however, it has never been a part of her ongoing 'bedside manner'. Her focus and that of her team, have always been on how well I'm doing right now and focusing on the here and now. I guess it's something I've always appreciated. If I wanted to have a discussion about it, I'm sure she would however as you say, my task is to "be here, now". I choose to live in that space. 

Please keep us informed post your oncologist call. I hope she too will look at things from a, "how do we keep this moving forward positively" approach.

Thank you for your thoughts Always Learning, and I think you are in good hands with a caring, compassionate team that focuses on You. I hope that my oncologist is similar in her approach. So far there is no relationship; just an efficient management of my treatment. I will see what happens on May 28th! 

Great news for OC care in Vancouver

https://cheknews.ca/victoria-gala-raises-1-76-million-to-expand-womens-cancer-care-on-vancouver-island-1257214/

Joan,

Thank you for posting this encouraging development on Vancouver Island. I am thrilled that people recognize & care about helping women with gynaecological diseases. I hope it raises more awareness for all afflicted women across our country so that treatments become curative in our lifetime. 
Leslie 

@LeslieA It is great news for women like us who had quite a wait for our surgery!

Sounds like you have had a great recovery.  You are doing amazingly!  I am looking at my surgery June 16th tentatively depending on my scans coming up the week before.  I hope I can be as active as you when I'm on the other side of this.  How awesome is it to have a positive doctor that gives us all hope.

Hi @Meinvan. Sending you positive energy that you will progress with your June 16th surgery. It may seem far away right now but it will arrive quickly. Good luck with the scans and again, hopeful things will progress forward quickly for you.