TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)

Tinazzie

@albertan - I think your situation is more common than we would hope.  After my surgery, and all through my chemo, I met with "my oncologist" just once in person and one phone appointment. They have a Gyne Oncology team approach at my cancer center location.  So, it all depends on who happens to be on clinic vs OR duty that day.  The team also includes Residents, so I hear what you're saying.  I too was concerned about the continuity of my care, with having different doctors examine me each time - and of course there are personality differences as well, which makes it hard to build a relationship.  Someone once told me that her oncologist was like her friend and I remember thinking how great that would be.  

Fearless

@cbot @Tinazzie Any thoughts for @albertan on her expectations for access to her oncologist versus what she's experiencing?

Rad

@Fearless - Vol Mod Thanks for that information, really helpful!

Fearless

@tinazzie is right and it's so different province to province and even cancer center to cancer center.  One of my great wishes is some consistency across the country, so we can all have the same expectations no matter where we're treated.  

cbot

My situation is a little different @albertan, here in Windsor ON. I had the surgery done by the gyne-oncologist in London ON, and then have been followed by my medical oncologist here in Windsor for the chemo. The visits have alternated between in-person and phone appointments with the medical oncologist, and sometimes with the nurse on the team. At my upcoming appointment I will be discussing having alternating follow ups with the oncologist here in Windsor and the surgeon in London. In spite of COVID, I found that it wasn't too difficult to access the oncologist, but it only happened once a month at most. COVID did cause some delays in initiation of treatment, however (surgery), which I am not happy about. They just happened to have a cancellation so I was able to get in.

Fearless

@cbot is a good example of inconsistencies. I too am in Ontario but in the south east unlike cbot in the south west.  At the Kingston cancer center where I'm treated, their is a strong tie between patient and oncologist. Every appointment in past was with my oncologist directly and when I recurred and was transferred over to a medical oncologist for the trial I'm on there isn't a single time that I don't meet with her personally or by telephone if we agree that's all that's needed. And for me, that's every month...a clinical trial requirement though, not the norm. But even then, when I finished first line treatment it was every 3 months and my surgical oncologist always attended.  But the more I hear from others, the more I think we're the exception not the rule out here.  

Fearless

Well lovely ladies I sense it's time to wrap up.  Thanks for joining our chat today.  I hope you found something enlightening or encouraging or just informative.  Regardless, we've made new friends again today.  And I hope to see you all in the Symposium this weekend.

It's time for me to sign off, so let me leave you with something that inspires me every day since I began this journey almost four years ago: 

"Each morning when I open my eyes I say to myself: I, not events, have the

power to make me happy or unhappy today. I can choose which it shall be.

Yesterday is dead, tomorrow hasn't arrived yet. I have just one day,

today, and I'm going to be happy in it" - Groucho Marx

Ciao for now and see you all next week.

cbot

See you next week everyone!

albertan

Thanks @Fearless - Vol Mod and @Tinazzie for your replies .Gives me a little more of understanding.What happened since is that I had some symptoms I thought needed to be looked at and talked about them to the nurse, expressed my frustration/anxiety at not having seen the doc.The day after (Wed)they called me and said the doc would be able to see me this coming Monday.Makes me feel better...Like @Tinazzie said it would be nice to feel like your doc is your friend but mine, but I feel like in everyone I met on my 'team' a kind of' emotional detachment', for example good news and bad news are delivered in the same tone/way.So they say some number for example and then I say 'and that's good ,right...?'

albertan

 @Fearless - Vol Mod Thanks for the suggestion of discussion topic, I won't mention any doc names.I have registered for the symposium.What would be the time difference between time posted and AB time?Is their time Toronto time?Is this where this website admin is /most members are from?

As for my stage it is 3, grade 3 C.Does C mean it is less or more spread than A or B?

Thank you for asking about my son, his cold is a bit better, the hard part is I have to stay away from him as much as possible and can't give him a hug , I tell him to wear mask around me, even if 2 m away.Thankfully, Covid test came neg.As far as I remember, you have a grown up son?

As for chemo, after the first one I experienced mostly fatigue in the first week and after second it's been the same plus hair loss.That's been hard for me, I have red bumps on my head keeping me up at night.Did you do anything to prevent hair loss with chemo. Am I right in thinking this is your second cycle of chemo?Thank you for your help and support.

albertan

Thank you @cbot for the reply.Glad you were able to express what you need for your care, am trying to do the same.And @Fearless - Vol Mod it seems that some smaller centers , maybe there is not as much of the 'team' approach/residents to train etc.This whole 'team 'thing only made me feel uncared for, like responsibility was shared, like just a patient number.

Thank you all for today's discussion.

Fearless

@albertan Our live chat is over but I just popped back in and noticed your comments so thought to reply.  First of all, the times on the symposium are listed as Pacific and Eastern Time.  Just deduct 2 hours from the Eastern Time and that will give you the starting times for Calgary.  i.e. 6:30pm ET is 4:30pm in Alberta.

Secondly. you mentioned insisting on seeing your oncologist produced an appointment and mentioned you're given things like numbers but with no context.  It's so important as you go through treatment to learn to advocate for yourself. If you believe you're not getting something you think you should, ask for it. If they say no, ask why.  Same applies for any information provided that you don't understand. Ask questions...what does this mean for me? is always a good one to have in your back pocket.  But also go to the OCC website ovariancanada.org and use the resources there to learn more about this disease. And if you haven't yet, order the booklet By Your Side. It's a helpful tool to guide you through diagnosis and treatment.  

As for the hair loss. I was highly allergic to Taxel which is the drug combined with Carboplatin in most first-line chemo so they switched me to Gemcitabine.  It doesn't have a hair loss side effect. That's how I ended up keeping my hair.  If you have head sores and such, use the search function to see if anyone else has had similar experience and any tips they have to relieve the symptom or start a discussion on that one.  

And so glad your son is on the mend and it wasn't Covid related.  I can only imagine the extra challenge our community has where there are children at home and trying to avoid their germs when immunity levels are low. Yes, you're right. I have just the one...a son who's 33 now so that was never an issue for me. My biggest challenge is not seeing him since last Christmas. He's in Alberta too...Edmonton to be exact....and travel still too risky.  Soon though, I hope.  

albertan

Thank you for the reply @Fearless - Vol Modand good luck with the trial.

Bluebird

Hi @albertan...I also did the ACE program here..was excellent...(ACE is Alberta Cancer exercise for those who may be reading but dont  know)  I finished my chemo 2 years ago..and finished maintenance drug Avastin 1 year ago...as far as seeing my oncologist...she was also my surgeon...I saw her for my initial consultation and treatment..then I would just see my clinic nurse and nurse practitioner pre-chemo..my oncologist went on maternity leave toward the end of my chemo so I didnt see her again until my maintenance drug was done...there was always an oncologist covering for mine but never had to see them...now with every surveillance check up I see the oncologist.  I cant complain..I really have an amazing team..and I havent had blood work or CT scan since I finished my chemo...only if I start having symptoms again...its all good..

albertan

Hi @Bluebird, glad to hear you are doing well.As for communication with doctor, l got some tips on Thursday and also from today's Symposium sessions/networking.

Bluebird

@albertan..that's great...I was going to ask how today's symposium went..I missed today's.. hope to catch it tomorrow

gaylestorm

What time does teal thursday open at, and how do I join?

albertan

Hi @gaylestorm , I am new here (only my second time) but I believe this is it, you've done it! @Fearless - Vol Mod is the moderator, and a great one at that too.

Fearless

Thursday, October 28 and another live chat starting at 1pm EST. 

WELCOME TO THIS WEEK'S LIVE CHAT!

We're a small but mighty group, and growing each week which is just wonderful. It's great to have two options to communicate; the weekly live chat on Thursdays where you can stimulate immediate conversation about what ever topics we table...and the Discussion Topics that are open 7/24 for comment.  But I'm astonished in the increase in traffic on the site, and both returning members and  new member registrations since the Symposium.  

Looking forward to seeing who joins us today at 1 EST. For those new to the live chat, please feel free to pop in and out as convenient for you. And there is no pressure to engage. Yes, we'd love you to share your own experiences, or ask any questions you might have.  And sometime we don't even talk about cancer...that's ok too, as is just viewing the chat as it evolves over the next hour.  You can be as visible or invisible as you wish.  But if do wish to engage, make sure you have signed in.

One more reminder, especially since we have new members. The survey is still open for input until November 6. It is so important to ensure the voices of every woman in Canada who has had or has ovarian cancer are heard.  You can access the survey by clicking on the link below:   
http://ovariancanada.org/everywoman?_ga=2.101165505.1388478257.1603485139-81262107.1582745669

So let's get started.  Great to have you all with us....what's on your mind? Anything new to share?  How can we help?

Fearless

@albertan Welcome back and thanks for the compliment.   @gaylestorm Glad to have you with us. Welcome.  We'll give another minute or so and see who else joins and then get started.  

Fearless

@albertan @gaylestorm Just the three of us right now. I expect that might change. There's been a lot of traffic on OVdialogue this morning.  What would you ladies like to talk about today?

CountryLiving

Good afternoon teal sisters

Fearless

@CountryLiving Great to see you back with us today. How are you?

Fearless

@Readersmaven @kattie666 I see you're both back today as well. Hope you're both well.  

cbot

Hello Teal Sisters

Readersmaven

Afternoon all! Hope everyone is well, cool day here in ON.

 I do have one question for another who had neuropathy from chemo and then had a recurrence. Did you do anything differently during treatment to help? I'm 6 months out from frontline and neuropathy has really improved but my ca125 has been going up. I have a scan scheduled and I'm hoping for the best but...

If news is not good, I'd like to be prepared to do whatever I can to not have it as severe.

kattie666

Hello everyone.  I hope everyone is having their best day.  I am 3 weeks out from my last chemo and have been on an emotional rollercoaster.  Tomorrow I have bloodwork.  I am hoping it will ease my mind! 

cbot

Hi @Readersmaven. Hoping for the best for you. I found that cold packs on my hands and feet during chemo seemed to help lessen the neuropathy.

Fearless

@Readersmaven good thinking.  I had neuropathy from day 1 and like you it improved over time until I had a recurrence and went back into chemo and now it's back and not getting any better.  I'm on clinical trial so some of the naturopathic and otherwise suggestions made to me I can't use although I have started taking B12. Apparently that might help a bit.  But ostensibly my skin is numb from the knees down, stepping on something even very tiny causes enormous pain, and I get nighttime muscle cramping.  My oncologist tells me not much I can do. I think once Covid is over I'm going to ask for a referal to a neurologist though...nothing like a second opinion.

KarenBemi

Hi All, I am new to this chat.... so you keep chatting while I catch up.