English Community

Hi everyone - I hope you are enjoying a wonderful day, enjoying some sunshine (or snow... depending where you are in this wonderful country of ours!), and all of the things that bring joy into your lives! 

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

All the best!

-------------------------------------------

Hi all and happy Thursday. Can you believe it's November?! I heard festive music in a store the other day. Too soon!! I'm still recovering from the Halloween candy 🎃 😂

I'm posting a bit early as I'm at PMH in Toronto for my routine bloodwork and gyn-onc check in and may be in my appointment at 1pm. Sadly it takes 24 hours for the CA-125 so that always comes the next day (or Monday if it's a Friday appointment). That always annoys me as it's a crucial data point for my appointment that I would like to have in hand.  I wish we could get it done at a lab near us a day or two before the appointment. Actually, I know we can however you have to pay for it (last time I checked it was $40+tax). If however that's my main complaint right now, than I suppose I should be thankful. 

I do of course have my laundry list of items to discuss with my oncologist. It's never a blank page is it? I'm of course hoping all my results will be good 🤞

On the bright side I do get to sit and have my Starbucks Chai Latte so there's a plus 😊

Please drop a line and let me know how you are all doing out there. Not a day goes by that I'm not thinking of you strong, brave women. 
 
Oh and here's a post I saw the other day. It's a topic so near and dear to many of us. It made me laugh. I hope it does the same for you 😊

#Supportandencouragement

-------------------------------------------

Hello Alwayslearning - and all 

I'll be at PMH tomorrow 🤪

I hope I am on the teal tea -

I know that sounds silly  but I seem to struggle with this site.  

@pepperbee you are!!!

@pepperbee good luck at PMH tomorrow. I took the GO/TTC in today. It was much more relaxing than driving 😊

#Supportandencouragement

-------------------------------------------

Hello all and happy thursday!

@Alwayslearning hope your appointment went well and the labs are good. I completely agree what you wrote about CA125 result coming the next morning esp since it's such an imp part of the discussion at the oncologist appt. I feel the same. My appt at PMH is next week. 

@Keepingfaith my labs came back all good and my CA-125 was normal (received that at 3:50am this morning 😗). Normal for me is somewhere between 17-23. It was 19 so I'll take it! All good for me to continue with my Lynparza (Olaparib) and be seen in two months.

Per my separate note, good luck with your PMH appointments next week and please keep us posted.

#Supportandencouragement #Healthandwellness

@Alwayslearning that is so good to hear!!! Very happy that your results came good. Take good care and relax now :)

Hello - just checking that I'm on the Teal Tea thread 

Hi @pepperbee, I can confirm - you are in in the right spot for the Teal Tea for November!
Happy chatting! (You're doing great!)

Ok - thanks 

I don't seem to see any messages from the group. (   I had an insurance question but it has since been resolved by me ) 

Evening ladies.  I have yet to make a teal tea….🤦‍♀️ I always seem to be busy at that time of day. One day I will get there!  I found out yesterday my January CT scan is currently booked for May!  Can you believe that backlog!  I'm baffled, if that really happened that would be 8 months since my last CT scan post treatment, totally unacceptable in my opinion.  I'm sure coming closer to January I'll get a spot but I definitely need to ask my oncologist to act on this.

In other news my family is off to California on Sunday for some fun for the week.  A much needed vacation after all that this year has thrown at us.  My son is so excited to go on and adventure and Nintendoland of course!  He is a big gamer.  I hope we can make lots of memories for him and us on this holiday🤞.  

hope everyone has a great week ahead, keep fighting!💪🙏🏻🩵👊

@Meinvan I too tend to have conflicts with the Teal Tea's. They seem to always conflict with some appointment or another. I've made one and have registered for the November one which I'm looking forward to. 

As for your CT, yes that does seem a long way off. I found with PMH that if I call them every few days, they have cancellations and in a few cases were able to schedule me sooner. Not sure if the place where you get your scan has a 'wait list' you can be put on however I find that diligently calling can be very helpful. Hopefully as you mentioned, your oncologist can help bring it forward. 

Enjoy California. Post pics if you get a chance. Safe travels and enjoy!!!

#Treatmentandsideeffects #Supportandencouragement

Hello all,

I'm typing this from somewhere along the I-75 toward Florida. It's snowbird season! This is especially exciting for me as my parents live in Florida and this is the 6 month period of time that I get to spend with them. We moved them from their Florida house to a retirement community this past March and it was such a good decision for them. They are loving it. It's great because their meals are provided, there is a lot of social activity and they still get to escape to their own 2-bedroom apartment. The city they live in is a complete golf-cart community so they have the ability to go pretty much anywhere in their golf cart vs having to use a car. It's great. We own a house about 10 minutes from them so it's easy to slip over and see them on a regular basis. I haven't seen them since May so I'm definitely looking forward to our return. 

I'll return home in December for the holiday's plus I have PMH appointments. I always make the trip home every few months as those appointments are VERY important.

How is everyone doing out there? Did you all experience a blast of winter? What's the weather like on the West and East coasts of Canada. How about you prairie folks? I know that Eastern Ontario got a nasty blast of snow and cold weather. We broke a record from 1969 in the Toronto area for the most snow in November. There are some records you just don't want to break to be honest 😁

Drop a line and let us know how you are all doing. Hopefully we will get a return to "fall" weather for awhile. Seriously, December 21st is still along way away.🥶

I have never been to Florida, but I imagine that it is warm and beautiful. I am happy for you Alwayslearning! I am sure that your parents will enjoy spending time with you again. Even though I like the look of snow, it would be tiring to get around in it after a while. I was an art student in Toronto many years ago and the cold weather took a long time to get used to. 
Here on the west coast, we have typical periods of rain and wind with some surprising days of sunshine. Average temperature around 8 - 10 C. No snow yet and when it comes, it only lasts for a few days and is a mushy mess.  We tend to "rust" out here in the rainforest areas of BC, particularly here on the coast. 

I am still feeling well, plodding along on 400 mg of Lynparza. I am going strong with my fitness classes with strength training and Zumba as the main focus. I will have more bloodwork next week to check on how I am doing internally. Hopefully all is well there. 

Sending good wishes to you and all my teal sisters out there. I appreciate all of you.

Leslie 

@LeslieA it is definitely warm in Florida but funny when it's 18C and they are all in shorts and the Canadians are running around in shorts and Tshirts 😂. 
Love the sound of your winter weather. I could handle that. 
Glad to hear the Lynparza is going well. I asked the PA about the 600 vs 400mg effectiveness and got some weird response I didn't quite get, kind of like,"if you have a headache you can use Tylenol or xS Tylenol but they are both Tylenol". It was a bad analogy. I'm going to ask my oncologist. I just didn't have time this round. I did ask a doctor friend of mine and he said it's likely a trade off relative to side effects but he said he'd need to see research studies to better understand. 

I hope your appointment yields nothing but positive outcomes!!
#Healthandwellness#Treatmentandsideeffects#Supportandencouragement

@lbarr72 hopefully all that snow has melted. I agree. It arrived waaaaaaay too soon. 

I'm so impressed by the very talented Teal Sisters here. The fact you are painting Christmas cards is impressive. I too love the festive lights. My hubby put ours up before we left so I snuck in a few early days of lights. 

Glad your Olaparib continues well. It's always good to hear. Good luck with your Dec 11th. Wishing you good reports.

 #Treatmentandsideeffects#Supportandencouragement

Hello everyone and happy Thursday. I apologize for being tardy however I had a 1 hour window of time between meetings/appointment around 1pm (EST) and headed to the pool to swim some laps.

How is everyone doing out there? I'd love to hear updates from folks. I know we have some new members and Teal Thursday's are a great way to say hi and get connected in a casual way. I know we all have a lot going on. Some of us are feeling great and some of us are not feeling like ourselves. This cancer has a way of bringing the highs and lows but maybe we can help each other in a very simple way. What's one thing that made you smile today? For me, I was looking through some photo's to send to an electronic picture frame. Seeing all the pictures of my granddaughter brought a smile each and every time. I'd love to know what might have brought a smile to you today. 😊

#Healthandwellness #Supportandencouragement

@Alwayslearning, I missed the Thursday check in again….one day maybe I'll make it here on time, and the teal tuesdays.  We got back from California last Friday, since we got home my son has been sick, I took him to er on Monday as he wasn't really eating and had been in bed since we got home on Friday and that is totally not him even when he is sick he is usually up and about and still eating….so I knew he was sick.  He's an adhd'er and autism so he doesn't know rest, Lol.  Well, he has a little pneumonia, so antibiotics for a week.  I got a small cold, cough and congested but not as bad as him.🙏🏻.   That aside, my son had a great time, he handled everything so well and loved the trip.  He kept telling me how we needed this trip after this year, I was so happy to make memories for him that he will always have.  As much as I loved doing this trip with him and my husband I found myself at times getting tearful because I would let the dark thoughts enter the conversation in my head that I would then have to push away.  So I tried to focus on the fun in the happiest place on earth!  
'I had my appt with my oncologist when I got back and reminded her I hadn't received the info for hrd testing so I have been working on getting that done thru Myriad genetics.  I thought we were going to start the meds but she then said she will send me the test info and she wasn't concerned of me starting zejula more then 12 weeks post treatment and we could wait for the results first. As if negative then the side effects would out way the benefits.  So I guess I am going drug free for now until I find out my hrd results and go from there.  I'm will have bloodwork before the new year in hopes I get a ct scan in January to follow up my lung nodules.  I am still feeling pretty good, so fingers crossed for a long remission period.  I honestly scared of reoccurrence, I'm sure we all are.

I am still trying to get out walking everyday, have been a little lazy after the holiday as we were walking 20000 steps a day all week, I crashed when I got home. Lol. I did go out for a walk this morning and actually tried jogging short bursts, every other lamp post was my markers, I did about 5 rounds so I'm proud of that.  I'm not a runner at all, but it felt good to be able to do that!

hope everyone has a great weekend!

@Meinvan how fabulous are these photos. My hubby is born/raised Burlington and I asked him about Scrivener's. He knows of it and said he thought that picture was taken in the downtown area?? Also OMG you were in Paris when you were 17. How exciting. Plus you met Donald Sutherland. A Canadian icon. That's amazing. Your pictures made me smile too so thank you. 😊

@Alwayslearning yes it was downtown at Burlington Square.  Use to hang out around there a lot.  Looking back on those pictures also told me about a girl learning "Resilience".  My father had passed away Dec 1986, but this girl learnt how to push through and continue on each day and build a beautiful life for herself.

@Meinvan so cool. I was married in Burlington (St. Luke's Anglican Church on Ontario Street) and we had some of our wedding photos done in Village Square in downtown Burlington. We love Paradiso's restaurant there. A family favourite.

Yes you indeed have resilience considering the hills and hurdles you've had to overcome, even from a young age. 💕

#Supportandencouragement

@Meinvan ... what a fun trip you had. Great pictures!!! I LOVE your hubby's t-shirt. So perfect.  I love your sparkly blue ears as well 🩵

I hope your son is doing better now that he's on antibiotics and that you have recovered. The downside of travel is that there are so many "bugs" out there that it's so easy to pick things up. I hope you too are on the mend.

I completely understand your comment about your thoughts going to the "dark side". I imagine it happens to so many of us and it is perfectly normal when you consider all we've been through AND the uncertainty that comes with our diagnosis. That being said, good for you for pushing those aside and enjoying and living in the present. It's the best we can do when we know there are so many things to live for in the now!!!

I'm sorry it's taking so long for the Myriad HRD testing. You would think that process is simple and streamlined. Very frustrating I'm sure. I'm glad however that your oncologist was not concerned about timing relative to when you can start Zejula. Hang in there! Did you get a sense of how long it takes from taking the test to results being available? Regardless I too wish you nothing but a long remission period.

Good for you as well for getting some exercise in. And impressive on jogging. That is something my body does not like (particularly my knees). I was always told I had a "runners body". Try telling that to my lungs😂 

Keep us posted on your HRD testing. I hope that happens soon. Also good luck with the upcoming blood work. 🤞

#Supportandencouragement

@LeslieA what is is a great mindset, I have to try more of that.  I think the first year we are still in survival mode.  I have signed up with wellspring but haven't had time to sit down and check anything out yet.  I don't really think anything in person in BC, I could be wrong.  Thanks for the recommendations🙏🏻👊🩵

@LeslieA ... how much do I LOVE "what if" vs "what is". Thank you so much for sharing. A perfect mindset, reset. Hard at times as we all know however the explanatory words are so inspirational. I've written it down for future reference. 🩵❤️

Thank you for the YouTube recommendation as well and also a reminder of the good resources available through organizations such as "Wellspring".  There are also resources in the Library on this site. I know there's a previous webinar on recurrence if that is of help to anyone.

Stay strong Teal Sisters. 

#Supportandencouragement

@Alwayslearning yes son if finally starting to feel better. A co worker in the Toronto office made the shirt for my hubby, he was reluctant wearing it by my nagging worked and he got lots of compliments on it.  I bought the Ears when I entered the park, closest I could get to teal ears.  The lady on cash asked why I picked those ears and I told her why we came to Disney so she made us all a celebration badge to wear too.

my doctor said myriad taking about 4 weeks to get samples then results, I heard 2.5 months for results.  So I sit in limbo waiting, and sounds like they don't start the transfer of the tumor until they get paid up front, no one's called me yet about payment so still in limbo.  I guess the other reason my doctor isn't worried about starting before is that in that time frame it comes back then the drug wouldn't be useful anyways.

im not a jogger or a runner, but I have to start somewhere to keep my body moving.  We have a treadmill and elipitical in the basement too collecting dust.  lol😂

@Meinvan well how lovely that the Disney employee made you the celebration badges. That's why Disney is always rated so high for customer service.

Thanks for the information on Myriad. I know how frustrating this must be from a timeline perspective and because testing is inconsistent across the provinces in terms of what is/isn't covered. I understand the advocacy folks at OCC are trying to influence consistency in a number of areas around support of ovarian cancer including genetic testing like HRD. Let's hope their efforts are successful albeit I know they have hills to climb to get the right voices and alignment of support (I'm sure cost is some of the challenge). 🤞

#Treatmentandsideeffects