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Hi everyone - I hope you are enjoying a wonderful day, enjoying some sunshine, the amazing fall weather and colours, and all of the things that bring joy into your lives! 

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

All the best!

Hello all,

It's a sunny day here by Lake Erie. We live in a cottage area so this is the time of year where it gets very quiet. Not a bad thing 😁.  I saw this today and thought of all of you. Please be proud of yourselves for all you have endured. You are warriors ❤️ Anyone online to connect today?

Good afternoon@Alwayslearning and everyone.  It is a rainy day here in my part of Vancouver Island.  It was desperately needed and I was so ready for fall!  A sweet story from yesterday.  I was having a bad day.  Throwing a pity party for myself because I got put on blood pressure medication.  Sitting by myself thinking old age is a beotch.  Then I got a text from my Granddaughter that turned my whole day around.  My 11 year old great grandson's teacher had sent her an email with the following attachments.

@JoanEG … well THAT clearly says it all (I'm typing this with tears in my eyes by the way). ❤️

#Supportandencouragement

@Alwayslearning yes it had me crying like a baby.  He is an amazing young man who always "clears the clouds from my head" and fills my heart with love and gratitude.

Very touching Joan. What a lovely tribute to you!

@LeslieA I have a special bond with this kid.  

@JoanEG I was thinking you should print and frame it so you can put it in your house and remind yourself that not all hero's wear capes 🩵❤️

That's a beautiful story  Joan ❤️

@sherrygroenendyk it is isn't it.  Definitely heart warming.

@JoanEG so sweet, you are blessed 🙏🏻

@Meinvan thank you, I truly am!

I know it's only Monday but had my appt with my oncologist today.  She said we will repeat a ct scan in 3 months, so January just to monitor the lung nodules that have been present since first scan and so far look stable…she said one more stable scan then will go to every 6 months I think to monitor them.  She also said she is one that does like to monitor labs and ca125 every 3 months too.  She talked about getting me the info for HRD testing as we have to do it privately usually thru myriad, in the states I think.  So waiting to find out more on that.  I found out I did have 1 genetic mutation, but there is no real drug targeted to that one.  It's NF1, if anyone else had heard about it.  She did offer me to do Niraparib, so now I need to decide on that….its such a nerve wracking decision, I really worry about the side effects, but I also know we will be monitored closely, she said weekly labs at first and we can start at a middle dose and adjust dose if we need too, or go off completely if it's causing too many issues.  She has given me some time to decide.  What are the side effects most people have had from Niraparib?  Did side effects last long?  How long have you gone without recurrence?  TIA my teal sisters🩵🙏🏻

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Hello @Meinvan 

I had my appt yesterday as well. I have gotten funding to start niraparib - PMH is sending it to me tomorrow so I will start them Wednesday or Thursday.  I will let you know about my side effects.  I am being monitored every Friday for the first while (I have to look at my notes for how long)  i believe it's best to start on Zejula within 8-12 weeks post last chemo? I also had some input on HRD testing - maybe Myriad were just very busy and it's not the norm but my results took 2 and a half months to get.  But maybe that wouldn't be a problem for you if you started on the Zejula then you're covered if you are positive - obviously just my thoughts not medical advice.  From what I was told yesterday by my PA, the side effects were not as scary as what I've read on the internet - but she said people  reacts differently.   I will be following your thread as I'm interested in side effects as well.  I wish you clarity while making your decision - it's so complicated but I got such valuable info from the Teal ladies. 

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@pepperbee thanks. What dose of niraparib are you starting on?  Can I ask what the cost of myriad testing was?  My dr said about $2k?  I'm hoping to go away on a 4 day trip with my hubby and son soon, once my son gets his passport….delayed due to needing new birth certificate and postal strike….so hoping it's before I start on PARP.  I hope I can make this happen…..let me know how you do on the PARP.  You can always dm me.  🙏🏻 

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Hello Meinvan 

I am  starting at 200mg. 
Yes, it was $2000 to have the HRD testing done.  I was told the government used to pay but they stopped recently 

I go to my first Zejula appointment next Friday (17) so I'll let you know what my blood work is like 

Wishing you well

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@pepperbee I'm so glad you got the funding. I also LOVE that PMH will send your medications to your home. I live over 3 hours from PMH so being able to have medication delivered to my door is an amazing service. For Lynparza (Olaparib), I was monitored every two weeks for the first 3 months. Then it went monthly and then every two months. I'm 14 months in and it's still every 2 months. While I can't speak to Niraparib I can say that the side effects from Lynparza (Olaparib) seem to vary a lot from person to person so expect this may be the case too with Niraparib. I am part of a Facebook Lynparza group where I watch and learn. The only "common" side effect seems to be fatigue/nausea which dissipated for most people after a few months. For me it took 2 months but it was manageable with Ginger Gravol. I don't know about Niraparib but I did learn that if side effects from Lynparza were too much, they were able to drop the dosage. My sense is that the majority of people in the FB Lynparza group are not on the full dosage. So perhaps for both of you it may be worth asking about dosage changes to offset side effects.

As an aside, I did a search on this site (search bar at top) and typed in Niraparib. A lot of threads came up. @Meinvan you may want to try that too. There may be some information from Teal Sisters that is of value/interest. You could also start a new discussion with that as a title if you want to get a more recent thread/discussion going. Good luck to you both and keep us posted as things progress.🤞

#Treatmentandsideeffects

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@Meinvan thanks for sharing your progress. Looks like you have a good plan in place relative to monitoring. My gyn oncologist is also not one to repeat CT scans unless there are "reasons" (e.g., bloodwork is wonky and/or other symptoms). It was 6 months following my last chemo and start of my Lynparza before she did my first CT scan. I'm monitored every 2 months for bloods/CA125 as part of my Lynparza plan and I'm 14 months into that. I wish I could speak to Niraparib however I know there are others in this forum who have experience with that so will leave that to them.

As for HRD testing, again look what I just learned. I did not realize the testing was not publicly funded in Canada (I did a google search on that one). That is so frustrating. It should be when you couple it with an ovarian cancer diagnosis. It's something we need to raise our voices for with health Canada. My search said Life Labs and DynaCare offer genetic testing in Canada. Not sure if that's the same as HRD testing.  For those who have had this done, where did you get the testing?

Please keep us posted as your decisions unfold and/or if you have additional questions. Strength and hugs. 🩵

#Supportandencouragement #Treatmentandsideeffects

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@Alwayslearning I did do a little browsing thru the files interesting to go back to 2017 reading comments about the new drug,side effects, drug trail. Etc…. I would like to know the ladies that had the med the first year it came out and how they have done….  Hrd testing, I was also told there is a blood test that does some kind of hrd but may give something else similar, my doctor was going to find out and send them both to me to decide what we want to do.  Maybe that is thru life labs or Dynacare?  I'll let u know when I find out more….

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I was put on Zejula at the end of my Chemotherapy treatment. This drug made me feel like I had cancer and made my brain feel very off. I went off this treatment after two months and felt like my old self….but not my old self before cancer. Many months after when seeing my Oncologist he said so I have new information regarding Zejula and they found it may cause cancer. I told him I went off it after two months and his reply was well then we don’t have to worry about that then. It was the same way with all these neuropathy drugs they tried me on. They all made my brain feel weird and didn’t give me any relief. I suffer with neuropathy and have done laser physio, physio and acupuncture. Used every cream I could find for relief but nothing really helps. Kalaya extra strength 6 x active relief cream and voltaren helps a little at least while messaging your feet. Keep the faith.
Sent from my iPad

@keep the faith thanks for the reply.  When did you take zejula?  Was it at when it first started being used for OC?  I know that it is closely monitored with lab work to watch for abnormalities and we can come off of it at anytime which is good, especially if not tolerated.  I think I have nothing to loss in trying to find the right dose and if it works and give me more time off of chemotherapy then it's doing it's job.🤞

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I started Zejula about two months after chemotherapy was completed. I had chemo then complete hysterectomy and my gallbladder removed at the same time. Then had further chemo and then was offered to try Zejula. I was able to get it covered by extended pharmacy in Ottawa. I was told it was close to 9thousand dollars a month. It didn’t work out for me but I would try anything that may give me extended time. It wasn’t worth staying on it due to side effects. I am monitor with ct scans of lungs and abdomen every three months. I also would have the c125 blood test done that same day. My cancer metastasized and now lymph nodes are growing so doing radiation to treat. Radiation to abdomen has side effects but mostly bowel issues and some back pain. I would do a thing to stay well and I keep doing what my oncologist and radiation Doctor recommend. My Oncologist says your cancer is not curable but treatable. I feel like it’s a dark cloud over my head all the time and I keep praying for good results and will do what’s best for me. Living with neuropathy you never seem to get a break. I can remember when I didn’t even know I had feet. Keep the faith, never give up hope.
Sent from my iPad

@keep the faith thank you for sharing all your information. I'm also so sorry to hear about your continuing neuropathy. I had it pretty badly after my first chemo treatment and I couldn't stand for longer than 30 seconds. Thankfully my oncologist decreased my infusion dosages to address this plus I used ice on my hands/feet during my infusions to try and help. There's mixed information on whether that does anything however for me, the neuropathy slower went away during my following infusions. I was told by one gyn-onc to consider B12 or B6. I'm not sure if you discussed that with your medical team. I'm sure you have since it sounds like you've tried so many things.

Thank you as well for sharing your experience with Zejula. The more we share, the more educated we all are in this forum.

I hope that your radiation treatments go well. You have definitely been through a lot. I appreciate your continued support to others to "keep the faith". I'm sending hugs your way for you in that regard as well.

#Supportandencouragement #Treatmentandsideeffects

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Hello @meinvan. I have been thinking of you and your Zejula / HRD testing  decision.  
I waited to update you on my Zejula experience- I've now been taking it for 7 weeks.  So far, I've had a bit of constipation but, thanks to Restoralax, that is fine now.   My BP has gone up a bit - at my appointment yesterday, they said they were not too concerned about my numbers  yet.  I do take a diuretic for borderline BP so I take my BP a lot and know my numbers.  I expect I am still new to this drug and I will experienced more side effects.  I don't feel too tired.   For now, I will continue on with it.   
I hope you worked through your decisions.  I also hope you got to go on your trip.   

Wishing everyone well 

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@Meinvan

when will I learn to proof read before I press send!!! I have not been on it 7 weeks - it's been 17 days!! Sorry - that's a big difference!! 

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@pepperbee. I do it all the time lol.  Then wonder what people must think of me!  🤦‍♀️. What dose zejula did you go on to start?

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200mg per day 

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@pepperbee glad to hear things are going fairly well so far for you.  Keep me updated.  I haven't got the info for hrd testing yet, I guess I will get it on my appt on the 14th or I'll have to remind her.  Still trying to plan the trip….its in the works 

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@pepperbee I'm just catching up on past posts as I've been out of pocket for about three weeks with some travel. I'm glad to hear that you are doing well on the Zejula. Is 200mg the full dosage? I'm just curious. I'm glad even 17 days in that your side effects have been manageable. That, I hope, is a very positive sign. I know when I started with Lynparza (Olaparib) my side effects were almost instantaneous albiet for me manageable (nausea and fatigue). I'm keeping my fingers crossed that you will do well on this.

@Meinvan I'm looking forward to hearing about your trip when it's planned.

#Treatmentandsideeffects #Supportandencouragement

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Hello @alwayslearning.  I'm glad you are back from your trip all safe  and sound. I'm sure it was fun.  

I believe some people start Zejula at 300mg - i think it goes by weight.  Since I last posted, my sleep has become very problematic- I wake up for 3 hours every night - it's so frustrating. I'm able to get sleep after that but I feel I'm wasting my day.  I've been offered my job back and I can't even consider it with my sleep pattern as it is now.   I'm actually at the PMH clinic now and hope they have a solution for me.  

Happy Halloween all - such a fun night  

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Thanks @pepperbee ... it was a great trip. Looking back I can't believe how much we did!! I just managed to finish all our laundry. That only took a few days.

Sorry to hear about the sleep issues. I've had that since my diagnosis last year. I finally spoke to my GP yesterday as there are some times I go three days in a row without more than 2 hours of sleep a night. We all know sleep is so important for our health. She prescribed some "non-addictive" sleeping pills that I can take "as needed". They will be a last resort to for me however I have them in my arsenal now if I need them.

Is your medical team providing the support you need to remain on leave from your job? I'm hope so as I would agree with you that without solid sleep management, a return to work would be difficult. I'm hoping the PMH team were able to help. Let us know.

#Supportandencouragement

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Hello all. I'm posting this as I prepare for some upcoming travels. My hubby and I are off to Europe for some adventures. I'm feeling good, so we are taking the time to get some vacay in! We are taking a 9-day cruise with some friends and then spending some time in Portugal. I'll be checking in to see how everyone is doing whilst I'm travelling and of course, will do my best to stay connected with everyone. I hope you are all finding some joy, as big or as small as it may be, in your corner of the world. We are all fighting our personal battles but I see each of you lending so much support to each other. And for that, I'm truly thankful. 🩵

#Supportandencouragement #Anythingbutcancer

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That's fabulous.  Have a great time.  Hubby and I spent 5 weeks in Portugal last fall and loved every minute of it.  Beautiful country.   Our favourite things were the old forts and all the history surrounding them ❤️

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Thanks @sherrygroenendyk … any favourites in Porto?

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@Alwayslearning have a wonderful vacay!  

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@JoanEG thanks!!

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@Alwayslearning oh Portugal and cruise sounds wonderful.  We are hoping to do a short trip soon with our son, after all we have gone thru this year we deserve it.  Big vacay for him will be going to Japan at some point, it's his dream trip.  Talking vacations, do you get health insurance for travelling?  Do we even qualify for insurance when travelling?  Send lots of pictures from all the ports!

its thanksgiving 🦃 weekend, and im so thankful that i found this group and for each and everyone of you being here even on the hard days.🩵🙏🏻💪

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@Meinvan you definitely deserve a vacay!!

I did a post last year I believe, about travel insurance. If you search for it on this site I'm sure it will pop up. For myself, because I'm "stable" per the definition of my health insurance/emergency travel policy, I'm covered under my existing policy. That was not the case last year when I was travelling and thus I sought out other insurance. Those learnings  are what I shared in that post. 
I will post pics as I can. 
Happy gobble gobble weekend everyone 🦃. We are travelling but the rest of our family are gathered at our cottage for some family time.

I hope you all have a restful weekend in whatever form it takes. Enjoy the calories!! You've earned them.❤️😊

#Supportandencouragement#Anythingbutcancer
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Have a wonderful time Always Learning. I love knowing that people are travelling and feeling good. 

 I am planning a trip to Vietnam in February. The tour is all-inclusive (Approach Tours) with travel/medical insurance provided by Manulife. I believe I qualify, as they require medical stability for 3 months prior to the trip. I listened to the travel insurance presentation by Blue Cross and noticed that they had coverage criteria about taking PARP inhibitors that I didn't see in the Manulife document. I had better check about this. 

I hope my health continues to be stable as I adjust to using Lynparza (day 12 and no symptoms that I am aware of). I am back at the gym 3-4 times a week.  

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@Alwayslearning thanks I will have a look at travel posts.

@LeslieA glad to hear lynparza is going well for you. Great for getting back to the gym.  I'm trying to get out walking everyday keep thinking I need to look into some kind of training to help my overall health and wellness.

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Yes, walking is certainly good for us. Another area to consider is building more muscle through resistance or strength training. The treatments have no doubt messed with our bone health, so I read that these types of exercises might offset this issue. I have started back to the gym doing strength training classes using free weights and plates to bring back some strength and tone I lost over the months. It is not easy, but so beneficial. And I actually feel energized and stress-free after a session. I will be interested to see my bloodwork as I go along with Lynparza, hoping that this form of exercise keeps my red & white blood cell levels healthy.   

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@brendalee I am.

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Yes BRCA 2 positive with no genetic links to family. 

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Hey@LeslieA. I'm very happy to hear you are doing well on the Lynparza.  I haven't had any issues with it other than some weight gain but I lost so much during chemo that I needed to put it back on.  

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Your body was probably recalibrating and trying to get you back to your original weight. I know that I have gained back the 12 pounds I lost during the illness phase. 

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@LeslieA that trip sounds fun!! Yes each travel insurance provider has their own exclusions and rules so always important to double check.

I'm thrilled you are day 12 of Lynparza and no side effects  - that's awesome.  👏. Are you on full dosage (600mg day)?

#Anythingbutcancer#Treatmentandsideeffects 

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Yes, I am on the full dosage (600 mg). I get a bit of heartburn from time to time, but otherwise I don't have any other issues. 

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@LeslieA … that's amazing if you are side effects free at full dosage. 👏

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I have been on full dose sine June 2024 without any adverse effects.  I'm so happy you are handling it well also!

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I remember that you said that you were feeling fine on Lynparza which gave me encouragement that I might be as fortunate. My oncologist said that she had patients who got back to their regular life while on this medication, which was also helpful to know. 

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@LeslieA even with some side effects (and I'm on full dosage too - 14 months in), I had no issues getting back into the swing of things. It was not debilitating. So you are doing great as usual @JoanEG ⭐️⭐️

#Treatmentandsideeffects

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@JoanEG 👏👏👏👏👏

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Thank you yes, I am so relieved to have no bothersome side effects. 

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Hi all,

Just a reminder, if you get a chance, if you can lend your voices to one or all of the questions that I've posted on behalf of OCC. The questions relate to your experience with OVdialogue. As of today, there are THREE questions posted. You can find them in the Discussion Feed. There will be one more question posted next week.

Thank you to those that have taken the time already to respond. Your feedback is appreciated.  

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Bonjour and bienvenue from sunny Bordeaux, France. I hope you are all doing well. I'm sorry I'm late for yesterday's Teal Thursday but I was at sea and didn't have wifi. We are enjoying our European adventure. How was everyone's Thanksgivings? Did everyone over eat? Were you able to gather with friends & family? 
I'm wearing my teal bracelet through my travels. Hoping to bring some increased awareness to our cause. Stay strong Teal Sisters and I hope you get a chance to laugh today. It is after all, the best medicine. 

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Hello all,
I'm late for the chat as I was having my annual mammogram/boob MRI yesterday. They had a cancellation so called me in which was great otherwise I had to wait until January (which was two months later than it should have been). Is anyone else with the BRCA mutation are also part of the high risk breast cancer screening program? Do you get your annual scans? Personally I think they should do the mammogram at six months and the MRI 6 months later. Spread them out for more chance to catch something vs annually. That's how they do it in the U.S. apparently. I did ask my GP but she said they have to follow the "both at the same time" process (at least in Ontario). I am however thankful that the process exists. Okay enough about that. 

Did anyone attend the OCC virtual symposium on Tuesday/Wednesday? Gosh there was a lot of great information shared and so many inspiring Teal Sisters. I will admit it was a lot of information to digest so I'm looking forward to reviewing the materials again (at my simple pace 😁) when they are posted. 
is anyone doing anything fun for Halloween? I'm going trick or treating with my 2.5 yr old granddaughter ❤️. Picture attached of her Mini Mouse outfit. 
I'm looking forward to hearing from folks. I've been pretty absent the last few weeks, for which I apologize. I was traveling in Europe. I've attached a few pics. When we are feeling good it's great to try to normalize our lives, right!?

Hope you get to eat some fun treats tonight. Be well Teal Warriors. ❤️

#Anythingbutcancer #

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Alwayslearning,

   I am very pleased to know that you have been feeling well and travelling in Europe. I am hoping to be able to do a big trip in February, if my health continues to be stable. I attended the symposium as well and like you, I need to process all that information. I am not very science-minded but want to understand gene mutations better, therefore I will go over the slides again, as I believe they will be sent out to us. I felt hopeful about new developments in ovarian cancer diagnosis and patient care. There is still a long way to go, but good things are happening. I think I enjoyed the teal sisters' stories at the end of the symposium the most because they were so relatable. Their ideas about generating hope were relevant and what I needed on that day. 

Halloween on the west coast will be a wet, blustery one! Poor little kids as they go door to door! We enjoy seeing them! Love the picture of your adorable little granddaughter. I hope you enjoy the day with her. 

Leslie 

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@LeslieA thank you. I'm hopeful for you as well for your trip. Where are you thinking of going? The world is such a fun and interesting place. 

I am definitely not science-minded either and I did get lost a bit on some of the presentations however having the ability to revisit the materials I think will be helpful. I want to revisit in particular the session on HRD. Sadly I came in 15 minutes late from an appointment and missed important context. Like you, I continue to be hopeful about new developments and thankful that there are resources focused on this disease. It's clearly been WAY too long when you consider most of our treatment is still the same as it was 20+ years ago (with the exception of PARB inhibitors that came into play within the last 6 years or so). I too found the Teal Sisters' stories inspiring and such a reminder of the diversity of women impacted by this disease. 

I hope Halloween was fun. Our rain cleared thankfully however it was very windy here too. We had such fun with my granddaughter. She's 2 1/2 and was finally getting the idea that going to houses yielded treats!

Talk soon.

#Supportandencouragement 

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The trip I am planning is to Vietnam and Cambodia in February. It will be 3 weeks with Approach Tours from Montreal. I figure that my healthy window is open right now, so it is an opportunity to go somewhere special while I am able. Approach takes care of all the details including flights, tips, excursions, all meals and accommodation which is what I wanted. I am double- checking on flight cancellation insurance re: cancer recurrence/treatment emergency as I am not sure if that qualifies. Insurance is important, but what a hassle. 

After the last blood test, my doc decided to reduce the dose of Lynparza to 400 mg from 600. She said my kidneys were not flushing the meds out the way she hoped they would. (I have a stent in one, thanks to the tumour damaging my ureter, so I am not sure if that is the issue). So hopefully that will be the only adjustment as I need to be medically stable for 3 months prior to the trip. Interestingly, the doc said that reducing the dose does not change its effectiveness. I then wondered why we are started on the highest dose (with presumably an increased potential for side effects), if the lower dose works just as well?

Is it following the gold standard for treatment like a recipe book? 

Leslie 

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@LeslieA ... that sounds amazing! I've never been to that part of the world. Also nothing better than having it all planned for you. 

That's interesting about the dosage reduction and the doc's statement that "400 mg does not change its effectiveness". I'm not sure I understand that statement. I'm going to ask my gyn-onc when I see her this Thursday for my two month check in. I'd certainly like to understand as I'm on the max dosage and have been since last August. I follow a FB Lynparza group and I'd say that about 70% of folks are NOT on the max dosage as the side effects were too much. It's all so very interesting and almost a little "experimental" still from my perspective. I'll let you now what my gyn-onc has to say.

#Treatmentandsideeffects

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@LeslieA ... thanks. I have to believe there's a reason that I'm still on the "standard" 600mg daily dosage. It's definitely on my list to ask my oncologist on Thursday.

#Treatmentandsideeffects

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@Alwayslearning

I celebrated my 74th birthday last week.  Two years ago my prospects were scary!  I was in the eve of my first round of chemo and now here I am welcoming another trip around the sun!  
I attended the virtual symposium and will be reviewing the information.  I found it a little bitter sweet.  The first one I attended featured Strongwoman as one of the presenters.  She talked about legacy projects, she was the legacy project queen and left so many wonderful gifts for her family and friends.  She left us the gift of hope.

Here is a photo of me with my two oldest Great Grandkids with the gorgeous flower arrangement the brought me on my birthday.

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@JoanEG I LOVE that picture. How beautiful are those flowers and what lovely great grandchildren you have. Your smile clearly says it all. Happy 74th birthday to you!!! 

I understand your message regarding the Symposium being bittersweet. I was in continuous awe of Strongwoman and the energy she devoted to legacy gifts. She left a legacy with so many Teal Sisters as well. I hope she is looking down on us and seeing her continued impact even thought she's left this earthly plain.

I hope you continue to be well and keep up that wonderful smile!!!

#Supportandencouragement

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 Birthdays are extra special these days, aren't they Joan? Your picture with your grandchildren is delightful. Happy belated and hopefully many more trips around the sun! 
Leslie 

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@JoanEG. Happy 74th!  Glad you have a wonderful time celebrating. @Alwayslearning looks like you had a great trip!  Minnie Mouse is super cute, you are blessed. @LeslieA. Rainy Halloween here, kids didn't brave it until about 7 pm last night, but I only had 5 kids come by, somehow they kept skipping my house🤷🏼‍♀️ needless to say I have 3 bowls of candy left over! @lbarr72 sorry about the jays last night, hopefully tonight!

As for me, I am trying hard to make life normal post treatment, it's definitely hard sometimes when you feel aches and wonder if it's the cancer returning.  Keep having ache around liver area and upper back ache and that's getting in my head.  I see my GP on Monday to deal with my CPP-D forms, LTD is waiting for my oncologist appt on the 14th to start discussing return to work….ugh!  I must say that is scaring me too, the thought of going back to work and having to go off again when and if the cancer returns.  I don't speak to my oncologist till Nov 14th to discuss the PARP.  We are booked to go away Nov 9-14 just a short trip to test the waters.  So having these aches makes me worry, but I'm determined I'm going away while I can and feel if I don't do it I'll never do it.  Hope you know what I mean.  Anyways I suppose you all understand that fear of recurrence but trying to get over that and stay positive.  Hope everyone has a wonderful weekend, and go Jays go!🩵🙏🏻💪

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I appreciate you mentioning how buried emotions might be emerging now after the fight/flight stage of treatment has passed, lbarr72. That resonates for me, as I experience intense emotions and thoughts from time to time (when I am now feeling quite well and have reasons to be happy and more hopeful). They seem out of place, but perhaps not really when I consider that all my energy was devoted to surviving the sickness and treatment. Now they emerge and need to be processed in some way. I journal and draw but it's not enough. I also use a counsellor once a month, but might need it more often. I go to Zumba and shake my tail feather twice a week, which helps. It all takes time I guess. 

It is almost exactly one year ago that this illness nightmare began for me. It is interesting how the body remembers these anniversaries, particularly the medical invasions, the fear and the pain. 

 Then there are days when I am so grateful and I am back to my more positive self. I accept it all as it is part of my healing. 

Leslie 

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@LeslieA ... there are anniversaries we want to remember and then there are those we don't. Sadly I know each and every one of us remembers our "cancerversary". I also try to think of it as the anniversary of strength I didn't know I had, of love and support I'd perhaps forgotten was available to me and the hope that comes in small ways that perhaps I had been taking for granted.

I'm glad that we have all found each other. I can't imagine walking this path without each of you 🩵

#Supportandencouragement

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@Gratitude123 ... such true and wonderful sentiments. Thank you. 

Before my cancer diagnosis, I had been pondering how to engage in something from a volunteer perspective. Then boom, cancer diagnosis, surgery, treatment and the discovery of OCC and OVdialogue. My volunteer purpose was found. While not exactly the pathway to purpose I would have chosen, it has certainly been so very rewarding to engage with the Teal Sisters in this group. As the saying goes, "sometimes things happen for a reason."

As for the Jays, yes so very sad however what a journey they had. They united a country and they certainly demonstrated what being a team is all about. They should be very proud of their accomplishments. I know Canada is!!

#Supportandencouragement

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@lbarr72 well said!!!! ❤️🩵

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@Meinvan ... I hope you are enjoying that left over candy .😁

I wish I understood what "normal" was. Perhaps it's not even a word we should use anymore. Maybe it's more frustrating for us to try and get back to where we were when in reality, I'm not sure we ever will. That's not to say that we won't continue to do well and/or be considered NED or stable or whatever the word is for each of our situations. Perhaps what we are now looking for it a sense of calm or peace or something of that nature. Having been through our journey's has definitely redefined each of us. Any suggestions on a 'word' or 'concept' that people think would fit for us now? Perhaps our new "normal" is skeptical optimism?? I think for the sake of all our mental health's that over-dwelling can be our downfall. So perhaps it's about rising above and recognizing how tough we are. Maybe our new normal is that we are resilient and strong and capable of overcoming great challenges.

As for unexplained aches, I hear you. I have lower abdominal pain that likes to plague me. I have been keep track of it since last year. They've done CT's and my CA-125 has been in the acceptable zone. There doesn't seem to be an explanation for it but it is a constant worry for me. I'm trying however to not let it define me in terms of how I live my daily life. I did review this presentation that is in the library here on the OCC site. Perhaps it may be of some help?

 I hope you will have fun when you go on your short trip. You deserve that!!!

#Supportandencouragement

https://ovdialogue.ovariancanada.org/viewdocument/recurrence-making-sense-of-it-allhttps://ovdialogue.ovariancanada.org/viewdocument/recurrence-making-sense-of-it-all

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@Alwayslearning, yes I don't think there is a normal anymore, but I don't know what word I want to use for this part of the journey yet.  I don't know that any of us get over the constant fear of when the next recurrence will come especially in the quiet moments.  But still yes we are strong and resilient, I don't think we have been given any other choice to survive.  Keeping our minds and bodies busy with hobbies, chores, travel, friends and family making memories may ease the invasive thoughts and make us feel the " normal" we are searching for.

yes I'm excited for the trip, we haven't  travelled in 12 yrs.  Stressful too though.  It will hopefully be an adventure creating memories for my son.

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@Meinvan I looked back on recent posts but couldn't see if you had been able to participate in the recent Symposium (sorry if I missed it somewhere - it's probably right in front of my face!!). There was a presenter focused on "Return to Work". They spoke about a tool they'd developed to support return to work. Here's the link to their website if it's of any value to you in your situation.

https://www.cancerandwork.ca

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@Alwayslearning yes I did attend the symposium, I missed some of the talk on work as it was dinner time at the zoo.  I will have to go back and check it out.  I see my GP tomorrow to take my cpp-d forms in I hope he has some thoughts on going back to work time frame.

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@lbarr72 ... Happy Samhain. I've now learned a new word! I hope you got to see some fun costumes. I'm in SW Ontario too and went out last night with my 2 1/2 year old granddaughter and while it was very windy, it wasn't raining. Thank goodness.

Glad to hear your bone density results were 'stable'. I have osteopenia and get a bone density annually as a result. I missed mine last year while in treatment and thought I'd see a decline as I've also been very lax in terms of my muscle management. Thankfully my results from a few months ago showed I remained "stable" so I was happy for that. It's also one procedure that thankfully is sooooo easy to do so I appreciate that too. Let's hope your mammogram results come back normal as well (fingers crossed). 

Such great news on the text from the medical school. I'm sure your involvement will be such a great distraction from everything you've gone through. You are also going to be able to lend some great insight to the team.

I'm off to watch the Jays now...game 7. Nail biter. Let's Go Blue Jays.

#Supportandencouragement

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