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hope2022

@Fearless_Moderator
Thank you for staying on a little longer and responding. 
I know you have a lot going on yourself, but you always seem to remain so positive. 
I was wondering if you had ever thought of a clinical trial. I know you were in one somewhere along your journey. I understand there are no game changers in trials right now. 
Sorry for the Negative Nellie post today... 

Strongwoman

@Fearless_Moderator
 Saw your comment on Disability Tax Credit.  I completed, submitted and was accepted last year regarding this.  I had my Oncologist fill out the form.  I filled out as much as I could before giving it to her.  She was great and had it done very quickly.  She is the "centre" of my care so felt she was the best one to fill it in. Hope that helps some.
The CPP Disability Form on the other hand is a very different beast and is lengthy for both the application and form the doctor fills in separately.  
I have commented on both in other threads.  
Hope you have success in whomever you choose and that your receive a reply quickly.

Strongwoman

@GloHo
  Thank you for the kind words regarding my wrist.  I have seen the physio and she suspects like I do that I have fractured it.  I have a requisition to have it X-Rayed and will do my best to get it tomorrow.  Today was a bust on that!  First place I went to said "sorry not doing X-Rays, due to staff shortages, go X".  The next place I went to had a note on the door at 2pm stating that they had met capacity for the day and to come back tomorrow morning and that they stop taking people at 1pm during the week.  Unbelievable in some ways. So, will try my luck tomorrow, get a spot in the queue and will go do groceries while I wait for my time slot.  Wish me luck!

Strongwoman

@hope2022
  I am so sorry to hear what you are going through and what you are feeling. Don't apologize for being anything. Emotions are real and very real when they are happening to oneself. You are and should feel those feelings, it is normal in this process.  
  When you say "this journey is getting so hard", what does that mean to you?  If you would like to share.
I will share a podcast I found that I am still listening to. I am posting the one I started with which is on Cancer and Relationships.  It is where I am at right now. Analyzing what is going on around me and how I feel, is it normal, etc..
I found that it hit a lot of topics I have been rolling around in my head or thinking.  I have continued on from that point in the series into the Survivorship portions.  Perhaps have a look to see if there is a starting point where you may begin or if you are even interested.  I say, knowledge is key and one never knows where any of it will come from so embrace what comes our way....
Take care of you!
https://open.spotify.com/episode/1tYvAMQLMOqUarneVJG8KI?si=LO_mV3CmQ-q7h3GmXEVMfA

hope2022

@Strongwoman
Thank you for your post. I hope you are not in too much pain with your wrist and that it isn't broken. It sounds like you have had a few real difficult days.
I will check out the podcast. Thank you for that.

I think what I meant by it's getting so hard is that up until this point I have for the most part always felt quite hopeful with each treatment. I haven't felt that way lately and know I need to pull myself out of this slump I am in and stop dwelling on all this cancer stuff. It becomes all so consuming. 
I feel like a clinical trial is my last little ray of hope and somehow keeps me going. It might be a pipe dream at this point, but I seem to hanging on to that thought. 

Keeping busy and getting out of the house more is something I need to do more of. 

Your posts are inspiring and I wonder how you manage to stay focused and keep moving forward when you are on such a tough journey? 
Thanks again, and I will definitely check out the podcast.


 

Fearless

GOOD AFTERNOON, OR MORNING FOR THOSE IN THE WEST.  iT'S TIME FOR OUR WEEKLY ONLINE LIVE CHAT.

What's new with you?  We're always happy to hear your thoughts on anything.  We've had a gray, rainy stretch out where I am but some signs of better weather trying to break through the clouds today so that's put me back in my optimistic mood; optimistic we're going to have a lovely summer,, optimistic my son's plan to arrive late May and stay for at least month comes to fruition, optimistic that this devil inside me stabilizes with the latest cycle of Gemcitabine I started yesterday.  Heck my husband gave me a new iPhone 14 yesterday so I'm optimistic he'll maintain his optimism I'll be around to max the use of it.  

Speaking of my new toy, I activated face recognition this morning and didn't crack the screen LOL.  That's what I love about OVD.  Beyond the fact it's available to us 24/7 and we maintain all conversations so you can always pick up on what been talked about at any point in the past, you can't see me on Teal Thursdays sitting here, often, in my bathrobe, major bed-head, no makeup and slurping on a cup of tea that's getting cold quickly.  

And going back to "optimism" this site has had plenty of traffic around dying of late.  Why don't we make a point of thinking of something optimistic in our lives today.....something we aspire to that might be achievable...a bucket list item or maybe just something that will put some spring in our step and a smile on our faces.  Me, that's a trek down to Syracuse and Dinosaur BBQ to totally pig out on their deviled eggs, fried green tomatoes, brisket and baked beans and corn bread....mmmmm, need I go on.  

So I'm just going turn down the TV and when I come back for 1PM, let's get going gals.....

babs272

goodmorning from B.C. Sitting here in the chemo room today. All is good so far. It’s sunny and warm today. Hope all is doing well.

Fearless

Good morning @babs272 Great that you're able to join us from the chemo room.  Hope we can add some entertainment while you're otherwise occupied and that your treatment goes smoothly.  I'm back to chemo myself.  Just finished Day 1 Cycle 2 yesterday of Gemcitabine. It's a quickie....only 30 minutes.  

Fearless

Well ladies, 1:30pm and feeling a bit lonely here.  Even Babs272 has dropped off my screen so suspect her treatment or local w1f1 has gotten in the way.  Hope she's just having a snooze. 

So while I'm waiting to see if anyone joins us, I do want to draw your attention to my recent post about some upcoming changes to our homepage.  I am expecting you could have a new view as early as tomorrow or Monday.  Feel free to play around with it to get used the navigation and please do provide your comments, positive or negative.  There's still room to continue to enhance the view and some of the functionality if need be.  

babs272

I am here. I cannot snooze in the chemo room. Lol it’s nice watching all the girls here. A bd some male nurses too. I find they’re also nice and friendly. They sure know how to treat cancer patients. Not a scary place but a welcoming place.

babs272

It is sure quiet here today but busy where I am.

Fearless

Ours here in Kingston is very similar @babs272 I think it takes a special kind of nurse to support what goes on and the relationships we build with them over time.  We even have our volunteers back now that the hospitals have dropped most Covid protocols.  Nothing like "room" service for a can of gingerale or a packet of oatmeal cookies.  

Fearless

Well @babs272 guess it was just us today.  Either everyone else is busy readying gardens for planting or the topic "optimism" didn't turn anyone's crank today LOL.   Regardless, hope the rest of your treatment is uneventful and that it goes a way to helping you achieve your goal. 

To anyone else checking in post chat, have a great week and think about joining us next week.  I'll be back then.
Cheers until next Thursday....
  

babs272

You have a great weekend too,Fearless_moderator

GloHo

Hi everyone.

Had a busy day today. Started with my oncologist appointment followed by signing papers for the trial and studies I am going to be participating in. I will find out which drug(s) I've been randomized for next Thursday!! Had an ECG today and have a CT scheduled for tomorrow in relation to trial prescreening. They sure keep you busy!! We decided to stay in London and toot about town for the afternoon, so missed our chat today. I have decided to try to create and maintain an enclosed terrarium, so we headed to a nursery we just discovered last week in London to pick out some plants for the project. Love that place!

It was beautiful and sunny in London today. But on the drive home, we hit rain halfway, then the weather was a few degrees cooler at home (noticeably)! The promise of sunshine and warmer temps headed our way is helping to keep my spirits up. 

@Fearless_Moderator
Can't wait to see the new site. I have been using the private message function recently and have a suggestion in that regard. Can they add a "save draft" feature for messages? For some reason, I have lost messages while I was still in the middle of typing them out...don't know what I hit and I know it was my fault, but if there was a "save draft" function there, I could have salvaged at least some of the content. It's really hard to go back and start over...especially with the way my brain is working these days!! 

That's it for me today. Enjoy the upcoming week everyone.

mfallis

Hi @GloHo, 

Thank you for your input into your OVdialogue community. I will investigate whether there is a possibility to add a save draft option to private messages and get back to you as soon as possible. 

If you have any other comments, suggestions or feedback, feel free to send me a message (@mfallis). I'm here to help. 

I hope you're having a wonderful day. 

Tinazzie

Hello everyone!  I know I’m a tad early for the Teal Thursday chat 😊, but today is the Lady Ball event in Halifax and hubby and I have booked tickets for the event and are looking forward to attending this evening.  But, as some of you on treatment know, that without an afternoon siesta, evenings can be a potential write-off, so I hope to be snoozing (Atlantic time) while the chat is in progress, so that I can take it all in this evening.   

I do have a question that I’m hoping someone can help me with.  I’d like to know if Bloodwork Requisitions from one province are accepted in another.  I am on a regular 4-week treatment cycle.  This entails 3 weeks on an oral medication; 1 week off; and then bloodwork to check amongst other things, that my neutrophil counts have improved and safe enough for me to start the next cycle.  I am planning to travel to Ontario shortly and will need to have my bloodwork checked during this period.  My doctor has told me that I should be able to access healthcare in any province, but I’m not sure exactly how this will work. I have so many questions…and not sure who I can ask.  Eg. Where does one usually go to have bloodwork done in the GTA?  Will they accept my Nova Scotia Requisition?  Who gets the results? And how long does it usually take, etc. In NS, most of the bloodwork is done in the hospitals but if private labs do blood tests in Ontario, I’m not sure that I’ll be reimbursed for the same if I need to pay to get it done. 

Any advice or info on this subject will be much appreciated!  Thanks so much and have a great rest of the day!

P.s. I love the new look of the site!

Fearless

Welcome to our May 11 weekly online live chat.

We're just a few days to go so I'll say happy Mothers Day to all of us early.  Whether or not you're a Mother in the context of having a child or children to raise, I see all women as mothers on some level.  It must be the natural nurturing characteristics we're all born with and deploy as we move forward in our lives.  We nurture children, yes, but also other family, our spouses, our friends.  So I look at Sunday as an opportunity to honor all of us for our caring and love we share with those who are close to us.  



What do you think of the new look and feel of our OVdialogue site?  Have you had a chance to use it yet?  Any issue with functions, view?  Do let us know.  

Time now to get rolling.  It was great hearing from Tinazzie this morning. Lucky duck gets to go to the Ball in Halifax tonite.  I'll be expecting a report @Tinazzie.  Maybe some pictures?  I'm not sure who at the hospitals you could call for the info on blood tests but try contacting Life Labs. They have offices all over Ontario. They are a private testing service that used a lot here. Perhaps they're equipped to provide you with the services, although I expect on a Pay Direct basis.  Some of the other gals may have ideas for you.

Now, if you're there today please say hello and tell  us what's on your mind......

Strongwoman

First, let's give a BIG thanks to Marianne and the rest of the team for giving us our NEW look to our Forum.  If you are scrolling through the site and see anything you would like to comment or make a recommendation on, please refer back to Marianne's earlier post and get your references as to who to contact there.

Well Ladies it has been awhile for me.  I have been reading the interesting threads on HGSC and tumour markers, biomarkers and trials for all of you which sounds very promising and hopeful for those of you with HGSC and your treatments.  I wish you all well and hope you keep us updated along your journeys. I, personally, find the information very informative even though I don't have that type and love to read about all the wonderful advances that research/trials etc are making. It is amazing and why I have always had a love for science. We have come a very long way in a short period of time.  I know from my elderly Aunt and hearing of what my paternal Grandmother went through with her cancer and treatments versus now and huge steps have been made going forward!

Since speaking last, my recently widowed friend has found out that her biopsy has come back negative which is amazing and must be such a relief for both herself and her family. I am over the moon for her and her negative result.
My friend from my Hospice group is not doing well and as of last week requires more help at home.  I haven't heard from her in weeks.  I have finally figured out all the emotional garbage that I have been feeling around all of this and  have come to some conclusions that I am at peace with. One of the things that is a big takeaway for me is this, I understand the no or lack of communication on her part and why it is occurring but it feels like a sudden death on my side of things. I know this isn't about me and it is about her getting the care she needs which will allow her to cross into death her own way and pain free as they can give her. She is ready and she told me that more than once before the no communication.  My takeaway from it is to appoint a non family member to keep up with the communication to those that are concerned and want to be in the loop so that they don't experience the feelings I have been feeling when it is my time.  I care too much about what they will go through and think about it quite a lot and it weighs heavy on me. So in this regard, by experiencing this, my friend gave me this 'gift' to be able to walk through and process on my own before my own time comes. For that, I am eternally grateful and only wish her to have the best passage and that she will finally be at peace soon. We discussed so much in our time together and shared so much and I will never forget any of it.

I have decided to do the Hike for Hospice with another lady that attends our Palliative Group Day Program and am happy to announce that we are doing very well fundraising and will be able to give back to this program that has given all of us so much plus the opportunity to meet one another. We named the team after a team name we had while playing trivia pursuit and plan on dressing in hot pink stuff (still working on that end of things) for the day of.  It is going to be a great day and we both will be surrounded by loving people. We were also approached yesterday and asked if we would speak on the day of the event on Hospice and our experience and not sure what else yet as someone will be in touch soon.  We are getting excited and we are doing everything up "hot pink" for our friend and we are going to spread her energy all around us and to everyone to heal from wherever they are sitting right now.  I have decided not to tell my family/friends that we have been asked to do this and will surprise them the day of. Tomorrow we are off to paint at Play with Clay and going for Lunch together.  We are both looking forward to it.

As far as an update on myself, no changes. Saw Oncologist yesterday and bloodwork is showing my kidneys are holding so I am happy with that. CA 125 results won't be in until Friday or Monday and I pretty much expect them to be rising and if it is anything else well then it is a plus and positive thing. We have set up the next CT scan for the end of the month (routine 3 month marker to see what is going on inside) and the following week will have bloodwork and followup appt with the Oncologist. I had that X-ray on my wrist almost 2 wks ago and it took the Oncologist calling yesterday to get the results...thankfully no fracture.  As most of you, I have good and bad days. My last bad day, I almost thought I was having another partial bowel obstruction (small) but it passed but was not comfortable all day and my intestines burned. So glad it passed. Also hoping that is not a sign of anything to come. I have steadied with my weight and as I mentioned to the Oncologist, I seem to be in an Up-swing currently.  I will take it and ride it for however long it lasts. 

It is a beautiful day out and I managed to get some gardening done earlier in the week and am sore but expected that as well. I am focused on my Legacy work and am plugging along at it. I found this article last night and here is the link to the full article https://theconversation.com/gen-z-goes-retro-why-the-younger-generation-is-ditching-smartphones-for-dumb-phones-204992
Here is the part of the article I found interesting:
"Nostalgia is a complex emotion that involves reconnecting with the happy emotions of an idealized past by recalling positive memories."  This to me explains why doing the Legacy work is good for one's soul. Although the reason one is doing it is looked upon as something "dark" and "not wanting to be talked about", it turns out it is actually good for us and evokes positivity as we are working through it. So for those who have been holding back, read this, let it sink in and get going on your Legacy work. Anyone else working on things?
Had a lovely visit with my Aunt & Uncle on Tuesday and my youngest son came home early from work so he was able to join the conversation as well. I had a lovely lunch with my pregnant gf and her hubby on Monday and feel so blessed to have wonderful friends and family around me who want to spend time with me.

The weekend is supposed to be beautiful.....anyone have plans? My eldest is a sous chef at a golf course so he booked us in there for brunch and I am happy as I will then be able to see both my son's on Sunday. I am looking forward to feeling the sunshine on my face and the warmth of the sun in my bones.

To ALL the Mom's or soon to be Mom's......I wish you ALL a very Happy Mother's Day and hope you cherish the day itself, those around you and all the memories made that day.

I will have sent this off before driving home from an appt and will join in on the conversation once I get home.

For everyone out there today, how are you? How are you feeling right now in this moment? What would you like to discuss today?

Eileen

Good Morning. Woe love the look of the new site. Yes Happy Mothers Day to everyone as well. Wonderful weather. Sitting outside enjoying the much needed sun. Well for me the last 2 weeks my platelet count been low. So my day 8 last week was omitted and yesterday i found put it still hasn't quite reach 100 but they are just going to postpone it. It seems lile since i had that allergic reaction to those h pylori meds my platelet count dropped and has only been going up like 5 a week. Have an appointment with my gp to figure out if maybe the ppi i am on is causing my platelets to climb slowly. Was doing fine before that. And being that i was on a 5 weeks break should have risen considerably. Been trying to putter in my garden. For mothers day my kids are taking me out for brunch. Looking forward to that.

Strongwoman

@Eileen
  Is so nice to see the sun isn't it?  That is wonderful that you will be brunching with the kids on Mother's Day.  It does give one something to look forward to.
  Excuse my ignorance, what is "ppi"? 
  How are you feeling about the new plan of treatment?

Fearless

Hi @Eileen  Glad you're also pleased with the new look of our site.  There's just something "fresh" about it and at a perfect time as we transition from winter into spring.  Marianne couldn't have picked a better time to launch, eh?
Sorry to hear you're still struggling with your platelet count. It usually does rise back up with time but sometimes needs a booster of some kind or there is another medical condition affecting it.  At least you're working with your doctors on resolution.  

Yes, it's a glorious day out here too.  Sun shining, blue sky.  Hopefully it stays and gives us all a nice Mother's' Day weekend. We deserve it.  I won't have my son here but we'll celebrate when he does arrive in two weeks time.  He's decided to drive across country this time instead of flying.  Just finished his first leg from Calgary to Portage where he's broadcasting the Centennial hockey championship all week, then from Portage to here with a pit stop somewhere in between.  Depending on how I'm feeling I may drive back with him.  He'll be going through the US hitting states like Montana I'd love to experience on the way...and then fly back home.  Ah yes, lots of dreams for this summer but what would we do without our dreams.

Enjoy your brunch with the kids and your puttering in the garden.  Perfect day for that. 

Strongwoman

@Tinazzie
  Wonderful to be able to attend the event tonight and yes, I would definitely require a nap as well to be able to attend.  I do not have any knowledge of this event (ie/ program itinerary, etc).  If you would like to fill us all in, I would enjoy reading it.  Sounds like it will be a fun filled evening for a very good cause.  I agree with @Fearless_Moderator that if you have any pics you would like to post and share, I would enjoy seeing them as well.
  Well hoping your nap helped, that you have fun getting ready and you enjoy the evening and all it will have to offer you (evening out, conversation and a wonderful time with many).
  I am also unsure as to a blood requisition from province to province.  Would calling Ontario Health help at all?  Or if one of the ladies out there has an answer, even better. 

Fearless

@Strongwoman I have a very lengthy response to your first comments about being left out on communication as those we care for transition but the way the system here works I can't build it and answer anyone else simultaneously so I'll respond more post this chat.  You might find my thoughts useful.

So glad to hear the xray showed no fracture to your wrist.  It's amazing how much we need use of our hands and arms in daily life and each time I've had some problem, whether arthritic or accident, I've really been at a loss try in to carry on when even the smallest task is met with some pain.  

Wonderful to hear you're up to Hike for Hospice and all the other things you're engaged in.  Are you planning to do something for the Walk of Hope also this year? I think there's a team in the Guelph area?  Maybe walk in memory of our gal "ToughAsTeal".  

Anyway, don't rush getting back to join the chat.  Outside of you and Tinazzie, both offsite with your  comments, it's just Eileen and me.  So I"ll be closing out in the next few minutes.

Eileen

Ok i found issue with new site ive been trying to post comment. It will not go in i refresh and it back in the leave a comment area

Fearless

Well gals it's 2pm and time to say goodbye for the day.  

@tinazzie you might want to create a New Discussion to address our broader audience with your question about province to province testing processes. Seems we're not getting a lot of traffic with the nicer weather. 

@Strongwoman and @Eileen thanks for joining in today.

Everyone, enjoy Mother's Day this weekend no matter what that means to you and what you are doing.  And thanks again to our Marianne at OCC for her hard work on our refresh....and all the tweaks Ms Picky (me) will probably be sending her way.  

Until next week.....stay well, fill your cup half full with positivity and see you then.

  

Taita

Hi folks. Sorry I missed again today. I had successful cataract surgery on my right eye and I can’t really see to type. Just came back from my Lapelga shot because chemo was yesterday. Lots gappenjng. Hope everyone has a great weekend f 

Eileen

Ok i got a little note at the bottom now saying my comment will appear after it approved. Ok weird

Eileen

@Strongwoman sorry ppi are medications for suppressing gastric acid. I'm on rabeprazole. Their are multiple different ones too like pantoprazole. Etc. I am still on gemcitabine and Avastin. My oncologist said i can do up to 9 cycles. Well at tjr rate my platelet are increasing i might not get full cycles. But i am hopefully dr and i can figure this out. My gp is trying to speed up my appointment to have a gastric specialist see me. I see him this Monday.

Eileen

My gp that is not the gadtric specialist.