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GloHo

@Coko
Thank you so much for sharing your journey!! 14 years - AND six grandchildren - AMAZING!!

Your post really resonated with me. Your words are truly inspiring and so full of wisdom. 

* Let go…don’t sweat the small stuff
* Day-by-day - adjust and adapt
* I have grown to become lovingly content and in charge of what I can and cannot take on day to day

* Good quality, low stress existence

* Life is a different pace

* The calm I have of accepting whatever comes have given me both quality and quantity of life I did not consider possible at the time of diagnosis

* Chin up, try to stay positive, feel everything you have to feel and then shuck the bad stuff as much as possible and keep on keepin’ on 

* Say I love you every chance to those you cherish

I see a lot of myself in some of your words and others I will aspire to achieve!!
Thank you, again, for sharing with us.

Strongwoman

I concur with @GloHo and her post for @Coko 
I also hope this will inspire some others who have not been on this forum in a lengthy time to write something,  It is inspiring for many to see how long many have been living with this disease and what their journeys have been like.  

Strongwoman

@JoanEG I have been thinking about you and wondering if you have in fact been able to get home yet.  I sure hope you have.  I did better healing there, myself.  If not, walk, walk, walk and get that gas out of you so that you can relieve some of that pressure inside.  It is hard journey but I am rooting for you to get home soon! 

JoanEG

@Strongwoman I came home yesterday.  It felt so nice to get those staples and IV out!  I have to go for bloodwork every 2 days to keep an eye on my magnesium level and of course I will try to stick to a low fibre diet.  I have a telephone appointment with my medical oncologist on Monday to discuss more chemo.  I had a great night’s sleep in my own bed and I’m drinking a really good cup of coffee…. Ahhhhh home!

Strongwoman

I am so happy that you are in the comfort of your own home now @JoanEG  
How did the staple removing go?  I had to ask for a couple of breaks when mine came out.  Ahh memories.
The IV removal is a big one too....not being tethered to something and taking it with you everywhere you need to go....= FREEDOM!!!
The low fibre diet is boring in some ways but is very helpful.  Do what you can. 
Sounds like you are being well taken care of.
I think we can all appreciate a great cup of coffee or tea.  So nice.  Rest, walk and eat to recover. 
I will check back in with you a few days from now unless you are posting earlier than that.  
Take care 

JoanEG

@Strongwoman thank you!

Strongwoman

I have gone off of the Tamoxifen. Spoke with my Onc Team yesterday about it.  I am to remain off both meds for 3-5 days before resuming taking Letrozole.  Today, I can say that the hot flashes have decreased as well as the abdominal pain.  For that I am thankful and feel it is the right decision for now.  I am glad I sought advice from pharmacist and team about it instead of trying to suffer through the side effects silently.  
Today, I had breakie with a friend at our local airport. It is a nice little spot and got busy very quickly. Of course the conversation flowed and time flew by. 
Went to visit my nephew and chatted with him.  He is going through so much with his diagnosis and experiencing outside pressures. I am thankful he feels comfortable talking with me about it all. He was in a better mind frame when I left so I felt better about that.
Saw my great niece and nephew too, briefly, but they are under 4 so it is adorably cute chatter.  Brought them some things too because that is what a good Auntie does.   
Now I am at home with a cup of tea, blanket on and catching up on this site.  I am tired today and possibly because my watch showed that I did not get any REM sleep and only a tiny bit of deep sleep. Hoping tonight is better.
Tomorrow, hubby and I are taking our widowed friend out for lunch. I will give her the stained glass skater my sister made for her.  The skater with the pattern is glass from an old church circa 1866.  The first slide of the skaters are no light behind them and the second one is light behind them. She is talented.  The pictures of the gnomes are not complete but wanted to share them.  Hope you enjoy the pics. 

melissa

@Strongwoman those stained glass ladies are really pretty, I especially like the 2nd to last one.
Glad to hear your side effects from Tamoxifen seem to be subsiding already. I commend you on your ability to " stick to your guns" a quality I still work on lol.

@JoanEG happy you are back in the comfort of your own home 
@GloHo hoping your clinical trial appointments for well today.

I'm off for treatment 2 with my osteopath friend

JoanEG

@Strongwoman I’m glad to hear your side effects are subsiding!  The stained glass is beautiful, thanks for sharing the pics!
@melissa thank you.  It is so good to be home!

melissa

It's very late

I've been thinking about legacy work quite a bit the past week and I know what I want to do. At least, I know a few things I want to do. I think it's funny cause I have always wanted to write. What's funny is that for reasons I won't get into for a few reasons, are one, they are boring and two I didn't properly learn how to write in high-school as I skipped an entire grade altogether. Not for reasons one may think..

Anywho, I want to write a story/ biography of parts of my life and yes, cancer. Of course if I actually do this I will need an editor cause my syntax is not the best. If all these socialites like Kim Kardashian can do it, then I most certainly can.

Since my best thoughts come to me at the end of the day I figure I will share the first paragraph with my teal sisters.

Not title yet
Chapter one

The year was probably somewhere between 1995 and 2000 which puts me between 15 and 18 years old. I can't remember the precise year, what I do remember is where I was and that is important. I was at the Jewish General Hospital in my hometown of Montreal, where, as I sit writing now is still my town. Back to 2000 I stood waiting for an elevator and as the doors opened I experienced my first true meaningful moment of empathy with a perfect stranger.

Lying on a stretcher inside the elevator was a young man going through cancer. Utterly evident at least to me it was as he possessed what I have now come to refer to as " the stigmata of cancer' no hair on his head or eyebrows. This moment was not just one I was having alone,  as our eyes met and held for a moment or two. Just long enough for him to notice the look of pity that was probably plastered all over my young naive face. However fleeting the moment was I knew he was sick, and he knew I knew it as well. 

He averted his eyes, slouched back and down further into the stretcher almost as to get away from this strange woman. He looks up to the ceiling to escape as the elevator doors close.
That moment left me feeling sad for this young man who was probably in his 20's or 30's. Needless to say I waited for the next elevator to arrive and I have never forgotten about that silent interaction.

Since then, I have been on the receiving end of the look I have him so many years ago... Perhaps a touch of foreshadowing?

GloHo

@JoanEG
So glad to hear you are home. So much better for the body and soul. Hope all is going well. 

GloHo

@Strongwoman
You are such a trooper and did try to tough it out. Sounds like you definitely made the right decision for YOU!! And the side effects are diminishing already! That has got to feel good both physically and mentally. 

Breakfast at the airport…that sounds great. Piqued my interest…I just checked the two in my area and there doesn’t seem to be anything like that available. Too bad…that would have been nice…different. 

So glad your nephew has you…and will talk to you about things. We all need that from time to time. Sounds like he needed you and you, being you, we’re able to ease his mind and talk through things with him. And seeing your great niece and nephew must have been fun. So cute at that age. 

Looks like creativity runs in the family! The stained glass skaters and gnomes are wonderful! 

GloHo

@melissa
Great start! That was over 40 years ago…that you are writing about it now is a testament to the impact that encounter had on you and that truly came through in your writing. Can’t wait for the next chapter!! 

melissa

@GloHo probably 1998/99, either way you're right. That moment stayed with me and he came rushing to my mind when I was diagnosed. It's funny what stays with us. I will probably edit it about 20 times before deciding on a final draft lol.

@JoanEG hope you're starting to feel better now that you're in the comfort of home and your sister to help and keep you company.

JoanEG

@GloHo and @melissa I am feeling so much better now I am home thank you!

GloHo

Ok…typical out-of-towners in Toronto. I was not prepared for the snow storm they had and, of course, the only footwear I had were loafers. Slipping and sliding all over the streets. I am a fast walker so had to adjust my pace to a lot slower! But slippery is slippery - no matter the pace! Made it through without falling on my arse! 🤣🤣 

Well…this clinical trial process is definitely different than the first one I went through! 

I finished all of my tests on Friday…have seen most of the results already and I do not see any obvious red flags in the reports. The reports have been sent off to the sponsor for review against their specific criteria. I should know early-ish on Monday if I am definitely in the trial or not. Then the fun begins…we will be in Toronto from Mon-Sat next week. I will write more specifics in the clinical trial section when I begin treatment. 

Something I did not know…you should carry your port card with you at all times. It is hospital policy to see the card before a CT. No one has ever asked to see my card so, unless I have my purse, I do not have it with me. Of course, I had decided to leave my purse and stuff in the hotel room…just brought my health card. One of the nurses said if I didn’t have my card, they wouldn’t be able to use the port. I actually jumped out of the bed because I didn’t know if I could withstand anymore vein poking! I showed them the many bruises I had from my visit to the hospital a couple of weeks ago. Anyway…I calmed down and told them they could look for a vein. Guess what…couldn’t find one. Almost didn’t get the CT but after much discussion among the nurses, techs and whoever else is in the CT room, they agreed to do it. 

Now about my port. I had it installed in Jan ‘23, so it hasn’t been in long. When I went to our hospital emerg a couple of weeks ago, they had trouble with the blood draw, but got it going.

Then, at PMH on Friday, they had trouble with the first blood draw but got it going. We left the needle in because I needed it for a CT a few hours later. So, get to CT and they can’t draw blood. Ended up taking the original one out and putting a new one in. Still had trouble but got it going. (This after them agreeing to even do the CT…good grief!). 

Now this brings me to the heparin vs saline lock debate. God…I thought we were over that a year ago. Guess what PMH uses…yep…heparin. When I mentioned that no one else was using heparin any more, my snooty little nurse told me that I should tell them to use heparin because it’s better than saline. But that does make one raise an eyebrow…if PMH is still using heparin why has everyone else switched to the saline lock? Money? Safety? Why don’t we get a choice? 

Of course, after my CT fiasco, I was in a time crunch to get to my next appointment across the road at Toronto General. So I slipped and slid as quickly as I could and just barely made my appointment time. Great…an ECHO after all the stress I had just been through with CT, I honestly wasn’t sure what that report was going to look like!! 🤣 Initial report looks ok to my untrained eye…phew. Tough day!!

melissa

Hello @Sandi6 how are you doing? How far along are you in your chemo? Have you reached the halfway point?

BellaDonna1959

@GloHo I'm sorry you went through that.  That was a lot to deal with! Your story reminded me of the day they left a line in when I had my chemo (before I got my port).  I went down to the CAT Scan floor and checked in and went to use the washroom.  So I'm sitting on the loo and suddenly I noticed blood spurting out of my arm - the line had partially come out.  So I'm desperately trying to finish up and wipe myself and I'm pressing the 'needs help' button.  A nurse comes to the door and is banging and yelling, 'You pressed the help button!' And I'm saying, 'I know, I need help, just one minute please' while I'm trying so hard to finish my #2 and wipe myself and not open the door and expose myself to the whole waiting room.  Meanwhile the blood spatters are on the wall, the floor, the toilet, me. Finally I finish and open the door and by now it looks like a crime scene in the bathroom with blood spatters everywhere.  She says crossly, "I was just about to leave!" and is clearly not in a good mood - and she wasn't friendly at all when I saw her earlier in this saga either. Then out of nowhere this angel appears and tells nurse #1 that she will take care of it. She comes in and stops the bleeding and her kindness and gentleness almost make me cry.  I thank her over & over as she helps me get out of my blood-spattered gown and into a fresh one.  Then they close that bathroom off and call for a cleaner for a bio-hazard.  Whew!  I had to laugh afterwards because what can you do? 

GloHo

@BellaDonna1959
OMG…that is too funny! 🤣🤣🤣 You must have been beside yourself at the time though! Glad you can look back and find the humour in it. 

Strongwoman

@melissa What you wrote sounds great and if you want to keep posting what you wrote, I would be happy to read it.  If you don't, I understand that too.  Mine is a work in progress as well and I think I have 52 pages currently.  I haven't written in a bit and plan too, today. I will look at chapter etc after I feel I have written what I need to.  It is something I work at now and then as I feel inspired to do so.  I think it is great to do this as there is not a lot on our type of cancer out there.
In fact, I have also said to my boys that I would not be surprised at all if Kate Middleton has Ovarian Cancer.  Based on her surgery and the little they have stated, it all sounds a little familiar.  Time will tell then, won't it.  If she does, my hope is that she brings more and more awareness around it and advocates the heck out of it!  
I am currently sitting in my kitchen where there is more light, catching up on the activities over the weekend and making potato soup for myself.  Doing laundry too which gets me out of my seat every so often.  Making the family a turkey pot pie for dinner.  I made myself a shell pasta casserole out of leftovers for tonight.  While I feel inspired, I always think, why not do that?  LOL
What are you up to this week?  Any appts or plans?
How is packing for your trip going?  Did you find some affordable insurance?

Strongwoman

GloHo said:

@Strongwoman
You are such a trooper and did try to tough it out. Sounds like you definitely made the right decision for YOU!! And the side effects are diminishing already! That has got to feel good both physically and mentally. 

Breakfast at the airport…that sounds great. Piqued my interest…I just checked the two in my area and there doesn’t seem to be anything like that available. Too bad…that would have been nice…different. 

So glad your nephew has you…and will talk to you about things. We all need that from time to time. Sounds like he needed you and you, being you, we’re able to ease his mind and talk through things with him. And seeing your great niece and nephew must have been fun. So cute at that age. 

Looks like creativity runs in the family! The stained glass skaters and gnomes are wonderful! 

Thank you @GloHo  Yes, I do my best to "listen to my body" and decide when enough is enough for me.  It is all individual isn't it?  I started back on the Letrozole today as the symptom have pretty much disappeared from the Tamoxifen.  
Yes, a little local airport that has a little cafe there.  Nice to try different places to eat, for sure!
My nephew, is like one of my own boys.  I am thankful every day for the relationship/bond we share.  I know not everyone has it.  Seeing little ones always makes me happy.  The way they talk and what their view for the day is, can be both exhilarating, funny and inspiring for me to change my outlook some days.
We took our widowed friend out for lunch on Saturday to a local place that is similar to the Distillery District in Toronto.  We arrived at 12:30pm and left at 4pm.  The 3 of us had not been together since February of 2023.  How time flies! We all promised we would not leave it as long for our next get together. Between appts and getting together with friends/family, one's calendar can get full quick.  I remember early on, jamming too much in too frequently and ended up exhausted.  Now I space them out and rotate them so it is easier on me.  
Thanks!  I was never good in art as a child so it is interesting to see it come out in different ways as an adult. Another reminder to try new things. 

Strongwoman

@GloHo Your story is funny!  I can just picture you slipping and sliding everywhere in that snow and trying to rush around getting to your next appt.  All the while, praying you don't fall and end up in some worse state. Mother Nature was being a fickle one last week, that is for sure!
It has been over a year since I had chemo so I did not know that they are not using Heparin most places now.  It is interesting how things change.  Like CT scans and no longer drinking a contrast dye anymore.  I have no idea what they do at my local hospital and may ask one of the nurses when I am there next, for curiosity sake.  
I was not aware that they could use the port for the CT scan either.  When I went in, I was informed they were unable to use it and had to access elsewhere. This results in them now booking me during the daytime to use the ultrasound to find a vein for it.  Again interesting noting the differences from place to place.
I am thankful the weather is better for you this week.  I will look forward to hearing about your updates regarding the trial and where you go from here. 
Take care of you in the meantime. 

Strongwoman

@BellaDonna1959 What a horrifying and embarrassing situation you found yourself in. It must have been traumatic at the time.  Thankful that a compassionate nurse came by and offered to attend to you instead. Nice to know there is humanity out there, isn't it.  
I am sure looking back parts of the story are comical.  Like when you stated the bathroom was now a "biohazard".  Which in all fairness, it was with all that blood. One wonders what the cleaner thought when they had to come and clean it up.  
How are you doing these days?

Strongwoman

@JoanEG This is a new week and you have had the weekend at home, thankfully.  How are you fairing out in the recovery? How is eating, ambulating etc going?  Bet that first shower felt like a wonderful gift eh?  
Let us know when you can how you are doing.  Rest up and get better.  

Strongwoman

@Sandi6 I am checking in to see how you are doing this week.  How are your spirits and outlook on things?  Any better than previously.  Let us know when you can.
Take care 

Strongwoman

To all, I have heard from @Eileen in a private message. She is still with us but is not on our forum often. She is spending the remaining of her days with family and focusing on that.  She has been through so much that I wish her peace, pain free passing to the other side.    

Strongwoman

@Coko Thank you again for posting what you did.  It has been inspiring for many of us. I hope you post again in the near future. 
Take care

JoanEG

@Strongwoman thanks for asking about me.  I’m doing well, eating lots and getting a good sleep in my own bed.  I am feeling guilty that my sister is making all my meals and doing everything around here.  I need to start doing the easy chores for myself!  I should be walking more but the weather hasn’t been great.  I was out for a couple of short walks around the yard yesterday and spent some time just sitting outside in the sun but today is back to cool and gloomy.

Strongwoman

@JoanEG You are doing what you can which is all that matters.  I, too, felt "useless" in a way while I watched people clean my house and prepare meals.  I truly could not have done it.  You will know when it is time and you will start with small insignificant chores and see how you feel.  The surgery does wipe you of energy.  It takes a bit for it to come back.  Walk inside if you can in place of outside.  The weather is a factor when walking esp if there is any risk of falling.  Glad to hear you sat outside for a bit. That sunshine does feel nice, doesn't it?  
Take care of you and we will chat again soon. 

Sandi6

@melissa I’m doing well, thanks. I finished my 3rd of 6 chemotherapy treatments and have been feeling ok. Still have this headache, cough, and sinus infection, but have a nasal spray now that will hopefully clear it up. I’m grateful that my white blood cell count was up to 2.5 on Tuesday (up from 1 on Thursday) so I was able to get this treatment. I really hope to keep the schedule so I’ll be done by the end of May. Then I’m planning on enjoying summer! Golf, if I can, and boating. Dance and live to the fullest. 

I enjoyed your 1st paragraph, Melissa. Well done! Such a beautiful project! I’d really love to write my story as well. 

Love reading everyone’s posts. Thanks for sharing. Much love to all 😘