Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).

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  • Strongwoman
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    @mfallis That would be awesome if there is anything that may be useful.  Thank you and I am sure others say the same.
       We found out today our paralegal is leaving where she is working.  The owners there only let her notify her clients a week before she left even though they knew 5 wks ago.  Anyhow, she is so sweet and cares so much that she found us a colleague to take our case on and follow through with it.  She did not have to do that at all and is much appreciated.  We gave our permission for them to talk between themselves to be brought up to speed and if necessary in the future.  We will miss her and thanked her profusely for all she has done.  We wish her well in next endeavour!  There are kind and just people out there
  • Strongwoman
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    Well ladies time is ticking on and as I usually do, I will check in periodically to see if anyone comes on a bit later.  
      For all those that joined today.  Thank you and thank you for your input today.  This is how we move forward together! <3
  • mjmck21
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    @Strongwoman you are in good hands I'm sure but if things start to go south this org is one of the best in Ontario https://www.acto.ca/ 

  • Good Morning. Well I ended up in the hospital Mon. Severe right flank pain. It started in my back were my kidney was and the next day severe pain in between rib and hip radiating down. So 4 hr later got bad nees my cancer has progressed in just 2 and a half weeks from my sept 1 ct saying stable. To this past mon ct saying growth in them all and a new one along my lateral transending colon. Great. So take my copy of my ct right away to my cancer clinic next daoor to hospital and spoke with my nurse. So i had a apoint with her yesterday. I had my oldest daughter come with me because i was scared. Well during the time i developed severe left flank pain in my left now same area is right. My oncologist says it is definitely not coming from my tumors the pain. On either side she examined  me thoroughly. The ct did show alot of bowel in my colon. I said i saw that but strange because i actually been going likr 3 times almost daily over the weekend except mon nothing. Then tiny bit tues. But i started restorolax on mon. So long story short i spoke with my oncologist she said that gemcitibing no longer working
     My ca125 levels jumped up 500!!!! Wow.
    Ok so she mentioned that i can go on taxol.but being that i was allergic to it in my first treatment ok abraxane. But only as 1 regiment cannot be combined with avastan or any other.  She mentioned that it been shown that it has some good results going back on. She said we can hit it hard with lrh dosage and then have delays while your levels go back up. Or just do it at a reduced dosage and see how things go. Because ive bern on chemo now 2 and half yrs. I
    My bone marrow has definitely taking a hit. 
     She said oh course id lose my hair. Fine. So we will keep an eye on my ca125 markets and do a scan in 3 months. If that dont work she said we will go back to trying caeylx.. I had hand and foot syndrome the first time. So she wants to try these again first because the other chemo and she told me what they are she said dont have a very good success rate or outcome.
    So in the meantime i spoke to my family dr he said if my pain in both sides dont calm down to get my butt back to hospital. I could only do ph call apoint with him as he was fully booked up and he cannot really diagnose over the ph. I guess my biggest concern is bowel infection so. I did have some blood in my stool yesterday. Thats scary. Today looks ok. So this is where i am at as of now. Today finally warm outside last 2 days it dropped from like 28 to 15 in temp yikes. Fall is coming. Leaves all turning mostly and falling

     

  • On the other hand yes my daughter posted her engagment now on fb. Yaah. But she said they probably wont get married for at least 2 yrs. But if things get worse for me they do a ceremony before.
  • Taita
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    @Eileen
    That is a lot going on and I am so sorry to hear of all your pain.  Sometimes we definitely do have more questions then there are answers for.  Congratulations (formally) on your daughters engagement. Sounds like your doctors are on top of things and will find something to get you going on.  Enjoy some of this beautiful weather and soak up the sunshine. Always makes me feel better.  :)
  • Strongwoman
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    @Eileen Let's celebrate the good news first.  Did you find out how he proposed, what her reaction was, where etc?  That is all the exciting part of it, especially because she now has your ring.  :'(<3
    That is very thoughtful of them to say that so that you won't miss it should things not turn out well.  In the meantime, hopefully you can participate and hang on to the excitement they share.
      Now for you.  The flank pain is why I am on Hydromorph.  (In fact my palliative doctor called this week and inquired about my pain and if it is still being managed well.)  It is due to the location of the tumours and how they affect my bowels (mainly descending colon which is on the left) and the one that is causing the ureters to be essentially squished and become enlarged but not work as well.  Perhaps you can ask about that when you see someone next.  Your news must feel very heavy and disheartening. Have you lost faith in your team?  How are you doing with the news?  It must be difficult as it came as a surprise and you may not have had time to process fully.  As for the bowels, if Restoralax doesn't work there is another one that is prescription that they use for Palliative patients called Lactulose.  It is working better for me than the Restoralax.  
      With all that information thrown at you, have you had time to look at what they are suggesting and the pros/cons? Or what do things look like if you do nothing?  Food for thought as we all combat what quality of life means to each and everyone of us.  
      I feel for you and want to give you a BIG hug.  That is a lot to take in. We are here for you anytime!
  • Ok i tried to answer your questions @Strongwoman but after trying to post it. It said it has to be approved first before it will post.
  • Strongwoman
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    @Eileen I am looking into it and will get back to you
  • Ty @Strongwoman. No i haven't found out how he proposed yet. I will ask when their back. As for pain and what they can give me. Not much i am allergic to codiene. Hydromorpine. Morphine. Tramadol. Sulfa. Macrobid. Those pain drugs i get racing heart and severe stomach pain. Sweats. Chills. Fever etc. Yeah not fun. The tramadol big huge yellow blisters i break out. Of corse due to my gastric issue and chemo ibuprofen out of the question. But the dr did give me a toridol shot in the hospital on mon as he said he pretty sure 1 will be ok.
    No i havent lost faith in my team. My oncologist is so caring. Yeah the new hit me really hard. Like how can. 1 tumor develop and grow to 2.3 cm in w and half weeks. And of course we are going to be keeping an eye on the 3mm left lingular. Nodule they found on my lung. I reasked her that im now concerened that.  I mentioned to her that when i saw the big jump in my ca125 levels late sat from my blood work fri after meeting with her i was going to call but ended up in hospital on mon instead. That i thpught it could be for sure cancer.  She mentioned to my daughter what was found on sept 1ct and that she mentioned it normally doesn't spread to the lungs. But I still don't find that reassuring after the big jump. She mentioned that it could be from that 1 tumor that grew. The hospital didnt do a full chest abd and pelvic ct. As i only had pain my my right flank they only did a abd and pelvic. Yeah is scary to thing it could be cancer on my lung. Its going to be constantly their thinking about it.  I cried when i found out that it had progressed. I felt alone and scared. So it made me really happy that my oldest daughter said yes she will come with me to my oncologist apoint to discuss next options. I truly believe without chemo my tumors will grow exceedingly fast if this new one  that developed and grew this size in 2 weeks
    is any indication. My kids have their own life. Alot of times i feel left out and alone. I did mention to my oldest daughter i am stsrting to get lonely. Cannot go anywhete that costs money i dont have. On other hand my social worker reached out to organizations. We found a place that volunteers people for people who arent seniors yet. Yeah. To help wiyh housework preparing food. Etc. So i got signed up for that. Also signed a form so that my social worker has permission to check on my low income housing statis. And she also in the mentime found an organization that will help with rent subsidy. So filled out a form for that and got approved. So now they will help for 3 months to subsidize my rent and will reevalute it then. Opps just got a call from the hospital my req for more blood transfusion just came through i have to go to the lab today for blood work and then to hospital for nlood transfusion tomorrow at 9am
  • @Strongwoman Thanks for these words of inclusion and acceptance. I was a therapist in my pre-retirement and got used to hearing everything, so feel I have to be cognizant of the fact that others may not be as comfortable with some words as I am. For instance, I dislike the word “passed”, but understand that it is a sweeter word than “died”, which sounds pretty done and dusted. Words are so very important, aren’t they?
    My contribution today is that last night we read the results of Monday’s pre- chemo bloodwork. My CA 125 has gone down by over half and that was before the third chemo yesterday, so its working. I have a Catscan on Oct 6th, and after that mon onc will decide if I need more chemo. I posted a serious poem on the recurrence page, while I was in the chemo suite yesterday. Strongwoman invited me to post my favourite poem and as I told her, my favourites are the ones that I recite on stage between songs, that make people laugh. I am going to post one here today. I hope it brings smiles. If you are arachnophobic please scroll onwards. Hope everyone has a good day.

    The Spider’s Wedding

    This is a little story that to you I will tell, 
    About a lovely spider and her name was Daisy-Belle

    She was pretty, she was witty, she was hairy, she was big.
    She could sting at fifty paces, she could dance the dead-fly jig

    She could throw a thread across the room, and climb it upside - down
    And her webs they were the finest spun in all of Spider Town.

    But Daisy- Belle was lonely, for although life was sweet,
    Although she had good spider pals and lots of bugs to eat,
    She longed to hear the whisper of a million little feet.

    So Daisy- Belle, she dressed up fine, in her blackest spider clothes.
    She brushed the hairs along her legs and scrubbed her many toes.
    She tucked her stinger out of sight and polished up her nose
    And crept into the summer night to hunt up spider beaux.

    At first she couldn't find a one who measured to her glance,
    And Daisy-Belle despaired that she would ever have the chance
    To meet the perfect Spider Man and have that sweet romance.
    But then she found Tom Tottercob, and he began to prance,
    And round and round and back and forth began their mating dance.

    Tom jigged and swirled, pirouetted, twirled, wooed her and then did win her
    And he held her close as he tickled her toes, but he was a rank beginner.
    For at the sweet height of their mutual delight
     He felt the cold thrust of her stinger
    And Tom Tottercob, having done his job, became the wedding dinner.

    And Daisy- Belle said, well, now I’ve been wed
    And although the affair was hasty,
    I’ve expanded my girth, I’m soon to give birth, 
    And he was, after all
    Quite tasty…..



    If you smiled, it is my reward.


  • @Eileen I am so sorry to hear of your news about the pain and growth of tumour. It must be so scary for you. I will be thinking of you and hoping like heck that you get better news soon and continue to find support from your family. Sometimes they just don’t want to believe it. My friend’s middle son couldn’t accept it for months, but once he did, he left his job and moved back to her town and helped his sister help their mother and was there till the very end. He even made her a coffin, which she loved. After the COL he moved back to Vancouver and has been much more attached to the family ever since. 
    Please keep reaching out for support. I promise, no more poems…
  • Strongwoman
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    @Hooodith I LOVED IT!! <3<3  It made me smile and laugh from the beginning.  Thank you for sharing!
    You are talented.
  • To all, my poems are my own. If they are not copyrighted they are free to use anywhere. I am going to publish a chapbook of my lifetime poetry as my major legacy project, for my kith and kin. I am quite excited about it. 
  • Strongwoman
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    @Eileen The little issue has been fixed and I can see your post now. Thank you @mfallis!
      There are good and not so good takeaways from your post.
    Not being able to tolerate some of the pain meds doesn't help when you are in pain for sure.  I am thankful that the Toridol seemed to work and you didn't mention any side effects so that is definitely good to keep in mind moving forward.  
    Also good to hear that you haven't lost faith in your team and your daughter stepped up to support you.  Crying is okay. It is part of healing. I would have cried as well given the situation. It is a complete turnaround as to what you thought your life moving forward would look like.  Day by day and you will come out the other end.  Ups and downs in between for sure. We are here if you need us.
    How did your daughter respond when you mentioned you were lonely?  I am happy to hear you are starting to receive supports that are covered and that you rent subsidy application was approved. Those are definitely positives.
    Sounds like your team is on top of things given the last couple of sentences. That is good to hear and that you aren't waiting.  Keep us posted as you feel up to it. 
    Take care of YOU!
  • Strongwoman
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    @Hooodith Thank you and yes words are very important.  It is good to hear that the testing is showing that the chemo is working. How do you feel about it? I will keep my fingers crossed that you receive a break from chemo either for awhile or for a long long time. <3
    It is true that sometimes when you least expect it, family comes through and can surprise you.  What a gift that son gave his mother by making her coffin.  Amazing!
  • Ok now i get ph call today. From my oncologist nurse saying oh your oncologist forgot to tell you she is leaving on a 3 month semvatical leave and wont be back till after new yrs. Like what!!!. And This other dr will be taking over during her abscent.  Ok well i have spoken to tjis lady over the ph a few times during the oncall emerg. So im here thinking i sure hope my oncologist has wrote down our plan of action we talked about. Ok now im grouping a bunch of questions and calling the cancer clinic to speak with the nurse to get these answered. Just thought of them now. Like Al i can think of is that song thats pops into my head by kenny rogers " you pick a fine time to leave me lucille." that feels like me noooooo dont go...

    My oncologist has left a few times on vac or etc but not this long. But she was always emailed etc by the nurses. I know 2 of her colleagues and their ok. But to have someone else maybe changing decisions i hope not. Like i said lots of questions to ask. I guess that's what she ph for today in case i had some.  
    Ok thats my vent for this evening. 
  • Strongwoman
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    @Eileen  How are you feeling today?  I know yesterday was full of emotions, news, etc.  All of that is a lot to process and one is not able to do it all at once.  What to say about your Oncologist leaving.....with everything currently going on with you it would be very surprising and may even leave one feeling anxious about it all.  What I can ensure you is this:  Your Oncologist will have prepared notes and they will be available to whomever the new Oncologist is.  It puts you in a spot where you now have to form a relationship with the new one.  Sometimes fresh eyes looking at a case can be helpful or they may be "up" on more current information.  Change is hard and when we are fragile like we are and scared it is even harder.  Do your best to not focus on it all (may be difficult but with days passing by it may lessen), meet the new Oncologist with an open mind, accepting attitude and see what they may have to say.  Who knows, you may like this one better than the one that is leaving.  You won't know until you go.
    If the new Oncologist suggests changing what your other one proposed, it is still okay to ask why.  Get them to validate why they would choose an alternate treatment, pros/cons, what happens if you did the other and/or nothing.  
    I wish you the best and know we are here for you.  Go for a walk in some sunshine this weekend or sit and enjoy it.
    Take care
  • @Strongwoman I just want to thank you for all the wise and comforting words you write. They affect me deeply and really help.
  • Strongwoman
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    Thank you @Hooodith and I am thankful they have helped you along your journey as well.
    Looking forward to your poem on Thursday!
  • mjmck21
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    Friends I don't know if I will be around for Teal Thursday today as I had planned because I have been in the hospital for 6 days with a small bowel obstruction. I was doing so well and now this. It's taking a long time to resolve but at least they are not talking about surgery at this point, just steroids. And so far it looks like adhesions not tumours though that could change as they learn more. If I am feeling up to it I will join later today but for now its been very difficult.

    I know many of you have encountered this and I was fully armed with knowledge when I went to emergency. It definitely sped things up. As soon as they heard bowel obstruction and my cancer status I still waited hours (due to the system crisis), but saw surgeon relatively quickly and was able to provide a place for them to start.  So thank you once again for your knowledge and for OCC providing this forum and webinars on bowel obstructions. This is a very difficult experience. If anyone wants to chime in about how your bowel obstruction was resolved. If it came back (big fear here) and if any cancer treatments were changed I would appreciate it. I am worried they will stop Avastin now and it with Taxol have really worked well for me this year. thx
  • @mjmck Hope you get this cleared up and can head home soon. I have not yet had a bowel obstruction but, like you, I do feel slightly prepared as a result of the discussions on this site. Actually, I didn't realize a bowel obstruction could last that long. My oncologist is constantly going on about not getting a bowel obstruction and to be sure that I do everything correctly in relation to anything bowel-related. I had never really given it too much thought but it is bound to happen sooner or later, so I am going to start arming myself with as much knowledge from this site as possible in order to be prepared. 
  • mfallis
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    Welcome, everyone, to this week's Teal Thursday chat. I hope that you're able to enjoy a bit of the fall weather that is happening, at least for me in Ontario at the moment. 

    Today's chat is here for you today, so please jump in and chat. 

    Was anyone able to join the Speaker Series that happened this past Tuesday?  What were your thoughts?
  • mfallis
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    @mjmck21, like @GloHo, I hope that it is able to be cleared up soon so you may had home. I'm glad that you had resources that can equip you with information. 

    As people are chatting here today, or afterwards, please share your experience with bowel obstructions and their resolution. 


  • Strongwoman
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    GOOD AFTERNOON LADIES.....TODAY IS SEPT 28TH, 2023.  
    We are 2 days away from Sept leaving and 3 days for October to begin. The arrival of fall/autumn has arrived.  For making it interesting today, who call it "fall", "autumn" or "a combo of both"?  Has anyone seen any turning of the leaves and found any outstanding and would like to share.  This week is also the Harvest Moon which coordinates around the Autumnal Equinox. "Supermoons are full moons that occur at or near perigee — when the moon is closest to Earth in its orbit — and offer a great time for seasoned lunar skywatchers as the moon can appear slightly bigger and brighter. Although, that luminosity and size difference is hard to spot for the casual observer. There were four supermoons that happened in a row since July, with two of them in August (the latter was a rare Blue Super Moon) leading to this month's finale." (this is the link to the full article Harvest moon 2023, the last supermoon of the year, kicks off fall stargazing on Sept. 29 | Space)
    I think it is amazing to think we had 2 of them last month. For those that do any work with crystals, the full moons are the ones that are to re-energize your stones. You do this simply by placing them outside in the moonlight.  I for one am up for trying it. After all the energy they pick up in the house, I would love to see them get their charge again.  Use them, don't use them but it is something that can be used in mediation and practicing intents as well as wearing them for varying reasons. 
    I find it fascinating that this turn of event Sept into October can bring us many things that can  fill us up with positivity and joy.
      How is everyone today?
  • Babs here, checking in today
  • Strongwoman
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    @mjmck21 Do you know if it was a full or partial?  I continually get these and is why I have a kit at home that the nurses administer meds as soon as I know it is coming or here.  My last one was scary and almost ended up in hospital even with 4 doses of Halidol and 2 of Hydromorph with intramuscular IV.  I did come out of it.  They will keep you on a limited diet. I really have to watch what I eat and go with what my body tells me because of it.  Due to how many I have had, I recognize and now keep my nurse on stand by when I don't feel well.  I feel for you and hope you get out soon. I am here if you have any questions,
  • Strongwoman
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    Hey @babs272 How are you doing today?
  • Strongwoman
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    How are you @GloHo?
  • Strongwoman
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    @mjmck21 @GloHo This is what it feels like....an obstruction.  They can happen suddenly.  You feel very unwell.  I get hot then cold and I feel like I have the flu almost and my abdomen is very bloated.  I usually end up vomitting and it won't stop without IM IV drugs both anti-nausea and pain meds. The pain of it is terrible as well. There is nothing you can do to stop it.  In order to correct it and/or if you feel it is starting, you need to go to a liquid diet for a day or two until you feel up to moving on. Then I am very fatigued, will try applesauce, yogurt, etc and work my way back up again.  The feeling initially is (for me) that I can't even get a sip of water in my mouth.  I am so full feeling that even that is too much.  My first obstruction I was hospitalized and from then on out I have had an SRK (Special Response Kit) at home that my Palliative Doctor ordered for me. We try every attempt at home to keep me home instead of going to the ER with it and ending up staying in hospital.  It is not a nice feeling and I wish on no one.