Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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).
OVdialogue – consider joining our team in the role of Community Champion. 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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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Omg ladies...... Let's laugh... So I've mentioned recently that we want to go to Florida.. now that my scan and blood work are clear I have the task of trying to get travel health insurance ( wish me luck). Anyways... My mother in law just popped her head over the stairs looked down at me and asked me if I called them already.... No I have not lady it's only 7am ( at the time). Then she had the brilliant idea and told me not to tell them everything... Sure.. that's a great idea ( insert sarcasm)
Finally, she just said cancer is not a disease...... I was shocked, didn't know what to say to that.. needless to say my mother in law is a bit " special" words no other daughter in law have ever uttered
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@melissa Well said! How frustrating for you speaking with your Oncologist about your numbers. You are right in calling him out and stating that he has many to look at whereas you are looking at only yours. I recall before I had my surgery and was going in and out of Emerg with GI bleeds and pain. The one time, they forgot about me, the pain got so bad that it went over a 10 and it took 2 days to get it under control. It all happened because a nurse kept ignoring me when I mentioned my pain had returned and I needed more meds and her and the doctor were more concerned with how many people they could process through Emerg. I recall having a tantrum and throwing my coat on the floor and crying. I told them either treat me or let me go home as I can't take it anymore. They moved very fast after that. Then I had some doctor come to me and told me I had colon cancer. I said no I don't that it is Ovarian. He started to argue. I blasted him (due to the pain a I would not do that in normal circumstances) and told him that he needed to go look at his notes and that if he couldn't find them, come back and find me and I would let him read the scans from my phone. He left me alone after that and didn't even come into my room once I got a room upstairs. It is down right terrible that we, the patient, have to both experience and deal with this when we are in distress already and the reason we are in there. I am with you and hope more nursing staff pay attention and/or get called out and change their behaviours. We don't ask to be the way we are, we have learned to live with it on a daily basis and I feel we do it well.
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Okay I am intrigued @melissa If MIL doesn't think cancer is a disease, what does she think it is? I think you should ask her that. I would be curious to know what she classifies it as.
I know our @Taita has previously posted about travel insurance. Try typing it in the search bar and see what comes up. There may be some helpful tips/tricks there before you call.
Not mention you have cancer.....so silly......better to be honest than end up with some ginormous bill in the USA if you needed help because insurance is like.....Heck no we aren't covering her, she had a pre existing condition. Utter silliness the line of thinking of that.
LOL....MIL,.....mine doesn't even know I have recurred and what state I am in. Sad for hubby and the boys over it all. Glad you have a relationship with yours.
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Fitting for today....I think Ladies.0
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@Strongwoman I guess you could call what I have with my MIL a relationship technically..... But sadly no, it's a very superficial one. She just turned 85 but to look at her you would think she's 65/70 she very fit and can walk 6km with me no sweat.
But, sadly she has lived with undiagnosed mental health/personality disorder for the majority of her life and nobody fought to get her help. So, her relationships with all her 3 children's spouses have been difficult. Oh well, such is life.. she's always in competition with others, for example almost 10 years ago she had stage 1 breast ca, had a round of radio... And has been fine... Great! Ever since my stage 3b OVC diagnosis she is convinced her breast cancer is going to come back... Worried that doctors think it's in her bones now.... Because she did a bone density scan... Sigh. I got annoyed and said you did a bone density scan cause you're old lol.... Not very mature on my part but many people who know her tell me I'm an angel with her.
I'm going to stop myself from venting otherwise you all will be reading a novel.
@Strongwoman you are right, I should ask her what cancer is, if it isn't in fact a disease.. Geez talk about dumb statement of the day.
In terms of insurance my gut told me to be completely transparent, the last thing I need is a 100,000$ bill from the USA0 -
@Strongwoman
Oh dear…no I haven’t seen your post. Trying to find it but it is being elusive. Please direct me. Thanks.0 -
@melissa
Honestly, I am afraid to do that for fear of retaliation in some way. I know I shouldn’t feel that way but if they are insensitive to start with…I don’t think that’s going to win them over. When you’re lying prone in a hospital bed it doesn’t sound like such a great idea. I believe she was also the nurse that was doing the wrist poking…I was a little bitchy because of the pain…she left and someone else took over trying to find a spot. However, I will keep it mind and will speak my mind in the future in a way that will not earn me the grumpy face on my door 😠. Thank you for your professional advice.0 -
@melissa
I have heard from a few others in zooms and chats, that Medi-Quote is a good broker for finding medical coverage for cancer patients. I was going to start the process, but my situation changed so never followed through. I do know they need EVERYTHING from you - not just meds but supplements etc. Do not leave anything out!! They even ask you to update prior to leaving…they insist on having the most up-to-date medical history. Sounds ominous but is understandable given they are covering cancer patients.0 -
It's under the title Legacy
You will find it there1 -
@GloHo I just got off the phone with Blue Cross... They asked a series of questions about oxygen, nitroglycerin lol, hospitalization, and other meds. Which I met all criteria and have been stable for 4 month today!
The rate for 17days was surprisingly reasonable that I had to clarify with him twice that I'm in remission for cancer and are you sure it's that low, and more importantly medical care related to cancer WILL be covered if need be.
They did not ask for any other documents... Which I found strange, but, they can always get those if they need them1 -
@Strongwoman
Sorry you had to go thru that! I think I probably would have done the same thing in your situation. We do have our limits and medical staff should not take us to the brink!!I had lots of attention - even the triage nurse I passed out on came by to see how I was a couple of times!! It seems to be very few that cause us grief and I know I tend to write more about what went wrong than what went right. I do respect hospital staff and know that is something I could never do. It takes a very special person to show the level of care, understanding and patience required in a hospital where everyone is there because they have to be and are in pain and stressed out which usually brings out the not so nice side of even the nicest people. They have to tend to multiple patients - all with their own quirks and complaints. RESPECT to all the Drs and nurses out there. THANK YOU!!0 -
@GloHo you have no idea how bad I need a vacay. Last time was in 2018 and it wasn't with the hubby. We could both use the sweet sun of Florida and the beach. We have family there whom we will be staying with apart from when we go to Key West for 2 days or so.
I'm looking forward to key lime pie, Cuban sandwiches and crab from Miami and the occasional glass of wine and Pina colada.
We don't know what tomorrow will bring so I've never looked forward more to a vacation than this one.
You're right about not wanting to rock the boat with the nurses. It's a shame we have to adopt this thinking..0 -
@GloHo fingers crossed by April 1st or a few days sooner. I feel bad for the hubby as I will end up driving him nuts till then. I turn into a teenager with stuff like this and am planning on heading to the mall to pick up some luggage lol and knowing myself I might start packing and writing lists lol0
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One (or two) more things…🤣🤣
I am now on the MyUHN health portal. This is the first health portal that has allowed me access to Drs notes. Of course I went through a personal debate with myself…do I really want to read the notes in detail? The Dr has communicated findings and next steps with me already… Me being me, I had to take a look!! I found two errors in the medical history they have for me.
One was that I had cytoreductive surgery way back at the beginning of my diagnosis by an Onc that I did not have until later in my journey. Surgery was never an option for me. I informed the clinical trial coordinator that this was incorrect. Now I have to find out how far back the error was introduced into my file. So, next visit with my primary Onc, I’ll have to point this out to her.
The other thing was the omission that I was part of the BioDiva study. But, they had included a smaller local biomarker study I participated in. The BioDiva study had a section on collection of future tissue and fluid, samples and that they would like to have some of these samples too. Given I am going to get another biopsy, I wanted to touch base with the BioDiva study to alert them to this and find out how they would collect samples (the process). So I called my current trial nurse at PMH to alert her to this. She was not aware of the PMH-lead BioDiva study and told me to contact my local BioDiva coordinator where I had the procedure. Okayyyy. So I called my local BioDiva coordinator. She is going to touch base with the PMH BioDiva team to alert them to my upcoming biopsy and will let me know what they say. She did indicate, first and foremost, the clinical trial has first dibs on my samples.
I, of course, have more to say on the role of the trial coordinator but will save it for my clinical trial entries 🤣🤣
I now have to figure out how to get port access for my CT. It seems that the Phase 1 trial staff are not part of the CT team, so they can’t advise me. Really??!! I’ll have to go back at them about this again and hope we can find a resolution!!
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Tossing in my woes this morning. Dr was just in and said I have to stay in another day so my 3 days in hospital have now become 5. My magnesium and potassium levels are low so I’m hooked up to IV again. I still have a fair amount of nausea so I’m ok with staying put for now. As the doctor said better to stay than to go home and have to come back.0
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So here’s the result of my BioDiva inquiry. Samples can only be collected at the site you registered at. So if my biopsy was done in London, they could get the samples. Sounds weird since it’s a PMH study…and the biopsy is being done at PMH…and I must be in the main database at PMH. Oh well, I tried. Not going to fret over this one.Have a great weekend everyone!!0
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@melissa I am excited for you and can hear and feel yours in your posts. That is so wonderful and what a way to "carpe diem" or "Cease the day". Great way to get some much needed R & R with your hubby and perhaps celebrate a little your NED status. Feel that warmth of the sunshine, enjoy great food and company and just find joy. It will also give you something to focus on in the coming days.
@JoanEG Yes, it is hard to hear you have to stay a couple more days in the hospital. Sounds like it is the place you need to be right now. It would not be fun in the least to go through Emerg, relay story, yadda yadda and then wait for a bed etc if you were released too early only to go back. Get your family to bring you in some snacks or something to do and get yourself better. The recovery road is a tough one and you will get there. First step, is being your best self to get out of hospital to be able to go home. Do what you can to rest up and hopefully you will be there soon. Look at today for example, it is almost done which means a new day is coming and soon it will be over too. Hang in there. As you know, we are all here and you never know who is on and when. Take care of yourself.
@GloHo I am having a bit of difficulty focusing so bare with me. The BioDiva Study specimen or biopsy can ONLY be used in the hospital it is done at? There is no way to sign a waiver to get a sample of that biopsy to send to another hospital? Is that correct in how I am reading all this? So, it is different than the sample they collect when they operate on you and can share/release to another hospital with the proper documentation. My fatigue is settling in and with it, my capacity to retain some of what I read. Interesting if that is the case with the BioDiva. Do you think it is that way because now BioDiva now "owns" it in a way due to the study that goes along with it or why is it this way (or do you know)? Curious, I am today.
And yes, staff at the Hospitals work very hard and are at times overworked. I can appreciate all of that as I feel we all can. I feel that we become frustrated when we feel we are not heard when we are talking about or being spoken with regarding our conditions. As we feel we know ourselves the best and only have our own cases to look at and recall versus the numerous ones they do. I am thankful daily for the team that I have to support me in my own journey and all that they do to help me along the way.
Whatever you are doing this weekend, enjoy ladies.
For those that may not have seen my earlier post. I will re-post it here for simplicity sake:
It is with a heavy heart and great sadness that I come to you now to report the end of life for Kim best known as @Taita on our forum. Kim left our world Tues night. Her daughter in law has let me know of her death, tonight. She was a good member and had a lot to do with making things happen at a government level for Ovarian Cancer. Please feel free to honour @Taita in the coming days and share any interactions or poems you may have that remind you of her. May she have died in peace in the way she wanted surrounded by the love of family and friends. You will be missed my friend. Condolences to the entire family at this time.
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Ladies, I’m curious to know how you remain motivated to continue with treatment after treatment, and multiple surgeries. I’m new to this, and have had occasions where I’m not sure I want to fight. When the pin is intolerable, or I hear that I may only have a few months to live. I want to live, but I want to enjoy my life. Does it get easier once you’re done your first cycle of 6 chemotherapy sessions? I’m struggling with how best to spend the time I have, trying to be optimistic about my future, while also being realistic. I’m open to suggestions. Much love ❤️0
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For all the TEAL SISTERS out there! 2 -
@Sandi6 I don't believe there is a "magic" answer to your question. What you need to remember is that you are going through what is called "anticipatory grief". (Type it in the search bar and more threads will come up on it.) Be kind to yourself and let yourself grieve in whatever way it comes out.
When I was going through chemo specifically what helped me was chunking down the times. So 6 times meant that first was making it to the half way mark. When I made it there, I was like "wow I am half way done". Then the next one came and went and the following came up and I thought "this is the 2nd last one". All of sudden I was at the end and rang that bell. What a day that was. Perhaps that may help you in chunking it down time wise.
As far as what helps one carry on, I believe it is different for every single one of us. There may be some commonalities and some differences but the theme remains the same. We have some driving force that is urging us on and to keep going. The hardest hurdle I had and started to get vocal about was "others" telling me to "keep fighting and don't you stop". I recall telling someone close to "stop and not to say anything more". They never returned after that or touched base either. That is fine with me. What I wanted to shout was "what the heck do you think I am doing and what more is it you would have me do to show you that I am fighting?". Furthermore, we don't have to prove anything to anyone. Our fights or more like journeys are our own and it our own path that we tread not others. You will find many will come and go through as you go along in your journey. Some stay the whole time and others go away quickly and others just peter out. The ebb and flow happens to most of us.
For me, going forward means being here daily for my sons, my hubby, my parents, family and friends. The ones that show up for me and keep me going daily. There are days I reflect and get sad and melancholy and that is okay. Again, we are grieving and it will do what it wants to that grief. Yesterday was a tough one for me with my Aunt and my brother in law and it was also joyful and memorable. As I wait for myself to be triaged in a surgeon's "inbox", I am both thankful I don't have an appt and anxious that I don't. It allows me time to not think about it and have to make decisions and the ability to do my best to enjoy the day at hand. Chunk down your time and try not to look too far ahead. Enjoy today, put it to rest and then enjoy tomorrow and what it brings. Working on my Legacy projects fills my days and then some and while I work on them, I don't really think about things. Often I have music on that I enjoy and just get lost in the process of whatever I am doing. Before I know it the day is done and everyone is coming home. When I am well, part of that day is making them dinner and listening to their days at work. Evening comes and one by one they go to bed or off to do something and I again get some time alone which I cherish. Time to watch something I enjoy, read or whatever I decide to do. I feel like I am rambling and hope I am not. I truly wish that this will help you in some way and you are able to find your own way in your journey. I am here if you need anything, just reach out.
Take care of you, 0 -
@Strongwoman
I can understand your confusion!! I participated in the BioDiva biomarker study at the London Cancer Centre. A section of the agreement I signed indicated that any future tissue or fluid samples removed from me should be provided to the BioDiva study. So, with my upcoming biopsy for the current trial I am applying for, I touched base with my BioDiva coordinator to alert her that I was getting a biopsy and asked how getting a sample for BioDiva could be coordinated. She came back with the response that a sample would only be collected for the BioDiva study if I was getting the procedure done in London where I registered and participated in the original collection for the study. (This was the response she received from PMH - the sponsor of the BioDiva study.)
What confuses me is that the BioDiva Study is a PMH study and I am getting my biopsy at PMH…so I thought it would be easy-peasy for them to grab a sample for research and their database. Since PMH is a go-to site for trials and these types of procedures, you’d think there would be a BioDiva person assigned to deal with these one-offs so they can gather as much data as possible for their database. Apparently, that’s not the case. Go figure!!Does that clear it up for you?0
