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Comments
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@Strongwoman
Glad you are out of your funk and have found the magic potion for what ails you. It’s amazing what a toll these things take on us both mentally and physically.
Almost done your wrapping…that’s amazing! I admire you for everything you are doing - especially the notes - that’s so difficult. I wish I was as prepared as you are and, under normal circumstances, I would be but these sure ain’t normal circumstances!!
Sorry to hear chemo is out. I never thought about the constipation with chemo. I guess it’s the chemo plus other meds given when you’re receiving treatment.
I am looking forward to the cottage. It’s going to be a long drive…but I should be able to do it with a few stops - for me and puppy 😁🐾. I am also hoping to stop at my sister’s in Whitby on the way home next Friday. I speak to her on the phone but haven’t “seen” her for ages!!
I was expecting the progression but was hoping my CA125 wouldn’t jump that much! It is what it is.
Hoping things will move along tickety boo when I return.1 -
How nice to have your GP not only that but a friend to your daughter as well @JoanEG Glad they could get caught up too. Sounds good. I am also waiting to see what your bowel surgeon has to say knowing what I face and have been told. Interested to see if you are that bit different in presentation that something can be done versus the nothing for myself. I hope it works out for you.
Glad things are slowing slightly for you too. You have had a couple of very busy weeks that it will be good slow down.
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@Sandi6
Glad to hear your biopsy pain is manageable and you were able to move forward with a local.
It’s really weird to be at PMH after hours or on the weekend. There is no emergency department so the whole hospital essentially closes down! There are a few things going on, but there are very few people around. You have to enter/exit via the Murray street entrance and go through security. I’ve never experienced that at a hospital before.
Enjoy your company…sounds like some overdo catching up and just the physical face-to-face will be good for your soul.1 -
@Hooodith Glad you can still appreciate the male body and all that it beholds. How fortunate for you that you got a " cute" one! Sorry to hear that you don't have much of a support team. That must be tough and feel frustrating to say the least. I am thankful for the team I have every day. I am glad you did get the help you needed at the time and that it helped to get you over a hump. That is the main thing. How are you feeling these days? Is it the Dilaudid that is not working for you anymore and did I read that you are now trying a Fentanyl patch? If so, how is that going for you? My pains have been different and related to the peristalsis in the bowels as opposed to overall pain. We upped my Dexamethasone and she gave me Lorazepam for nighttime to help with the increase of steroids. So far it is working. Only down side is that it makes my bowels very loose so I have to be very careful now. Not sure how long this will last but thank God for Depends is all I have to say!
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Hello Sisters
I have had a bit of a time balancing the magnesium in my body. Too little = anxiety and shaking. Too much = the runs, cramps and pain. Needing loperimide or buscopan. But my CPP has settled and I feel almost normal. GloHo it was good to read about your sixth birthday since diagnosis. I have come over a hump in the psychological journey. I accept that I have cancer, and the resistance has just melted away. I am now focussing on living as fully as possible, and being alive right up until my last breath. No more grumpiness, I hope. I am loving this world and everything and everyone in it. Well, all that Impinges on my little life anyway. Next week we are travelling to Victoria. First getaway trip in 2 yrs. We will stay with friends who are like family, who in fact introduced us to each other. And I will visit a good friend whose son-in- law has been given six months to live and is a father of four young children. She is doing some heavy lifting in that family and I hope I can give her some support.
This morning we went to the lawyer and signed our wills and POAs . I am so glad thats done. Now I just have to figure out MAiD in case I need it. After that we drove round Gabriola in beautiful sunshine, stopping at farm stands and buying fresh local produce….chard, broccoli,zuchini,salad greens,garlic scapes,beets, and hakuri. Then I browsed our thrift store and I found a big chunky silver and turquoise bracelet . The last thing I did was buy a double scoop salted caramel ice cream cone and it lasted all the way home. A great morning.I hope you all have good news from your tests and scans and biopsies. And go on living every bittersweet moment of your precious lives. We are all just walking each other home….
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@Hooodith Sorry to hear your anxiety is so high and causing you so much grief or symptoms. That is tough. What can you do to lessen that anxiety? Anything in your tool box that will help? Wish I could take some away from you. In the meantime, try your best not to over analyze all the symptoms and see what comes forth. Easy to say, I know, but words to live by. Hugs to you and you know we are here if you need us.
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@Bojenka How is the fentanyl patch working for you? Better than what you were on? Confusion as to who is your doctor is hard. I rely on my Palliative Doctor for all the day to day stuff I feel. Like this week my tummy pains were bad so I texted her to tell her and then we ended up having a telephone conversation about it. Result was we changed one med and added another and it seems to be helping. My Oncologist is there for my chemo med only and blood tests. I don't have much to say to her as we are basically maintaining the status quo for now. I am good with it. As long as I can chat with my Palliative doc, that is all I worry about esp when I get into bad episodes.
A trial eh? Well I wish you the best of luck with that. You can tell us about it once you get to the appt and have seen someone. Will be interesting to hear what they have to say for sure.
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@JoanEG Sounds like you have been busy and are slowly getting back to normal which is good. Baby shower sounds delightful. I finished wrapping my baby gifts to my sons yesterday and discovered I am short one baby blanket so now I have that to knit and keep me occupied. It does feel good to have it done, wrapped and labelled so they aren't wondering what is what when the time comes. At this point everything I have finished is wrapped and labelled and what is not done, I am still working on and will get wrapped when finished.
Enjoy your shower and all the family! It will be delightful as I am sure the weather will be too. Take care and rest somewhere in there!
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@GloHo Thanks for the comment on the doldrums. Not sure how I got into them but glad I am out now. Nice to be on the other side of things and feeling somewhat normal again. You should be on your way to the cottage this weekend and hope you have an enjoyable and restful time. Take time for you and hubby. Of course the dog too. Enjoy it all and the weather. We will chat again soon enough. Take care
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@Hooodith Sounds like you shed a new light on things since the last time you wrote. Good for you for whatever the turn around was. You got a lot accomplished too. Signing your wills is a big step. I recall redoing ours and all the emotions that went with it. As for MAID, all I know is that it isn't that difficult to get at the time. Two doctors have to sign off on it and it doesn't matter if you prepare ahead of time or not. I am choosing Palliative Sedation which just means they give me a whole bunch of meds that will keep me sleeping and not in pain. Then my time will come when my time comes. I also choose to go to our local Hospice when it is time too. When that is, I have no idea. Prolly when my bowels or kidneys decided they have had enough and the medicine no longer works. We are really on bored time or I am anyways.
Sounds like you are going to have a wonderful weekend and I hope you enjoy every moment of it. It will do your mind, body and soul good to fill up with wonderful memories and laughter. Enjoy it all. Take care of YOU!
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@Strongwoman Hi there. Yes,it was an epiphany of sorts. Realising that I am alive no matter what, so I can pout and complain about the pain and the shortness of the time I have left, or I can be grateful and e njoy the time I have left. Of course, as soon as I focussed on time and present moments, everything seemed to get longer. A day seemed like a week. Little “things” became incredibly beautiful and important. It was overwhelming at first, but now it has settled a bit. What a gift!
I actually wrote a chapter about it for the compilation book, but only in my head, at 2am in the morning. Now I am getting my little computer set up as a word processor so I can get it written down, and anything else I feel like writing. I now believe I have the right to write. Before, I felt that it was pointless as I was going to die. It took a while to unscramble the ego stuff in that one lol.0 -
@Strongwoman thank you for your kind words and all the encouragement and insight you provide this community.
@Hooodith what an amazing epiphany! When my husband found out his cancer had returned and he was deemed palliative he was very quiet for a couple of hours while he “marinated” on what we had been told. On the drive home from Victoria he turned to me and said “I’ll just live until I die” and he did. It has stuck with me and from the start I have said I may have been given a cactus but that doesn’t mean I have to sit on it. I don’t mean to say there haven’t been days of despair and pity parties but I believe we have to be grateful for the days we are given. I admire those, like you, who can express yourself in writing. I wish I was better at it. You definitely have the right to write! 🥰
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@strongwoman Yes, fentanyl is helping me a lot with the pain so I am able to be more myself but also got my appetite back after a week of not eating. I am still not sure if I am a match for the study but have been looked after by the medical oncologist and his team at PMH. So no more confusion at least for the time being. It should be few more days to find out about the study. And then possible things will change again for me. I expect to be going back to standard of care drugs ie avastin and caelyx maybe at a local Kitchener cancer centre.
@strongwoman You have an amazing relationship with your palliative care doctor being able to reach her on the phone when you need to speak. I think that is terrific. Also thanks for sharing about your preference for palliative sedation that is something I am considering as well when the time comes for me.
@hooodith I have those moments as well about not having a lot of time left and yes focusing on each day really helps.
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Hi Teal Sisters
I would appreciate comments. Yesterday I learned that my CA 125 numbers are very high, in the thousands. Nothing else is wrong. My CT scan shows nothing. Bloodwork? All normal values. Pleural effusion stable and still small. . My onc put me on a horrible estrogen suppressant in the spring. I endured it for a few weeks but it made me feel as though I was dying, so I took myself off it and let my onc know. No response of course. My quality of life jumped up, and I decided to take the summer off and do nothing until after my grandson’s wedding on Labour Day weekend. Big family reunion. Then I will go on whatever chemo my onc thinks is best.
I felt very strong about this at the time. Now I am wavering. Its those damn numbers. Has anyone else had this situation?0 -
@GloHo Hi, thank you for sharing about your 2 biopsies. I stayed with my sister in High Park so did not need the lodge at this time. We are still waiting for the results of the biopsy ie if I have the required protein for one of the studies. In the meantime I am getting radiation at PMH and on Friday I am to have water drainage from my right lung at Toronto General. So busy week ahead. I have much more energy lately. Not doing much walking outside partly considered with the breathing in this hot weather.
How are you doing ?
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@Hooodith
So glad you are living in the moment!
I have usually been able to deal with things as they come up and my diagnosis has certainly put that to the test! For me, when negative things creep up or cross my mind, I give it some attention immediately: meaning I take time to internalize what is happening or what my mind has conjured up and work out the what if’s. Once I have decided what I would do in the situation, I am able to dump it and move on knowing that I have a game plan.0 -
@Bojenka
How wonderful you have been able to stay at your sister’s through you pre-assessment for the clinical trial and for your radiation treatment. I hope all went well for your water drainage. I would be interested in hearing about the drainage procedure if you wouldn’t mind sharing. Glad to hear that your energy level has improved too!0 -
Cottage life!
It was quite the trek on Friday driving from London to Quebec. A 7-hour drive turned into 10 hours with a few stops in between 🤣🤣.
I am so grateful that I am healthy enough to be able to do this trip and that my friend is hosting us for the week. It is a very large property with four cottages - we got the big one! The puppy is thoroughly enjoying it - especially when we brought out her balls for long range fetch! Believe me - this puppy has energy!! We are slowly testing her off leash behaviour here. So far she has been really good…not running through the woods to see the owner and her dog!🤣 We are hoping to test her swimming ability but first we have to work up the nerve to step into the cold waters of the lake!! The weather this summer hasn’t been conducive to warming things up!2 -
@Hooodith I think that is wonderful that you were able to write some. If even for yourself, it is awesome and a step towards inner healing. I am sure your writing is beautiful as well. Glad that you have been able to as I say "come back to the land of the living" and are able to function on a day to day basis. It is so difficult when our minds take us to some places we don't want them to go. We feel all kind of emotions plus if finds it hard to get motivated to do anything or anything we feel may be productive for ourselves. Mine I think was a bit of meds causing some of it and am glad I am not on those ones for now. I am focusing on making this baby blanket I am short on now so that my sets are complete for my sons. My hubby realized yesterday how many gifts I have wrapped and asked me about them. It was like he didn't want to hear about it. I told him as much as you are preparing, I am preparing for things that I may not be around for. He didn't like hearing it but it had to be said because it is true. It is the greatest gift I can give them is to be prepared for some of those milestone moments or just some moments or momentos I think they will want to have. My boys especially. It will mean so much for them so see, touch and then be able to either use or make in the future. The cookbook one is one I know they will enjoy and there is so much room for them to add to it should they wish too. If I feel motivated along the way, I may add a few more and if not, I am content with what is there. Next is doing a little scrap book for each of them and then one I think I will have for myself. Then putting together a booklet of sort for them with some accomplishments I have done or some things I have saved that I think they will want to look at later. They can photocopy them if they both want copies. I have a random photo book that I will put random photos into for each of them after I do a little scrap book for them each. So, still more to go which keeps me motivated.
Good for you for taking a break from treatment until after such a momentous event. Sounds like you are feeling good, need the break and will be ready to face whatever when that time comes. That is a good quality vs quantity decision that you made. Sometimes these are easy and others come a little more difficult to decide. Hope you enjoy what is left of your weekend too! Take care.🤗
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Glad to hear that the fentanyl patch is working. Is it coincidence or the subsided pain that has been able to get you back to having an appetite? Or have you figured that out yet? @Bojenka How do you find the patch? Asking as I know that is a next step for me at some point. Not sure when we decide that and am curious about it all. Since you weren't really eating for a week, what are you eating now and did you transition slowly back in? This eating business can take up a lot of time. Deciding what to eat, smaller meals more often versus bigger meals, portion size, consistency. It does take a lot of thinking and adjusting for our bodies. I am back to a clear fluid diet as per Palliative doc as my pains increased again yesterday. Feel better today but not super great that I would chance eating normal today at all. Everything feels like is sitting a bay and waiting to see what my body is or is not going to do with it all. I tolerated yogurt and cereal this morning so am happy with that. Baby steps.
Yes, I am forever grateful for the relationship I have with my Palliative doctor and how readily available she is to talk to when I need her. It is what terrifies me the most when we look at getting closer and closer to having a decision made about our housing situation when we go to the Landlord Tenant Board in October. I would hate to have to leave the team I have and find a new one and all hoping I get people just as fantastic. I try not to think about it too much and stay in the moment because it can be most upsetting. My CA 125 numbers came back and since April they jumped another 100 so I am sitting at 733 currently up from 627 in April. April is where they doubled so we will see what they say in 3 months time. I expect elevated again and that it won't stop and hence why the bowel obstruction stuff keeps happening. The growth is there no matter how you look at it. Good thing it isn't affecting the kidneys as of yet which is good in and of itself.
Sounds like a trial may or may not be in your future. How do you feel about it either way? If you are able to have it, are you ready to go ahead? If you are unable to have it, how does that make you feel currently? Any other options out there should you be unable to continue with a trial? Anything that remains status quo and maintains? For myself it is Letrozole which we know may or may not be doing anything but for me, with minimal side effects, it is worth continuing on. Now if the side effects were awful and we knew they weren't doing anything, I would decide differently of course. Why would I want to feel awful knowing it may not be working. Thankfully that is not the case though. I will be looking forward to your update and update re: some appts you have this week. Take care of you! 🤗
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@GloHo The picture looks gorgeous. Thanks for sharing! I can feel myself unwinding now with views like that. Sounds like it was quite the hike to get there but you did it and with minimal effects to yourself along the way too!
Sounds like puppy is enjoying the new view too! That is good. Let us know if she does end up going in the water and what that looked like. Sometimes the coolness of it does not affect them as much as it does us. We do live in a wonderful country that has beautiful provinces. I was surprised by the beauty of the lakes when we took a trip into Quebec for a day earlier this year. I forget the area we were in but it was beautiful cottage country type of living and everything looked so nice and neighbourly too.
Glad to hear you don't have to have anymore drainage at this point in time. That must be relieving. When was the last time or how long has it been since you had your first one to now this one being a last one for now anyways? I am sure you will watch for symptoms etc. as we all do as we continue along our journeys.
I got my CA 125 level back on Friday and since April it went up 100 points or so. Since it doubled in April I didn't find that too bad for 3 months in between checking it last time. Means it is still growing which I know and am fine with. I don't need a CT scan to confirm that. The symptoms do that all on their own. We will check it again in 3 months time which was my choice as we know everything is status quo for now. Should things start changing symptom wise we can always revisit that and I am good with that too. The less I have to get poked the better for me. I started having pains again in my abdomen yesterday and was able to get in touch with my Palliative Doc. So she wanted me to take a short acting Dilaudid and Lorazepam. I was in and out of sleep all day and that was okay. Stuck to a liquid diet and my bowels or insides liked that too. Today I woke up and am feeling ok but not great enough to chance anything other than the liquid diet today. Best to stay safe for now. Will see what tomorrow brings.
Hubby was shocked when he saw how many gifts I have hidden in my office. He inquired about what they were about and then just as soon as he began to know what they were for, didn't want to know at the same time. Oh well. He knows now and I am good with that. More to add yet as I wait for some items to get fired at Play with Clay and am doing 3 tea cups into Kinsugi for the boys, niece and nephew along with what the art of it is and why I did it for them. Basically to show them beauty can be found in different ways. I will write them all a little note to go with it once I finish them and get them to the wrapping stage. Currently waiting for the glue and bonding agent to cure so I can file it down and make it smoother. Then comes the fun part of choosing which cup for which person and why. The writing is healing and some days there are tears while I do it and other days there is not. Depends on the day, my mood, what I write etc. Glad I found the art of this and can pass something down. I am going to include what it felt like to actually break the intact piece as well. Each piece I broke gave a different feeling that is for sure. Using cards I either made at Hospice or someone else did and supporting Hospice by buying them adds to the entire gift as well. This type of planning for the rest is stuff I like and feel is healing.
How about you? You into making anything these days or too busy with your trials and appts versus days of not feeling good to get into anything? Curious is all I am. I like to hear what people get up to in their spare time. Well enjoy what is left of your cottage weekend, hope the drive back is enjoyable and manageable. Talk soon,
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Thank you @JoanEG your words are encouraging. Thank you for sharing what your hubby said as well. It is true what he said though and are words to live by. As are yours when you state you don't have to sit on the cactus just because you have been given one. Of course we have days we do sit on it but as long as they are shorter than the days we have not on it, all is good. It is all hard to digest and process as we continue down our journey with our news and our symptoms. Each of us experiencing things differently but at time similar that we can share and let our fellow Teal Sisters know we "get it" and they are "not alone" in their journey is the main key. So thank you and I think you truly could write about your own journey for a little bit as you have been telling us and contribute to the collaborative book. When you are ready of course. You never know what will happen when you sit down to write and what comes out and how much too. It can be quite carthartic and you truly are living the Palliative life to the fullest these days that in and of itself is something to write about. That despite everything thrown at you, that you find the wherewithall to continue with activities important to you and as you navigate your health journey at the same time. Think about it! I know you have it in you! 🤗
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@Strongwoman The fentanyl patch has significantly reduced my pain. Before I was taking taking more and more hydromorphe so the palliative doctor and we felt instead it would improve my quality of life to do the patch. I still occasionally feel pain when sitting too long either in the car or waiting for appointments. I also sometimes feel a bit of radiation flare up on my right flank so at those time I do take breakthrough pills. But it is a fraction of what I took previously. Appetite came back slowly. We did some smoothies and some Boost at first. And then solid foods. My sister is a wonderful cook, so I had some homemade food but in small amounts. I really nibble often. At this point my bowels are moving well but it is a daily concern so I have Restoralax everyday and if a day goes by without BM, I take Senekot also. But it is amazing how much better, more energy I have now.
As far as trial, I hope I qualify but if not I am ready to have the standard of care chemo and hope for the best. I feel grateful for the time I have. And I reached out to the local hospice in Waterloo where I have counseling every couple of weeks. I am also on the waiting list for their daytime once a week program. So some things to look forward to.
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I hear you on the daily battle with eating @Bojenka and your bowels. It really is a delicate balance isn't it? I am thankful things are working for you and that eating has become much better as well as the bowel movements. They are just as important too. Glad you have more energy as well. That is such good news. The patch seems to be working for you which is fantastic too.
I am glad you reached out to your local Hospice and are getting some one on one for now until such time a spot opens up in their day program. That is wonderful news to hear. The standard of care is your fall back from what I read and lets keep our fingers crossed that a trial will work and you can go ahead with it.
Take care of you. 🤗
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Well this morning finds me in my house coat still. I have wrapped presents and written some teary notes and am sitting pretty melancholy today. I wrapped up 4 "I Love you Forever" books for my 2 boys and my niece and nephew with notes to go along with it. Next I finish their Kintsugi pieces, wrap and write about them and then finish off the journals I am doing for them. They will be done after that. The boys similar but have some picture stuff to do for them along with the journal writing. A little every day is how I plan on doing it and making sure that my stuff for my girlfriend, hubby and Mom will be ready to. The latter 3 will have the instructions to carry out everything when I am unable to communicate what I want to have done. Do I think the end is near? I know it is coming and trying to be prepared as I can be for those moments. Some things may shift slightly but if I get the gist of it down I think my mind will rest easier especially the notes to the ones I really want for them to reflect on. It is hard doing all this and comes with it's own set of emotions etc but is to be expected. That way my conversations will be just that and the rest I can say is written to be read another day. Not worried so as I covered my bases. It is cathartic work and self satisfying as I listen to music in the back ground completing my own little task list. Anyone else working on anything remotely similar? I painted a cow for my friend last night and am excited to get it done and sent off as it is her collectible and something that will mean the world to her. Now to give her a name……that will take some thinking. I gave her some cow spots last night which made her appear more of a character rather than just a cow. Well I have procrastinated enough here and time to get back to journalling and some knitting today to finish off the last of the baby projects for my boys. I am forever greatful I checked my stash and it will now become even. I would have felt terrible knowing it wasn't complete and I was short one blanket. If they never use them, they can pass them down to someone in the family. They will go to good use that is for sure. Who knows, I may find something else to paint for someone yet. Well back to work for me. Enjoy your day ladies!
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Hello @Strongwoman, you always continue to “wow” me! I wish I had even half the energy, creativity and most importantly, the determination, to start - and finish - so many projects, that your loved and dear ones will receive and remember you by! 🤗👍
I will be starting my next chemo regime next week. Not looking forward to this and wish I had got further along with my own legacy projects,
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