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@Strongwoman Well since you asked……Musical Ear Syndrome (MES) is annoying, but not the end of the world. Yesterday I played “Rumors” by Fleetwood Mac. One of my favourite albums, though I am really not into rock. I found myself dancing to it, and it was much more fun than chair yoga, so I am now going to dance my way to stronger muscles. I had to laugh at myself, an almost eighty yr old doing the moves. But it brought my energy level up, and that cannot be a bad thing. But this morning I heard my brain singing Happy Birthday to me. Its not my birthday.
@JoanEG Sorry to hear the surgeon can’t do more for you. But at least they can do something in an emergency. Sounds like you are OK with that.
Its getting warm here, and its only 7:30 am. We are in for a heat wave. There are heat warnings all along the east coast of Vancouver Island , which includes Gabriola. We are somewhat cooled by the waters of the Salish Sea, but it is minimal.0 -
@Hooodith dancing to Fleetwood Mac is a great way to get some exercise! During COVID I discovered a series on YouTube for walk/dance exercise by a woman from Vancouver. It’s low impact and great fun for us “older” ladies, lol. She has a variety of programs and workouts lasting from 10 minutes to 60 minutes and music from every decade and genre. Her YouTube channel is Marion Brand Fitness, check it out!
https://youtube.com/@brandfitnessca?si=_3lbcTEXxsxbJhiH
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@JoanEG Sounds fair what the surgeon had to say. It is like treating the symptom before it is really truly presenting itself just mildly there. Yes, I have been told the same re: surgery that the risks are great and would truly have to be weighed as to "if" it would be performed at all in my case. Yes, even in the emergency situation. Best leaving it alone is great advice as you continue to navigate your day to day and the diet that goes along with it. Although it can be limiting, it allows us to still have some variety depending on the day. For me, some days are better than others and I take them when they come. On the days things are not so good, I do my best to get through it and remind myself tomorrow is another day. Hopefully it will pass sooner rather than later and I will feel better again soon. A lot of self talk is what it is most days and praying the abdominal discomfort doesn't worsen.
Hope you had a wonderful weekend and got some down time in after being so busy for so long. Perhaps you were able to hold you great granddaughter again which would just be wonderful for you! 💕
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@Hooodith Good for you! Rumours is one of my favourite albums of all time too! Glad you busted some moves and got some exercise in with it. An added bonus from having MES is that you could dance your way to stronger muscles. Who cares what age you are on the outside, go with what feels right for you on the inside and be YOU!! Be curious to see what you dance away to next. 😉
Hopefully you had yourself a nice weekend. Did they say how long this lasts, the MES,? Would be interesting to know if it is a gradual time line kind of thing or they know for sure it lasts "X" wks. If they have no idea, that's okay, have as much fun with it as you can in the meantime. As far as symptoms go and our journeys, it is a little blip on our screen of life. 😉
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Thank you @Strongwoman . I have had a very nice quiet weekend which I truly needed. I took my convertible out for a spin for the first time this summer and also got to spend some time with my new great granddaughter.
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A Convertible! That sounds like a fun thing to do on some nice beautiful days. Feeling the sun on your face and the wind in your hair. What colour is it? @JoanEG
Glad you got to spend some more time with Stevie too. Such a special time and they seem to change daily in those first couple of weeks. My gf came over with her 10 wk old yesterday morning and I noticed changes in him too. More alert etc. He definitely sounds like my second child who needed to be with people a lot which makes it challenging for Mom at times. She is handling it though and sticking to a routine and working around how he adapts to it all. I plan a trip to them this coming Monday for something different to do and it will fill part of my day as well. Plus I get to see and hold him a bit too. Sneaking that in is always nice. Checking on Mom and how she is doing as well as the relationship in general now that baby is here. As we know our lives do change whether we want them to or not when the baby comes. But we wouldn't change it for the world! ☺️
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@Strongwoman here is a pic of my convertible.
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💝💞 it! Looks like fun and love the colour!
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I am posting early today as I am not sure where I will be when we begin OV Dialogue today. I am to accompany my girlfriend and her little one today to the local Play with Clay to obtain footprints in clay. Should be an adventure and know the person doing it is experienced and will be quick at it. The wild card is the little one and how she will interact with it all. Mom doesn't leave the house often so she doesn't see a lot of the outside world or other people. Thankfully this is a quick endeavour and I have every faith it will go as smoothly as it can! So, if I am not on right away when we are to begin, please go ahead and start the conversation. I will join when I can! ;)
I thought this quote fitting for this week. For HOPE is what we all have no matter where we are on this journey or what we are experiencing. We have to have the hope to pull us through the multi facets of our journeys and how they affect us emotionally, mentally and of course physically. The challenges we face both as individuals and in our inter personal relationships as we navigate the course of treatment set out in front of us. We face scanxiety as we await our testing and what that may reveal for our next steps for our journeys. Wondering all the while if we will reach NED status and when we do how long that will last. Never prepared for the emotions that go along with that which can include feelings of guilt for feeling good while others are not. Knowing we are able to carry on with our lives and make plans again while we read that others just aren't there and have no idea when they might be able to. To be accepted for trials that are out there and have your health team on board with all that brings including the hope that it works and they have figured out that "magic" formula for you specifically and what your disease is doing to your body. Hope that we find the courage every day to continue on despite any negative news including being informed that there is nothing more they can do for oneself. What does that look like for you and how would you handle it? Well, one doesn't know until you get there and the state of mind you are in at the time. At that stage one can only hope that your team is there for you to mitigate your symptoms as they creep up and make you as comfortable as can be. That one can stay where you want to be for as long as you can pain free and as symptom free from whatever creeps up. Hoping that our bodies cooperate and listen to us as we talk to them and bargain for this or that to get through the day. Hope that the family understands your choices you have made throughout your treatment and thus far and will continue to support whatever decisions you have made for the end. Hope is a four letter word that carries so much weight and meaning in it that we need to make sure we don't take it for granted and cherish the hope we find along the way to help us through our own personal journeys. So take a moment and reflect and don't ever forget what HOPE can mean and do for any single one of us on any given day. As the book says, "Hope for the Best, Plan for the Rest". It is really the only thing within our control.
On a lighter note, what has been going on in anyone's world and how has treatment been? I haven't heard from many of you in awhile and hope that is a good thing. I am curious as to how our @babs272 is doing and if she could give us an update. Any of you that haven't posted in awhile, why not give a shout out and let us know where you stand today, good or bad and let us share in your journey. Just reach out and let us in…..that is all it takes……you would be surprised the support you will receive and possibly what might "pick you up" today. It may be all that you need to help you carry you through your day! 💕
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@Strongwoman
Sounds like a fun adventure. That the mother is going out with you proves again how caring and compassionate you are - she trusts you and that says a lot!
Hope the kiddo has fun with squishy clay between her toes!0 -
Well…my life has been a whirlwind over the last week.
In Toronto last Wednesday for a CT, home on Thursday, prep for kids and dogs coming for the long weekend, host the kids and dogs, back to Toronto on Tuesday (left at the same time as the kids), withdrawn from trial on Wednesday, saw my Onc today.
OK…let me backtrack…
CT showed progression - still within stable range but we mutually agreed to discontinue my participation in the trial. In addition, my CA125 increased again…this time by 1000. For those interested/curious, my CA125 count is at 15500.
I was expecting to be withdrawn so I proactively set up an appointment with my own Onc for today. Needed to see her to make sure we were on the same page with my move forward. Discussed next steps with my Onc. I have Gemcitibine and Topotecan left in my standard of care options. She also does not like the amount of weight I’ve lost since I last saw her (12kg since May). The trial Onc said she was ok with it since it was gradual. I have had to buy new bras and pants. I have always had a weight problem so I have been kind of enjoying being down in weight. I am at the low end for my height…and my Onc wants me to try to gain…so I’ll have to start chugging back the Boost and other tasty treats to help with that 🤣.
We also discussed trials. I was interested in the FONTANA trial (in London) but my Onc says there is a limit of 3 previous treatments. It is not specified in the inclusion/exclusion criteria so I have written to the drug company to get a definitive answer. It sounds odd that there would be a restriction so low for a phase 1/2 trial.
In the meantime, over the past two days, I have been fighting tooth and nail to get a referral to the one oncologist I want a consult with at PMH. The trial Onc sent a general referral to Gyn Onc unit even though I had asked for a specific Onc. I also had my trial nurse involved because she is my go-between with the trial Onc. First they booked me with a radiation oncologist…what? why? I’m not eligible for radiation! So they corrected that error and booked me with a medical oncologist…but not the one I wanted. When they called me about the appointment I told them that I did not want to see that person and told them who I wanted to see. So the poor guy had to send my request back to the Gyn Onc unit triage. Kudos to them…they called me back within 5 minutes with an appointment with the Onc I want to see!! I have to wait a week longer to see her but I think I have made the right decision. My primary Onc has been consulting with this PMH Onc and even sent her a note today after our appointment - so the PMH Onc is somewhat familiar with my journey. I really dug my heels in on this one and self-advocated rather forcefully.
I want to talk to the PMH Onc about trials that may be available in Toronto (back to Toronto-London driving again!) and about what other drugs are available to me in the drug formulary. I know some of the drugs are not slated/funded for use at this stage in my journey but there are others. So, we’ll see if the PMH Onc comes up with anything outside the box🤞.
I have not really had time to process all this yet. So I am going to take the next couple of days not doing too much. Then get ready for my sister and brother-in-law visiting us next Mon/Tues!
Oh, of course, between all this, I need brakes and I can’t get into my mechanic until Tuesday…so staying close to home.
Good grief…my posts are soooo long. Thanks to all for listening to me 🤣.1 -
Oh yeah…the CT showed that my right lung has expanded and there is no sight of a pleural effusion. There is, however, some ascites but not enough to drain. Ascites has been a common sighting but it seems to just be there without any increase so far.
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Hello @Strongwoman,
Loved your piece this afternoon about Hope at the Ovdialogue chat. Really thought I’d be able to attend all of it today, but by the time 2pm (Atlantic time) came along, I was already dozing!
But like I said before, I do make a point of going back to check it out and see what’s new. I’m afraid the very thing I’m losing now is hope. I’m not complaining though, because I’ve had 4 plus years that I didn’t expect to have! I got to see my daughter get married, made so many connections with people new and old, from far and near. So…no, I’m not complaining. Just trying to be practical. last week I was put on a new treatment - which has helped many, and then again, has led others to go into severe side effects. All this to say, @strongwoman, that I am finally facing the truth that I may not be here much longer. I have so much left to do which I have have been procrastinating over. I’m glad I got to work on some legacy projects, with inspiration from you, for the children, but now the rest - writing an obituary, planning the burial, etc. Do you or any one else have any words of wisdom you can provide in these areas? Or sites that may be useful in this regard? Thanks so much 🙏1 -
@Tinazzie
Sorry to hear you have reached this leg of your journey. Your outlook is inspiring and do not lose HOPE yet…you are on another treatment!🤞🤞🤞
I am currently grasping at straws…HOPING for a trial that may give me some additional time.
If you don’t mind sharing…if not, that’s ok.
Which treatment are you currently on?Were you on Gemcitibine and/or Topotecan? If yes, what was your experience? These are my last two standard of care options.
Like you, I have been procrastinating about pre-planning my final arrangements. I found this link that has a form that seems to cover a lot of things. As I said - I’ve been procrastinating so haven’t really sat down to look at it.
https://www.funeralwise.com/wp-content/uploads/Funeral-Planning-Form-Universal.pdf.
If you are planning on visiting a specific funeral home, they may have a pre-planning guide for you.
There are so many things to think about but pre-planning will be a blessing to our loved ones.
Wishing you the best on your treatment.0 -
Good evening everyone. Just popping in to say hello and offer a caring hug to those who need one and to say how much I appreciate @Strongwoman ’s message of hope. Wishing you all hope, caring and comfort as you navigate your journey. 🫶🫂
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Thanks @GloHo, for the link to Funeral Wise. I will check it out. My social worker also sent me a link to:
https: //www.legacy.com/.I agree with you that the post from @strongwoman about HOPE was timely indeed. I've always been the optimist…yet somehow, I found myself on the other end of the spectrum. It could be that the new new treatment I started, was quite hard. You will find my situation is a little different, @GloHo. In 2020, I was diagnosed with 2 primary cancers: Ovarian cancer and Breast cancer. It was the Ovarian cancer that was deemed to be a much higher risk. So I had a total hysterectomy, followed by platinum chemotherapy which I tolerated. I was also put on Letrozole for the breast cancer. Unfortunately, 2 years later, it was discovered that the Breast cancer had spread throughout my bones and into my liver. Over the last 2 years, I have been put on 2 of the most likely drugs to keep my condition "stable". When the last one stopped working, my oncologist actually looked excited. He told me that there was now a new drug in the market, to treat my specific kind of breast cancer. The important condition for getting on it, was that, the patient had already tried at least one other similar drug, which I had (x2!). This new drug is called Enhertu, It has had a lot of positive reviews on its efficacy. However, there are also some known extreme side effects. I was cautiously excited but agreed to start it. I am now back to IV Chemo every 3 weeks. I am half way thru the first cycle, and have not yet fully recovered from all the indigestion, nausea, and yes, the fatigue! I guess that's what made me feel I didn't have control, and thus losing HOPE. But it's not all bad. Looking into end of life matters, is important for everyone - at whatever time in their life. I think I needed the incentive - the little push - to look into the things that I am still able to, with pleasure, and HOPE!
I wish you all the best and hope that you are successful in finding a trial that works for you!
💖
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@GloHo You have had a lot going on these past few days. Everything seemed to be lined up and go in order for you as things got eliminated as you went along. Some met with challenges while others were not. Nonetheless, it has left no room for the actual processing of all of what you discussed, took on/off the table and where that leaves you now. I don't imagine you really know how you feel about any of it. One question is for certain is that you want to continue with treatment of some sort, it is determining what that is. Is there a point you think you will reach that you will decide that you have had enough and let whatever be and follow through the natural course of things? Or is this something far off in your mind? Just curious is all. Losing the weight now that it has been flagged will become part of your process as you try to put the weight back on that has been lost. It isn't as easy as it looks and will come with time. How are you feeling about it all? Where would you like to be doing your next treatment courses and how will that affect travel etc as well for you? Thankful that they can locate some ascites but that it is not at the stage for draining and more at the wait and see stage for yourself. Take the time you need to process the whirlwind of info and answers you have been given to determine what you do next. I will be curious to see what you come up with for sure and your rationale behind it. You have always seemed methodic in your choosing and weigh heavily on outcomes good and bad before making your choice. I admire you for that. Take care of yourself this weekend and allow yourself to "be" the answers will come to you and you will know what to do soon enough. 💖
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@Tinazzie No need for apologizing. Things happen and I am happy to hear you can go back and read what has been posted and still participate later should you so choose. That is the beauty of the OV Dialogue being online and typed instead of virtual in Zoom. One doesn't really have to miss much this way. One can peruse is at their leisure when the timing is right for them.
I am glad that this one topic resonated with you and that you have been able to relate to it in some ways. By the sounds of it, you have been placed on a standard of care treatment that can have some big side effects that go along with it. Have you been experiencing any of those yourself? If so, manageable or no? You have mentioned the fact that you are dealing with the possibility of not being here much longer. Can I ask what is making you either think or say that? Is it changes within your body, scan/testing results, something your doctor said or something you are feeling yourself? It is hard when we get to a stage like this and I like to understand what one is actually feeling so that perhaps I will know when it is happening to me or if it is happening to me now. It is so hard to determine especially when everything is so internal yet the symptoms can be physically outward. It is difficult to plan for the future for sure but it is empowering at the same time because it is something within our control currently. It takes guess work out for family and they are truly following through with plans you wish to have happen which makes it easier on them. I went to our local funeral home on my own and had a little consult/visit. I was given a little booklet and have filled it in for things I wish to have happen and then added in things I think they can add so they wish. It will give them a general guideline but nothing is set in stone or paid for. It also gave me an idea as to what kind of money we were looking at ballpark which helped my brain immensely. So, I will leave that for them to look over and be a guiding point when it is time to make the arrangements. I have a journal I have started for my hubby which will include info like that in there and where to find it etc. So that is one way to do it. I do still feel empowered that I did it and look at it time to time especially now that I am getting to the journaling part that is more instructional for hubby for when I die. It is my last parting gift I can give to him that is practical and will help him along the way. The websites given above, I am sure have a lot of useful info in them too. Depends on what you want to do. Good info now just choices for you. Feel empowered that these are things you can do while you can for them. So many don't get a chance. No, it is not something we want to think about but it does help when emotions are high and will hopefully take the chances of family being taken advantage of during this heightened time of emotions. I hope that helps.
I was also happy to read that you have been incentivized to do some Legacy projects of your own for your family. You saying I had any part in helping you along with this, is enlightening as it brings me great joy to know you are finding projects to do and leave. My office alone is full of finished projects, wrapped, with cards and names on everything so nothing or nobody will be missed. I am fully caught up on that end of things. If I add in from here on out, so be it but I am thankful for what I have accomplished thus far. Now comes the journaling which is a slower process as I write in multiple ones and let the thoughts flow for the day. Today my brain is too tired to write like that but tomorrow is another day. Family tends to leave me alone when I write which is nice too. Anything I can do to help you with your Legacy work, kindly let me know and I will share anything that has helped me or tips/tricks I can think of along the way.
Sounds like today you have a little lighter outlook on life which is nice to see. It is amazing what a day can do and the changes that come with it. This morning started out quite dull and dark and has now brightened up. Doing some laundry and then I think I am going to veg and watch tv and knit this afternoon. Nothing too big today and more of a chill day as my insides are not the happiest again today. Better than they were this morning and I will take that. Oldest son is off work today so maybe we will binge some tv together this afternoon. Tomorrow hubby and I are going to the market so I made sure the fridge was cleaned out before that happens. Nothing worse than bringing home all this stuff and having to do so much cleaning/clearing on top of cleaning and putting away what one brings home. Not that I can eat half of what is brought home, it is the outing that matters the most to me now.
Well I hope you are having a bit brighter of a day and let me know if any of that info helped re: end of life/funeral and or legacy work. I will do my best to guide along as you need it and when you need it. Take care of you and rest this weekend! 💕
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@JoanEG Nice to see your "pop in". Glad you liked the message of HOPE yesterday and found it useful/helpful or something. Or just the right message at the right time. That happens at times too. Wishing you well as you head into your weekend and whatever that brings for you. Alone time, family time, friend time, who knows what time but time to reflect and be. 💕
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@Tinazzie My sister in Scotland has told me about Enhertu. She says it is available in Scotland but not England or Wales. She sounded very positive about it. She is a retired GP and breast cancer survivor x2. She wondered if I was taking it.
@strongwoman I have been having gut problems, mainly hyper motility and gas. Very uncomfortable. I was supposed to get a one off chemo infusion in the middle of August but have heard nothing in spite of my phoning and leaving a message. This happens too often. It leaves me feeling abandoned. I want to ask for a different oncologist but I don’t know who to ask.
I am also experiencing a very sore mouth that makes it hard to eat, particularly crunchy food. When I look it up it says its chemo mouth and should go away a few weeks after your last chemo. Well my last chemo was in January, and it is still making life difficult. I use the magical mouthwash too. Any suggestions gratefully received .0 -
@Hooodith Sorry to hear you are having gut issues…..I must say they are the worst! Something that occurs from within and not something we can outwardly cure or fix ourselves easily. I bet you are feeling abandoned. Today my Palliative doc told me to take a Lorazepam and basically "sleep this one off". Well I took it but am more "vegging" than anything. That is good too. The symptoms have eased off mostly and I am good with that. Have you taken anything for the gas and/or related it to any foods you have been eating? What options do you have to ask for a different Oncologist and who can you speak to about that or do you know? Can someone from the nursing team make a suggestion and you follow through?
The mouth sores from chemo are to be bad and I have heard they take awhile to clear up. I am sorry you are still experiencing this so late in the game. There are some specialized mouth washes out there, have you tried any of them? Or some plain old baking soda and water to rinse your mouth out with? Having foods that are more bland still affect it or make it better? Anything you have noticed food wise that really triggers it off? That might be a starting point. Perhaps some of the other ladies may have some tips/tricks up their sleeves with this one.
Hoping you have some plans for the weekend and that you will find some solace in them. How is your unrelated illness and the tunes going on in your head 24/7. Has any of that eased off for you? Fingers crossed it has to some degree lessened for you.
Wishing you some answers and relief soon from the latest symptoms. Take care of you this weekend! 💕
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@Tinazzie
Thanks for the legacy.com link. I’ll look that one up too.
Oh boy…yes your journey is definitely different and more complicated. The new drug sounds promising…keep the HOPE! Are the side effects subsiding for you now? It is difficult to keep ourselves uplifted when we are feeling so crappy at times. But sometimes we just need to feel it then let it pass. Sounds like you are back to feeling better. When I had side effects, I would take the proactive route and take something before they started so I didn’t have to go through the initial yuckiness and just stayed on top of it from there.
One drug gave me hand-foot syndrome AND mouth sores. I was a real mess. Geez…magic mouthwash worked for me. There are many different formulas for the wash (if I recall my research correctly). Maybe ask your pharmacist if there are different formulas you can try since this one is not working for you.
Hope you find some relief soon!0 -
Funny you should ask about when I might say “enough is enough”! This thought has crossed my mind a few times…of course during my downer times. I honestly don’t know, so I suspect I will keep on keepin’ on until I’m out of options. I think it’s one of those things where you’ll know when the time comes. There are so many scenarios that it’s impossible to say I’ll do it when something specific happens. This disease throws so many curveballs at us…I’m not going to waste a minute of the time I have left trying to figure that one out! 😵💫 I think I will just know…and I’m ok with that.
As for the weight…I have no intention of gaining all of the weight back. I feel good at this weight and am willing to give her 10 lbs. I’ve heard it is hard to put it back on, so I’ll do my best and see what happens. Even if I could maintain…would be better than losing more.
What’s next? Good question. I called the drug company about the prior treatment restriction for the FONTANA trial (available in London)…they just gave me the name of the contact at PMH. So I’ll be sending an email or calling today or tomorrow. I would prefer London but PMH has the most options. So I will probably end up back in Toronto. Travelling is a bit much but if that’s what I have to do, I will. It’s just thinking about the winter and what that brings weather/driving wise. It sounds like a lot of the trials follow a standard schedule with overnight stays, weekly blood draws and infusions every three weeks. So we’ll see. I am a bit anxious to get going because my last infusion was mid-July and I’m not likely to get started on any trial by the time all is said and done until mid-September. Thankfully I feel good enough that I am not too distraught about this…but it definitely weighs on my mind.
Thanks for asking the tough questions. Makes me think about things and feel more prepared to deal with things as they arise.
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To change Oncologist, I would talk to a nurse…they know what’s going on and some may even give you a nod to which Onc would be a good fit. There is no way we should feel abandoned…unacceptable!
Do you have a health portal? Maybe the appointment is in there?
Ooops, I put my sore mouth comment for you in my message to @Tinazzie in error.
Hoping you get you chemo appointment sorted out soon.
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Hi All,
well this will be my weekend update. First week and infusion at PMH of the medical trial was very tough of me, specifically nausea and vomiting. The chemo in this trial is not supported by steroids. I ended up in ER and admitted because of dehydration.
Thank goodness, I am much better now and on the mend. We are waiting to find out if I can stay in the medical trial since I was given anti nausea meds that are not permitted on the trial. We have plan B. If I get disqualified from the trial I plan to have standard of care chemo at my local hospital with hope that my disease gets more stable. Perhaps at that time I may be up to another trial.
Another issue I had was pleural effusion so I had drainage done a couple of weeks ago. Week later another oncologist at PMH felt there is more fluid and that I need another drainage. When we showed up for the procedure in PMH it was decided there is not enough fluid to warrant doing it. Also I am not symptomatic ie not short of breath. I was glad to hear this news but hubby frustrated since we have a long drive to Toronto in the rain. Such is life, unpredictable at times.
@GloHo interesting to hear how well you advocate for yourself , reaching out to Fontana directly. Bravo
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@GloHo I appreciate your suggestion that I talk to a nurse. Only problem is, I don’t know any nurses. The only contact I have at the Victoria Cancer Clinic is the onc I want to ditch. I get my chemo, ordered by him, at the satellite clinic at tha Nanaimo hospital. None of the nurses there know any of the oncs at the Victoria clinic. They just do the chemo infusions.
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Thoughts.......does @JoanEG or any others out in BC know of any nurses or Oncs and can help our @Hooodith ? Any suggestions and where they are can be a help so she will know where to make contact. She is riding blindly now so any input even if it seems far off is better than the zero she has currently. I thank any and all of you that may be able to help her. 🙏
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@Hooodith my onc in Victoria is Dr. Fiorino she is really good. Most of my contact is with the Nurse Practitioner Laurie Bernhardt who is amazing! She gets things done! I don’t know if this will help you any but it can’t hurt to try.
@Strongwoman thanks for tagging me.
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