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@Bojenka That is wonderful news about the trial and that it will begin so soon for you! Good advice from @GloHo too about both staying at hospital and the Lodge. Great having others tread before you to pave the way of the unknowns. 🤗 Great you are able to stay with your sister as well which will provide some needed comforts I am sure the hospital does not provide. May be some good company too!
@GloHo CT scan this week is good and then meeting with your Onc the following one sounds promising. If nothing else, answers to questions you prolly already have ready. Perhaps all will shed light on the CA 125, pleural effusion issues or light that has been shed but not fully answered yet. That is my hope for you anyways.
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@Bojenka
Yes, I had an overnight stay in cycles 1 and 4. It was very quiet when I was there. I hear you about the quick out…my trial had a 24-hour time requirement from end of infusion to discharge. You will likely get your infusion in the room they check you into for the night. My infusions were scheduled for mornings, so was able to get discharged at a good time.0 -
I thought this was fitting for many of us and the way we feel when we come to this site some days. Another reminder that you are not alone. We are here for you whenever you are ready. 💕
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We are home now from Sooke. I ran out of stamina after two days, but it was a good break in our sometimes boring routines. I love Vancouver Island so much that the drive down was utter bliss. Through the Cowichan Valley, which has to be one of the loveliest places on earth. But coming home we drove over the Malahat in dense grey cloud. BC has had a few days of rain and cooler temps which has helped the firefighters a lot. Now it getting hot and dry again. Yesterday I just lazed about and recuperated. Today I need to get up and do things. My friend wants me to go swimming when it warms up. I have not been sea swimming for years, but. I think it might be good for my body.
I was thinking about legacy stuff. I had planned to give all the adult grandchildren a DVD of my mother’s 80th which was a family reunion, in 1991. All my very talented UK relatives doing musical and theatrical and terpsichorean stuff. But I realised that they don’t know any of those people, never met them. My Canadian family is first generation. We lack the firm base of a family that has been in one place for yonks. And so then I wonder if it isn't a good idea to show the m where they come from…
Any thoughts about this?
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I should say that once I am gone, the last link to my family of origin will be gone. My son has been there three times, but his connection is pretty thin.
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@Hooodith Sounds like your trip to Sooke was good for your soul. 🤗 How wonderful of an experience for you.
The legacy stuff——What are you questioning? To let the grandchildren have a DVD of that 80th bday despite them not knowing who many are? Why not give it to them? You could write something to go with it or record something to go with it that would explain it better to them. That way they would be in the know and have your knowledge of the people and maybe some little side antidotes about individuals and what their character was really like. The person you were able to see and interact with. It is a thought. It would require a little work on your end but is doable and would give meaning to the DVD idea. What do you think about that?
In the end, Legacy work is whatever you want it to be. I am currently starting my journals for some individuals and whatever is coming to mind and what I think I want to write that day is what is going in them. In the end, they will appreciate that they have something to look back on and read whenever they want from me. It is what I would want. Something tangible from the person you are missing so dearly and knowing they took the time to think about what to leave for you and perhaps the reason why. Like I am doing for my boys and then my niece and nephew the Kintsugi cup and saucer I have done for them. Kintsugi is the art of repairing something that has been broken with gold, with the understanding that the object is more beautiful because it has been broken. Like the art of kintsugi, God repairs the brokenness in our lives and makes us more beautiful through the process. I will also be doing a note for them about why I chose it and that broken things in our world are okay, blah blah blah. So little things like that to leave behind for them to give them meaning in some ways. Not sure if some of this helps you or not but maybe gives you some ideas for Legacy work. Of course I have done baby gifts for my boys as currently they are not in the cards and want to make sure that I am prepared should something happen to me before they reach that stage in their life. For me it is thinking ahead for all the things I may miss and trying to fill in the blanks the best I can. That is how I think about my Legacy work and what I come up with and for whom. All with hand written notes to go with whatever I am given a certain person. The family tree and lore behind all that will be somewhere the boys can access and I can point them towards it but for me it is these smaller more intimate things that have more meaning for me and I think for them. The world is your oyster though, so go ahead and think broad and wide then decide what it is you want to leave for someone, why and what shape or form that will be in that you do so. There is no magic to it only your imagination and what's in your heart. That is what they will miss the most when we are gone……the little advice or antidotal stuff they are used to hearing from us plus hearing our voices most of all. Hope some of this helps you as you decide what to do.
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@Strongwoman thank you for that. The support, encouragement and “I get it” provided by the sisters on this forum is amazing!
My great granddaughter Stevie Marie arrived on Saturday morning at 4:37 a.m, weighing 7 lbs 4 oz. She is perfect!
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Oh my, you look so happy and enthralled by the new arrival! So happy to see the great big smile on your face! Welcome, Stevie, to this world. Hope your granddaughter is doing well too. Thank you for sharing such beautiful photos of such a special time in your life. It is wonderful and put a smile on my face. Thank you. @JoanEG
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@Strongwoman thank you. My granddaughter is doing well they went home from hospital yesterday so I hope their first night at home went well!
@Hooodith it sounds like you had a lovely time in Sooke. We definitely are blessed to live in such a beautiful part of the country!
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l @JoanEG Congratulations on the new addition to your ever-expanding family! She looks lovely. @Strongwoman Thank you for your wise words on legacies. I must think further on this…
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@Bojenka
Hi. Hope all went well with your first treatment on the trial. How did you find the overnight stay? I assume after your blood work on Friday that you will also have a clinic follow up?
Not sure if you are aware of this yet…you can access the nurse and Dr notes for each appointment in MyUHN portal. It is nice to be able to go back and check what was discussed. Plus your vitals and weight are all recorded in the notes too.0 -
@Hooodith
Sounds like you had a wonderful time with your friends in Sooke.
The one-shot carbo sounds like a great idea. Kudos to your Onc for being proactive and offering this to you
I think the DVD of your Mom’s 80th/family reunion is a great idea as a legacy gift and @Strongwoman suggestion to create notes regarding your family members in the video would give context and meaning.0 -
Hi. Just checking in and testing the system. I tried to post something and it didn’t work.
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Hmmm…that worked.
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Good Afternoon Ladies,
I have no idea if I will get this out right on time and why I decided to write it ahead of time to be prepared. Today I am getting my hair done and what a treat and "pick me up" it will be for myself today. I am looking forward to the little pampering I will receive and the well deserved attention my hair needs today.
So, this week has brought a lot up for many of us. Some are struggling or adjusting through life and the journeys we are on. I know that for myself, this recent loss has brought up some more anticipatory grief stuff for me. Why it decided to rear it's ugly head now is anyone's guess. I am grateful that I am feeling well due to the recent addition of steroids to my drug cocktail and that I have the ability to eat more food along with that. I should be happy about it, which I am to some degree but then there is that little niggle in the back wondering how long it will last and what we do about it when it doesn't. I have been struggling all week to do my best to live in the now and day by day. It has been difficult. Getting to the journaling part of my Legacy work has probably not helped that either because it can be some quite emotional work as well. Learning when to pick away at it and when to leave it be is going to be a learning curve for my own mental health. As much as I want to get it done, I have to remember to be kind to myself and watch my own boundaries when it comes to the type of work this is and the toll it can take on oneself. The upcoming Celebration of Life this Saturday is definitely weighing on me as well and am thankful I am going with a friend. It will be nice to see where he/they chose to do this and what it is like there. It is a venue I am not familiar with. Who knows it may make me change my mind as to what I want to do. That is the good part of those that go before you, you get to see what choices they made and if it is something you would like to do when it is your time.
We had a lovely little celebration for a fellow friend from my group Hospice yesterday as we celebrated her birthday early because we won't be meeting together next week. We had the art therapist come in and we made a banner for her, for her birthday which was a fun activity to do and kept us all busy. The lunch was lovely and I was able to eat what they ate with only one variation they switched out the ground beef for tuna for me in the pasta they made. That was nice and my insides decided they liked it. So that was a positive too. The cake was a black forest cake and we had it with chocolate ice cream. So nice all around.
I have been working on the baby blanket that I had ripped out earlier this week and am very happy with the pattern, colours and how it is turning out in general this time. I was not happy with the other project and it felt like I was slapping something together for the sake of slapping it together. That is not what my projects have been about and am glad I made the decision to start over. Looks like a baby blanket now and the work in it is easy going which is the way it should be.
So some of you are starting trials this week or next. Some are awaiting testing results and some are in the midst of it all. Do we have anyone brand new to our group sitting in the unknown of what you actually have and what things may look like for you? How are we doing emotionally these days? I have admitted as to where my state of mind has been and why I think it has been there. It is hard deciphering what we are feeling sometimes and the why behind it.
Anyone have any plans for the long weekend? Any plans in general for the remainder of the summer and how you may spend it? I for one, can't wait for this heat wave to break and temperatures get back to normal so that windows can be open and one doesn't feel like they have to hide inside to remain cool. The heat can be very wearing even with air conditioning in a home. Day after day it can make one just that little bit more tired and fatigued and perhaps with no "get up and go". Others thrive in this and soak it right up. Where do you sit with it?
Well, ladies, I will turn this over to you and see where you are all at today. Are you with us, join us later or midway, whatever it is, welcome and come tell us what is on your mind this week and today.
Take care💕
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Hi everyone!! Just getting back into the groove after a week of relaxation!
We are getting ready for the kids to come up this weekend. That means meal planning for my husband although I will be in charge of one of the meals. For me…check pool chemicals…a bit of dusting/cleaning, etc.
I was back in Toronto this week for a CT. The chest CT results are back…
- resolution of pleural effusion with improved expansion of right lung
- predominant stability of multiple enlarged lymph nodes with some showing fractional increase in their size
- small pulmonary nodules are stable So…sounds good to me…stable.Now I wait for the pelvic/abdominal report!
I have an appointment with trial Onc next Wednesday so am hoping the results will be back by then!
In the event the results show more progression and I am withdrawn from the trial, I proactively set up an appointment with my primary Onc for Thursday next week 🤣. If things are positive, then I will stay in Toronto for my infusion and will ask my primary Onc for a telephone appointment instead of going into see her to discuss things. It’s tough trying to juggle these appointments but well worth it to get timely feedback. I am also going to get my blood work done when I arrive in Toronto the day before my appointment with the hope that my CA125 will be available for my appointment. I usually get blood a couple of hours before my appointment and the CA125 usually doesn’t come through until the next day. It would be nice to have all results available so we can make an informed decision about my participation in the trial.
I am thinking about getting back into creating a family tree for my side of the family. My husband’s uncle did a lot of work on their genealogy quite a few years ago, so I will be able to add that info as well. My son, 47, has just started showing an interest and wanting to know more…I will probably get him to input my husband’s side of the tree. It’s funny…as soon as I did my DNA on 23andMe, I had a second cousin contact me! She also sent me a couple of reports relevant to that side of our family. So, it will be interesting to see what other connections come to light when I actually start creating the tree! I just need time to really sit down and focus otherwise I’ll be going around in circles! 🤣🤣 Sounds like a good fall/winter project!!
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Hi everyone!! Just getting back into the groove after a week of relaxation!
I was back in Toronto this week for a CT. The chest CT results are back…
- resolution of pleural effusion with improved expansion of right lung
- predominant stability of multiple enlarged lymph nodes with some showing fractional increase in their size
- small pulmonary nodules are stable
So…sounds good to me…stable.
Now I wait for the pelvic/abdominal report!
I have an appointment with trial Onc next Wednesday so am hoping the results will be back by then!
In the event the results show more progression and I am withdrawn from the trial, I proactively set up an appointment with my primary Onc for Thursday next week 🤣. If things are positive, then I will stay in Toronto for my infusion and will ask my primary Onc for a telephone appointment instead of going in to see her to discuss things. It’s tough trying to juggle these appointments but well worth it to get timely feedback.
I am also going to get my blood work done when I arrive in Toronto the day before my appointment with the hope that my CA125 will be available for my appointment. I usually get blood a couple of hours before my appointment and the CA125 usually doesn’t come through until the next day. It would be nice to have all results available so we can make an informed decision about my participation in the trial.
I am thinking about getting back into creating a family tree for my side of the family. My husband’s uncle did a lot of work on their genealogy quite a few years ago, so I will be able to add that info as well. My son, 47, has just started showing an interest and wanting to know more…I will probably get him to input my husband’s side of the tree. It’s funny…as soon as I did my DNA on 23andMe, I had a second cousin contact me! She also sent me a couple of reports relevant to that side of our family. So, it will be interesting to see what other connections come to light when I actually start creating the tree! I just need time to really sit down and focus otherwise I’ll be going around in circles! 🤣🤣 Sounds like a good fall/winter project!!
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Hi everyone!! Just getting back into the groove after a week of relaxation!
I was back in Toronto this week for a CT. The chest CT results are back…
- resolution of pleural effusion with improved expansion of right lung
- predominant stability of multiple enlarged lymph nodes with some showing fractional increase in their size
- small pulmonary nodules are stable So…sounds good to me…stable.
Now I wait for the pelvic/abdominal report!
I have an appointment with trial Onc next Wednesday so am hoping the results will be back by then!
In the event the results show more progression and I am withdrawn from the trial, I proactively set up an appointment with my primary Onc for Thursday next week 🤣. If things are positive, then I will stay in Toronto for my infusion and will ask my primary Onc for a telephone appointment instead of going into see her to discuss things. It’s tough trying to juggle these appointments but well worth it to get timely feedback.
I am also going to get my blood work done when I arrive in Toronto the day before my appointment with the hope that my CA125 will be available for my appointment. I usually get blood a couple of hours before my appointment and the CA125 usually doesn’t come through until the next day. It would be nice to have all results available so we can make an informed decision about my participation in the trial.
I am thinking about getting back into creating a family tree for my side of the family. My husband’s uncle did a lot of work on their genealogy quite a few years ago, so I will be able to add that info as well. My son, 47, has just started showing an interest and wanting to know more…I will probably get him to input my husband’s side of the tree. It’s funny…as soon as I did my DNA on 23andMe, I had a second cousin contact me! She also sent me a couple of reports relevant to that side of our family. So, it will be interesting to see what other connections come to light when I actually start creating the tree! I just need time to really sit down and focus otherwise I’ll be going around in circles! 🤣🤣 Sounds like a good fall/winter project!!
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Sorry for the triplicate post…and a long one too. Something is very glitchy today!!
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@GloHo That does sound good…stable! What wonderful news to hear for sure. Waiting for your next results will be next but as always you have your plan and back up plan in place. Good for you. You are so pro-active. We will await to hear what your journey will either continue to look like or what it will look like next when you get the answers you need next week.
As far as your family tree project, sounds wonderful and a fall/winter project for sure. Nice to hear your son is showing a vested interest in it too which helps. I am sure you will have fun with it and the information will be forthcoming from those that have already delved into some of it which will help the process. Nice project to take on!
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Just another little symptom, probably not cancer related. I now have MES, which is a form of tinnitis, but musical. I hear a tune playing, over and over again. Mine seems to be a version of “Don’t Cry For Me Argentina”. Apparently the tunes or songs are often patriotic or about a special occasion, like Christmas. People don’t like to talk about it because it sounds close to auditory hallucinations. I don’t mind it too much, but the advice is to put more music in my brain, which is not getting enough stimulation. Thats the theory anyway. So now I am being proactive and listening to my playlist even when I don't really want to.
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Just got home from my consultation with the surgeon. My appointment was for 3:15 but we were there really early and they took me in right away and we were on our way home by 3! Traffic was no problem either! Anyway the surgeon drew a diagram and explained that the cancer mass causing the partial bowel blockage is very complicated and surgery to remove it would be huge. The mass is attached to my small intestine, large intestine and the top of my rectum. Surgery would involve taking parts of each. He feels that it would be very risky and based on how I’m doing and not just the imaging that it should be left alone. He said if I was to develop a total blockage then immediate emergency surgery would have to be done but that might never happen. He recommended that I just stick to the low residue diet and monitor my symptoms. I’m quite happy with that!
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@Hooodith What an interesting name for what you have currently. I had no idea something like that existed or why. Thank you for taking the time for sharing it with us and explaining it to us as well. I wish you the best in your recovery from it by basically reprogramming your brain with stimulation from playlists to counteract what is occurring now. Is that the gist and correct? I hope you keep us in the loop as to how this goes for you even though it is not cancer specific related. Very interesting indeed!
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@JoanEG Sounds like your day went quicker than you expected which is always good. How are you feeling about the news you were given? Staying on the low residue diet is limiting but it does do wonders for the bowels that is for sure.
Now you say that despite the location of everything in relation to the mass that surgery would not be done but that perhaps emergency surgery could be done. It sounds like although it could be done, the likelihood of it actually being performed does not seem like a reality. Is that how you read into it as well? All of it is incentive enough to make sure the bowels keep moving and we stay out of trouble where that is concerned because the alternatives to get us out of trouble are not very favourable indeed. Hard pill to swallow I know because I have had to accept the reality of it myself. I am thankful you received answers regarding it all now and know where you stand. It is easier to process when you know what everything is doing and why they can't intervene rather sitting in the unknown of it all. Every day is a new day and for me every day is a new day with eating and what my body says it will or won't tolerate on any given day. Surprises all around. I am thankful that mainly it has remained stable to say the least and stable I will take over the up/down and uncertainty of it all. Not having the pains daily definitely helps with quality of life and having more energy to do more things helps to plan one's week and what one might do as well. Thank you for sharing your news and hope you enjoy your new addition. So exciting for the entire family!
Take care. 💕
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Have a great day Ladies!💕
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@Strongwoman I am feeling okay about what the surgeon had to say. He said that because I have been managing well on the low residue diet and haven’t really had any issues that are related to the partial obstruction he didn’t feel it was right to treat the “imaging” rather than the patient as a person. The surgery would be extremely difficult and risky and he feels that unless I am faced with a total blockage (in which case it would be done as an emergency surgery) that it would be the better to leave it alone.
Also thank you for the reminder to put things in my gratitude jar today! You have a lovely day🫶
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