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Thanks @Strongwoman for letting us know the sad news about Eileen. She was a true warrior and fought so very hard to overcome all the obstacles in her way as she battled this disease. I am glad that she had her daughter and other family members around her - I’m sure that gave her a lot of comfort. She will be missed and remembered fondly and with much admiration by family, friends and of course, us her Teal Sisters. Rest in peace dear Eileen. 🙏🥲
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@Strongwoman Thanks for letting us know about @Eileen, so sorry to hear about her passing, my thoughts and prayers 🙏 to her family.
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Thanks for letting us know about Eileen May she rest in peace.
My thoughts and prayers are with her family and friends.0 -
Thank you to all who have extended well wishes to Eileen. She touched many lives on this platform. I am thankful she is resting peacefully now. 🙏
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Sunday is here and it is warmer with a gentle rain falling here and there in Southern Ontario.
I am feeling a little under the weather today or possibly it started last night. I have taken my oral steroid, Dex, and it seems to be helping. Will play it easy today and stay with safe foods.
It is a joy to watch the birds at the feeders and see who returns, like the blue jays, cardinals, goldfinches, woodpeckers, sparrows among some. I am eagerly awaiting the return of the butterflies and hummingbirds which are a joy to watch as well.
I have Turkey Tail Tea simmering on the stove, getting my new batch ready for the week to drink. It takes 20-30 mins to simmer.
Spring brings to mind the regrowth, rebirth of many things, the freshness in the air, the flowers that pop up in the garden, the birds that fly and gather at the feeders, and of course the dreaded dandelion. How everything starts to green up and the trees start with the buds on them and gradually transforms into leaves….they fill gaps where gaps have been all winter. It truly is an amazing thing to watch and am thankful we have the seasons to see this.
Kindly share what spring means to you and what sorts of things you see as they can differ from province to province.
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Good morning @Strongwoman and everyone. Spring is my favourite time of year! Here on Vancouver Island right now the dogwood trees are spectacular. Their brilliant white flowers against the deep green foliage are breathtaking. The big leaf maples are flowering and the leaves are growing bigger every day. We still have tulips blooming along with azaleas and rhododendrons. Hummingbirds are everywhere and swallows are nesting. I just had a woodpecker hanging upside down on my patio roof drumming away on the aluminum. They are crazy right now as they bang on different surfaces to attract a mate. The grass is brilliant green and needs to be mowed frequently. Ah yes the dandelions are in full bloom, lol. The pollen… ugh it is all over everything. It rained yesterday and now there is a sticky yellow muck on the concrete.
After a very busy week today I will relax and recharge before I tackle another week of work and appointments. Have a lovely day everyone.0 -
I don't believe we have dogwoods here but I bet they are beautiful @JoanEG You definitely have much more out than most of us for the time of year it is. It's why it is so nice to share and see what others are seeing on a daily basis. Grass cutting is definitely in our lawns near future too.
The array of flowers and birds sounds wonderful to see and hear. Thanks for sharing. 💕
Our friends were just here that are expecting in a month's time and their first. So nice to see their excitement and joy in bringing a new life into the world. Glad we get to be part of it.
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Just returned from a 4 day stay in Prince Edward County (PEC) with two of my classmates from the University of Toronto. Its been 48 years since we first met. PEC is the halfway point for us all. Wine, food and great conversation and laughs. Every time I have a remission and feel up to it, we get together. Two years ago, it was the Royal York in downtown Toronto. Truly great and loyal friends.
Spring is also my favourite time of year. When I returned this morning, my bloodroot plants were in full bloom. Actually, its flowers aren't all that different from the Pacific Dogwood flowers. In Ontario, we have lots of dogwood, such as Red Osier Dogwood, just not the dramatic species which flourishes on the west coast. Every year, I wonder if I'm going to get to enjoy the beautiful sequence of blooms in my garden. The flowering of each species is so fleeting.
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Greetings from The sunshine state my fellow teal sisters. It's been a minute since I've participated in chat but have been reading everyone's comments every so often.
My favorite season is summer but I appreciate the beauty and re birth of spring, as well, it reminds me that summer is on its way.
The weather in Florida has been wonderful the entire time we have been here which is coming up on a month. The hubby and I had a cold for the first week and a bit so we extended our trip. We are headed for key West tomorrow morning till late Wednesday.
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Hope you’re feeling better and enjoying the gorgeous weather today here in Ontario.
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@GloHo Thank you for the well wishes. I am fighting off a bowel obstruction that I have been able to do so with oral meds only. No nursing staff which is nice. Today seems to be a better day than yesterday so am hoping I am turning the corner with it.
Had some tough conversations today with my nurse. We signed my DNR and also the directive that should anything happen to me in the house (meaning I am unresponsive) the family calls Bayshore Nursing and they come to do everything. Cuts out the need to call 911 and all the chaos that goes with it. Family knows most of the staffing so it should make it more personal for them. Again, tough conversations but needed to be done.
Relaxing today, knitting and binging some TV. Oldest son is going to make dinner for the 3 of them so I don't even have that to worry about today. What a dreary day out there. The birds are really hammering the feeders which is nice to watch them flit in and out.
Hope you are doing well too.
Take care 🤗
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@melissa How wonderful it all sounds. I have been told Key West is beautiful. Enjoy it all and make memories. Perhaps you can show us some pics when you get back. Give us all something nice and beautiful to look at. ❤️
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Glad to hear you are managing the obstruction without nursing care and that you are feeling better. 🤗
If you don’t mind me asking….
You have been dealing with this for quite awhile now and I know you have your system for dealing with it at different stages (oral meds, nursing, hospital). Is there anything you could share with us that would be helpful to know if we have not yet experienced an obstruction? Are bowel obstructions different for everyone or are the warning signs similar for everyone? Are there usually warning signs or can it occur without warning? Questions to ask? Medications that help? Diet restrictions - should the low residue diet be started immediately or would modifications to diet suffice? These may very well be per individual…just thought I’d ask if there were any overarching commonalities.
Tough conversations indeed!! That must have been very scary and sad for you and your family. I thank you for sharing the decisions related to end of life and how you are handling things. Yet again, you have opened my eyes to potential options that I should consider.
Your honest and direct conversations with us in this chat forum are very much appreciated.
How wonderful that your son is cooking dinner and you can sit back, relax, and take care of you!!0 -
Well @GloHo you do have quite the questions that I will be happy to field the best that I can.
So to answer your first question:
Is there anything you could share with us that would be helpful to know if we have not yet experienced an obstruction? Yes, they are painful. Some can come on suddenly and some are a gradual that reach a crescendo that one can't ignore. They are more common than we think especially due to the surgeries that we end up having due to our Ovarian Cancer. Sometimes it is scar tissue that causes them and other times, it is tumour growth that starts to impede the function of our organs by pressing on them that does it. It is different for everyone. I, unfortunately, have many that impede a lot. I have one in particular that has affected my kidneys for a long time and now my right kidney remains at severe hydroureternephrosis but my left one has changed from mild (months ago) to now being moderate on my latest CT scan. This means that at some point, my kidneys could fail me. I was offered intervention a long time ago but am thankful I have not as I did not want to live with 2 tubes emerging from my back and bags to empty both ureters on a daily basis. I have tumours along my small intestine which sometimes get irritated for whatever reason and causes me to have the ileus (partial obstructions). I have ones along my descending colon and throughout my peritoneal cavity as well which all have an impact on the organs inside. So, long and short, this is possibility for many that have had surgery. I truly wish they had educated us more on diet etc from the onset of recovery from surgery.
Are bowel obstructions different for everyone or are the warning signs similar for everyone? They are typicaly the same for everyone. I would say it usually starts with a sense of fullness or bloating that does not go away. This seems to get worse and one doesn't feel like eating. Sometimes I have been hungry and did eat but have grown to know now to not when I feel like that. There is extreme pain in the abdominal cavity and I can feel the intestines moving trying to move things through. It often feels like spasms but very painful. If this does not pass what usually ends up happening is that one will vomit to rid the body of anything in the stomach. Often there is no flatulence or bowel movements when someone has an obstruction. One becomes very weak and I have to call my nursing team either before I feel I will be sick or after to administer medication and help get me through it. They do this with my SRK kit I have at home that the Palliative Doctor ordered. In it, they have the ability to administer drugs intramuscular with a little port that I usually get them to put in my legs. One leg is one drug and the other leg is the other. I sleep a lot and take tiny sips of water initially as that is all I can do when I am experiencing an obstruction. If the obstruction is a complete one, meaning it is being strangulated it two spots, one can go to the hospital and they will do a CT scan then probably instruct that a NG tube be used or if someone decides not to, there are measures they can do to keep one comfortable until you pass away. Not something anyone wants to think about but it is the truth of the matter.
Are there usually warning signs or can it occur without warning? Yes sometimes (as above) there can be warning signs. Other times, mine can come on suddenly and I gradually feel worse and worse and know it is coming. I think I covered most of this in the question above.
Questions to ask? Do you mean to your team or what do you mean by this? If you explain a little more, I would be happy to answer.
Medications that help? Most of my meds are in my SRK kit which is something a Palliative doctor orders to have in your home. One can always discuss this with their Oncologist, Family doc etc to see if this is something that applies to you or not. In my oral meds, I have Dexamethasone and now a stomach coater one to take with it. I also have my break through pain meds that are short acting that I can take. All of that depends on whether I can ingest and keep down medication and any bit of fluid. I have both an oral and sublingual Odansetron to help with the nausea portion that goes with an obstruction. Again, all ordered by my Palliative doctor so that I am prepared when something like this occurs.
Diet restrictions - should the low residue diet be started immediately or would modifications to diet suffice? I think this is an individual thing and something to be discussed with your surgeon or team at the time. If I had known when I was starting to have these that there was a way I could have monitored my diet earlier, I would have appreciated it. I knew to go to a clear fluid diet after having one but nothing beyond that was explained to me until I had that hospitalization and NG tube earlier this year. If this is something that is known to affect oneself, I would say to start or be aware of the Low Residue Diet (which I have posted before) and follow it as you see it fits your situation. I was told by the nutritionist that one will phase in and out of the 3 phases and for some that they can eventually go back to a regular diet. I know now that I won't be able to do that. I really miss my fresh fruit and veggies. I miss having wraps and salads, eating nuts and popcorn and many other things like whole wheat bread and grained breads. It is what it is to keep me upright and this side of the grass so I deal with it. But I can tell you, normal food smells amazing. I am thankful that I can appreciate the aroma of that food but not feel like I am missing out so much or turned off by it. One thing I can say that I have noticed is my sense of smell has been heightened and will often tell my family they have to remove their plate once done eating or sometimes not be in the same room as them when they eat depending on the aroma.
I hope this helps some or many of you and these are my experiences due to the frequency I have been experiencing them. Everyone can present a little differently. If anyone has anything to add, please do so.
Thanks again for asking such valuable questions that may help someone and possibly prevent some of what I have gone through.
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@Strongwoman thanks for posting all this information. As you know I have a partial obstruction caused by a mass attached to my bowel, I have been complaining about the low residue diet but I’m thankful the surgeon put me on to it right away. I also miss the fresh fruits and veggies, whole grains, nuts and seeds but the alternative would be worse! If I can prevent a total blockage I will do everything in my power to do so!
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@Strongwoman on a lighter note I took a couple of photos of the spring blooms I mentioned the other day, I took the first photo of a couple of the trees n my yard from the road when I was walking the dogs. If you look closely at the first photo you can see a small Pacific dogwood tree in front of the big maple. My ornamental plum is just starting to flower it is quite late this year. The white flower is on the Pacific dogwood tree and the green dangly things are on the big leaf maple. I don’t think your maples flower do they?
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@Strongwoman
The “questions” question was about what to ask team. Not sure where I was really going with that one. Is there something we can or should ask about sooner rather than later?
Would you recommend seeing that GI specialist you saw recently as soon as possible once you’ve had an obstruction? I know it involves surgery which is high risk…so probably best left till absolutely necessary?
The intervention you chose not to go with - what is it called? I’m not sure I would have made the same decision…but you don’t know until you are presented with it. I guess you can always say no…but such tough decisions. I would imagine this is something that could be revisited if necessary, so a “no” makes sense if the option remains available should you change your mind.
Were you ever presented with a bowel/colonic stent option? I have researched it a little and think that may be something I would ask about.
Behind all of these questions and decisions is quality of life. Weighing the pros and cons and deciding on your own tolerance level to achieve QOL for “yourself”.
I think the other thing that is important to remember is that you usually do not have to make the decision on the spot. Take time to process the option(s) presented, do some research, ask more questions and make the decision that is best for you.
Ok…my brain is fried and starting to go around in circles. This was my 2.5 hour drive home from Toronto day 😵💫. Thanks for your patience and making sense of my very wordy queries!!0 -
Hello ladies,
Here are a few shots from our quick getaway to Key West, any pics of cats were taken at the Ernest Hemingway house which is now a museum. Apparently him and one of his wives adored cats. They had dozens living on their land and all the cats there now are descended from the original cat back then who had 6 toes. There are 59 cats that live there today!
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@Melissa great pics! Thanks for sharing them!
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@GloHo the short bus was a big hit! We laughed soo much when we saw that cause it's an inside joke with the hubby and I. When we first met he jokingly asked me if I took the short bus to school when I was little lol. Almost 20 yrs later we still mention the short bus. It was fun cause it was our shuttle bus to downtown
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Thank you @JoanEG for sharing a part of your journey with us and to let others know that this low residue diet is something probably many of us are on to keep things at bay. That we do it to not have situations worsen for us. Missing foods is one thing, being too ill because one ate them and in pain is something totally different. Let's keep empowering our journeys! 😀💪
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@JoanEG Thank you for brightening my day and showing us those pics. Stunning seeing the growth. The lushness of the green and foliage. Something to admire, that nature and all it beholds. I am not positive about the maple trees and if they do that here as well. As the buds are starting to emerge, I will keep an eye on them and then take a pic if they are. Sometimes those are the things we take for granted and don't always look at closely.
@melissa Thank you for sharing pics so soon! I can't believe that there are that many cats living there today. It seems like a lot, did you notice them without really having to look for them? Incredible to think they are all descendants from the original cats that were on the property. You are having fun by the looks of it and really doing some neat sight seeing. I, too, love the title on the short bus. It is fitting for many of us on our journeys today. Have a great adventurous day!
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@GloHo I have been thinking about your first question through the night and I don't think I have an answer for you. I feel it is based on our unique situations. I would say that if you had any type of bowel involvement either surgically or where tumours are located, that yes, I think the conversation should be had about eating and what to avoid etc.
As far as seeing a GI specialist right away, well, mine was a general surgeon and no, I don't think it imperative to see one right away. All of us heal in different ways and respond in different ways to treatment and surgical interventions. Sometimes, we have to "wait and see" before we can go to the next steps. I don't know if everyone would be considered "high risk" for surgery a second time as that would be individual to every single person. What I would encourage is open conversations with your team and if you feel like you have been doing or on something for awhile, know of any treatments/trials; discuss them and see what happens. The worst thing that can happen is that they will say "no". If they do, ask why and why you wouldn't be a candidate.
The intervention I chose not to go with was called a Nephrostomy. In my case they were recommending a double nephrostomy. If you don't know what it is, I will describe it briefly here. They will go in (I believe with a radiologist), locate the kidneys, insert a tube from your back into the kidney and then the other drain end will empty into a bag that is attached either around your waist or leg. This tube would be covered and has to be monitored and changed at certain points in time. One has to learn how to care for this and empty the bags etc, One also has to learn how to live with it. In my case, it would have meant 2 tubes emerging from my back and then learning how to sit, sleep, etc with it. It is something I chose not to do due to what quality of life I wanted and I have not regretted my choice. We have been monitoring my bloodwork closely monthly and my creatinine levels have been good plus one can live with one kidney. This is what I was basically doing until seeing that now my left one is starting to show wear. In my case, I am not sure if this is something that would be re-considered at this time but I am ok with it not being looked at. I had been told earlier that if I did decide that I wanted to proceed that it could be all set up in a matter of days so again, my worries about it diminished.
As for either bowel or urinary stent option, I think we discussed this initially regarding the kidneys and ureters. Due to the material they are made out of, if I had a stent put in, the tumour would end up pressing on the stent and it would cause the same result so I would have gone through that procedure for the same outcome. As for a bowel stent, I think due to my sigmoid colon anastamose with the initial surgery, that this was not a possibility. The only possibility that I knew was a long shot but explored anyways was to see if they would be able to go in safely to see if they could do an ostomy of some sort but as we now know, the answer for me, is no.
The biggest take away from this all is as you have stated and we continue to discuss on this forum. Quality vs quantity and what that means for you as a person and individual. That is something that is yours and yours alone. For me, quality of life and how my boys and husband see me until it is my time, is very important to me. I want to be able to be out and about doing things I love and being with people for as long as I can until this disease rips that decision away from me. I found that book and podcast series, "Hope for the Best and Plan for the Rest" very reassuring to how I chose to live my journey. There is no right and there is no wrong. There is ONLY what is right for YOU! I wish each and every one of you the strength and tenacity to ensure you empower yourselves on your journeys and that you live your best life with those choices!
Take care everyone!💕
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Thanks for everything you’ve shared. I know these are posts that I will definitely revisit should the need arise.
Warm, sunny day in Ontario…enjoy!0 -
Good morning Sisters.
@Strongwoman thank you for all the information you have shared. Also it will be interesting to see if your maple trees develop the dangly flowers!
It is going to be a gorgeous day here today. I have an 8:30 a.m, appointment with my chemo onc. so that will leave me free to enjoy the rest of the day. It will be nice to get out in the sunshine as it is supposed to rain again tomorrow.
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