1. < Just Want to Talk
Mentor

When plans change because of health issues. How do you cope?

Posted by Ginger, Volunteer Mentor @gingerw, Mar 9, 2020

As a society, we look forward to our vacations, or trips, or social outlets and activities. What happens when we have to modify or cancel those plans, because of a health concern, or our own illness?

Recently I decided to cancel a planned for and highly anticipated trip, due to concerns over exposure to crowds and the coronavirus. I live in a very small rural town, and even heading to the closest "big city", that is only about 20,000 people. I had made travel plans last August, for this March, that's a sign of how excited I was. But I deal everyday with immune system issues, and just cannot justify to myself the risk involved. So, I will stay home, and work on my creative endeavors alone, and "watch" through social media, rather than be in a room with 50 other people from all over the country. Waiting to hear if my payments made will be refunded in whole, or not.

What have you had to change? How has your mindset been modified in light of your own health issues? How have you handled the request of an employer to do a business trip that might take you far away? If your plans include young children, how do you explain to them, how things might be different? With Spring vacations/trips looming on the near future, what will you do instead?

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 20, 2020
In reply to @tallyteresa "The change in my plans were not travel.related, but are medical in nature. Was diagnosed with..." + (show)
@tallyteresa

The change in my plans were not travel.related, but are medical in nature. Was diagnosed with breast cancer 2 weeks ago and had planned to get surgery and subsequent treatment behind me very quickly. The good news is that I should be ok.following all that, but I am now unable to proceed with any of it for the foreseeable future. There is now a moratorium on all non-emergency surgery which I must first have to begin radiation and hormone suppressant.therapy. Trying really hard to find any blessing in the delay, but it is getting harder to stay positive given.the difficulty in even having consults with drs I will need on my care team.

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@tallyteresa Welcome to Mayo Connect. We are a diverse group of patients/family members/caregivers, who share our strength and experiences with others along their journeys.
Wow, this latest twist on your path must really be hard on you, emotionally and physically. What have your medical team members and the social worker told you the timeline might be? Are they comfortable waiting for the length of time this might take? Is there an interim procedure that can be done?

Do you have a good support system around you with family and friends who care about you?How are you spending your days, right now?

Perhaps this brief delay will help you get more prepared for radiation and hormone suppressant therapy that follows the surgery.
Here is a link to the breast cancer group here on Mayo Connect. I hope you will be able to find some good information there, also.
https://connect.mayoclinic.org/group/breast-cancer/

If you are comfortable, I hope you will return and tell us more. We care here.
Ginger

REPLY
1 reply
tallyteresa | @tallyteresa | Mar 20, 2020
In reply to @gingerw "@tallyteresa Welcome to Mayo Connect. We are a diverse group of patients/family members/caregivers, who share our..." + (show)
@gingerw

@tallyteresa Welcome to Mayo Connect. We are a diverse group of patients/family members/caregivers, who share our strength and experiences with others along their journeys.
Wow, this latest twist on your path must really be hard on you, emotionally and physically. What have your medical team members and the social worker told you the timeline might be? Are they comfortable waiting for the length of time this might take? Is there an interim procedure that can be done?

Do you have a good support system around you with family and friends who care about you?How are you spending your days, right now?

Perhaps this brief delay will help you get more prepared for radiation and hormone suppressant therapy that follows the surgery.
Here is a link to the breast cancer group here on Mayo Connect. I hope you will be able to find some good information there, also.
https://connect.mayoclinic.org/group/breast-cancer/

If you are comfortable, I hope you will return and tell us more. We care here.
Ginger

Jump to this post

Thank you for responding and for providing info on the breast group. The biopsy and breast MRI seem to indicate that my cancer is small and non-invasive. Not the slowest growing, but also not the fastest, so in the best of all worlds, I will be fine. Unfortunately, I require neck surgery, too, which is also postponed due to the virus and has now been given 2nd priority after we deal with the breast issue. So I'm in a little discomfort which I'm hoping PT will help if they actually continue providing it and if I deign it wise to go if they do and risk exposure since Im considered high risk. The breast oncologist I had my heart set on caring for me is not accepting new patients due to the outbreak, I learned today. So I've reached out to my cancer specialist at Mayo who monitors a precursor condition for myeloma I have to see how y'all are handling surgeries and the newly diagnosed there now, but don't expect to hear back for a few days given the current load of calls and emails. I am ordinarily a crazy busy person out in the world, but will find pleasure in being home soon. Not feeling great and doing what I can to feel better right now. Monitoring my temp and symptoms to see if I should get tested and will not delay if this looks like it could be "it". Definitely in isolation to protect others just in case.

REPLY
2 replies
imallears | @imallears | Mar 20, 2020
In reply to @tallyteresa "Thank you for responding and for providing info on the breast group. The biopsy and breast..." + (show)
@tallyteresa

Thank you for responding and for providing info on the breast group. The biopsy and breast MRI seem to indicate that my cancer is small and non-invasive. Not the slowest growing, but also not the fastest, so in the best of all worlds, I will be fine. Unfortunately, I require neck surgery, too, which is also postponed due to the virus and has now been given 2nd priority after we deal with the breast issue. So I'm in a little discomfort which I'm hoping PT will help if they actually continue providing it and if I deign it wise to go if they do and risk exposure since Im considered high risk. The breast oncologist I had my heart set on caring for me is not accepting new patients due to the outbreak, I learned today. So I've reached out to my cancer specialist at Mayo who monitors a precursor condition for myeloma I have to see how y'all are handling surgeries and the newly diagnosed there now, but don't expect to hear back for a few days given the current load of calls and emails. I am ordinarily a crazy busy person out in the world, but will find pleasure in being home soon. Not feeling great and doing what I can to feel better right now. Monitoring my temp and symptoms to see if I should get tested and will not delay if this looks like it could be "it". Definitely in isolation to protect others just in case.

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@tallyteresa
Hello
My heart goes out to you and all of you who have underlining medical conditions and postponed procedures. This is adding so much added stress but you sound like you have good coping mechanisms and a positive attitude. Those of us in good health should be thankful and grateful for what we have.

Stay healthy and safe everyone.

FL Mary

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 20, 2020
In reply to @tallyteresa "Thank you for responding and for providing info on the breast group. The biopsy and breast..." + (show)
@tallyteresa

Thank you for responding and for providing info on the breast group. The biopsy and breast MRI seem to indicate that my cancer is small and non-invasive. Not the slowest growing, but also not the fastest, so in the best of all worlds, I will be fine. Unfortunately, I require neck surgery, too, which is also postponed due to the virus and has now been given 2nd priority after we deal with the breast issue. So I'm in a little discomfort which I'm hoping PT will help if they actually continue providing it and if I deign it wise to go if they do and risk exposure since Im considered high risk. The breast oncologist I had my heart set on caring for me is not accepting new patients due to the outbreak, I learned today. So I've reached out to my cancer specialist at Mayo who monitors a precursor condition for myeloma I have to see how y'all are handling surgeries and the newly diagnosed there now, but don't expect to hear back for a few days given the current load of calls and emails. I am ordinarily a crazy busy person out in the world, but will find pleasure in being home soon. Not feeling great and doing what I can to feel better right now. Monitoring my temp and symptoms to see if I should get tested and will not delay if this looks like it could be "it". Definitely in isolation to protect others just in case.

Jump to this post

@tallyteresa Good to hear that you are connected with Mayo Clinic already! Can't find a better group of people. I also had a precursor to myeloma called MGUS. But last November it morphed into smoldering multiple myeloma, plus I also have additional chronic conditions, so I understand the stress and concern in the midst of this international health crisis. Practicing good hygiene and even more importantly keeping your stress levels under control seems to be key for our bodies to not get triggered into illnesses.

Please continue to post here as you need to or want to. What will you be doing during your isolation to keep your mind and body active?
Ginger

REPLY
1 reply
tallyteresa | @tallyteresa | Mar 21, 2020
In reply to @imallears "@tallyteresa Hello My heart goes out to you and all of you who have underlining medical..." + (show)
@imallears

@tallyteresa
Hello
My heart goes out to you and all of you who have underlining medical conditions and postponed procedures. This is adding so much added stress but you sound like you have good coping mechanisms and a positive attitude. Those of us in good health should be thankful and grateful for what we have.

Stay healthy and safe everyone.

FL Mary

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Thank you so much

REPLY
tallyteresa | @tallyteresa | Mar 21, 2020
In reply to @gingerw "@tallyteresa Good to hear that you are connected with Mayo Clinic already! Can't find a better..." + (show)
@gingerw

@tallyteresa Good to hear that you are connected with Mayo Clinic already! Can't find a better group of people. I also had a precursor to myeloma called MGUS. But last November it morphed into smoldering multiple myeloma, plus I also have additional chronic conditions, so I understand the stress and concern in the midst of this international health crisis. Practicing good hygiene and even more importantly keeping your stress levels under control seems to be key for our bodies to not get triggered into illnesses.

Please continue to post here as you need to or want to. What will you be doing during your isolation to keep your mind and body active?
Ginger

Jump to this post

Gosh! I've been monitored for 8 years for my MGUS. Sorry to hear about your progression to SMM. We all know this may be in our future, but can't be easy to hear that diagnosis. Would love to hear more about your care at Mayo and whether you participate in the P -Crowd study at Dana Farber. Hopefully their research will provide a future for us that is free from MM.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 21, 2020
In reply to @tallyteresa "Gosh! I've been monitored for 8 years for my MGUS. Sorry to hear about your progression..." + (show)
@tallyteresa

Gosh! I've been monitored for 8 years for my MGUS. Sorry to hear about your progression to SMM. We all know this may be in our future, but can't be easy to hear that diagnosis. Would love to hear more about your care at Mayo and whether you participate in the P -Crowd study at Dana Farber. Hopefully their research will provide a future for us that is free from MM.

Jump to this post

@tallyteresa My oncologist is Mayo Clinic trained, and practiced there for several years before moving out here to Oregon. I drive 115 miles each way to see him and his practice is highly regarded. I am not part of any clinical trial or group study at this time. I also have chronic kidney disease stage 3B due to an extremely rare condition, plus fibromyalgia and systemic lupus, so hearing the diagnosis was not the first time my breath was taken away medically. I have made serious inroads on maintaining my stress levels to be as low as possible. I find that that helps a lot, along with good diet, reasonable exercise and keeping a positive attitude.
Ginger

REPLY
tyyne21wigwam | @tyyne21wigwam | Mar 15, 2023

This has been hard.if you are used to travel COVID ended that as well as pain. I will never give up and am getting results from more exercising even if it hurts
I am trying more positive self talk. Meditation helps. I need new real id to fly,but do not have energy to go to DMV yet. I am still determined to improve I am aware that I should count my blessings not think about pain..makes it worse to dwell on that.

REPLY
karlie10 | @karlie10 | Dec 22, 2023

Welche Nahrungsergänzungsmittel oder frei verkäufliche Heilmittel nehmen sie gegen den MGUS ein?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 22, 2023
In reply to @karlie10 "Welche Nahrungsergänzungsmittel oder frei verkäufliche Heilmittel nehmen sie gegen den MGUS ein?" + (show)
@karlie10

Welche Nahrungsergänzungsmittel oder frei verkäufliche Heilmittel nehmen sie gegen den MGUS ein?

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Willkommen, @karlie10
You asked:
"What supplements or over-the-counter remedies do you take for MGUS?"

Members are talking about living with MGUS in the Blood Cancers & Disorders Support Group https://connect.mayoclinic.org/group/blood-cancers-disorders/

Click this link to see the MGUS related discussions:
https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=MGUS#discussion-listview

Für die Übersetzung ins Deutsche können Sie Google Translate verwenden https://translate.google.com/

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