by Chelsea Burrell | May 22, 2020 | Uncategorized |
I haven’t addressed this yet, but it’s of course on all of our minds. None of us really expected this, it has created a new world we are living in now.
The VIRUS.
Maybe I see this differently as I am a nurse and knowledgeable about infectious disease, but I don’t think this will be over until we have a vaccine or an effective anti-viral drug to treat it. I don’t see a vaccine being available for at least another 12-18 months, and then billions of doses will have to be manufactured and distributed and paid for. Anti-viral drugs are few and far between, so I don’t know if we’ll find another treatment for it.
I’ve never been a terribly social person. As a college professor, I am now teaching my classes on-line, so I am able to stay at home. I have lots of things I like to do; sew, crochet, play piano, read, write, hike- so I am doing fine with the stay at home orders. I live near the Dunes State Park, so go hiking there 2-3 times a week, so I still get “out”. I’m going on a solo camping trip next week.
But I know many others struggle. I did go out to get vegetables etc. for my garden (I have an N95 mask I wear whenever I am out), and I was surprised at the number of people I saw out and close to each other and not wearing masks. I think they just want life “back to normal”. I think we’ll see another spike in cases.
But I think people are still watching out for each other. I was in a grocery store the other day (with my mask of course) and the floor at the entrance was wet and I fell. Three people (also wearing masks) rushed over to see if I was okay and to help me up….they weren’t 6 feet away, I told them that but they didn’t leave. That really had an impact on me! It seems especially when times are hard, people look out for each other.
But I think of all of you. I at this time don’t really feel vulnerable to cancer. I’m trying to imagine what it’s like for those of you actively fighting cancer. I told you uncertainty was what made my cancer journey most difficult. How would I have felt if I was dealing with the virus too at that time? When I was dealing with cancer I always knew I could die soon, how does it feel to have your life threatened now by both the virus and cancer? Or maybe I would have felt the virus was much less of a threat, the death rate from cancer is much higher. Maybe the virus wouldn’t have had much of an effect on me compared to cancer.
I’d like to know how you feel. You can leave a comment here or email me, or maybe we will talk about this a bit in our next support group.
by Chelsea Burrell | May 16, 2020 | Uncategorized |
Today is my anniversary date! I had my cytoreduction surgery May 15th 2001, so May 16th 2001 I was cancer free, all tumors had been removed. This is the first year I wasn’t absolutely sure the 16th was the day. I just know my anniversary day is the same days as my daughter’s best friend’s birthday, and I double checked, yes, today is her birthday and my anniversary date! Next year will be 20 years! And still no one calls me cured, I am just in long term remission. Whatever….just words. I feel cured and that’s what matters!
I had so many dates in my head…March 28,2001 was the day I was diagnosed. I believe I was in New York for my evaluation 4 weeks after I was diagnosed, and my surgery was about 6 weeks after I was diagnosed. I was discharged from the hospital 6 days later. I had my 6 EPIC (early post operative peritoneal chemotherapy) treatments over several weeks following the surgery. The first two were done in New York, but the last 4 were done at my oncologists office at home. They had never done peritoneal chemotherapy in my office at home, but I was a nurse and learned how to do it in New York, so I taught my oncologist and her nurses how to do it! I supervised them while they did my infusions! My last day of IV chemotherapy was January 22, 2002, so I was in treatment of some sort for almost a year.
I’m working with my website designer. We will build the support group into the web site. In the end, the support group will be by request. If you want an invitation to the support group, you will need to submit your email address, then you will be mailed the link. I think that will be a good thing. As I am a college professor, so I’m also thinking of good ways to use the support group for education! Don’t worry, it won’t be a class, it will be a support group. I like it that we can do it virtually, we can see and speak to each other. It’s almost like “being there”! I’m sure it will be a learning experience for all of us. Until we get it set up on the website, though, I will still post the support group links on my blog. We will just transition down the road.
Also, several years ago I had my previous we designer design a Facebook page for the Appendix Cancer Connection. I used it for a bit, but since I don’t use Facebook myself personally, I let the business Facebook go. Someone said I needed to use Instagram and Twitter for my non-profit, so I went to a seminar to learn how to do that -but my web designer said I might better be able to communicate using Facebook. Now I’ve forgotten the password, and the email that was my username is no longer active, so I need to find a way either to get back on that Facebook page, or to delete it and create a new one for us. I just got to realizing how many people I know who use Facebook…more people than I know who use Twitter! So that’s in the works too!
I am open to any comments or suggestions any of you may have! You can email me at Carolyn@appendix-cancer.org or leave a comment here on the blog!
Take care!
Carolyn
by Chelsea Burrell | May 9, 2020 | Uncategorized |
Hello Everyone!
We just finished our first Appendix Cancer Support Group via Zoom, and it went great! We could see and speak with others dealing with appendix cancer. This was the first support group meeting, and there were three of us (and our husbands!). One from Ohio and one from Hungary and myself, so it was an international support group!
We all decided we want to continue to meet, for now we decided we want to meet monthly. For the next meetings the preference was a weekday and not weekend. We’d thought about doing an evening meeting, but since we are international and Hungary is about 6 hours later than Central time, we decided to meet Tuesday June 2, 2020 at 11AM Central time. I will again post the invitation and link to the support group on my blog.
We will discuss at out next meeting if we want to have a regular date and time after we see how many attend and what time constraints are.
For now I will post invitations on my blog. If we continue to have regular meetings, my web designer will make the support group an addition to my website. My web site designer suggested maybe down the road, I send email invites instead of posting the invite on my blog in case we get someone who tries to “crash” the meetings, but I think that’s a wait and see thing. For now I will post the links to the group on my blog.
I would love to hear from anyone re: you feelings about the support group. You can leave a comment here or email me at Carolyn@appendix-cancer.org. I think it will be a great thing!!!
Take care and stay safe!
Carolyn
by Chelsea Burrell | May 9, 2020 | Uncategorized |
Hi All! Had a glitch with my login link, so try this new one!
Carolyn Langlie-Lesnik is inviting you to a scheduled Zoom meeting.
Topic: Appendix Cancer Support Goup
Time: May 9, 2020 10:00 AM Eastern Time (US and Canada)
Join Zoom Meeting
https://ivytech.zoom.us/j/95311881663
Meeting ID: 953 1188 1663
One tap mobile
+13017158592,,95311881663# US (Germantown)
+13126266799,,95311881663# US (Chicago)
Dial by your location
+1 301 715 8592 US (Germantown)
+1 312 626 6799 US (Chicago)
+1 929 436 2866 US (New York)
+1 253 215 8782 US (Tacoma)
+1 346 248 7799 US (Houston)
+1 669 900 6833 US (San Jose)
Meeting ID: 953 1188 1663
Find your local number: https://ivytech.zoom.us/u/ac5OzeAyFM
by Chelsea Burrell | May 6, 2020 | Uncategorized |
Hi! This is the invitation for this Saturdays support group at 10AM Central time. At the time of the meeting just click the link. You can join the meeting audio either with your computer cell phone, just call one of the phone numbers to participate via your cell or home phone.
Look forward to meeting you!
Carolyn
Saturday Zoom Support Group Invitation
by Carolyn Langlie-Lesnik
Hi! This is the invitation for this Saturdays support group at 10AM Central time. At the time of the meeting just click the link. You can join the meeting audio either with your computer cell phone, just call one of the phone numbers to participate via your cell or home phone.
Look forward to meeting you!
Carolyn
Carolyn Langlie-Lesnik is inviting you to a scheduled Zoom meeting.
Topic: Appendix Cancer Support Group
Time: May 9, 2020 10:00 AM Central Time (US and Canada)
Join Zoom Meeting
https://ivytech.zoom.us/j/93927801460
Meeting ID: 939 2780 1460
One tap mobile
+19294362866,,93927801460# US (New York)
+13017158592,,93927801460# US (Germantown)
Dial by your location
+1 929 436 2866 US (New York)
+1 301 715 8592 US (Germantown)
+1 312 626 6799 US (Chicago)
+1 669 900 6833 US (San Jose)
+1 253 215 8782 US (Tacoma)
+1 346 248 7799 US (Houston)
Meeting ID: 939 2780 1460
Find your local number: https://ivytech.zoom.us/u/ac5Vlmp0Pi
Carolyn Langlie-Lesnik | May 6, 2020 at 2:50 pm | URL: https://wp.me/p91aTz-sr
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