July 13, 2020

Lots, lots, lots of good stuff.

Last Friday (3 days ago), a friend referred me to an oncologist and reached out to him. I reached out to him as well. He was out of town so I did not expect to hear back until this week. Well, he wrote back on SUNDAY and then contacted me on Monday morning at 8:40 a.m. about my medical records. Then, he had his scheduling coordinator contact me and she was an absolute doll – very knowledgeable. She actually talked to me – about my symptoms, the pain, and followed up letting me know when I would next hear from her. She was great.

You have to understand that I have not had any contact with my now former oncologist since my first few days in the hospital in June. When I need to contact his office or his office needs to schedule me, I speak with a different person each time, often leaving or receiving just a message. I have no idea who they are or what department they are with and, when I do reach them, no one talks to me or can answer a question because their limited job is to schedule an appointment. It is the most dehumanizing system I have ever experienced.

So, to have a doctor take time out and reach out to me promptly and to have a point of contact with one administrator who is kind and knowledgeable – well, I feel like a patient should – like a human being. He’s going to fit me in ASAP.

I changed my colostomy bag again today. It is getting a little easier but it’s still difficult for me. I don’t know if I’ve cut the right size but I have an appointment with the stoma clinic in a few days so I’ll find out. I think everything looks good but it’s nerve-wracking when I take the bag off. It pulls the skin (practically on top of my incision) and I never know if the glue goo has gotten around the stoma and will hurt it or pull out the stitches (can’t think about that – yuck!!!).

What else? I finished one of my prescription bowel meds so I didn’t produce any stool today – painful, not good. I’ll be increasing other over the counter meds as directed. Hopefully, my bowel will learn it has to do a lot of the work on its own again. My poor bowel. It really isn’t happy about all this …

I also finished my daily shots of blood thinner a few days ago – thank god! I really hated giving myself those shots and I seemed to get worse and worse at it as time went by. I had to put it into a fatty spot but I don’t have any fat left so it was just very tough. Not fun.

What else? Blood again when sloughing – not much but still frightening.

Tonight I was reading an article in the newspaper about a couple who had cancer. The husband had Stage 4 colon cancer, received treatment and became cancer free. I was told this isn’t possible. I don’t get it … Maybe I’ll have a good result too …

Anyway, that’s it for this busy bee. Good night!

Love, Molly2923

One thought on “July 13, 2020

  1. I’m glad the process of finding an oncologist is getting better. Are you using some kind of adhesive remover to remove your bag system and then to remove any adhesive it leaves behind. Please contact me and I can help you understand what I do and why. I have myself a “new” stoma all over again so what I do with it isn’t all that dissimilar than your process.

    A cure for stage iv colon cancer IS possible but statistically still not likely. I do know a few through Colontown who had tons of cancer in their abdomen who are now cancer free, but it was a very difficult road to get there. For more and more people (but still not enough), cancer can become a chronic disease and have chemo for life. When you meet with your oncologist, talk about palliative care. As a group, palliative care is a group of sometimes docs and nurses (I saw PC nurses, others I saw were docs) who are dedicated to quality of life while you are going through treatment. They are NOT hospice, though sometimes hospice may call them in. For example, my onc helped some with anti nausea issues, but it was really PC that I dealt with to get my nausea under control.

    Seriously, if you haven’t already, join Colontown. There you’ll find Information about all the latest treatment options and things you’ll want to know about your specific cancer. Beyond that, it’s a wonderful support group.

    Like

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