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Brother diagnosed with stage 4 colon cancer

Colorectal Cancer | Last Active: Jul 25 2:14pm | Replies (47)

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@rjjacobsen

Been thinking about a response here.

First, I'm sorry for your brother's situation.

As a colon cancer survivor (stage 3C), I'll share my experience in how to help. Let me say up front, this is probably not at all what you expected.

1) As a sister, you probably will not have full knowledge of the situation due to data privacy laws/policies unless your brother/spouse has explicitly allowed or shared it.

2) Second, often well-intended people offer advice, much of which is bad and much of which doesn't apply. A patient gets lots of solid advice from their medical team and can easily get overloaded from that side. Patients need concern and caring from friends/family, but keep the unsolicited advice minimal.

3) Practical helping of both patient and spouse is recommended. It's very hard on both and it's not a short duration event - it's a series of events more like a marathon which is taken one day at a time. Once on chemo, it's a very up and down situation as the week one gets chemo they go downhill fast, then recover the second week, then do it again - usually 12 cycles.

-- Providing meals is helpful. Offer this, but also let them decide when.

-- Ask how you can help. What they need will change with time, so you may need to periodically do this.

-- Driving to the infusion center is helpful as the patient often can't drive themselves. My trip was 40 miles one way. Often the patient goes home with an infusion pump, runs it for 44-46 hours, then has to return it. Lots of driving.

-- Having a trusted companion (usually the spouse, but not always) along to appointments and doctor visits are helpful - the patient can easily suffer information overload so another observant adult along taking notes is helpful.

-- Be encouraging. It helps the patient to be insistent to continue the treatment, while being patient with themselves when they are weak. It is easy to quit treatment prematurely, difficult to stay with it. While chemotherapy can beat the heck out of someone, it's important to stick with it unless there are serious medical conditions which call for stoppage. But, remember it's also the patient's call to make.

-- Helping the patient get out of the house when up to it - even if only a few minutes or an hour. I had chemo during COVID and a simple, short car ride was wonderful.

-- Chemo messes up the nervous system - throat and mouth are extremely temperature sensitive and throat can spasm, as can extremities like fingers, so when taking them out someplace for a break, consider that. Hearing and balance can be effected as well.

-- Don't be surprised if there are breaks in the chemo plan for rest/exams or adjustments to the plan as in what chemicals are used.

-- Short visits are better than long ones - often words aren't necessary, just being there is enough.

-- Chemotherapy weakens the immune system - therefore if you have a cold, flu, illness, etc. it's a good idea to not visit in person.

I hope that's enough to get you started.

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Replies to "Been thinking about a response here. First, I'm sorry for your brother's situation. As a colon..."

This was very helpful and I appreciate all the thought and effort put into it. Fortunately the hospital where he will be getting his chemo is just a 7 minute drive so that is a plus. He has a lovely wife, Erin, and you have reminded me that she needs to know there are people in her corner to help and to talk to also. She has two daughters that she is very close to and who love my brother like a father. One also lives right across the street. Erin's mother currently lives with them and she has stage 4 COPD so yes, she also needs support. She does have a part time job so after reading this I need to ask her if she is able to go to all the doctor appointments. I can certainly make arrangements for someone to stay with her mom if that is an issue. I so pray the chemo is kind to him. My sister (half sister) just went through rectal cancer, stage 2. She is clear now but the chemo and radiation did a number on her body. It has been over a year since her chemo and radiation but her body is still not back to normal. Thank you again for your kindness in responding.