Treatment Tips & Insights, 5 month post treatment

caholz33

I was stage 2, lucky, very localized tumor was removed by colorectal surgeon prior to treatment (at the time it was an "unknown mass").  Treatment was 25 days radiation with chemo weeks 1 and 5.  Pretty standard I think.  I was lucky to be put in touch with 2 survivors who gave me advice and support and a feeling of not being alone.  Definitely try to find somebody through this venue and establish private email/chat/FB messaging ... believe me you will end up discussing some incredible TMI conversations that you may not want to post on this forum.  I was not working during treatment and able to stay home, another great blessing.  Info that I think may help newbies:

1) Actively manage your food and elimination.  Avoid fiber, nuts, tomato, cheese, heavy meals.  I took Ducolax softeners and Ducolax mild laxative daily, generally tried to keep myself in a state of mild diarrhea, which I found most comfortable.  Further along in the radiation I did not need the laxative tablet.  If you think diarrhea is getting too severe, do NOT take a full dose of any anti-diarrhea medication ... you do not want to risk giving yourself constipation!  Start with a 1/4 or 1/2 dose. 

2) Consider a PICC vs. a port.  I went with a PICC since the treatment period is less than six weeks.  It can be a annoying, but it was WONDERFUL on the last day of chemo when they took it right out (easily and painlessly) at the infusion center.  When I was at my weekly chemo onc appt, I'd have to pop over to infusion so they could do a weekly dressing change and flush. 

3) Trying to stay clean will feel like a new part-time job.  And the PICC didn't help, as it needs to be covered in a plastic sleeve for shower/bath.  I mostly took baths.  Baby wipes are essential.  Get flushable, but even when they say flushable that can cause plumbing issues, so I only flushed the ones that really needed it, if you know what I mean.  You will then use 5 more for dabbing ever so gently at your poor skin, better to throw those away.  I kept plastic grocery bags in bathroom to collect and put directly into trash.  Near the end, I needed to have a big cup of water to pour over myself when I went (#1 and #2) to help with the pain, and that also would help get clean.  Going to the bathroom will become a 1/2 hour thing, since you can only stand to dab just enough to get clean then you need to air dry from the water poured everywhere.

4) The last day or two of radiation and the first 5-6 days afterwards were the worst for me.  Have PLENTLY of pain med for this time.  I could not wear underwear during that time, just cotton dresses.  I did nothing except bathe, eat & drink water, and go to the bathroom.  Otherwise I was in bed with the dress pulled up off my skin, fanning my poor self.  Take your laptop in the bed and visit this site for support and remember that we all got through it and you will too!  The time seems to go by slowly but IT WILL PASS!  And then you're done, yeah!!!

5) My prescription plan didn't cover magic mouthwash (for chemo mouth, which happened the week after chemos).  We ended up paying for it ourselves, but it was still a big delay while the pharmacy chats with the insurance people and then leaves messages for you that your prescription isn't ready.  I had full blown chemo mouth by the time anybody gave a definitive answer about our coverage.  So if you have time find out if your plan covers compounded formulas containing non-prescription ingredients. If they don't cover and you don't want to pay (mine was $80), get Maalox and children's Benedryl and mix 50/50 as a next-best substitute (my survivor buddy found this out for me.)  And FYI, notice that many chemo side effects don't happen until after the chemo week, I was confused about that - I thought I had somehow breezed through chemo and even started worrying if it could have been some kind of pharmaceutical fraud and there wasn't really chemo in my pump!

6) Avoid going out in public and avoid touching doors, money, touch screen credit card screens and stylus pens.  Don't hug or kiss friends who visit.  If you must touch anything, have antibacterial lotion ready.

7) It helps to eat healthy, although I didn't eat fresh veggie/fruits (except bananas, which I washed before peeling), to avoid bacteria.  My favorite foods:  boiled carrots, sauteed spinach, chicken, greek yogurt, toast with peanut butter, ground turkey patties and pasta with butter or olive oil.  It's counterintuitive but avoid otherwise healthy fiber during treatment:  eat white bread, not whole grain, regular pasta, no beans.  Overall I avoided sugar but started eating ice cream when my mouth got sore after chemo, and then I continued to eat a little bowl of ice cream every day.  I stopped after treatment, haven't had any for several months. 

Hope this might be of help for anybody getting ready for treatment.  It's a big rollercoaster without much time to prepare.  Good Luck to All!!!

 

 

 

mp327

caholz33

Thanks for posting some very good tips for any newbies who are just starting their treatment.  There were so many things I didn't know that could have helped me get through treatment with less pain and suffering.  The advice from someone who has already been through it is most often the best as the doctors and nurses just don't know.  That's what makes this site so very important.  I hope you are doing well and I wish you all the best in the new year!

caholz33

mp327 said:

caholz33

Thanks for posting some very good tips for any newbies who are just starting their treatment.  There were so many things I didn't know that could have helped me get through treatment with less pain and suffering.  The advice from someone who has already been through it is most often the best as the doctors and nurses just don't know.  That's what makes this site so very important.  I hope you are doing well and I wish you all the best in the new year!

mp327

Happy New Year to you too!  This site is a great idea.  I was SHOCKED at how little advice is given by the medical professionals on all the peripheral issues:  diet, cleansing, comfortable elimination, or products (such as the plastic sleeves).  I think they handed me one little sheet on radiation that advised not to use lotion before treatment.  It's very hit or miss.  Hope you are doing well also, Cheers! 

mp327

caholz33 said:

mp327

Happy New Year to you too!  This site is a great idea.  I was SHOCKED at how little advice is given by the medical professionals on all the peripheral issues:  diet, cleansing, comfortable elimination, or products (such as the plastic sleeves).  I think they handed me one little sheet on radiation that advised not to use lotion before treatment.  It's very hit or miss.  Hope you are doing well also, Cheers! 

caholz33

I would agree that the medical professionals who are in charge of our care during this treatment are not well-informed about a lot of things that would be most helpful to pass on to their patients.  I was totally clueless about a lot of things.  I was not a participant on any support sites at that time, so I got no advice from someone who had actually been through this.  My rad onc introduced me to another of his patients with anal cancer with our mutual permission and we tried to help each other as much as possible.  Unfortunately for me, she was 2 weeks behind me in treatment, so while I was able to give her a heads up on some things, she couldn't really do the same for me.  Still, it was a comfort to be able to talk to someone who had the same diagnosis.  For me, that was over 5 years ago and so far, so good.  I have been on support sites since I was 2 months post-treatment and am determined to make sure that no one seeking help goes through this alone.  Take care and many blessings to you in the new year.

Krissy59

mp327 said:

caholz33

I would agree that the medical professionals who are in charge of our care during this treatment are not well-informed about a lot of things that would be most helpful to pass on to their patients.  I was totally clueless about a lot of things.  I was not a participant on any support sites at that time, so I got no advice from someone who had actually been through this.  My rad onc introduced me to another of his patients with anal cancer with our mutual permission and we tried to help each other as much as possible.  Unfortunately for me, she was 2 weeks behind me in treatment, so while I was able to give her a heads up on some things, she couldn't really do the same for me.  Still, it was a comfort to be able to talk to someone who had the same diagnosis.  For me, that was over 5 years ago and so far, so good.  I have been on support sites since I was 2 months post-treatment and am determined to make sure that no one seeking help goes through this alone.  Take care and many blessings to you in the new year.

Martha

"am determined to make sure that no one seeking help goes through this alone."

Martha, You are doing a terrific job at making sure no one goes through this alone. You are so knowledgeable about our diagnosis and the treatment and follow up protocols. I have learned so much from reading your posts and I just wanted you to know how much I (and many others, I'm sure) appreciate all that you do. 

Thank you very much!

~K 

mp327

Krissy59 said:

Martha

"am determined to make sure that no one seeking help goes through this alone."

Martha, You are doing a terrific job at making sure no one goes through this alone. You are so knowledgeable about our diagnosis and the treatment and follow up protocols. I have learned so much from reading your posts and I just wanted you to know how much I (and many others, I'm sure) appreciate all that you do. 

Thank you very much!

~K 

Krissy

You are very kind and I appreciate you letting me know this.  However, there are so many people on this site who are doing the same thing--sharing information and supporting others.  We are all in this together, albeit vitually.  So many times, long-term survivors (meaning 5 years and beyond) drop out of sight, which is unfortunate, because others need to hear that it is possible to get to that important milestone and beyond.  I guess people just prefer to move on.  I've thought of doing that, but I just don't feel it's in the best interest of those who need encouragement from an "oldie."  Unfortunately, life has many twists and turns and I know there will be more events down the road that may take my attention away from this site and others.  My mother is 89 years old,  has dementia, and lives 600 miles away, so at some point I will be spending more and more time with her.  I guess it's things like that that make some people disappear from the websites.

Take care and thank you again for being so kind.

Martha