stage 4 question

lunabella3 said:

newbie- CRC

i have just joined looking to connect with others who are going through the same journey.  I am 46 and am waiting to have radiation next week then surgery to remove colon tumor in mid-September.  I have undergone chemo with a 55% reduction in tumor.  I also have a nodule on each lung which we will deal with after colon issue addressed.  I am fighting hard but have to admit I am tired and a little overwhelmed by the treatments ahead.  Any tips for a newbie? 

From one newbie to another... welcome but sorry to see you here

Hi Lunabella3,

I was diagnosed in March, went through a course of oral chemo and radiation therapy over a 6 week period and have surgery coming up mid-August to remove tumor in colon.  I have a small lesion in liver that may be biopsied during surgery if it's easy to get to. Otherwise that will be addressed afterwards.

The only thing I can cover is the radiation treatments I had which lasted for 6 weeks. Not sure how long yours are going to go on for so my experience may not be the same as what yours will be.  Plus, I live alone so most of what I had to do was make things as convenient as possible.  I rearranged the area around my bed so that everything was easily accessible (i.e. medications, water bottles, drinking straws, tissues, and pads for the bed (just in case).  I ordered groceries from the local grocery store for delivery every week and if I absolutely didn't feel like cooking I ordered food using an online service. I stocked up on a dozen or so audiobooks. I setup my laptop next to my bed for easy access to email, Skype, etc. and used my laptop to listen to books, watch movies, place orders for food and groceries, etc.  I made sure my phone could be charged next to the bed. 

I had no major problems with being able to eat although my appetite did decrease and I lost about 12 pounds over the 6 week period.  Because the recommendation from the dietitian during treatment was to eat small meals and snack I also stocked up on Carnation Instant Breakfast (no sugar version as I was a diabetic), protein bars, and meal replacement bars.  I didn't have any particular ones that I preferred, it was more a matter of just getting enough calories and nutriition in me each day as possible. Laundry went to a place about a block from me that charges to do laundry.  Mostly I stayed in my bathrobe because all of the clothes I own no longer fit. When I drove in for treatment I wore shorts and a t-shirt.

I don't know what everyone else's reactions have been to radiation therapy but the most annoying issue for me was the physical side effect from the radiation related to bowel movements.  Even taking Lomotil and Immodium around the clock didn't help to slow things down much.  The first couple of weeks wasn't too bad but by week 3 I was averaging 20+ trips to the bathroom both day and night which also meant I wasn't getting much quality sleep at night.

One thing that took awhile to sink in is that the radiation continues to work for weeks after the therapy ends.  The surgeon and oncologist set a 12 week (3 month) recovery period post-radiation before they'd do surgery. Again, everyone is different but it took about 6 weeks after the end of the radiation treatments before I could sleep through the night and another 3 weeks before I started feeling close to normal which meant not having to be close to a bathroom 24 hours a day.  

So, my main tips, at least related to the radiation, are - Be lazy.  Make everything convenient. Stock up on easy to grab (and reasonably healthy) snacks. Possibly stock up on toilet paper and ointments. Don't expect to recover overnight but be grateful if you do.

Another thing is Vitamin D3. I stopped taking it during the treatments (for some unknown idiotic reason) and by the time the treatment was over my D3 level was extremely low.  When I had that conversation with the oncology clinic they said that since D3 plays such an important role in GI health that I should have been taking it during treatment. So, if you haven't started it you may want to discuss taking Vitamin D3 with your doctor.

Good luck to you.

Bill