May 042016

FoodThis last surgery made a big difference in my ability to eat. I even had pizza and lasagna last weekend. Every bite still hurts, but the pain isn’t as intense as it was before. And I still have to take medication around the clock to control it.

I’ve stopped using the tube feeding formula, but still have to figure out what to do about my medications before I can have the feeding tube removed.

Yesterday, I had a follow-up visit with the ENT. I asked her about swallowing the medications and she told me to start with the small ones and see how it goes. She also said I could crush them and mix them with soft foods, and that it’s okay to have the feeding tube removed whenever I feel ready. I tried mixing a couple of my medications with applesauce when I got home. It was disgusting, but it’s an option. I was actually able to swallow a Vitamin B-6 pill, which is the smallest one I have. I’m going to try the ibuprofen next. If I can get that down, I’ll have the tube removed next week.

I told the ENT I’ve been avoiding harder foods like salad, apples, and carrots because I’m scared they will hurt. She told me it’s important to try everything, so I made a trip to the grocery store. Overall, the doctor seemed pleased with the way I’ve been eating. She actually smiled for a change.

After seeing the ENT, I met with a pain specialist. That turned out to be a good move on my part. He said most physicians are reluctant to prescribe pain medications for chronic pain since the CDC released new guidelines for prescribing opioids (due to prescription drug abuse). He asked if I’d considered increasing my dose of hydrocodone, but I told him I didn’t want to. I can’t work if my brain is foggy and pain pills make me jumpy. He did increase the medication I’m taking for nerve pain to three times a day instead of two because it also helps some with the throat pain. Other than that, he kept everything the same as what my oncologist had prescribed. I’m good with that for now.

Out of curiosity, I asked the pain specialist if he normally provides palliative care to patients who have serious illnesses but are not terminal. He said he does it all the time. You may or may not remember I requested palliative care when all of this started. At the time, my primary care physician wasn’t aware that it’s now being used for patients who aren’t terminally ill, but he checked into it and ended up giving me a referral. My oncologist had a fit because he didn’t want another doctor involved and promised me that the doctors I had would take care of my pain. At the time, I deferred to the oncologist. Big mistake.

So here’s some friendly advice. If you or a loved one are ever diagnosed with cancer or another serious illness, insist on palliative care. If your doctor says no, get another doctor.

Another piece of advice for people with serious illnesses. Go to a place for treatment that has doctors who practice in multiple specialties. Even though I have to drive a long way, it’s so much easier having all my doctors in one place so they can talk to each other and read each other’s notes.

 Posted by at 9:39 pm

  10 Responses to “Some happy news”

  1. THIS IS GREAT NEWS! Eating, a little here and their but you are eating again. I am so happy for you.
    And if I ever need your great advice about palliative care and I don’t take the advice come slap some sense into me, okay?

  2. Great news, Julie!!!!! Happy dance!!!! Happy Dance!!!!

  3. Even pizza! Now that is great! I am so happy for you. Hopefully now the ball will roll faster and faster toward a full recovery. The advice you gave about seeking specialized and coordinated care care is spot on. The fact that you have been able to do your blog is amazing. I think it could be a book!

  4. I agree with what Gina said and everyone else! Glad you can even eat pizza! You are an inspiration to all of us! You should write a book about this experience! Big hugs! On your way to a full recovery! Renee

  5. Yay hoo! Love your advice, gotta advocate for best health care!

  6. That’s awesome Julie…you are such an inspiration!! Looking forward to hearing more good news!!

  7. That is Soooo GREAT you are doing so much better. I know you have had such hard time with all of this. I happy for you.
    Love always God Bless he answered prayers.

  8. Julie, I am so happy you are doing better. I too had trouble for a long time swallowing my pills. I hope you continue to feel better each and every day.

  9. Just got back in town and catching up on emails. Yours not only made me smile really big, but set me up to enjoying the weekend. I have been praying for some good news from you and God answered my prayers. I cannot be any happier for you Julie. Having gone through similar situations with Jack I know how much this means to you and John.
    Keep up the good work:)

 Leave a Reply

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>