Some happy news

This 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.