Today has been rough. I have not felt well all day. I woke-up this morning, only to go right back to sleep. I was eventually forced out of bed in order to get ready for my radiation appointment. I feel achy and drained. I had a headache for much of the day and my appetite is not what is should be. In fact, I know for sure I did not get my recommended calories for the day.
I was able to get a shake down this morning and half a shake down for dinner. For lunch, I tried a packet of the Liquid Hope. It was a successful PEG feeding, although I would like to get a larger syringe. The syringe I have now requires me to refill it six times before I can finish a single packet of the Liquid Hope. This isn't necessarily a life or death issue, rather a matter of convenience.
As my taste continues to diminish, I am left with a foul taste in my mouth. I can only assume this is the natural "taste" on my saliva that I am not used to. If I had to describe it... its very bitter and salty. Water does very little to help. Every time I take a sip of water, I am reminded of this foul taste. I think it is a normal, physiological reaction to analyze taste anytime food or drink enters the mouth. My hope is that I will get used to this new taste as my new normal. Otherwise, I may be forced to drink water through my PEG as well. You would think one could force themselves to ignore taste for the sake of choking down some food, but I can promise you it is not that easy.
Today's appointment was quick and easy. Jess was worried that we were much too early. If turns out the staff was ahead of schedule today and the person in front of me hadn't shown up yet. So, I was raced back as soon as we walked in. We were in and out in under twenty minutes. I was certainly happy this was my last treatment for the week. I need a break.
So we end week three having had three of six chemotherapy infusions and thirteen of thirty radiation treatments. By Tuesday, I will have made it half-way through the treatments. Lets hope the next three weeks go by as quickly as the first three have.
Did your radiation oncologist set you up with a prescription for the compounded formula that's more commonly known as Magic Mouthwash? It contains several medications including lidocaine to help temporarily numb your inner mouth and throat. The meds in this mouthwash can be swallowed, which is needed to numb the throat area. In my own case, I would swish it in the mouth, then gargle to hit the back of the mouth, then slowly swallow to coat and numb the pain that was in my throat. Your pharmacy will mix the ingredients for you. Online there are differing views of the value of this mixture but I don't think I could have successfully completed the radiation sessions without it (and the baking soda/salt rinse). The mouthwash also helps fend off an oral condition called thrush that is best to avoid (or delay).
ReplyDeleteFor your tube feeding, your insurance should also cover the gravity feeding stand and bags that will aid taking in the nutrition (plus meds and fluids) without having to labor with a syringe. The type I used was made by Covidien, called a Kangaroo Gravity Feeding Bag. It hangs from the floor stand which has wheels so you can move around as you take in food. I needed to take in 2-3 bags of Liquid Hope each day so I would even hang a food bag from the same pole that held my chemo when a chemo appt would overlap with my feeding schedule.
You're an active guy (so am I) and it doesn't seem normal to start feeling tired often. Yet, the body is trying to tell us it needs rest as part of the healing process. You may also experience chills (even though you'll have no fever). If that happens, have a blanket you can put under you in addition to covering with one. This side effect (chills) will slowly lessen after treatments end. Living in S California during a rainy, cold winter, I was wishing for Tucson-like warmth a lot.