Well, he's 3 months out and this morning is his PET scan. I'm just a bundle of nerves. They have us set up with his chem. onc. next Monday to go over the results. Do we really have to wait a whole week for results?!! I think that will be the longest week of my life.

Things are going ok. He's was doing very well with eating, got his PEG out last week. Then, I swear his mouth got even drier and his taste buds just stopped working again. He also developed a sore spot on his left palate that gets irritated depending on what he eats. I looked in there and it doesn't look like much but he said it can really hurt. I'm a bit worried about that spot. It doesn't seem like he should have a new sore spot at 3 months out. So, finding foods he wants to eat has been a real challenge. Sometimes I feel like I'm letting him down when I can't come up with something that will taste just ok to him. This recovery is really, really hard and I have the utmost respect and empathy for all of you.

Please send out good thoughts, prayers, vibes our way today. Take care, all of you.

Carol

Carol,

I'm sorry for the anxiety you are experiencing. No, I don't think a week is reasonable at all. All my scans the first few years were reviewed the same day. I would call the doctor's office and tell them you want an earlier appointment.

As far as the sore, I hope the doctor is well aware of when it started. Anything "different" needs to be communicated as soon as possible. It may be nothing, but a medical professional familiar with the care and treatment of your husband needs to address everything to your satisfaction.

Also, keep in mind what you have experienced is very stressful. I sense you have some anxiety over a couple of things and I am wondering if you are taking care of that. When I felt the anxiety building, I took medication to help keep calm, and there is nothing "wrong" with that.

I hope the scans show the best possible results.

Carol, recovery is a looonnngggg road! What taste good one day might taste like garbage the next and then next month its right back on top of the favorites list again. His sense of taste will come and go for months. For most patients they were still noticing improvements even at the 2 year mark.

Wishing you all the best with the scan. Many "spots" are nothing serious while some are. Always err on the side of caution and get him checked out (even if he doesnt want to). Its always to be better safe than sorry.

Best wishes!


PS.... Im sure your cooking is awesome! Be kind to yourself Being a caregiver is tough work and you have done an outstanding job!

As usual, thank you for your replies. I'm sitting in the waiting area right now. They just took him back.

Yes, that sore spot is definitely going to be checked. I told him yesterday that they told us not to hesitate to bring up anything of concern. Well, this is a concern. He agrees. It's looking like he's getting thrush again, as well. Why is thrush always hanging around? Is it the mouth being so dry?

Thanks again for taking the time to offer advice. It's so appreciated.

Carol

Everhopeful64

I want to wish you good luck with the scans. I hope its a all clear.
My mother suffers with what seems like thrush also but I think its the dry mouth causing it . My mother always has a bottle water with a straw in it next to her. Also the magic mouth wash 3 to 4 times a day does help some. We found the CVS Brand of dry mouth spray from CVS Pharmacy works a little better than the Biotene Brand.

Best Wishes
Heidi

Heidi, I'm so sorry your mom is having such a rough time. I've been reading your posts and I feel so badly for you both. You are a very loving daughter and caregiver. I am saying a prayer for you both tonight. May you find strength and peace.

Carol

Carol,

Thrush is caused by yeast. Some people have a problem with it and some don't. The loss of saliva also complicated things because there are less enzymes to effectively manage the yeast. It is present throughout the gut in everyone. Some things that escalate it are sugar and yeast such as in bread, or pizza or even beer. It can be a white scum or yellow or brown on the tongue, the oral cavity and even the throat. It is almost always painful as it gets worse. One thing that may be noticeable is a sour smell, almost like a dirty dishrag. It is easiky treatable and the doctor should be able to diagnose it quickly.

Hi Carol

I wrote a post in Facebook back in May. Five days after finishing rads I felt I was on the "home stretch". How naive was I! Thought it would be fun to share that post.

"Today's symptom of the day is brought to you by oral thrush. Once just a pesky coating on the tongue it has proven too hard to shift despite the constant mouth washes and 2 rounds of Nilstat drops. It is now yukky yellow bundle of lesions becoming a nuisance at the back of the tongue. Doc gave me a script to knock it out. So what do I need for this doc? A capsule before I go to bed every night for two weeks, probably with no side effects except it might make you drowsy with Endone. Is that all??? Pfft. Hardly a challenge. Hopefully it is that simple. Speech and diet went well today, only lost 0.7kg this week. They're happy, docs happy, all good. Not done yet, but we're definitely on the home stretch now."

Well that was May. Its November, I'm still off work, but I start back next week. Recovery takes a ridiculously long time but hey, beats the alternative.

I wanted to pick you up on you letting him down with your cooking. This is very common. Stacey prides herself on her cooking, and she went to great lengths to cook something I could eat. She would spend an hour cooking something and I would take a bite and say no. It was very frustrating for both of us, but there wasn't anything we could do about it. But there is something very important you can help with.

He needs to try all sorts of things. A mouthful at a time. Might be boiled rice and milk, or peanut butter and cream over a poached egg. Might be KFC potato and gravy. What he needs you for is ideas. He'll have weird cravings like a pregnant woman, and won't really know what he wants. Simple tastes with familiar smells worked for me. But he will get frustrated when he runs out of ideas so he'll need your help.

The PET result took a week for me too, I don't know why it takes a week. It was a long week. I'll add my prayers to the others, we have a hotline. If you ever see God's desk there's a red phone under a glass case marked "OCF".

Hey there... chances are the sore area on the palate is nothing but regular mouth sores/ulceration, a person's mouth is very sensitive post radiation for a long while. I had a few sore areas that came and went over months and I would deal with them quickly and they would go away. It's when they don't that you have to worry - though the tissue in his mouth is damaged so healing tends to take longer. From what I know of scans - in my experience - it's usually less than 24 hours for the results to be finalized. I wouldn't wait a week. Call earlier and see if you can get in on a cancellation I have had results in as little as 3 hours.

they shouldn't make you wait... you've been through enough. Also remember sometimes the scans will show hot areas, this may be related to healing and inflammation or infection, so not all that glows is cancer, though a good radiologist and ENT can pretty much figure out what is worrisome. Hugs and blessings to you.

Well, we met with the CO today and he's very pleased with hubby's PET scan.
He said a bit of a hot spot but no hyper metabolism uptake at all. Hubby is holding his weight pretty nicely 2 weeks post PEG tube removal even though he's been pretty limited in what he eats. So, a happy day for us, to be sure! He will now continue with monthly scope exams with his ENT or RO and won't be back to his CO until Feb. His blood chemistries are still a bit out of whack. Low potassium, low WBC. The only thing they appear to be concerned about is his potassium. He's been on those horse pills since August. Has anyone else had funky labs 3 months or more PT?

Thanks for all the replies. Don't know what I would do without you all.

Carol