Hi. I'm trying not to let the "what ifs" drive me over the edge but sometimes it's hard not to go there. John is not one to mention and panic when he has any kind of pain, bump etc. He mentioned to me around a month ago that he was having some chest discomfort. We both go to the gym and I thought maybe he overdid it there. I suggested he call the family doctor and get it checked out. He decided to wait a few weeks to see how things were with not going to the gym. Finally last week he called and went to see the family doctor. He did an EKG and checked him out and said he thinks it is muscular in nature. Meanwhile John doesn't think it is and is still having discomfort. He has an already scheduled appointment tomorrow with his Radiation Oncologist. He mentioned to me last night that for the past three weeks his lower left jaw has been bothering him and is a little swollen. Like I said he doesn't tell me things immediately because I tend to "panic". He hasn't had a CT Scan for over a year so I assume the doctor will order one. I'm trying not to panic but with both issues going on at the same time it's hard not to. Just posting my fears here because it's hard to talk to other people about it.

I told John that the pain in his jaw could be radiation damage. Any thoughts on his symptoms? I will let you know how his appointment goes. He generally is very low key and doesn't worry about things but I can tell that he is worried about what is going on. Wanda

Oh, Wanda - I know it is so-o-o hard to drive those "what ifs" away! But it's good you have the appointment tomorrow and will find out what's going on and you don't have long to wait. So often the worrisome symptoms that come up are just normal stuff. Try to think of all the things that have been good news, like the clear CT scan and clear Pet scan and the doctor telling you about the possible muscular nature of the pain which seems very reasonable in view of your husbands gym experience. Just remembering my own tendency to panic, I find myself taking deep breaths for you now! Try to think of all the possible Good results instead of the negative ones. And do something physical - walking around outside is good. Hope everything goes well tomorrow.

Wanda:
My thoughts are with you and John for good results on the problems he is having. I definitely know how miserable you can be waiting to "find out" if anything is going on - seems like I do it all the time, and drive the nurses crazy to get the results of my scans/tests. In fact, I'm having my 6-month CT scan next Monday, and already am freaking out. What a wuss (is that a word?). Anyway, my prayers are with you guys and let us know when you get the results - WHICH WILL BE GOOD!
julieann

I am in the same boat right now. Ken is now 3 1/2 months post treatment and his recovery has been slow but he went back to work 3 weeks ago. Around the same time his throat started to hurt a little more. We attributed it to talking more and trying to eat more. The past few days his speech has been more muffled. We went to his ENT today and he moved up his scans that are scheduled for 6/30. Deep down I know they are just being cautious and there isn't anything to worry about until we get the results but I am really struggling with getting used to this being our "new normal".

Hi Wanda, The swelling in his jaw could be lymphedema from radiation.

It is hard not to worry. Anne-Marie has given you great advice to try to manage the stress.

I drove myself crazy with worry because things didn't happen when we thought they would and aren't happening now for a different reason. So, I forced myself to let go of what I can't control and mentally go to my "happy place". Being somewhat of a control freak and a worrier, it was no small task. I'm learning to love my "happy place" and am thinking of buying land there and building. I could use the write-off. Just teasing.

I can't change things, I can't change people. All I can control is how I react and how I choose to let it affect me. I guess this is my way of getting off the rollercoaster ride for a little while. I think I'll be mentally better prepared to deal with something serious when it comes up since I'm not constantly wearing myself out with worry. That's the idea, at least. One thing that helped me was to remember not to worry until someone (doctor) gives me something to worry about.

J waited 9 months to address the lump in his neck. Having a stoic man who procrastinates is difficult. But, the upside is that you know to take it seriously when they tell you about something or they make an appointment with their doctor. Remember, it is stoicism and not a 6th sense that something is wrong. Try to hang tough until you get the scans done. And then, I'm still not going to let you panic if something shows up. Remember, it isn't cancer unless a biopsy tells you it is.

Keep us posted on how things are going and how you are holding up.

Sending positive thoughts and a hug...

Sandy

John had his visit yesterday with his RO. He scoped him and examined him. He said he couldn't see or feel anything. He ordered a PET scan which John will have done tomorrow. He hasn't had any scans done since last year. Still praying that everything is o.k. and that the chest and jaw issue aren't related. Waiting is so hard but I'm ALWAYS a "glass half full" kind of girl and keeping positive.

Slim:

Prayers headed your way for GOOD PET results for John's scan tomorrow, although you'll probably have to wait several days for the results. Maybe start pestering them for the results so they won't make you wait too long. Since tomorrow is Friday, maybe Monday start calling. That's worked for me before, so hope it does for you. Waiting is the worst thing we have to do and makes me so nervous and anxious I can barely function. Hope you can hear fairly early and pray for the GOOD news.
julieann

Keeping you and John in my prayers! I like Julieann's approach...pestering is a good thing! That way maybe you won't have to wait so long. Waiting is hard and stressful. You've got a great attitude and you are a great caregiver. John is very blessed to have you.

Hugs,

Sandy

ok, girls, you are ALL such wonderful caregivers! I have been down this road for over a year now, and it still seems surreal. Some days I think when I wake up, this has all been a bad dream. Does that ever go away???
My John is dealing with mets to lungs and has just been told his latest chemo is not working. His doc is recommending a new approach -- peptide immunotherapy -- a new clinical trial involving vaccines at a new CCC 4 states away from us. They are doing wonderful things with it for other cancers, I hear, and this one is specifically targeted for HPV+ SCCHN, but is in phase 1 trial. It is our last hope I'm afraid. If this doesn't stablilize it, I don't know what we'll do.
Sandy, your 'happy place' sounds like somewhere I need to be right now. How do I get there???!!??
Bonnie

@ Bonnie: I'm sorry to hear that the chemo John is getting isn't doing the job and he's been dealing with lung mets. I have heard great things about some of the new treatments that are being tested. John's doctor isn't giving up so there's a good reason to have hope.

I know that feeling about waking up happy and then realizing the nightmare isn't over...so much for having a happy day, huh? I haven't been at it for very long, and right now, we're pretty much still in limbo. You have been fighting for much longer. Stress takes a toll on a person. Bless you for all that you are doing for John. He's so fortunate.

Since J wouldn't push for a scan when he changed doctors, I had to find some kind of peace. I could only 'urgently suggest' (okay, yes....nag) so much before I realized it wasn't going to happen. So, my happy place came from letting go of the decision making process. It wasn't mine to handle. I'd love to send you a one-way ticket to come stay! All you have to do is try to put aside the things you know you can't change and try to find things to do that make you happy. Easier said than done, I know. Acceptance isn't an easy thing but can be a real gift.

Sending hugs! Keeping you ladies in my thoughts and prayers.

Sandy