My husband was diagnosed with stage 3 BOT/HPV- about a year ago. For the last year, he's gone through 8 weeks of radiation/chemo, and then a follow up round of chemo that lasted weekly for about 4 months. I've been trying to be very supportive and positive, but at the same time, I know that somewhere in my brain, I was also preparing for the worst. Well, about 3 weeks ago, he had a PET scan, and it came back clear. His doctor is feeling very optimistic about his being "cured," and my husband is thrilled. I am trying very hard to also be happy with the results, but there is someplace down deep inside that is terrified of believing that he is in the clear. I know that I have distanced myself from him out of fear. Is there a way to stop expecting the worst? Any suggestions so I can stop looking over my shoulder? I'm just afraid to let myself believe it and getting a round-kick to the head when it comes back. Anyone else is this same boat?

Hi Stacie
I also had bot scc and my wife supported me through the process, I too have a pet scan coming up scheduled on the 28, I am scared of results luckily my wife is optimistic, I'm sure she is scared as well but never let's it show, times like this we need your support more than ever, don't let this terrible disease take away your life like its trying to take away ours, remember in sickness and in health odds are everything will be clear going forward, Wayne needs all of your love and support as all us survivors do ....ken

You're about to receive tons of solid advice from lots of awesome folks on this board. My experience was, as a tough guy, I am not going to be one of those "every headache is a tumor" people. I'm stronger than that.

That lasted until a clogged salivary gland that was swollen, kind of hard and sore. I completely freaked out.

After we figured out what it was it was obvious I had to come up with something a little more realistic. My cancer probably won't come back. But it might. So what am I going to do TODAY? If there is bad news coming in two weeks, it still doesn't change what I do with TODAY. Do stuff you love with people you love. Have to work? Work doing stuff you enjoy with people you like hanging with. I didn't do that the first half of my life and now I wonder why...

Everyone gets bad news. With a little luck, my bad news is 30 or so years down the road. I still get mopey every now and then but now I will re- read what I just wrote you and make "The Main Thing" the main thing again. What you're feeling is normal, how you respond to it is in many ways up to you. Peace and blessings!

Hi Stacie,
I think all of us who were the caregivers have felt or are feeling what you are feeling. It can be absolutely paralyzing if you let it. There were days I let it for sure, but then I decided that if it comes back down the road and I give up everything now in anticipation of that, then I have wasted what little time we had. I even have said to a fellow caregiver that sometimes I just tell myself we have 5 years so live it well...Of course don't know that. We are a year and a half out of tx and all is well so far. We freak a little at PET time, but we wouldn't be human if we didn't.
I hope that you can find a way to wrap your head (and heart) around this. He really does need you. I think they feel like a stranger in their own bodies as it is without their family making them feel unwelcomed or unloved too. Hang in there...
Kathy

Hi, Stacie
I still haven't figured out how to deal with the fear of recurrence - but the amount of time I spend worrying about it is getting less and less - and pretty much confined to discrete events (e.g., follow-up scans).

Meditative breathing exercises help me. Other have found some sort of counseling to be useful. This is a rough road to travel, but there is help available along the way.

My very best to you and your husband.

Maria

Stacie - your husband needs you to share his optimism and the joy he feels. Try to think of all the positives, enjoy the special moments you have to the fullest and celebrate! My son is 6+ years from the end of his Tx and the "what-ifs" still attack me sometimes but I quickly push them out of the way - it really does get easier. Being my son's CG has made me appreciate so much more the good things and the small things, too. No one knows what tomorrow brings but we cannot let it rob us of the happy experiences that are possible today. Oral Cancer has already done ENOUGH damage! - don't let it take away even a moment of pleasure that the two of you can share together. Meditative deep breathing is good, exercise or anything that gets oxygen to the brain, doing something for someone else, etc. Many years from now, when you are both "old and decrepit" your memories of the happy stuff will keep you going. So get started, "fake it 'til you make it" - You can DO it!

I was in isolation/quarantine for 6 months from chemo, and not knowiing my cancer status was with stage 4 tonsil cancer that was left off with unfinished treatment was the worst, so I had plenty of time I to think what the cancer was doing to my body. Finally 8 months later, I had a PET, and all the cancer was gone, but I continued to wonder, until finally I did have a recurrence, my dreams dreams finally came true! After several bouts, I got tired thinking about it, and moved on, probably after being more active in another hobbies, but I still kept trying to be informed by studying this disease, the side effects, and anything about to keep ahead of the beast. I guess it's fear of the unkown we fear most. I guess I met most of my fears, and fear no more. Cancer slapped me around alright lol, but I'm not turning the other cheek, I was knocked down once, really I fell to my knees, and I got back up, and I may have cancer, but cancer doesn't have me anymore.

As the saying goes "time heals all wounds" and unfortunately that's what it's going to take. It won't ever completely go away but it does take a back seat as you both return to your new normal life.

What you need to do is ask yourself, have we done all we can? The best doctors? The best facility? Did we follow through on all treatment? He's had a clear scan, that's a really good sign, beyond this it's out of your hands. We could all face a recurrence. But we could also get hit by a bus stepping off the curb tomorrow. You can't live your life on what ifs but you can enjoy the now you have. It will likely take some time to move beyond this fear. But with each clear check up and with each month that passes it does get easier. hugs.

Hi Stacie,

You've heard from some very wise folks. I'd be reiterating what they said however it's true. Living in fear is not living.

From your post, it seems to me that the fear you're experiencing is causing you a great deal of stress and angst, to the point of causing you to withdrawal from your husband at a time he needs you to be joyful along with him at such great news of being NED. Perhaps some counseling would be appropriate under the circumstances. Cancer can be just as hard on the caregiver as it is on the patient.

Positive thoughts and prayers

"T"