Hi all......
wishing everyone well!. We are almost 4 months out of treatments and PET scan is scheduled this Thursday, June 8th.
We took a bit of time these past few weeks as his recovery made such positive strides.... took a few short road trips, short weekend away and some time to get in the kayaks and ride a bike together. Two weekends ago.. we rode a few miles on a lovely woodland trail, and kayaked in the afternoon ........ spent the day outside in the sun. we were so delighted and had such a "good day"!!!

His trismus was improved some, swallowing was less painful, tastebuds were back and even figured out why he had neck and shoulder pain * rotator cuff partial tear .. PT will be sufficient.

BUT.... now. he seems to have lost mouth opening diameter ..almost overnight. he is having pain near his lower jaw on the left side (tumor side and earache/pain... all this mostly when he moves his mouth to eat,, sometimes talking. He had some more noticeable swelling on the left.. neck, chin etc........ he is doing lymph drainage exercise alllll the time.

but this is so discouraging for him. he is uncomfortable and no longer can eat some of the foods he was able to just a month ago.

I am calling the Med onc office to just to let them know in anticipation of our apt on Thursday in case they want to think about possible adding bloodwork or ??? on to the day.... PET scan and several appts with the provider team.


I don't know.... what to think .and am trying to NOT think it could be recurrence ............. not sure if this is now post RAD scarring/fibrotic tissue, is it lymph? all of the above.

keeping him comfortable and supporting his spirit is getting harder. he doesn't take a lot of meds and says the Tylenol, tramadol, aleve etc aren't helping as much and he is VERY reluctant to head back to narcotics ... he really disliked, coming off of them after his treatments.

and his spirit.. he is sooo discouraged ( understandably)..........


some days .. I hear... I just want to go to sleep and sleep all day... and I know that is his sadness and he even is aware this sounds of depression.

goodness.....he has so much to be grateful for and to... and we are so hopeful..... but also so nervous, worried and anxious.

thank you to OCF...and
anyone stopping by to reply

I am so sorry to hear this. I also used to hear my husband making that exact comment about sleeping. We talked to the medical team about medication for depression. We decided to wait and see if dealing with some of the medical issues more effectively would improve his mental state. It did but honestly even now he is just not himself. I feel torn about if it is anything meds could help. Honestly, sometimes I think maybe he is just entitled to feel sad about all he has lost and it is wrong to expect anything less. When that natural sadness becomes depression that merits or would even respond to treatment is a good question for your medical team. It is another medication and my husband is SO sick of meds. He is almost off of everything and says he'd rather struggle some emotionally than add in another med to the mix. Plus I don't know if he has the patience at this point to wait for them to take effect. Being a caregiver is hard sometimes but I always feel like it is never as hard a being them. My husband said a lot of concerning things during treatment. Now he just seems not himself. We are still talking about meds but since he may have a surgery coming up he just is resisting having something else to juggle. I don't have any real advice except have an honest conversation with the medical team. I can tell you I feel your struggle. We just had an amazing weekend and my husband was not as excited about it as I hoped he would be. The emotional recovery is proceeding with the pace of the physical recovery. Moving along at the speed of a glacier. Yes, we are impatient but I am sure it isn't even a fast moving glacier, although I comfort myself with the idea that glaciers do move with persistent force. Hang in there. I tell myself that every day,

Awwww!!! Im soooo very sorry to read about your husbands great progress and the disheartening setback. Unfortunately to the dismay of all patients and caregivers, the recovery phase is full of ups and downs.

I feel so bad when you tell us about how well he was getting along and how you were able to get out and do some fun things together. I hope this low phase is very short and your husband returns to being how he was on your weekend trips quickly.

As far as your husbands recent problems, Im glad you are calling his docs to let them know whats going on. Always notify them of any change just in case they think its something that may be serious where they need to investigate further. At 4 months post rads, he is getting the usual post rads tests most patients go thru. Hopefully the new issues your husband is experiencing is nothing more than scar tissue thats starting to become bothersome. The only other thing I can think of is your husband probably has a compromised immune system. Being out and about he could have picked something minor up that for him is not easy to get over. I cant imagine how upsetting this must be to your husband. Poor guy has been thru enough!

I wish you both all the very best with his upcoming tests. Please let us know how your husbands tests and appointments go. Best wishes!

Dear Sooner~
ah, in turn... me too... I wish we didn't have the reason to connect like this and for this reason, but thank you for reaching out.
I sure do understand the not being the same part of your comments regarding your husband... I can only think it changes one from this experience .. but at the same time he is still not long out of recovery.... it takes a toll on the mind, body and spirit and life as we.. they know and knew it is changed. Maybe as some time passes, parts of recovery can become more accustomed to.

the ability to withstand, endure and find strength in the midst of the treatments is one thing but the recovery is another process and we so desperately want to just get back to our old life again.. fully well knowing it won't really ever be that way again. It is a loss as well..

I often say, that some people don't grieve the loss and maybe that is part of the change.. although, grieving it won't really make it any different will it?
sorry, that was a bit of a philosophical digression.
as a caregiver... I always know what my husband had gone through and continues to go through and that is what I measure myself against.

anyway.. I sure do hope you can find a way to have more amazing weekends and that he too will become more excited about them. ..
take care!! both of you

HI Christine!! how are YOU???
thank you for your thoughtful reply and thoughts..
it sure is discouraging and so hard to watch... I sure have cried a lot these past few days; I honestly would give up my arm to help him heal and stay well.

anyway, I was thinking the same as you -wondering if he is down a bit on his immune health.
when the PEG tube was in .. I was mixing a fine cocktail of immune support, essential oils, fats, probiotics, tumeric and soo on..
but he HATES the texture of powdered mixes so is very hesitant to let me mix up my awesome healthy shakes for him...

so, while he takes vits, and eats as best he can... he is not getting in the same nutrient/immune support he was before.
NEED to change that a bit... realizing this as I write -- he is just going to have to work on developing a taste for them

I did call, left a message. He is in for bloodwork. I did some more research today and actually I think he is showing signs of a similarity to temporal mandibular syndrome. I think someone referenced a name of dental onc specialist in NY.. we have one here, but he gave my husband all the BAD things talk on his first visit back to hi after treatments and he walked out of there so despondent and a bit broken by all the bad news that he said he didn't want to go back. ... seems maybe a gentler approach to the oral health challenges would be valuable for people just two and half months out of treatment. .......sigh. I would love to know if there are any dental/ oral surgeons who specialize in oncology challenges in the New England region ... a reference list or something like that.... who work with trismus, and all the treatment modalities.

alas.. the rain doesn't quit here lately and is not helping the sense of spirit around here.
Thank you Christine for your un-ending support, shot in the arm boosts, compassion and just being here for alllll of us!...

thank you for caring about the test results...
there is HOPE.

take care Christine!

Mrs W -

Glad to hear your husband has made it through the treatments and sorry to hear about his mental / emotional state now.

Recovery from the physical is easily tracked. Scars soften, swelling goes away, etc The mental aspect of recovery for the patient and the primary caregiver is much harder to asses.

Life has thrown a lot at you and your husband over the last year or so. While getting back to his old ways may be a goal, you and your husband may have to recognize and accept a new "normal" With acceptance and patience, over time, his emotional and mental states may improve.

Good Luck

thanks BJMpittsburgh..
you have been a source of encouragement, support and words of experience for me and us over the past 6 months. thank you.

we were learning our new normal... and it sure is a process ---

but the curve ball is the hotspot on the PET from last week to include two new spots on lungs ... not seen 6 months ago.

thoracic surgeon apt on Friday. biopsy of hotspot on 6/20.

each day is a new challenge now... in a different way.
we had some moments of hope, of coming to a place of finding hopefulness in what is....

now.. we are trying to live not in despair with what might be but holding onto -- the OCF mantra... a spot is just a spot until proven it is not.

but it is SCARY as all Hell.......


I hope you are doing well and holding up in the heat...
take good care

Trismus is very scary, can worsen suddenly, and is very difficult for a caregiver to watch. You asked about referral to a specialist -- Our situation is different in that my husband's trismus was related to a dental extraction post treatment. We ended up with oral surgeon at Mt. Sinai/Beth Israel Hospital in NYC Institute for Head, Neck & Thyroid Cancer Department. Someone else on this forum consulted with an Oral Medical Specialist at Tuft's Dental School.

I'm sorry to say that it is difficult to get to the correct dental person... the dentist your husband saw is a dental oncologist? There are very few so that's unfortunate about his manner of approach at such a delicate time in your husband's recovery.

I started to type much more but it may not apply to your current situation. Feel free to ask here or PM (private message to me under My Stuff tab at top) for more details.

I hope thoracic consultation goes well and will be thinking about you.