HPV tonsil, throat cancer spread to lymph node chains & clumped

Hello @valx and welcome to the H&N Cancer group, a place I think no one would ever image life would take them to. As my wife says, “ life is what happens when you’re making other plans.”
Moody, restless, depressed. Sounds about right. Men especially don’t like a change to life. We don’t like it when the dishes are rearranged in the cupboard. Cancer will rearrange his life so yes, moody to say the least. To add to moody, like most men, he probably ignored symptoms until he could no longer ignore them and by then things are worse. But blame and hindsight only works in political campaigns.
He must prepare for battle. Surrender is not an option. Most of us on this feed are here because we fought this battle and won. Yes his life will change. Yes his health will be altered ( hopefully temporary). Yes everything else comes to a halt while this war is fought.
Could I please be privy to his age? Also is he going to a good cancer hospital? And perhaps can you you keep me updated on the treatment plan? Is he getting a feeding port or tube?
I can assure you have come to a good place for answers. Your medical staff most likely has not been through this from a patient’s standpoint. Great people but they just don’t get it until they get it, if you know what I mean.

Hello Thank you for your quick response.
My husband is overseas in a Scottish cancer hospital. This is part of our issue being 5,000 apart and trying to get answers is virtually impossible. He just had his 58 birthday.
No feeding tube is required at this time.
A gaping hole in his throat / neck area where the lymph node chains exploded out of his neck and after this first aggressive round of Chemotherapy, have seemed to retreat a tad bit back inside leaving a hole which he must be very mindful and careful with. I am planning to leave to be by his side in 15 days. Trying to orchestrate all this so far away is awful to say the least.
He lives alone in our flat amd that's really concerning.
If only he were here in the states. But I flew him home on an emergency flight to get him the care there, as he is a British citizen and has no insurance in the states as a permanent resident.
The whole thing is so stressful.
He afters from anxiety anyway and won't admit it to the medical staff. Since chemo he is having signs of explosive disorder.
Not sure if it's just his anxiety taking over or a side effect of chemo.
It scares me.
He's now telling me, not to come, just for his funeral.. this too us very worrying.
My heart breaks each day that I have a strong willed man who is not fighting like I thought he would.
As I told you the mood swings are very apparent and I will do my best to support him and not give him reason for any adfitional upset.
His second round of chemo start June 23 I won't arrive until the 26th. I don't know what to expect. Other than reading Google, which usually is a bad idea. Lol
But no Doctors or nurses have emailed me it's up to me to get there to discuss in person what happens next.
His radiation will start after this second round of Chemotherapy. Fear of the unknown is what is hurting us both.
The NHS is probably different I'm their handling of cancer in some ways. This too is concerning.
I don't have alpt to go on. Nor yet anyway
My husband also suffers for many years with advanced Alchalsia, a rare disease of the esophagus. Perhaps look it up. We thought the two were related. But nobody seems to be able to say. Despite all this, he was already struggling with swallowing keeping food down. Now Cancer of his tonsil and throat and lymph nodes had knocked him for a loop.
I appreciate any and all words you may have, I am a strong woman or at least i thought i was now im questioning that a bit.
But the truth is what I seek here. To be encouraged and told what others have gine through.
Will he want intimacy? Will he physically be capable?
Should I just let him constantly lie down? I've told him to get up and try to be active and walk and get fresh air now that they've released him from hospital fpr 3 weeks.
So until he returns to hospital for his next round I was hoping being home, would cheer him up.
It seems he is getting even more sad and angry.
But
Thank you again, sir.
I really appreciate the support you offer.

The NHS has done some remarkable work with cancers, particularly down in Birmingham, and I know that research is shared throughout the UK.
I personally have no experience with chemo so I am hoping and would think someone else will pop in on this discussion shortly.
Dr. Google can and often does lead one down the rabbit hole. Stick with the actual medical community for your answers I would advise.
Definitely your husband cannot and should not be alone during this fight.

One more thing. If he is a Scotsman then he is not allowed to give up. The Scots never give up. I am a quarter Scot and beat this bugger twenty-two years ago along with subsequent follow ups. He can do this.

Hello @valx , so sorry this is happening to you both. Cancer diagnosis and treatment plus anxiety issues is a tough combination. I had radiation plus a targeted therapy for 7 weeks after my surgery in 2012. It is a tough time, but survivable knowing there is an end in sight. Keep an eye on the light at the end of the tunnel. Nausea and inability to eat due to changes in the taste of food and pain in the mouth from radiation make nutrition hard to attain. With his achalasia, I would think a feeding tube would be a huge help and I would request it if it were me. Total exhaustion is very real and you have to listen to your body when you need rest. That said, keeping up with whatever exercise you can accomplish will keep your strength up. Maybe it's a 10 minute walk down the street, but it will help and getting outside helps your attitude also. He needs to dig down deep and find a positive attitude that he can beat this thing. With great doctors and all the new immunotherapies, etc his odds get better by the day. Books I have read that helped build hope: How Not to be My Patient by Ed Creagan MD, a palliative care doctor at Mayo Rochester. You can buy it via their bookstore or on Amazon. I also appreciated Radical Remissions by Kelly A Turner. She also wrote Radical Hope along the same lines. Join the head and neck support group SPOHNC as they have recipe books and good information for managing Radiation and chemo effects. Get him to use Connect if you can, it is such good support. My husband was not always a good patient during his cancer journey either and I am convinced that the caregiver role is tougher than the patient role many times. It is so hard to know what they are going through, and to see them in pain and depressed. Be supportive when you can and also take time out for yourself to stay healthy amidst all this stress. This is a marathon and not a sprint, but there is a finish line ahead to be his first goal. Hugs and best of luck to you both.

He is a Scotsman through and through. Born and raised in Edinburgh. He also worked for her Majesty many years and all the battles he has fought were with enemies he could see. Now this- and it is never what anyone could have expected him to have to fight, an unseen enemy. I will go June 26 to him across the pond. Meet with his ocology tean. I extended my stay to August 8. I'll have six weeks to be by his side and provide encouragement before I must return to the states. The thought of having to leave him alone again, then, is unbearable. Somehow the universe had us find one another year's ago for a reason and I will fight his battle with him, no matter what.
We have a special saying between us ...
U + Me = OUI
(It's French )
Thank you again for writing to me.

Unfortunately he already had made a firm decision to refuse a feeding tube of any kind. It ultimately is his decision. It is painful to watch and hear as he talks about suicide if in fact he cannot get fluids down or eat. This is our biggest fear right now. He has no pain as of yet in his throat. Just no taste buds and this is very very difficult especially with an Alchalsia patient. Hes lost 67 lbs too in 4 months !You see it's been 12 years of agonizing Alchalsia and he is worn out. He has advanced alchalsia and if it flares up again, this could be the end of the line. I knew, despite him telling me to stay here in the states that I MUST go to him. I see his depression worsening and he is becoming hopeless. I however recognize that I need a support system -as we have no close family membrrs and those I've told, have not even responded in any way sadly which is shocking ! We have a 20 year old daughter and she is trying not to fall apart over it all. She needs me too. Noone said life would be easy. So Any
and all support and continuous communication would be immensely appreciated.

I have seen other cancer patients just get tired of all the mess that their lives have become. I think I understand that feeling of having no strength left to continue. As you say, it is his decision and after all those years of battling an incurable condition, he is tired. May you all be blessed with peace and acceptance.

I am so sorry for all the challenges you, your husband, & your daughter are facing. Cancer is nothing anyone expects to get, or have to deal with in their life. Your husband’s history of achalasia, & anxiety are added complications. I’m really glad you will be with him soon. Having you close will absolutely help, no matter what he says. In my opinion it’s very important that his doctors know of his history of anxiety, & of his current struggle with depression. I was one of my sisters primary caregivers during her cancer struggle, the doctors added Ativan to her Zophran to help with nausea. It is an anti anxiety medication that helps with nausea. When I was being treated with chemotherapy & radiation therapy, I requested the same combination. It was the ticket for me too. Maybe your husband would consent to that, if he remains unwilling to share his history of anxiety?
I’m going to share some of my history because you’ve asked about others chemo & radiation experiences. I hope it doesn’t feel like I am hijacking the conversation. I was diagnosed with stage IV ureter cancer in 2021, had 4 courses of chemotherapy (was supposed to have 6, but the side effects became too severe), followed by 28 radiation treatments. My sister had lost her battle with cancer 3 years before I was diagnosed. Our family does not have a significant history of cancer, & ours are not related, so both of our diagnoses were very surprising. During chemotherapy, I became very depressed, it caused unrelenting nausea, & fatigue, & I didn’t have much faith that it would work, because it hadn’t with my sister. The doctors were saying the same optimistic things that they had to her. In spite of my lack of faith, & depression, I went to every treatment (often when I didn’t want to), & continued to do as I was told. After I finished & started feeling better, my depression went away. Your husband will be sicker than he has ever been in his life. Chemotherapy is really hard on your body, & makes you feel awful, radiation is worse. I had a second cancer & subsequent chemo radiotherapy this time anorectal. My oncologist told me throat/mouth, cervical, & anorectal radiation is the worst, because they are mucous membranes, he warned that radiation would be awful, he didn’t lie. I had the last radiation treatment on 5/19/23, I am still using a fentanyl patch for the pain, although I am weaning off. The radiation caused first through third degree burns. It will be a terrible time for your husband. I am seeing the light at the end of the tunnel though. I hope it gives me some cancer free time, to enjoy life with my husband, & family. I found it most helpful when my husband invited me to sit outside with him, or if I wanted to go for a short walk (most often I didn’t, I was beyond tired, & as you know depression exacerbates that), it infuriated me if he suggested that it would be good for me to do those things. I felt judged, & pressured, I also knew that he needed to see me doing those things to make him feel better about my condition. The pressure of that is almost too much to bear, along with all the physical struggles you are dealing with. I’m so sorry that you aren’t there to hold his hand, & be present with him, also glad that you will be soon. As far as intimacy goes, my current burns are to all my intimate areas, so it is not even a consideration. With the first cancer, intimacy was not possible during the first couple weeks of treatment, & each course makes you more sick than the prior one. I would suggest physical touch, hug him, rub his back, massage his feet, & head. If he is able, & interested, it will lead to intimacy, if not, it will help calm & sooth him.
In regards to nourishment, whatever he can do to stay hydrated is most important. Frozen fruit bars, lemon in water, whatever sounds good. For me weird things helped with the terrible taste in my mouth, like sour gummy worms (which usually gross me out), sweet gherkin pickles, lemon drop candies… The area I think you should push him, even at risk of making him mad, is being honest with his doctors about what is going on emotionally, & saying yes to pain medication, feeding tube, &/or fluids. For some reason (most likely the additional time at the hospital) I resisted getting fluids. My husband pushed me to, & although it made me mad in the moment, the result of feeling better immediately afterwards was worth it to both of us. It is ultimately his decision, but as you know, you are both battling this disease, & everything that goes with it. Just one more thing, try not to push him to be positive or have hope, or be stronger, or a better fighter. Being angry, depressed, sad, full of grief are very real, & legitimate feelings to have. Telling him to feel otherwise diminishes his feelings, & will not make him change them, but may make him want to hide them & isolate himself more. We all know this is unfair, unplanned, & unwanted, & sometimes we just need to be able to have those feelings. Have a safe trip. I hope being together is very helpful to both of you. I wish for you all, the strength, patience, & love necessary during this most challenging time.