Husband survivor of HPV throat cancer

elseylm

My husband underwent intense treatment for HPV Throat cancer in may 2023 and while the cancer is gone, the after effects have been brutal:unable to swallow solids without choking, swelling due to radiation necrosis and lymphedema, sleep apnea. He’s become so discouraged and it’s so hard to just watch him give up. He won’t seek counseling. Cancer treatment center was extremely supportive during intense treatment but then threw him off a cliff as soon as treatment was done with no further “emotional” support to battle the after effects. ENT says he’s a cancer dr, not a psychiatrist. Feeling so helpless.

Ljones091987

While I'm hoping my experience, well, my dad's experience is not a look in the future for your husband, I do want to say I have, and still do, 100% feel everything you are feeling right now. The whole story about my dad is in my "about me" but the cancer center that treated both my dad's cancers (tonsillar 2010, then lung 2011), basically got rid of the cancer, patted themselves on the back, handed him multiple medical bills, and showed him the door. While I know they are not therapists or psychiatrists, they should as oncologists who deal with extremely life threatening diseases, have at least a little humanity toward their patient once they are done pumping them full of poison to beat another cancer, not for the patient, but just to placate their massive god complex. AT THE VERY LEAST, they should have given you referrals to primary care doctors who usually handle post cancer treatment patients, other ENTs for second opinions (like maybe an esophageal balloon dilation procedure), a pain management physician, psychiatric, as well as therapy referrals and resources for support groups. If you would like, I can ask my dad if he has any advice for your husband. It has been 15 years since his last cancer and the dysphagia has gotten to the point where he chokes on ANYTHING he swallows, even liquids, to the point where he can't even take most of his medications anymore. The only help was the fact that I have been battling my own mental health issues for over 20 years and at some points, I know the right thing to say. Sometimes my dad doesn't want me to be all over him when he's having a coughing episode, or trying to keep him positive when he says he wishes he just died from the cancer instead. Especially since his age is not helping to put back together what the cancer treatments did to him, I totally understand why he feels this way. Amazingly, he is still here, despite a horrible string of family deaths the year after his lung cancer treatments were finished. I thought for sure he was going to take himself out. The depression is real, but he has also been a huge jokester since I can remember. Sometimes when he's venting about the way his body and quality of life is now, we can be very comedically morbid. Other times, I have to sit in the room while he has a 25 minute coughing fit over one little drop of ice tea getting stuck, or going down the wrong way. It takes some adapting and 2 years after his last cancer, he was still not handling it very well day to day. Especially after the battle for him to get disability and his doctors flaking on paperwork lost him $14,000 of backpay. He definitely isn't a poster child for managing post cancer body degradation, but he has less days of saying he wants to die in a way that sounds suicidal and makes me sad for him and more days of saying he wants to die in a way that he is being serious, but at the same time he's being funny about it. How old is your husband btw? My dad was 50 years old when he was diagnosed with his first cancer. Age can also make a difference. I asked my dad if he had anything he wanted to add, either advice for you as the caregiver, or his own personal little things that he does for himself. He's not very mobile these days due to oxygen dependence, extreme cervical spine spondylosis, vertebral disk displacement, disk degeneration, muscle atrophy, and just overall loss of physical stamina. As well as not wanting to eat in public anymore. He did say that the one thing that can sound really stupid to some people is how much he still enjoys fishing. He has fished since he was a child, but I guess in the moments of him being in his element with watching the water and waiting for his bite, it helps to disassociate, (in a good way) from the current shituation (yes, I meant to spell it like that), and I guess in a very inpatient psychiatric way, it's his own personal coping skill. A personal coping skill of my own is comedy. I'm not sure what your husband likes, but sometimes youtubing funny animal videos can completely do a 180 on a depressive episode for myself. I know I rambled on forever, but I have been very isolated as my dad's caregiver lately, as he is 69 years old now and I can't count on my fingers and toes how many times I've had a doctor tell me he wouldn't make it through the night. Must be some sort of Keith Richards gene mutation. I always joke at this point, with all the health stuff he's survived, he's probably going to outlive me.😂

I hope this helps, feel free to keep it going. At least if my dad has suffered this long and I have been his primary caretaker for a majority of it, we can at least give you potential timelines and advice. Also, if your husband is okay with it, or if your reaching out to speak to someone privately away from him, I was curious as to the extent of the lymphedema and if it is located in his neck. That really does suck. I would ask a primary care about getting a referral to an endocrinologist, as the lymphatic system is part of the endocrine system and I don't know at all, but maybe there is something they can do to help. Aaaaaaanyyyywayyyyyyy, after all that heavy, I hope your husband has one of his better days and also know that despite feeling absolutely helpless, you are doing your absolute best. You're awesome, your husband is lucky to have you. Keep it up, you're both doing as best as humanly possible in an impossible situation.