Thanks for updating, Oakley, I can only imagine how stressed you both are - even if DH isn't talking about it.

I do not have first hand knowledge with this type of cancer, but the DH of my long time hair stylist had oral cancer. He had some type of mouth guard made and dental work done prior to starting treatment. Just wanted to mention in case someone else could chime in about this (might not be needed) or you could ask his Dr's office.

“ I am kind of disappointed that my newish (1 year) DIL who's the RN and lives next door hasn't contacted me to offer any support or advice I may need since she's in the medical field and knows DH's doctors.

Oh well.”

For heavens sake reach out to her. She’s the new kid on the block, more then likely she’s hesitant about overstepping her bounds. If they have only been married one year (COVID) have you even had the chance to bond with her? Call her, tell her you would appreciate her knowledge.

era: because you will need her medical knowledge at some point. And maybe her contacts.

Oakley, I have been both the spouse of a seriously ill person and the seriously ill patient. The spouse role is far harder than being the patient.

It is hard to remember but you need to put your oxygen mask on first before you can help your husband. Self care and accepting and even asking for help and support for yourself is very important right now. I am so happy your doctor was able to offer you a script that might help you through this stressful time.

Please take care of yourself while you help support your husband. Xo

Hang in there oak! I think it smart you got some antidepressants. I internalized when my husband was ill, ground my teeth at night (didn’t know it) and caused thousands of dollars in dental work. I really hope your husbands treatment won’t be too horrible .

You have all your gear right? A home BP monitor, temp thermometer, SpOz monitor/pulse and a log book so you can write everything down the same times each day. It made me feel less hopeless to do those things. The BP monitor was the best as it helped me get husband to the hospital when he needed to go. I had proof in the numbers for him to see with his own eyes. Ours was a different illness but I think it still stands as sometimes sick people can be stubborn.

Oakley, can't add to, but want to echo what everyone else has said. Do take care of yourself and feel free to vent to us anytime you are feeling overwhelmed, sad, neglected, whatever.

Oakley, I wish I had wise words to offer. You feelings seems quite natural to me - a mound of mixed emotions for yourself and DH. A wise doctor once told me: "anticipatory anxiety is worse than the reality". I hope and pray this will hold true for your situation. Try to take it one day at a time and know you've got our support.

Wishing you both the best.

Glad you have answers and a plan. Take care of yourself too.

JT, the other morning I woke up and my jaw was hard to open, so I'm doing the same thing in my sleep.

Allison, I told DH tonight that there is a possibility that the treatments will cause bad stuff to the gums and teeth. He said he wondered why the doctors always looked at his teeth. They've never mentioned going to the dentist though. OTOH, DH has never had a cavity in his life.

Roarah, do you mean the mask worn to prevent Covid? Is it to protect him or me? Today was the first time in almost a year where I went inside a building, and I was so lucky being the only patient there. Fast service ever! lol

Maddie, she's not the type for chit chat. It's weird really, I've never met a personality like hers before. She's not a shy wallflower though, that I know.

I rarely email her & when I do it's always about something specific, and then I may change the subject to something friendly. She never responds to those comments. Seems to be all business if you KWIM.

Oakley I was using the airplane metaphor. The flight attendants always tell passengers to attach their oxygen masks before one tries to help others put their masks on. Lol I forgot about covid masks for a moment. I want you to remember to take care of your physical and mental health first then your husbands. Remember to feed yourself, remember you too will need rest and care during these days ahead.

Oak, I ate those foods during chemo. My potassium was low and I literally couldn't stomach the supplements. Both are high in potassium and raised my numbers into the normal range. My radiation was to my breast so it didn't effect my eating. The key is finding foods that feel good in your mouth and taste good.

Just because your DIL is a RN doesn't mean that she feels comfortable providing info on cancer treatment. Isn't she in cardiac nursing? Onc could be so far away from her knowledge base that she is afraid to give you mis-information.

Like Roarah, I have been patient and spouse in the cancer world. I too feel it was almost easier being the patient. Keeping all the balls in the air as the spouse is something else. Does your oncologist/treatment center have cancer navigators? Mine was invaluable to me in keeping things straight and helping to lead the way thru treatment and beyond.

Thanks Roarah, I get it now. While I do worry about how I'm going to handle this, otoh, since he's not the type to ask for help with anything, I'm pretty sure if his legs work and he's not weak or anything, he'll probably be okay doing stuff on his own.

I was thinking back to when he came home from a 4 day hospital stay a few years ago for heart failure, and I was all prepared to wait on him hand and foot. Everytime I'd ask him if he wanted something he'd grumpily say, "No." I'll just get a little bell for him to ring if need be. :)

RN, I wouldn't dare ask her for medical advice unless it was an emergency situation, what I meant was it would be nice if she simply called or emailed to say if there's anything I need to let her know. It's not only the right thing to do an immediate family member, but the neighborly thing too.

It really is an odd situation but like I said, oh well.

Oakley, like others, I don’t have much useful advice, but I want to let you know I am on Team Oakley. You have a journey ahead but sometimes the only way out is through. I’m cheering for you.

Oakley, sorry to read this, but sounds like you are preparing for the next steps and being open to whatever is called for. Will be thinking of you and hoping for the best outcome.

Well I am sorry you are dealing with all this. As someone else posted, at least there is a diagnosis and a plan-now just one day at a time. I will have you and DH in my thoughts and prayers.

If the radiation is close to the oral cavity, it may cause salivary glands to stop functioning properly. A dry mouth can cause cavities, as food and plaque will stick to the teeth. It would be beneficial for your husband to have a thorough exam and cleaning prior to beginning radiation, getting any problems taken care of, and possibly, an oral mouth guard made for him to wear that fluoride gel is placed in, to help prevent cavities. We have seen the detrimental results of patients who did not do this, and it does not take long for a healthy mouth to break down with rampant decay, possibly just a few months.

I did a little investigating, Even with healthy teeth up until this point, it is something to ask about.

First Article.

Article on mouth piece.

Pre Treatment article

Praying everything goes smoothly for you and dh, and that his treatment is successful. Take care of yoursel!

I'll be sure to tell DH about the oral cavity which I had to look up. The Mouth. lol I'm pretty sure it's too late to do any real work, his teeth are fine but he did tell me he thinks he has the beginnings of gum disease which would require more extensive work. I know several doctors have checked out his gums and teeth already, but he never asked why. I'll definitely go over it with him.

Those of you who said to stay off the internet were right. I didn't get a lick of sleep, none, because it really doesn't look good for him but I won't tell him that. I read quite a few indepth articles and research papers and learned quite a bit.

So I went shopping afterwards! So far I bought him a new overnight/carry-on bag which he needed.

He will need an electric/battery razor since the facial skin will probably be too tender for a razor but a shaver is okay. He told me to wait on that but I may have to get one before it hits.

Thank you all for being here for me. This is when I wish I had a mom/sister/daughter I could confide in.

Oakley, I am so sorry to hear about your husband’s diagnosis. its been good to read about people on this very board who have recovered from what seems like a similar disease. If there is a support group at your local hospital for family member of cancer patients you might want to consider going at least once. A community of caregivers can be very supportive and helpful, even if it is on zoom. My DD and SIL participate in a new parents Zoom group every week that is an extension of their childbirth education group . They have learned a lot from the facilitator and other parents, and many of their fears in the early days were allayed by hearing others recount similar experiences. And they get a lot out of their group even though they do have moms, sisters and friends, real life and groups like this, to talk to, because the subject is so specific. It’s worth a try ((Hugs))

Of course it’s human nature to look, to want to be prepared, to not want the rug pulled out, to try to maintain a sense of control. During DH’s first cancer, I was on the internet obsessively, trying to educate myself, reading anything I could find. It was all bad, dire. I’d call our oncologist in a panic, in tears at what I’d read. He told me that reading case studies was the worst thing I could do, as no two people respond to treatments the same, are not going in with the exact same factors, and I was reading very technical papers only published for other doctors to read and comprehend. As lay people, we simply cannot decipher what is being discussed, there are too many variables involved ... the majority having nothing to do with our case. He said, Jinx, think about how many cancer cases there are a year, and you found a few extreme studies to freak out over, out of 1,120,000 good ones that weren’t published on the internet! He also said he could have 10 patients at one time with our cancer diagnosis, and none, no matter how similar they seem, will go exactly as the others ...the only goal being to survive, by whatever means and treatment protocols necessary for each individual case.

And then there are the stories regular people share in which things went bad, etc. Again — no two cases are the same. None. And our oncologist taught me about that, too: the majority of people who survived, who did great, aren’t writing about it on open cancer/other forums and websites. They don’t need to. The ones who have sad stories to share are understandably openly doing so ... needing support and trying to heal in that way, reaching out to others who have been there.

When DH’s second cancer hit (different type), I did still research, yes, but went into it with a much more clear mind, able to parse what I was reading better. Knowing that there are simply too many variables involved to make any sort of predictions at all. I mainly wanted to just find info on day to day things — how to help him, diet, side effects of treatments, etc.

This is scary stuff. But as you’ve seen on this board, as you can hear and read from others — survival is a very good and real possibility. We simply cannot predict anything based on mostly unrelated cases of others. It’s too complex for that. But we can and should hope for the best.❤️

Wow Jinx, I can’t imagine going through it twice. I really can’t .

I so want to be a support to Oakley, but I hesitate in what to post, as my DH survived the first, but not the second (bone marrow transplant for leukemia that went horrifically wrong). But our case is so very different, and extremely rare. A very long story, and nothing like the cancer Oakley and her DH are dealing with.

I just want to share general aspects and experiences of being a caretaker for our beloved spouses with cancer, as well as keeping hopeful and positive, and joining everyone else in being a shoulder for her to lean on. ❤️

Oak, it must be difficult for you and your husband, what you’re going through. I wish I had some information or wisdom to share, but all the same, just wanted to let you know that I’m thinking about you. Take care of yourself.

As for your DIL, if you need help, ask her. However she responds, that part is out of your control. If you don’t want to ask her, try not to think about her not reaching out. You have to save your physical, mental and emotional energies for more important things.

Hugs.

I’m so sorry, Oakley! You’ve gotten some good food supplement suggestions here, as well as some good advice. Please know that we’re here for you. Prayers for you both and remember to take care of yourself. And, let you family and nearby friends help you both!

Oakley, your husband’s diagnosis is similar to mine. I also had a non HPV squamous cell carcinoma lesion on my right tonsil. This was surgically removed, yet the margins were not clear so radiation was required. 35 sessions. I didn’t have to have chemo, yet the effects of radiation were hard enough to handle.

One thing I didn’t see mentioned yet can’t stress enough is that your husband will need to get some assistance with pain medication. Don’t let him think he can “tough it out”, because he can’t. Radiation is painful and by the third week or so he’s going to be hit hard with the effects. He will not be able to taste food and may have great difficulty swallowing, as well. I was wearing a 50 mag. fentanyl patch with 10 mgs. of oxycodone for break through pain by the end of the third week, and am so grateful that I did, because it allowed me to function better. I was kept on the patch until about three weeks after my last radiation season, because radiation is still active within the body for at least a week afterwards. I did not have a feeding tube with my first cancer session in 2016, yet many people do and are grateful for them. I managed to do without, but lost 20 pounds in the process. If your husband is offered one, he shouldn’t hesitate to get it.

A thorough dental exam is also a necessity, since radiation has a very negative affect on the teeth and gums, and peridontal problems can quickly result. I suffered through this and had problems with gum disease afterwards, which also had to be treated by a periodontist. I now have to see him every 6 months for follow up.

You both will be in my prayers. If you have any questions that you think I may be able to help you with, please don’t hesitate to email me personally.

Oakley. a feeding tube may be necessary. I know it's something none of us would want, but doing things we don't like is part of life. My nephew who has cancer in his neck had to have one. He has radiation five days a week and chemo on Thursdays. The doctor told him the radiation would make his throat swell and he wouldn't be able to swallow. He's already having trouble swallowing after only a week or so of radiation treatments.

I hope your husband does well and the treatments work.

Well, I did reach out to my ex-DIL who is also a close friend and the mother of my grandchildren, and she lives close by. She's keeping mum about it because she knows I have no female relatives except for my 10yr old DGD, and I don't want to bother her. lol.

Nuts, I'm not asking her for help unless it's an emergency. Nope. I hate asking people for help, especially from those who obviously isn't interested in helping.

Jinx, I'm glad you told us about your late husband two cancers & I want honesty here so I can be prepared. You can tell me anything.

I completely forgot my husband had skin cancer on his head last summer and they were able to get it all with no treatments.

After doing more reading, I'm pretty certain he's at stage III or IV, and that's not good. I just hope it doesn't metastasize before his treatments begin.

Woodrose, I hope your nephew pulls through this. I'm pretty sure I talked DH to use the tube once I explained how it saves lives. I told him he could starve to death which is his choice, or hang around and see his grandchildren. He smiled.

Heidi, thanks for the heads up. He's had one cold his whole life, maybe the flu just once, never gets headaches except when he had heart failure and they gave him that silly codeine which he took. I don't think he'll try to fight the pain. I'm not going to let him if I have to sit on him and jam something in his mouth, because he gets mad when he's hurting. LOL

I did order something else for him today. New pillows, pillow covers, and pillow cases. I got some for myself too. :)

I made sure to get cases with print on them just in case he has the tonsillectomy.

When the boys were little and sick, for some reason I had to change their pillow cases every night. Not the sheets if they were still clean. My thinking is they don't have to lay in yucky germs which would keep them sick for a long time. I know. Crazy.

Which reminded me that DH will need germ free things to lay his hard head on. :)

Oakley...first of all I am so glad you are getting such helpful info here from people's own experiences. Secondly, I am a little surprised you haven't been informed of which stage your DH's cancer is...I would call the physician's office if necessary to get that info. Thirdly, it seems that if he is going through an oncologist or cancer center, they should have people in place to educate you as to what to expect re side effects of the treatment & how to deal with these. Of course everyone reacts differently to treatment but there are probably some protocols they can give you. Sometimes nurses or nurse practitioners are the best people to ask about things like this, rather than the physician. I just want you to try to avail yourself of all their resources if you can. I know covid complicates things, of course, but see if there are these resource people for you to talk to.

No advice-- just wanted you to know I'm thinking about you Oakley!!

And prayers for you & hubby!

Lizzie, DH has only seen the oncologist one time, which was late last week. He went alone and DS will be with him for the others and during treatment. Above I said DH isn't one to volunteer information and I'm scared to bring up what stage he is. DS is going to find out this week.

I think DH likes that I've taken over what he will need after research and reading posts here because although he does google his illness along with talking to his doctors, he doesn't look up the side effects of his treatment, foods to eat, even if he has a tonsillectomy.

He's never had dry mouth in his life and I get it all the time, and he was grateful that I told him he will most likely get a bad case of it and things we can do because it can effect his teeth and gums.

Today we got almost $500 in groceries so I wouldn't have to leave the house in case he needs me, and he kind of had fun looking at the foods I ordered for him. We put non-perishables specifically for him in a spot on the hutch so it will be easy for him to get. Individual ice cream cups and those frozen Icee pops are ready go go.

It's just the little things I'm doing for him because this has all happened so fast we both need to be prepared. I give my opinion on some medical stuff and so far we agree with each other.

I think for the first time in his life he's really scared (I can just tell, he's way too nice right now) and is grateful I'm doing this for him.

Now I need to find non-mint toothpaste, new toothbrushes, all that stuff he'd never think of in a million years.

Woodsy, that is very generous of you to share honest and helpful information.I hope I never need it, but I think your advice will stick with me.

Wishing you a speedy recovery and my condolences on your loss, Woodsy.

I wish you well... however, I am a little concerned you do not know the staging of his cancer. Why did you not go with your husband?

Did you get a second opinion?

Why did he not tell you?

I haven’t read through all the responses but saw some very thoughtful and useful advise in the one’s I read. In regards to his mouth and the gum disease, oncologists have a mouth wash for patients to use that helps with thrush and bacteria. You may want to inquire about that when the time comes.

The one thing that I did within days of my dh’s diagnosis was I set up a big zip binder with a pouch for xray cds, a calender to track appointments and lots of space to use for prescription literature, xray reports, lab work and even my own notes. Having everything on a calender and keeping it all in one place was a life saver. I created a spread sheet that listed all of his medications, the times he was to take them, when refills may be needed and so on. This was helpful because doctors will expect you to complete their paperwork every time you go there and they want to know every medication and/or suppliment that has gone into his mouth. I always had spare copies in the binder ready to go.

Also, don’t assume that the place the doctors send him to for diagnostics or referrals is covered under your insurance. Always verify that every facility you use is in network and speak up if it isn’t. Doctors will use a facility that works best for them but understand if insurance is a concern.

There will be days when you might feel like all of your efforts are unappreciated or not even wanted, but in reality it couldn’t be further from the truth. As difficult as it may be sometimes, try not to take anything personally because it’s not intentional.

Oakley, I’m so sorry you and your husband are going through this but we’re sending positive thoughts your way.

Bev, it can't be staged until we learn more on Friday when the ENT will try to find the primary source. A spot behind a tonsil won't always show up on a PT scan or the test the ENT did last week. If it's found on a tonsil or adenoid on Friday, they will come out right then and there.

If there's a primary cancer spot, he will have both chemo and radiation, if no other spot is found it will be radiation only and a higher chance at full recovery.

No, I didn't go with him due to Covid restrictions and I was on call to receive my first shot but they never called. ugh. I hope they'll call Wednesday. DS1 will be going with him to appointments and treatments. We agreed he comprehends much better than I do, and he wants to do this. That way I can stay home and have ready anything DH needs.

Thank you Lukki! Every doctor & the cancer hospital is in our network. DH will be the one to record his meds because he already takes a ton of them and he charts it everyday. There are so many he's the only one who can do it, because he takes meds twice a day. But I will stay on top of his BP and glucose levels.

Oakley, when my boyfriend had his throat cancer treatment he couldn't even swallow a smoothie. He was basically starving and ended up in the hospital and had to get the feeding tube. He would have stayed stronger longer if he had it much earlier. It was really no big deal -- it was a tube thing that stuck out and he attached a funnel to it and poured Ensure-like liquid in it. Once he was well enough to actually eat food, it was pulled out and now he looks like he has two navels.

I wish you all well through this time.

I'm so glad your son will be able to go to his appts with him. That should really help. I like the idea of using a binder to keep everything in one place. Such helpful good ideas from people here!

So much good advice for you here, Oakley. I am continuing to think of you and your DH and am praying for you both. Hugs.

Thank you for sharing, Woodsy. I am so very sorry for the loss of your DH and for your battle with cancer. My prayers for a full recovery are going up for you.

Kitchenwitch, I told DH a similar story and I think it changed his mind.

Everytime I get new advice here I tell DH I read such and such on a "blog" and he's really enjoying what I tell him.

DH got his first bill today and I asked if he's keeping track and he said he has it under control. Files and keeping track is his thing.

He also gathered his tax info and will take them in on Wednesday. Now that's a first, it's always the day before.

Tina, he'll deal with them just fine because the meds he takes right now will literally kill him if he stops taking them. He was close to death when he got a bright idea that he'd exercise more for his diabetes (and he has an athletic body) and high blood pressure. He stopped all of it and nothing would change his mind until I called an ambulance for him and he ended up in a heart hospital.

Now he takes so many pills a day I lost count, and instead of taking a Metformin like most Type 2 diabetics, he has to give himself a shot of insulin daily. He logs everything at the time it goes in his mouth...or belly. :) He learned the hard way.

Very concerned about something I discovered this afternoon. DH likes longish hair, not to the shoulders or anything, but his ears usually aren't noticeable.

Today I was giving him a haircut and saw a pea size red spot...not a bump... on the bottom of his earlobe. I asked what it was and he said he's had it a long time because that's the side he sleeps on. I didn't say anything but if that were the case we'd all have red spotted ears.

Then he sai the other ear has a spot too, so I looked at it and the cartilage area that's the outline of our ears, is a dark multi-color bruise.

He said it showed up a couple of days ago. I've alerted DS so it will be checked out on Friday.

I thik Lymphomas will do that to the ears if I'm not mistaken. And it's right next to the enlarged mass on his neck!

Oakley, I hate that you have to deal with this. I know how hard the not knowing can be. You are in the worst part of the process. I promise you it will get easier when you know exactly what it is you are dealing with.

We had a rule that helped us. We found something to laugh about every day. It really connected us as a couple. In 47 years of marriage we were never closer. There are positives, you just have to make them happen.

Woodsy, I'm amazed how close we became these last few days. You're definitely right about that. DH and I laugh quite a bit on most days. I need to stop looking for more symptoms. :)

Thank you Tina! My DH started forgetting what he’d taken and what was still needed. I set up his sheets so he could check off what he’d taken as he took it. He liked to have it noted and it saved us both so much frustration.

On my PRN or as needed meds, I wrote on my bathroom mirror with a dry erase marker when I took them. That was an easy way for me to keep track of my last dose.

Hope you will update us when you can, Oakley.

Thinking of you and your DH today, Oakley. Sending prayers your way.

Tina, if I need to give him a shot, I'll call my DIL next door. Don't worry about it.

Todays update. DS took him to have a laryngoscopy and the doctor didn't see any signs of cancer, but he did three biopsies just to be certain. He also wanted to do a tonsillectomy and both DH and DS said absolultely not! Unless cancer was found there, then that would be different. I don't blame him, at his age and comorbidities, it's asking for trouble. He may end up having one but not today the way the doctor wanted.

The ENT didn't come right out and diagnose him but he implied it's probably a (squamous cell carcinoma) cancer of unknown primary. And it's rare. I read all I could this afternoon and I agree, so I'm not reading anymore about it, it's too scary.

The good thing is DH sees his cardiologist next week and can run this by him. He's in the same network so he can read exactly what's happening.

So for dinner I made myself some comfort food, old fashioned egg cream and it will be followed by guacomole later. :) DH had ice cream. lol That's all he's eaten in 24 hours. He'll have mashed potatoes later.