Danielle, Im so sorry your update was not a better one. Recovery takes a long time, always much longer than the patient is happy with.

Your boyfriends nausea could be from the formula. Usually the main reasons it upsets the stomach are how thick it is or the speed its being delivered. By slowing down the feeding and adding a few ounces of extra water to it should o the trick.

Its very common for OC patients to struggle with depression. Many patients have trouble adjusting to all the changes and facing their own mortality. Its nothing to be ashamed of to need help getting thru it, most do even quite a few caregivers end up taking anxiety meds.

I felt so bad when you felt like you werent appreciated. Im sure your boyfriend appreciates everything you have done for him but might not always show it. Especially when he is having problems with depression, seeing the whole picture is not something he is able to manage. I agree with you about being depressed, its not good going into rads and chemo like this. I really hope your boyfriend is one of the luck few who sail right thru treatments with barely any side effects. Ive noticed those who focus the most on their intake have the least problems with their side effects.

Hang in there! Your boyfriend should be making some progress soon and hopefully will snap out of this low point.

Hi everyone - I loved reading your comments - it really put things in so many different perspectives. I did talk to Steve's social worker yesterday. I explained his current state and what we are all dealing with (including him). She stated this is exactly the reason why she tried to push him to start therapy before and during his care at Moffitt (it is a service they provide). He had refused it several times - first I think because they offered it the day of diagnosis and he was shocked, and then in the hospital where the thought of having to have to come back for one more appointment seemed like a horrible option. She said she would meet with him when he is there on Monday to have his surgical sites checked. She went on to say that she will insist he start, because his Surgeon would not be able to keep prescribing his anti-depressants if he does not. She went on to say at times they even hualt all treatment if a patient is in such a dire state and refuses therapy. She said she knows he is not there, but she will want to talk to him alone and really impress on him how important ( and perfectly normal) it is to deal with his mental health.

It is funny when his parents are not up helping us out, he comes out of his shell a bit more. The social worker says it is because he leans on me and his mom so much to take care of everything, and now it is just me for the rest of the week, he knows that indeed I have a ton on my plate (work, him, housework, and all of the pets). So last night he actually did a chore I asked him to do, watched tv in the living room, and started to try and drink water again from his mouth. All little things but big considering the last few days. He even was taking a shower when I left this morning in preparation for the home nurse to come. I do not think he has showered in 5 days. Funny the things you become grateful for as little glimmers of progress. 4 months ago we were counting down the days to our key west trip and getting excited and now I get excited when he can swallow some water or takes a shower. Wow, how life changes.

I have to say I also have become a pretty good nurse. I used to not be able to look at blood without having to run the other way. Now I change his packing in the hole on his next twice a day. I took this over after his mom left. Wow - I could not believe how hard his skin on his neck has become - like plastic. It actually scared me at first. He still has a lot of yellow fluids coming out of it, but the swelling is going down.

Again, thank you all of the support. I have my moments. I have a lot of perspective to the situation. I need to focus on it day by day and stop feeling like we are missing so much - going out with friends, vacations, "normal" everyday work/home life. I hope one day we will have some of that "normal" back but I know it will not be here tomorrow or next week.

Danielle

Thanks for the update! Im so relieved to read your boyfriend is getting some help for his mental health. I was concerned how he would fare with the upcoming treatments if he wasnt quite himself. Rads isnt easy at all and easily can wear even the most resilient patient down mentally.

Please remember to take some time just for you. I know you have so much going on right now and you probably feel like you cant stop to even catch your breath. Even if its a walk around the block to clear your head, it helps. Try getting out once a week to do something to take your mind off everything, something fun that you enjoy.

Best wishes to you both.

Hi Danielle,
I have been reading your posts and Im so sorry that your boyfriend is taking this really badly. My father felt depressed, was hospitalized and barely talking to anyone for about a month. I then flew from the US to see him and as soon as he saw me, he wanted to get out of the hospital ASAP and get back to talking ASAP. He too was on NG thru the nose for a month - the idea of a PEG freaked him out. I made my father meet an oral cancer survivor who also got a glossectomy and lymph nodes removed and was doing great 1 year post surgery. I think this man really motivated my dad to get better! And its completely ok to be on antidepressants - anything to make him feel better. Just keep reminding him that you are grateful to have him and you love him no matter what!
Remember to take care of yourself as well - you cant afford to be sick/ tired at this point.

Praying for your boyfriend and you! You will see an improvement soon

Hi all - Well we had a follow up visit today at Moffitt. They checked his surgical sites - all doing well. Put him on a higher anti-biotic for his infection in his neck. The social worker did talk to him by himself to access his mental state. She did say he would benefit with therapy ( we already knew that) however, he is not open to it and he is just very mad at everything right now - himself, the situation, and the world. His oncologist said that how he is acting is about par with where she finds most of her patience that have his surgery.

It really does not help that he has not been able to sleep for a few days - non stop hiccups. He literally is walking around like a zombie all day and night. He is currently is on the anti depressants and I can see a more positive change about his attitude. However, the morphine which he is using for pain is making him very agitated and cannot sit still. The Dr said he still should take it as needed, but it is hard to gauge when that is. He has weaned himself off of them before, but at the moment it is almost like he is scared too. When he finally does, his hiccups keep waking him up. So at the moment he is a bit of a mess. However we did have a nice little car ride on Saturday to get a smoothie (which he had most of and could swallow it) His speech is not as good as it has been, and I think a lot of that has to do with mucus and swelling from the infection but he is talking a lot it is just harder to understand.

We found out we have an appointment next week to see radiation/oncology to go over the plan for the rads and chemo forthe next 8 weeks. They said he will start with the rads/chemp on 4/6. I really hope he is stronger, gained some weight and more stable with sleeping, and medication before that happens. I have to admit the radiation and chemo is scaring me more then the surgery. I really hope his body can take it.

Hi. It sounds as if there has been quite an improvement even though things have been tough and still are. The smoothie is a good sign. Have plenty of those before treatment because radiation makes you lose taste for some time. Is there something he could take for hiccups? I had to take anti-heartburn medication for a long time. There must be something to settle the digestive system or whatever causes hiccups.

Many people here found the radiation and chemo very hard. Part of it depends on where the radiation takes place. If it affects the throat it is painful but for me, with the radiation on the forward side of my jaw/face/neck, the pain was limited. Not that I didn't have to take lots of oxycodone for mucositis, but I was never prevented from swallowing. So everyone is different. I much preferred it to surgery because I simply hate being in hospital long term.

Radiation presented me with major transport challenges. Having to get through the city to the hospital everyday for 6 weeks seemed impossible when I started but it worked out. There were volunteer drivers, friends, family ... We made it and the staff at the oncology unit were excellent. You tend to feel well looked after at units like that. There are other people like you and staff are trained to be cheerful and supportive. There's a medical professional available every day so if there's pain and discomfort there's always someone to help.

Best wishes!

If he is on morphine I'd think that the pain is pretty constant and pretty intense. If so, he should be taking them on a regular schedule, not when "needed". Check with the doctor again and the pain management department too.

You can ask his doctors or even pcp for some muscle relaxant to deal with the hic ups. John had it too. It will help him relax and sleep too.

Hi Danielle,

You guys are going through a lot. Not sure what antidepressant meds he is on, but one thing that really helped me in the hospital and is helping me through radiation's Ativan (aka Lorazipam). It is an anti-anxiety drug and it really helps. You don't have to take a full pill either, if its too much just split it and see what works for him.

Hope things ease up for you guys. This is definitely journey, and all of us need to take it one step at a time. We just need reminding from time to time. I do!

Heather

Hi Everyone - I have some devastating news to share - Steve passed away on April 20th. The week before he had been acting very strange. 3 trips to Moffitt and after a blood test it showed his calcium level was at almost 3x the normal rang. They admitted him to hydrate and get it under control, unfortunately he had a sever anxiety attack that night and had issues breathing. I was called by his mom to say he had coded and they placed him on a ventilator for life support. When they went to vent him they had issues because of all the surgery in his mouth and he went about 5 minutes without oxygen. Tests ended up showing he had minimal brain activity and the his parents made the horrible decision to take him off life support.

Life without Steve has been the hardest thing I ever endured. I lost my love and our future together. To loose him after the surgery and all the pain he dealt with is heartbreaking.

I want to thank everyone for the support. I turned to this group in a time of devastation of a horrible diagnosis and I found comfort and knowledge. Steve would have wanted me to go on and live a fulfilled life he was robbed of and I will. I will remember all of your strengths during these dark days as I repair my life without him. Thank you - Danielle