Hello, I am new to the forum. My life patrner has been diagnosed in May with stage 2 throat cancer and has since undergone and finished his chemotherapy and radiation. We are living in different countries but I have been doing monthly visits. End of August he had his PEG removed and was declared fit for travelling by the doctors. But the visit turned very traumatic as we ended up in hospital 24 hours after arrival. He returned a couple of days later as he wanted to be with his own doctors. Unknowingly he had been infected with Dengue before his coming and it peaked then. He was admitted in ICU for 10 days. It has thrown him back month in his recovery which has affected him emotionally very badly. I myself feel more an more worn out as distance and uncertainty affetcs me very much.

Long distance relationships are very hard. I know it's even more emotional for both of you when you're not able to support each other face to face.

Big hugs to you and Welcome to OCF!

His recovery absent anything thing else can take every bit of 2 years with the 1st year being the longest so prepare him and yourself.

This is all a part of healing as David just told you. This is one disease that plays on it's own field and at it's own pace. It all takes time. I want to wish you the best of luck .

I could not imagine, that has to be extremely tough. I hope it all works into place. You have friends here, I can always relate to someone here, you have come to the right place for sure.

Your Friend,

Nathan

Dear All,

many thanks for the replies. Felt better than in ages after having talked about it and getting supportive replies. When we first saw the doctors they talked about the treatment schedule and time seemed to be managable. I now understand that it was a blessing to be ignorant then; otherwise the motivation for him would have been compromised. Thanks David for the realistic outlook as it puts all the ups and downs in proportions. As good as it is for me to have a realistic outlook do you think it is a good idea to introduce him to the forum? He is very withdrawn at the moment and talking about his nightmares, something he never had before in his life.

I'm a believer in that it always helps to talk things out. Keep in mind that most of us suffer from some depression post Tx. The fear of the unknown was cause for mine concern. Ease him to the site. Perhaps leave copies of selected posts lying around for him to read. Encourage him to open up and then ask us.

Nici - It's great that you are so supportive of your partner and I know it must be difficult to do so at a distance. When I first came to this forum as a caregiver, my son was very depressed and when I suggested he come and post as well, he felt he just couldn't do it. I think he was afraid of getting more depressed. He did register on the forum after a while but only posted a very few times. What really helped him was when I printed out copies of very positive suggestions and especially when he could see Davidcpa's comments on his experiences which were very close to his own. Maybe you could copy some positive posts and send them to your partner to read whenever the mood was right? Does he have family or friends close by that could offer support in between the times when you are able to be with him? Everyone is different, of course and introducing him to this forum may be very well received and a great source of comfort and inspiration to him, but if he doesn't seem ready yet, you can still help him by just being here yourself and telling him about the great support you are getting.

Welcome to OCF!

Recovery varies from person to person, but I think having him come and visit would be beneficial for him. The people on here are very supportive and it's nice to be able to relate to others that have been there and done that.

Many thanks for all th replies. Will be flying off tomorrow again to see him. Have talked about the support group and he said he would like to have a look with me.Yesterday's doctors appointment was cancelled and I suggested to postpone now to Thursday when I can accompany him, he sounded happy about that.
Would like to share some more about his condition: He finished chemo and radiation mid July and had his PEG removed end of August a few days before he came for the visit. Dengue got him around this time and in the first week of September he was admitted in ICU back in Delhi. During his stay he also got pneumonia, which has been treated since with various antibiotics but patch on lungs still there. Mid September PEG was reinserted as doctors advised not to take anything orally as apparently swallowed water got most of the time in the wrong pipe and ended up in the lungs. Doctors have given him the ok to start taking in things orally about 1 1/2 weeks ago. His problem now is that he has so much mucus in his mouth - has to spit it out every 5-10 minutes - that he finds it impossible to eat or drink anythink as it "flows with the all the other stuff around ". Anyone who has or had the same problem and any suggestions what might help?
Still thinking of bringing some food items - apple sauce, canned asparagus etc - which he was able to swallow before.
Nici

Its so asian to bring food when we travel to other countries!!heehehhe. Everytime i travel, i always bring so much food that i think my friends overseas would like. My luggage allowance is food! heheheh. If your partner can eat then its good to bring it but if he cant then you are just reminding hinm of what he is missing out when you bring the food.

The mucus is normal for people who have gone through radiation. Mine just got better as the days went by. If you type in mucus in the search section, you will find lots of suggestions on how to make it a bit more comfortable for your partner.

I have to say that you are doing a great job of supporting your partner. I found the best support is to have my partner understand my condition and of what i was going through.

This site is also great because it lets you know that there are other people going through the same as you and it provides lots of support.I'm sure your partner will appreciate it.

Minh

I didn't realize you could bring food to other countries. Maybe things have changed? When I was on a trip back from Mexico years ago, I had a mango in my purse (because at the time I was pregnant and had an acute mango craving) but the officials looked in my purse and took that mango away from me!

Oooh Anne-Marie
Mango definitely doesn't cross borders too well.

Neither does that smoked duck in the bag of that little 4'9" Asian grandma visiting her daughter, who is standing in front of you in the customs line at 6.30 in the morning. Minh, I travel a lot and as the planes all stopover in Bangkok/Hong Kong/Singapore I KNOW to choose a different line to that little old lady with the duck in her bag.

But on topic ... Nici, my Alex registered himself here, read a few things and then stopped. So now it is up to me to share stories with him. I used to start my conversations with "there is a guy on an oral cancer support forum, close to your age who went through the same crap as you who says ..." and Alex would listen. Now I just say "Such and such had that happen and he/she ..." and Alex pays attention because he knows I am talking about this forum good second hand advice is about to spew forth. I find it good for me as well because when Alex comes up with what he thinks is some weird and wonderful issue, I have already read about it, can immediately relate and make intelligent suggestions which does wonders for my status as a goddess.

Karen

Dear Minh, thanks a lot you really made me laugh about the Asian travel habits. Guess after living for 20 years in various parts of the Asian continent I can't help it anymore...And Karen can you imagine I even brought mangoes ( dried ones ) though I left the duck at home....
Got here on Wednesday night and was greeted by Avi standing on the terrace waving. Made my heart leap with joy. But very soon I was brought back to reality. His nights are disturbed by terrible headache attacks. I made him sit up which relieves the pain for a while. Even during the day it happens like when he is trying to clean his mouth too strenously. We had a meeting with the docs on Friday after which they decided to do his MRI.It is the first one after the treatment has finished. We got the call from the doctor later yesterday who informed him that 30 percent of the tumour still seems to be there. If cells are alive or not they will establish in further examinations. Unfortunately the next meeting will only be on wednesday next week when I will have returned already.
Is there anyone who also has experienced severe headaches and any suggestions on the primal information given on his MRI? I personnaly have my doubts as the whole area is still very badly infected which I belive comes up in the MRI also?
Nici

I had headaches when i was trying to hard to do something and I wasn't strong enough yet to do them. For me if i was trying to brush my hair or do something that involved lifting my arms up and looking upward, i would get a headache after a minute or so. Docs just told me to take it easy and try to do things for myself, but if what i was doing caused pain, to not do it.
I am not sure about infections showing up on MRI's or not, but if you don't believe they are accurate, or you want another opinion, get another opinion.
I sometimes wish I got another opinion before I went through my treatment, but I believe my doctors were some of the best in the state because of research my mom did, so I went with what they said to do.
Also, if he's not ready for this, you can look on here and kind of help him through with stories you see on here. I now talk with a woman who went through almost the same thing I did, only a few months after I did. For the most part, I talked with her sister on here, because she couldn't get on here, and I am glad I was able to help her through radiation and still.
Some people can jump on here and share their stories and read others, while others just can't handle it.

I wish you both the best and hopefully if you get a second opinion it doesn't turn out as bad as the first one.
I couldn't imagine having my boyfriend not by my side when I went through my treatment. You are one strong person for being able to do so!

I sure agree with Bethers about having your love side by side and giving you a boost when needed. Hell, mine ran like a Cobra was on her tail. LOL I did it all alone and still do. One thing I do get ried of is my friends and neighbors trying to FIX me UP . LOL If it happens it does and if not.... Oh well. Sure not looking tho.

Jim, your friends must care a LOT about you to be trying to "fix you up"! Especially if you put the word out that you are "not interested" - that in itself is a challenge to all the women who will be beating a path to your door to see if they could be the one to change your mind, and to your friends who will be renewing their efforts on your behalf. :-)