My boyfriend was recently diagnosed with oral cancer. It is the very beginning stages of the diagnoses/treatment. He will undergo his PET scan this coming Monday. For now, the doctors know the cancer is in his tongue, but are concerned it is also present in one of his lymph nodes.

I have no clue how to navigate this. I am battling with his mom about the correct course of action and feel my information/research/common sense should be heard, but do not want to create a any issues or argument.

My boyfriend is not following what the doctor has already prescribed him to do/not do; namely cutting out his cardio activity and eating wisely. He is a personal trainer and was just asked to be involved in a fund raising involving three hours of spinning (biking). I said "no way" (he is already a hard gainer for weight), but he is resisting. The food choices are atrocious. We are on a mission to get him to gain weight, but he is not making smart choices (ie: living on Ensure and fast food). So far, I have coordinated bringing him healthier, but fatty, casserole-style dinners and other foods he can eat all week long. My friends are pitching in, as well.

Insurance. I have asked him to apply for insurance and receive the denial, which could enable him to receive government-sponsored insurance. He is resisting.

I know I need to be supportive, but how pushy should I be? I don't know if this is part of processing everything or him just being stubborn. I have a plethora of ideas and am continuing to research items, daily, but I feel they are falling on deaf ears. Don't want to be a pest, but I also know there are a lot of areas he needs to rely on, and trust, others so he can focus on his treatment and health.

Any tips, input, whatever....greatly appreciated!

Welcome to OCF! Im sure you are trying your very best to support your boyfriend. You will need to have a very long talk with him and see what he would like. You will need to clearly know what role you are to play in this as will his family. He may become very ill depending upon how serious his condition is and what the course of treatment will be. During this time, it will be non-productive to have any squabbles between all the parties involved. So please sit down all together and communicate before he begins any treatments.

Most importantly, he should go for a second opinion. A top rated cancer center is the very best place to get treated. It can make a huge difference! A cancer center will have a whole team of specialists discuss his case and the best way to treat him.

http://health.usnews.com/best-hospitals/rankings/cancer

Christine ~

Thank you. I recommended him receiving a second opinion and he believes it is not necessary, which, again, is very frustrating.

I really appreciate your tip about sitting down and talking. I think after we meet with his oncologist and radiologist next Friday, I will arrange a dinner so we can all define our roles, just as you suggested. Thank you so much for input.

Hi, I clearly remember when my husband and I were at the beginning of this process. It is hard to accept what is coming and the C word is difficult. I think that your boyfriend is trying to "normalize" his life because it is too scary to think about what is next. My husband worked out every day and giving up the gym was very difficult. I, too, worried about his ability to gain weight. He did not have room to lose 40 pounds if that were to happen. I also was unsure about how much to push. I found that research helped me and so I related the facts a little at a time. My husband hated hospitals and so I said things like: if you are not hydrated or lose too much weight then you will have to stay overnight and get fed intravenously. He hated that idea. I also told him that he could put the energy that he used to work out into his treatment. He began to hear me and so now has followed everything that the docs say and also my suggestions for calorie intake. We have a team and I think that Christine is right, you need to have more than one doctor who looks after the process. I did not have anyone else here to navigate with since we are "older" and our kids are all living far away. It is important that everyone is on the same page and that you define your roles. That is a very good idea, have dinner with all of them and figure out how you can support him and each other. Best of luck and I want you to know that my husband has gone pretty well through his treatment but it is because he knew what things would help him keep his head above water. You will have to find that path between being pushy and supportive. It is not easy but you can do it.

This site is wonderful and helped me through some difficult moments. They are all champions.

Ellen

Both people here have given you good advice... Sometimes it's hard not to push . And it sounds like he's in denial. After all he probably feels healthy - I know I did... All I had wa a sore under my tongue - big deal... Well guess what its a mighty big deal. It can be aggressive and that's what he needs to know - there is nothing wrong with a Bit of exercise - walking is good! But too much will be bad for him if he's to maintain his weight... Good luck!

Oh Bk

You sound like you are exactly where Alex and I were 12 months ago! I went straight into research mode to learn what to do, what Alex's treatment options were, what support systems were out there - including insurance, social security networks etc. I had Plan A through to J by the end of the first week and Alex was the exact opposite. He is fond of telling me how he always lands on his feet which I interpret as "life happens to me and I will live with whatever is dished out". I on the other hand, see what I need, and figure out how to make it happen. He thinks I am pushy and aggressive, I think he is a doormat. We are perfect for each other

So it should have come as no suprise that his reaction was to bury his head in the sand.

I was frustrated by his inactivity, refusal to address the issues, and his stupidity (I thought) of not doing what he was told by the doctors about taking his medications, looking after his health, eating and drinking properly etc. I cajoled, reasoned, threatened, and tried bribery but most of it fell on deaf ears. He would agree with me and then not do what he had promised (passive aggression). Then he got really sick and couldn't do anything anyway. I felt I had two choices: stand back and watch him go down, or do it myself.

I did what I could myself and to my suprise, Alex let me. And the stuff I couldn't do (his tax, divorce, will) I just had to let go and pray the consequences would not be too severe.

Letting things go for my personality type was easier said than done and I failed miserably on many occasions. I would spend all day dealing with and worrying about Alex's treatments and interactions with the healthcare workers and the second I fell into bed, I would start churning about the future and the finances.

The thing that saved me was the opportunity to vent. I did that here, and in endless emails and phone calls to some particularly supportive people. These were not necessarily the people I would normally have shared my troubles with, they were the ones who stepped up and asked me how I was going, listened to my rants and then came back for more the following week. They offered their own experiences, checked up on me at just the right time, and offered advice or support without being pushy or judgemental.

I also wrote a journal where all my pent up frustration was laid out so baldly, I can't bring myself to reread it now.

Eventually you realise that at the end of the day, responsibility for his treatment and survival lies with your boyfriend and you can only help if he wants it. Offering help where it is not wanted will just do damage to your own psyche and possibly kill your relationship.

I would suggest you vent here, keep on with your research if it keeps you occupied and feeling that you are contributing, but offer what you know in very small bytes, and only when it fits with the conversation. For example, if Alex said, "I can't swallow this damn potato - it gets stuck", I would chime in with "I was on the OCF website the other day and EZJim has this great thread about easy foods to eat. He says that extra gravy makes it is a bit easier". If Alex asked questions or appeared interested, I might offer to print the post out for him, or direct him to the website, but I learned that pushing didn't help (although couldn't help myself at times). He also hated being fussed over. If I asked him if he wanted something and he said "no", the worst thing I could do was make suggestions or ask him if he was sure.

You are in a very new situation, and your boyfriend is about to have his life turned upsidedown. Your way of coping is researching and figuring out what to do, but it looks like your boyfriend is still in shock, firmly in the denial stage and is probably trying to cover his fear.

You will find your story all over the caregiver's forum and sometimes it helps just to know that your issues are very common. It is normal for the patient to exhibit high levels of denial and apparently sabotage of their own treatment at first. It is also normal for reasonable, compassionate, considerate adults to turn into petulant, tantum throwing, selfish 2 year olds.

Keep reading and posting, and do whatever you need to, to keep your own sanity.

Good luck

Karen