My husband was recently diagnosed with Stage IV base of tongue cancer. 3 positive nodes found on neck dissection done 1-9-07.
Only a very few people in our circle of friends are aware of what is happening. We both work for a radiology group, and although we haven't disclosed what is happening.....because of requesting for time off for his surgery, and having to have doctors fill out paperwork for temp. disability, etc, a couple people at work know "something" is going on. My husband doesn't want me to discuss it with people at work...I return to work tomorrow after being out for 3 wks since his surgery. It is so hard not having any one I can talk to for support. I haven't been myself at work since the diagnosis and it is obvious to my co-workers that I'm distracted and not myself.
I just wish I could let them know so that I could have some supportand they would understand my new disposition, but I have to honor my husband's wishes.
I am really dreading returning to work now and leaving my husband at home. He won't be starting therapy for a couple weeks.
At least I have this forum to let things out.
Thanks.
Vicki

Vicki, It must be rough not being able to talk things out. It sounds like hubby may be in denial at this point. (The first or maybe the second stage of grieving according to Kubler-Ross). Sooner or later the truth will have to come out, and then it will be easier to deal at work. Until that time, vent here all you want. That's what you need? That's what you do!

Best wishes,
Andrea

Dear Vicki

That is very tough for you but as Andrea says, we are here for you.

I was very open to talking when I was diagnosed and was overjoyed by the love and support I received from those around me. It was one of the gifts that cancer brought to me.

Your husband may wish to open up when he accepts his illness.

Love from Helen

Dear Vicki,

When I was first diagnosed I told my wife and boss not to tell anyone else. It was like if I discussed this beast then it would be for real and not a dream. Classic denial. After a lot of prayer and many conversations with myself, I realized it is what it is. Whether I discuss it or not won't change my diagnosis. Emotionally I felt better when I let everyone in my life in on my illness. I felt truly blessed by the out pouring of their concern and prayers. At a time like this I think it's better to draw nearer to friends and family than to push them away through secrecy.

You can talk to us any time you like.

Tim

Dear Vickie, From a caregiver perspective, I honestly have to say that your not beingable to talk to some special people at work is going to put a real strain on you-on top of the other things you are dealing with. When he starts radiation the odds are he is going to feel rotten at some point and you will need a friend or two around you. While someone is always here to listen and communicate with you, we can't take you to lunch or run an errand oar simply sit and have a cup of coffee with you. I really hope he will change his mind and allow you to have some personal outlets when you need them. And we will be here when you need us. Amy in the Ozarks

Vicki,

When I was first diagnosed and trying to decide how and when to tell people about my illness, I thought about one of the common realities of the workplace (at least it was true where I worked, and I think it's pretty universal). I realized (as you do) that people I worked with would start to detect that something was wrong, and if you don't take control of the story at that point, the rumor mill can start to run wild -- and often wrong. I also saw that there could be plenty of downside to my career if I wasn't completely candid with a few of the key people in my office about my medical condition and what was going to be necessary in terms of time for treatment over several months. (Besides, there would have been no way to hide what was happening to me physically, both in terms of surgical scars and the loss of weight during radiation.)

I hope your husband can recognize that it's in his best interests and yours to make sure the right people in your office know the facts -- and you will probably find that at least some of them will want to give you the support you need at this stage.

Cathy

Vicki,

I sent a letter to all my clients to let them know what I was about to undergo and how it might affect them. Just writng that letter helped me face my reality. I also wrote them a letter when I was out of that dark tunnel. That was more fun than the first one.

My advice....come out of that closet and tell your world what's going on. You will be pleasantly surprised by their reaction.

Dear Vicki,

Speaking as a patient, initially I only told my boss and my closest friend at work as I was afraid to say the word out loud and also didn't want to become the subject of gossip - become known at the water fountain as "that girl who has cancer". Its hard to describe but I felt kind of tainted and ashamed to have something go so wrong inside me. Denial, I guess. Eventually I got over this and told my boss to tell the rest of my department, if they asked. As I was not there when he told them and didn't see them for almost a month, they were quite used to the idea by the time they saw me and so didn't ask silly questions (except for whether my tongue would grow back!:-)). They have been very understanding since then, especially when I got back to work.

Speaking also as a family member of someone who was diagnosed with terminal cancer (my mother) and who for the first year decided that our family should keep it a secret even from her own sister , I found it extremely difficult not being able to discuss it with anyone. I ended up getting panic attacks and constantly taking antacids as a result. Plus my colleagues were wondering why I was constantly taking time off work to go back to Ireland and why I was so down.

In both cases, when I was eventually able to talk freely about what was happening it was a tremendous relief. I found there were many people with similar experiences and everyone I told was supportive or at least sympathetic. I have to say other people provided most of the strength I needed to deal with both cancers.

Oddly enough I found it more difficult to deal with my mother's cancer than my own. I think it can be at times more difficult to be a caretaker or relative than to have the disease yourself. Especially if you are dealing with a control freak (like both myself and my mother!). You can feel helpless, but please remember that the patient really does appreciate all the small ways you help, even if they don't always show it.

I really hope you can work something out with your husband regarding who to tell and also find a colleague you can confide in.

In the meantime please continue to let us know how both of you are getting on.

Big hug

Redser

Vicki, you should know that "the loss of weight during radiation" is something that's under YOUR control and doesn't have to happen if you don't want it to!

In fact, because I was taking Amifostine/Ethiol during the first half of my radiation series (I became allergic to it and had to stop), the nurses made it clear that I had to maintain my weight to within 1-2 lbs during the Ami series or they would cease giving it to me, plus I had to drink two liters of water before coming in for treatment. First thing I had to do each day when I came in was step on the scale and they would write it down in the chart (If you think you're going to be low, you could put some diving weights in your pocket <grinz>).

I had a PEG, so getting the liquid food down was doable; had I been trying to do without the PEG, nausea might have made getting my daily calories very difficult. I'd sip the water constantly on my way in every day.

About six months post-radiation, eating more solid foods but not having much appettite, I made a decision to go ahead and lose some weight (and did so), but it was my decision, not a side effect of radiation.

O.K, just so everyone knows up front,I have a serious issue with the beginning of Pete's post. In our experience "the loss of weight during radiation" was nothing we could control. John had a peg and we knew how to use it, but after several weeks into the rad tx, keeping his weight up to par was a constant battle-which we lost-. Down the road, he did gain it back, but it took lots of determination to do it. How your body reacts to treatment is not in your control, so please don't feel bad about that. What you can do is learn everything you can do to counter those effects. Amy in the Ozarks

Just to follow up on Amy's post (since the phrase "loss of weight from radiation" came from my post up above) -- I have to agree with Amy that it's not totally within your control. When I went through radiation, I was 39 and in otherwise excellent health and was warned well in advance by my RO about the potential for weight loss. I told him I was going to be different -- that I never miss a meal and I was going to tough it out and do whatever it took to keep my weight up. I'm a good cook, and I took it as a challenge to try to find ways to come up with nutritious meals that were soft (tending toward semi-liquid) that would meet my calorie quota. When I needed more calories beyond that, I had plenty of Carnation Instant Breakfast to supplement it. Contrary to the experiences of many others here, I don't think I ever had to fight nausea during my treatment, although I had plenty of "hacking up" bad stuff that came with radiation.

My weight pre-treatment was somewhere around 128-130; at the end of radiation my low was around 112. Based on what I've read here, I think that's not too bad, and I can't claim that I looked emaciated by the time it was over, but it was definitely enough to be a noticeable change for people who knew me well.

Cathy

I stand corrected!

I was basing my statement on only my own experience (in which the actual cancer had been already removed by surgery prior to radiation) and no concurrent chemo.

I certainly got the impression from the nurses that I was the one controlling my weight, and it would be by the calories I poured down the tube (presuming I retained them), but perhaps they screen out the folks whose circumstances wouldn't allow them to do that as not being candidates for the Amifostine.

In my case, when I followed the dietician's instructions to a T, I retained my weight and when I later cut somewhat back on the number of bottles/calories, I slowly lost weight.