How do you deal with others

lily33 said:

Suggestion
newbride,

I appreciate when friends and family call to ask how my husband is doing. However, I completely understand how frustrating it can be as well. There were times I sat at the hospital for 12 hours and all I wanted to do was come home and rest...only to have the phone ringing off the hook with people wanting updates. Every time I "updated" someone I was re-living each horrible experience. I would get so drained. I knew people wanted to help, but in the end some were doing the opposite because they were really just calling for me to reassure THEM.

What helped me was e-mail. I decided to send e-mails updating everyone of my husband's condition. That way I could put detailed info in the e-mail such as drugs he was on, his general condition, or to just thank people for their prayers. Then, all I had to do was re-tell events one time, but everyone would get the information. As a result, people started e-mailing well wishes and prayers instead of calling. I have actually saved them all and re-read them myself or to my husband when we are down in the dumps. This dramatically cut down on phone calls, because everyone felt updated and like they were doing something when they e-mailed back.

Also, don't feel bad about just letting the phone go to voice mail. There are many times that I don't feel like talking. If people are going to be mad at you for not returning calls-then so be it. You have enough to worry about-if people don't understand that then it's their issue.

lily33

MichelleP said:

I actually envy both of you
I actually envy both of you reading your posts. I wish to GOD I had people who would call and let me know they care. Perhaps they call you too much and it's annoying but it's better than being totally alone with no one to talk to.

newbride said:

Hi seanslove
That is an awesome line....I think I am going to steal it from you "this is his cancer and his fight..."

I just went through this with him this weekend his sister asked me if we wanted company this weekend and trying to make excuses, etc I said to her I would check with him becuase he has been sleeping alot, after all he is still healing from major surgery. I asked him what he thought and he was like "Well, we can't say no that would be wrong and rude" and I was like "if you don't want to see them you don't have to I'll tell them nicely that you are just not up to company - it's my life and home as well and if you do not want them then I will deal with them".

I think most people just want to see that he is "still ok" but he's not and if we had only seen you in the past for special occasions and holidays nothing should change now - right??? I really don't think people "get it" anymore.

Seanslove -- how long ago was your husband diagnosed? What type of cancer (sorry I'm I'm getting too personal).

newbride said:

Seanslove
Wow....I really feel like we're in this together...you sound so much like me (how old are you guys...we're both 42). By the way - what state are you in>?

It actually sounds like your husband's cancer was diagnosed similarly to ours -- while you thought he had the flu, we thought he had bad allergies. In January I got fed up with hearing him sniffing all the time and made an appt with an ENT for an allery shot (boy I wish it was that easy!).

Anyway the doc examined him and said he had polyps and a deviated septum and sent him for a CT scan to see how far up the polyps were and the exact position of the septum. Well we go back to the doctor and he tells us that "there is a mass in the sinus cavity" and that he never saw anything like this - he said he was going to do a biopsy and then decide how to handle, that this was a possibility that he may have to be referred elsewhere.

Biopsy was done on 2/19 and it took almost a month to get results -- they kept sending it to different labs since they couldn't diagnose it. Finally in March they told us that it was a tumor in the sinus cavity but we were being referred to Mt Sinai in NY as our local ENT said this was way out of his league. I asked him if the tumor was benigned or malignant and he was fairly vague and just said "all tumors are considered malignant since they don't belong in the body". I guess that should have been my answer - but it wasn't one I wanted to hear so I guess we both put it aside.

Ok, so 2 days later we meet with the surgeon in NY and tells us that my husband (fiance at the time) needs surgery to remove this tumor so we look at him and say "Ok can we schedule it for June" and the surgeon looks at us and says "Um...cancer cannot wait you need the surgery as soon as possible" We're numb and say "But we're getting married in 9 weeks" and he said "Well that's why we need to do it next week to give him 8 weeks to recover". Ok we're are totally numb.

So, now in addition to finishing all the last minute wedding stuff that I didn't do in advance I am now coordinating surgery with wedding.

He had the surgery exactly 2 months to the day of our wedding - they cut up through his upper palate, took vein and skin from his arm to recreate the palate then grafted skin from his thigh to his arm. He recovered nicely. He was still getting bad headaches so he was sent for a CT one month later and it was clean. Turned out he had wax build up in ear that caused the headache.

The wedding was awesome and we left for our honeymoon - 2 days before we were due home he had an uncontrollable nosebleed which lasted over an hour. The next day again - bad nose bleed and he felt like his nose was "stuffy" -- I emailed the doc from the ship and he told us to come into the office on Monday. We got home Saturday - still nose bleeds all day and more stuffiness. Sunday morning his nose was double the size. We went to the Er and they confirmed a blockage. The doc felt there was grandulated tissue from the march surgery that was coming out and causing the blockage. They scheduled surgery for 2 days later to open this up.

Well, the doc came out of surgery to tell me they did not open the blockage as the minute they went in discovered cancer cells and had to stop until they knew what they were dealing with -- so.....PET scans, CT scans, chest x rays, etc. All confirmed the tumor reappeared only in the nasal cavity -- did not spread anywhere else thank goodness.

Had surgery exactly 3 months from the first (one our one month anniversary). They got the entire tumor out -- again through the palate and they removed his entire upper jaw and took bone from his leg to recreate the upper jaw and then skin from the thigh to graft to the leg. He's now healing good and is on a soft puree diet.

We are hoping to start chemo/radiation on the 20th. Due to the unusual nature of the cancer -- he has a salivary gland cancer but it's not in the mouth - it's in the sinus/nasal cavities which has never been reported, they are going to treat him aggressively and have him in the hospital for 5 days doing 2 treatments of radiation per day and on a 24 hour chemo drip. He will then come home for 9 days and then go back - for 5 rotations.

We're hoping for the best - it's a double edge sword since this is so unusual we have the best doctors in the country reviewing his case, but at the same time no one has any answers for us.