Anybody got a spare instruction manual??

[JudeD59]

Thanks for all the replies!! Not only does it make me feel like I'm not the only one who doesn't always understand her hubby, but you all made me laugh and laughter is the medicine we all could use.

Another of my "I love you, but what are you thinking?" moments came when I had a bowel obstruction from adhesions. I started vomiting profusely and had tremendous stomach pains and was rushed to the hospital. I was in the hospital for 13 days and lost 15 pounds. I had emergency surgery after three days and the NG tube they put in on the second day stayed in until the day before I was released. So I'm lying in my hospital bed with this tube up my nose going down to my stomach and haven't been allowed anything to eat or drink in over a week, not even ice chips and my husband tells me he is going to go get dinner. I assumed he would go down to the hospital cafeteria, eat something, and then come back to spend more time with me. Instead, he went to a nearby Italian restaurant and then came back with his dinner and proceeded to eat it in front of me--some kind of seafood pasta with marinara sauce and a couple of slices of very fragrant garlic bread. You can just imagine what that hospital room smelled like. I was torn between throwing up from the nausea I was still having or ripping it out of his hands and eating it with the NG tube still in since I was so flipping hungry. My daughter came in and said, "Dad! You can't eat that in front of Mom!" and he said, "Well, I didn't want to sit in the restaurant by myself. It makes me uncomfortable." Well, Lord knows we wouldn't want him to be uncomfortable!

Judy

[Annemiek]

Ha!
I was in hospital almost 2 months in which my hub bought a new television for the bedroom ( huge) spoilt our daughter lots and lots and lots and lots and lots. But he did cook for them the entire time I was away and the first weeks I was at home recovering, he visited me almost every other day, did laundry, and started his own routine which worked perfect for the two of them. He did this so well that I felt like an intruder when I got back.
Without him I would not have made it through the way I did. Saying that, I totally had to give over control to him and my fingers ached to do stuff my way again, but since we have decided that the could be only one captain on our ship,I learned to let go ( let it goooooo, let it goooooo...)
We are now squibling to rebuild a more joined routine

I would like to chase him off the couch sometimes, but it's what they say, if you can't beat them, join them. So I leave some stuff undone and read a book as well.

Annemiek

[Lee]

OK this is not my husband, butt supposely a friend.

Had my CRC resection surgery, not allowed to eat or drink until I pass gas. That was on a Monday, had my last meal on Saturday What does this friend of mine bring me to cheer me up on Tuesday following surgery. A box of chocolate candy. Gave them to my brother to take home and enjoy. Could not believe it.

Lee

[LeonW]

Gave them to my brother to take home and enjoy

I'd kept them to within reach to celebrate as soon as the new eat/drink days would allow.

Pitty you've given them away

[CaliforniaBagMan]

If I knew your husband personally, I suspect he might say something about his wife: "I wish SHE came with an instruction manual or a youtube video or something that could help me figure out the gears and gizmos going round in HER head, because they turn in a whole different direction than the ones in my head do."

He would then explain how his life has been affected and buffeted by his wife's illnesses and medical needs, while he has tried to be supportive. He never asked for that but is trying his best. He has attended appointments with her, visited in the hospital rooms after surgeries, plus of course taken care of all of the family and household business while she cannot. He would describe having lovingly taken a broken down Ford mustang and restored it just exactly how his wife would like it, and repainting a room to surprise her even though he is probably very bad at color selection. And while I don't know your husband, I sense that when he is showing off the pictures of the car he is likely bragging about how he did it for his wife and not himself.

But he would also be confessing bewilderment. After doing all these things to be supportive, he would be confused as taking 5 minutes in a doctor appointment, to show off the car and his love for his wife, was out of line? After the onc had expressed interest in cars and when he thought the appointment was already over? 5 minutes, really?

There is, of course, much I do not know. But from what is described, it sounds to me like you have a great husband.

[JudeD59]

If I knew your husband personally, I suspect he might say something about his wife: "I wish SHE came with an instruction manual or a youtube video or something that could help me figure out the gears and gizmos going round in HER head, because they turn in a whole different direction than the ones in my head do."

He would then explain how his life has been affected and buffeted by his wife's illnesses and medical needs, while he has tried to be supportive. He never asked for that but is trying his best. He has attended appointments with her, visited in the hospital rooms after surgeries, plus of course taken care of all of the family and household business while she cannot. He would describe having lovingly taken a broken down Ford mustang and restored it just exactly how his wife would like it, and repainting a room to surprise her even though he is probably very bad at color selection. And while I don't know your husband, I sense that when he is showing off the pictures of the car he is likely bragging about how he did it for his wife and not himself.

But he would also be confessing bewilderment. After doing all these things to be supportive, he would be confused as taking 5 minutes in a doctor appointment, to show off the car and his love for his wife, was out of line? After the onc had expressed interest in cars and when he thought the appointment was already over? 5 minutes, really?

There is, of course, much I do not know. But from what is described, it sounds to me like you have a great husband.

If your intention was to take what was a lighthearted post meant to make members smile and use it as a way to make me feel guilty that my husband has to deal with my medical issues instead of being blessed with a healthy wife who can do all the things couples enjoy doing together, you were very successful. Congratulations. And since you can't see them through a computer screen. let me assure you that you produced the tears from me that you were aiming for with your barbs.

As you said, there is much you do not know. Instead of describing what you posted above, my husband would most likely describe, and I know this because I've heard him do it, how despite having four young children, I spent every single day for months visiting and taking care of his cherished uncle while he was on hospice care. I was the only one who could convince him to eat solid food or open his mouth for his liquid morphine. He would also tell you how I went with his elderly parents to Florida for three weeks one year and a month the next so they could get out of the cold PA weather and have someone who cooked, cleaned, took care of their medical needs, and any other needs they had while on what they said was the best vacation of their lives. Or maybe he would mention that I cooked meals for his parents weekly and took them to their house along with other treats to tempt their appetites for years.

I'm sure he would point out that I never once held him back from any fishing, hunting, golfing trip or convention that he wanted to go on even though it meant that I was left home with four small children, sometimes for as long as two weeks at a time. And he loves to tell the story about how six weeks after my total abdominal hysterectomy, he decided to have lasik surgery on his eyes and had complications which resulted in me taking care of him for a week, including ignoring the no-driving rule imposed by my surgeon when it was discovered that his cornea had come completely off and was sitting in the cup holder of his truck. The truck was parked forty minutes away and I was the only one available to retrieve it and bring it back to the eye surgeon. I've also nursed him through two hammertoe surgeries, a knee surgery, kidney stones, stitches to the head when a winch cable snapped and struck him, and more colds and stomach flus over the years than I can count. I "never asked for" any of those either, but I did my best to take care of him because we are loving, supportive partners and that's what we do for each other. That's what we've done for 33 years. By the way, it might surprise you to know that I "never asked for" cancer to grow in my body either, but I still have to deal with it. Life often gives us things we don't ask for.

As for "five minutes, really?" when you have 20 minutes to discuss why your CEA is 121 even though they haven't found spread yet plus ask all the questions you have about what to expect with your first infusion of a drug as potent as Folfox, five minutes is a long time. It was a quarter of the appointment. So you can try to make me sound as self-centered as you want, but to the gears and gizmos in my mind, that time was needed to answer all the questions I had about my health with my doctor, not to discuss classic cars with a fellow enthusiast.

I'm sure my husband would love an instruction manual explaining me and I know I baffle him on a regular basis. I've sat and listened and laughed as he has shared stories with friends and family about the crazy things I say and do. And he has done the same when I share stories of his hijinks. Because not only do I have a great husband, as I clearly stated numerous times in my OP and later posts in this thread, but I also have a great marriage. One where we don't keep score on who has done more for the other, we just do whatever we need to in order to take care of each other year after year after year.

But even though we don't keep score, you managed to make me feel guilty and selfish for putting my husband through taking care of me during this cancer treatment. You must be very proud.

Judy

[KWT]

Do you need some cheese?

[peanut_8]

[JudeD59]

Do you need some cheese?

No cheese needed, Kenny, but thanks for your compassion. My intention wasn't to whine about all I do for my husband, but to point out that we both take care of each other, we both do boneheaded things sometimes which we laugh about together later, and yes, spending a quarter of my appointment talking about classic cars was a big deal to me when I didn't get answers to all the questions I had for the doctor. But like most things in my life, I tried to share it with humor instead of as a rant. That's what all the emoticons were about.

Implying that my husband has to take care of me through my illness when he didn't ask for this touched a sore spot for me since I already feel bad that our time is spent on doctor's appointments, surgical procedures, and cancer treatments instead of dinners out, weekends away, and vacations we've dreamed of taking. I'm sorry you don't understand this.

This board can be amazingly supportive and informative, but at times like this I wonder if I would be better off lurking and simply reading what I need to know instead of contributing. It's no wonder so many threads have twenty times as many views as replies.

[stu]

Hi.
Your post highlighted to me just how different healthcare is depending on where you live. Until my mum's original oncologist had established a working relationship with my mum if we attempted to ask a question he asked my mum if she wanted us to contribute. We had to seek permission to speak. She loved it. Little smile spreading across her face. Good thing really and would have certainly given you the opportunity to decline.
All joking aside , rising cea is serious and to be fair to you pretty stressful discussing it. Oncology is pretty stressful on all involved and I know you get that it was just a clumsy attempt to connect.
Glad your making progress though.
Hang in there.
Stu

[KWT]

congrats on your Cea decrease.

[JudeD59]

Hi.
Your post highlighted to me just how different healthcare is depending on where you live. Until my mum's original oncologist had established a working relationship with my mum if we attempted to ask a question he asked my mum if she wanted us to contribute. We had to seek permission to speak. She loved it. Little smile spreading across her face. Good thing really and would have certainly given you the opportunity to decline.
All joking aside , rising cea is serious and to be fair to you pretty stressful discussing it. Oncology is pretty stressful on all involved and I know you get that it was just a clumsy attempt to connect.
Glad your making progress though.
Hang in there.
Stu

Thanks, Stu! I can't even imagine that. I can just picture your mom's little smile.

There was a time when if a woman was sick, all questions and information went to her husband. Glad those days are behind us or else I would be a classic car expert and know nothing about what's going on with my body! We went to see the surgeon who is putting in my power port for chemo today. He's the same surgeon who did three of my previous surgeries, so he knows us pretty well. He usually has some electrical questions for my husband since hubby is an electrical contractor. My husband surprised me by showing up at the appointment without warning, but he was a perfect angel and only talked about the procedure. The doctor showed us an actual port and hubby was fascinated, as was I. I wouldn't have even minded if they talked electrical problems today since the port procedure isn't something I'm worried about, but I guess the doctor's electrical problems have been resolved. Port goes in November 11th.

Thanks again!

Judy

[JudeD59]

congrats on your Cea decrease.

Thank you, Kenny. I really appreciate it.

Judy

[kellywin]

Judy - don't let any of these comments derail your topic. Spouses can be asses and even though you love them, it doesn't mean you don't want to beat the shit out of them. And for anyone to make you feel bad for wanting to strangle (ok, my word there) your spouse during this process can take a flying leap. You're entitled to feel any way you want to. I'm sure it's tough being the spouse that doesn't have cancer (and, stepping on my soapbox: I refuse to use the word caregiver because I think it's insulting to the person with cancer, if I wanted a caregiver, I'd hire a nurse, I want a spouse. Stepping down off soapbox) but here's the reality, they don't have cancer = they don't know what it feels like. Attending appointments with your spouse or visiting you in the hospital, doesn't do anything for me, that doesn't help me, and taking care of "household duties" - excuse me, but who says those are the wife's "job"?

Feel free to bitch away, don't apologize.

Edited to clarify: I actually don't think you were bitching, you came across pretty nice about it, I thought. Me, not so much

[JudeD59]

Judy - don't let any of these comments derail your topic. Spouses can be asses and even though you love them, it doesn't mean you don't want to beat the shit out of them. And for anyone to make you feel bad for wanting to strangle (ok, my word there) your spouse during this process can take a flying leap. You're entitled to feel any way you want to. I'm sure it's tough being the spouse that doesn't have cancer (and, stepping on my soapbox: I refuse to use the word caregiver because I think it's insulting to the person with cancer, if I wanted a caregiver, I'd hire a nurse, I want a spouse. Stepping down off soapbox) but here's the reality, they don't have cancer = they don't know what it feels like. Attending appointments with your spouse or visiting you in the hospital, doesn't do anything for me, that doesn't help me, and taking care of "household duties" - excuse me, but who says those are the wife's "job"?

Feel free to bitch away, don't apologize.

Edited to clarify: I actually don't think you were bitching, you came across pretty nice about it, I thought. Me, not so much

Thanks, Kelly. You're a peach. With all the stress on all of us, patients and spouses, I'm surprised we aren't all beating the shit out of each other on a weekly basis. There is nothing easy about any of this.

Thanks again for the support.

Judy