Hi all,
must confess I have not read too many posts yet, because I'm too scared of reading what all could go wrong

I'm Ingeborg, age 47. I live in New Zealand, although I (and my hubby) are German by birth. We've been here for eight years. We have two boys, 6 and 10. My husband (51) has recently been diagnosed with cancer and just completed his first week of chemo. I don't have much of a clue what all the abbreviations mean, but on his paperwork it says T2N2b.

He's had 10 molars removed and a PEG tube put in 10 days ago. Three days later he started his first cycle with Cisplatin and 5FU.

The treatment centre is a 4 hr drive away. I was with him for the first few days but then had to go home to take care of the boys and also see to my job.

I'm the breadwinner, he's the home maker.

Looks like the treatment is taking quite well, because the swelling in the lymph nodes has already gone down considerably, and he also says that swallowing has become easier (the primary tumor is on the tonsil tissue).

Doctors are aiming for complete recovery, but still...

He's home now for two weeks, then off again for the next chemo cycle and the start of 6 weeks radiation.

Right now, he is tired, nauseous, slow....and CRANKY!

He is depressed and I perceive a lot of what he says as moaning and wish he'd be more positive.

Like, if he doesn't feel like eating, and is afraid that he will loose too much weight, why doesn't he use the friggin' tube? We've got the fortisip sitting in the cupboard and he hates the taste but he doesn't want to use the tube because he has not "officially" been shown how to do it.

He's having diarrhea (spelling?), but won't take codein (which would remedy), because it says on the packet "take for strong pain" and he is not in strong pain.

Arrrghhh!

He flies off the handle at every little bit that the kids do "wrong". I have not kept the house to his standards while he was away for the week, so I get flak for that. I've got a full time job, mind you! And had to skeedad off early to pick up the kids from school.

I mean, right now, he's probably physically in the best condition of the whole treatment procedure and I'm dreading the time leading up to Xmas, when he will feel really grotty.

We generally have different opinions about tidiness and how strict to be with the kids, and as long as he is around the house and holds these reigns, that's fine with me, and I normally consent, although sometimes I feel like a third child, when I'm told to put my stuff away or to put a lid on a jar in the fridge.

But if he's away, it's all I can do to uphold my own rules, without having to think what he would think and do and rule, and apply his value system on top of my own. So I just do as best as I can, right, but when he comes home he complains that the kids are running wild and the house is in (apparent? imagined? perceived?) disarray.

I feel like a color blind person, who, alongside of a color capable person can live up to the standards of that person, you know, with reminders and hints, but when he's away I simply can't tell red from green, so how can I be blamed for that? I don't give a toss about a few crumbs in the drawer. I don't think it's important. I don't notice it!!! And then the little one gets told off for the "mess" and gets a long sermon about how much work it is to clean the drawer and how he should take better care about things, and I stand there, rolling my eyes and thinking "... aren't there more important things in life, really?" I had the flipping drawer cleaned in less than a minute. No sweat. What's the big deal? Why make such a drama about it? -- Oh! It's to educate our boys to be tidy and take care of things.

Well, I am not that anal and I still get through life, so there must be more than one way!

I can handle the sickness. I can handle the logistics with the kids and my job and blowing all my annual leave so I'll be around for him when he needs me or the kids are off for school holidays. I can handle the prospect of his condition getting worse before it gets better.

But I can not handle the prospect of being screamed at for trivial things like why did I not tell the 6 year old to clean the chocolate crumbs in the drawer, and does nothing ever get done right when he's not here.

Either he or I will need a prescription of valium before the year is out.

How much worse will it get before it gets better? Can they give him a pill so he does not obsess so much about f**ing tidiness?

He needs half an hour to decide if he wants to have a coffee, but he screams at the boy because the boy did not jump up to his request to help him find his glasses. He conveniently fails to notice that he called the younger boy, who was not even in the room and the freaks out because the older boy (who was engrossed in a book on the sofa) did not jump to attention.

JEEEPerz!

Will that get any worse?

Please tell me that the patients get more complacent and, errr..., well...., "patient" (LOL) while treatment progresses.

Thanks for letting me vent.

Ingeborg

Ingeborg, on the good side, as your husband progresses through treatment he will feel worse and hopefully won't notice or care about the little things in life such as a house not picked up, etc.
Good luck in the weeks ahead, if he gets nasty have him go into another room and close the door. Soon his throat will be too sore to yell.
Nancy

Ingeborg, I'm sorry you and your family are going through all this. We are here for you so vent and talk all you want.

I wonder if your husband's behaviour has anything to do with the frightening feeling of not being in control when cancer strikes.
The treatments, the procedures, what will happen to him, everything is new and unknown. If he is a tidy and precise person as you describe, there is only a "right" way or the "wrong" way that things are done. This may become magnified as his way of coping with the loss of control.

As treatments continue, you will both become more familiar with procedures and the "control" issue will hopefully stabilize.
Plus, when he gets good pain control meds, he will likely mellow out.
Ginny

Can you hire someone to clean the house for you so you don't have to take care of that? Things will probably get a lot worse before it gets better. Hang in there and vent all you want.

Take care,
Eileen

Oh my, now this is something I can relate to.
Maybe not the degree but certainly the feeling of "walking on eggs".

The more control they loose to the disease the more they try to control other things, at least in my experience.

Hubby did try to keep these feelings to himself but I could tell how nerve wracking it was for him not to have everything neat and tidy. That made me twice as tense and responsible for making the home life "perfect". I tried so hard.
Then seems like when he was the most miserable a routine set in.
After each treatment
dinner
long hot bath
bed

He didn't have much energy to even notice things on the floor unless they tripped him. He had no desire to even look in the silverware drawer much less inspect it. Things that bothered him to no end before weren't important.

Now everyone is different in how they handle things.
Hopefully he will back off and give you some space.

If not....... vent away here.
Margaret

Maybe I was different but during the throws of my Tx all I wanted was to be left ALONE. Don't get me wrong, it was comforting to have my wife around even if all she did was nag the crap out of me and save my life a time or two but everyone else I wanted to avoid.

Ingeborg

Welcome to OCF. Im so glad you have found this site. Your post was a very good example of why OCF is here for caregivers too. Im sorry that you are having a rough time of this. Sometimes patients dont realize how their behavior affects others.

Has the doc prescribed anything for your husbands anxiety? If not, it would be a good idea to go with him to the next doctors appointment and explain that he is a bit moody and easily upset.

Have you lined up people to help you? Even if they would take the kids out for a couple hours its a big help. How about neighbors, church, other relatives. Think about anyone who offered to help, give them a weekly job like picking up some groceries or doing a load of laundry. The further he gets into his treatment, the worse he will feel and need more attention.

Please feel free to lean on us. If you feel the need to vent, this is the place you will get support. Hope tomorrow is a better day.

From the very first day he was diagnosed until the day he died i tried to put myself in Robs shoes.I would lie at night and wonder what it felt like to hear those words"you have cancer" and of course eventually "its back and theres no more we can do" but i couldn't.Nobody can,and nobody can even begin to guess how they would behave if they were waking up every morning knowing that it wasn't a dream or worse still a nightmare.At different times of our lives we all become aware of our mortality and the shortness of our time on this earth,but we put it to the back of our minds and just get on with the day to day business of living,because we can.I was angry,and it wasn't even happening to me,so when he was angry and beligerent and cruel and hurtful and critical and possessive i had to count to 100 and just try really hard to think "what if that was me,how would i behave"The truth is i dont know.I do know that in facing death i will never be as brave or accepting as he was,but its a very true saying "we always hurt the ones we love" and i guess that must mean he loved me very much.

During my time on these boards i have met and shared with so many women going through what you are Ingeborg,and thankfully the majority have survived and moved on to a stronger and better realationship,but we have all come here in the depths of despair wondering why this disease has taken our men and replaced them with a snarling cornered wounded humand being whos sense of control has been reduced to lashing out at their families.Its hard for him and hard for you,and until the worst is past and he starts to move out of the shadow of his diagnosis and the treatment that goes with it,life will be tougher than you thought possible.

All i can say is that people like Margeret Hupe and Wendy G and thank god many many others come out the other side and cherish the wonderful things that come with successful treatment and lights at the end of the tunnel.How did they do it? Just like you they came here and bared their souls to people who are living or have lived the same nightmare you are in right now.

Thanks Cookey, I did bare my soul and to this day I think that's one of the things that kept me sane. Ingeborg, being a carer is damn tough. Like Cookey, I also am constantly thinking "how would I feel if I was in Steve's place" and I too have no idea. I don't think we as carers can ever fully comprehend what the nightmare is for our loved ones. We can try but we can only truly understand what the nightmare is for us. You will have good days but you will have some rough one's as well. I suppose that's where the wedding vows "for better or worse" come into play.

My advise I suppose is to stay strong. Cancer will test the strength of you, your marriage and your family. But you will get through it, like we all do. Hopefully your husband will learn from this about what really matters in life and that crumbs or a house less perfect don't really matter in the scheme of things. This is a huge learning curve for you and for him. When Steve had bad moments I sometimes would stay with him, quietly. Other times I would walk away and have some space. Other times I would react and let him know what I thought of his behaviour which I tried not to do but sometimes it happened. The guys here are wonderful so come here to vent when ever you want to. I kept and still keep a blog. It helped me incredibly to get my feelings out plus I got wonderful support from my virtual family here. Most of all, take it one day at a time. Some days will be crap, of that I can assure you, but others will have moments that take your breath away because they are the best. And it can be the simplest things that make these moments the best. These moments are the things you need to hold onto and remember they will come back after the bad moments disappear.
Wendy

Amen to that Wendy.xx

Ingeborg, you brought back so many memories. Martin was irrate then impatient but as he got weaker through treatment he went very quiet, too quiet. it was even worse than him being angry. It took him ages before he accepted the tube. he was so thin but kept refusing it. He says now looking back he was trying to pretend all was fine. admitting he needed the tube was admitting failure towards the cancer, as absurd as it seems. He wishes the dietician had forced him to use it. Maybe you can ask a nurse to talk him into using the PEG and show him how to use it, or you can learn and feed him. I had when Martin was at his worse.
It's a tough job being a care giver but try and be strong, vent here and have some you time outside. If I am right it's summer in your part of the world? Is there anyone there to help you look after the kids while they are on their summer holiday?
Just keep strong.
Cecilia

Wendy put it beautifully.

People react with a shocked look when I say that Jody is a cancer survivor. I always say that it was the worst thing that ever happened and we turned it into the best we could do as a family.
Am lucky that my daughters were grown. Each one took a day every week to drive 5 hrs round trip with Dad for his treatments. Such a wonderful time to connect one on one with their father and him with them. I know he cherishes how special that time was.
Don't get me wrong, cancer is a lousy rotten thing and no one should go thru it. I guess it's the way we fight it.

Is there a summer camp or day program for children there?
Anything you can do to relieve some of your stress is a big help. Then there is always " scream and beat the heck out of a pillow" (made me feel better but can leave you with a sore throat)
Margaret

All,

thanks for all your kind words. I read them all, lapped them up, more like, and really appreciate that you took the time to reply.

It's good to have a forum like this, and I know that nobody will be upset or angry that I didn't reply sooner. You've all been there, done that, so you know what it's like.

Treatement finished late January, after three rounds of Cisplatin, with 5Fu thrown in the first round, too. 30 radiation rounds.

At the end of the treatment, Volker said if someone had offered him a switch to end his life, he would have thrown it.

He was a miserable heap, and you are right, the crumbs in the drawers were not all that important anymore. It's all a matter of perspective, I guess.

I know I will never really understand what he feels like. What it's like to have no energy, no appetite, hardly any teeth to chew with and no saliva to get the stuff down.

The scan they took 3 months after tx was finished was clear. So there's good news, after all.

Now we're trying to get the patient back into a healthy, energized state, which is difficult. He tried to stop tube feeding a few weeks ago, but since oral food intake is still too much of a problem (Yuck factor, lack of appetite, saliva and taste), he lost even more weight, until the dietician whipped him back into shape and ordered him to get 8 Fortisips per day te even keep his weight, not mentioning gaining any.

He's very keen to lose the PEG tube, because it bothers him. But there are not many days where he manages to take in even 200 Calories on top of his 8 bottles of Fortisip.

Is there a section in this forum that discusses recipes and tips for food preparation? What to offer? How to prepare? I'm a keen cook, but lately, nothing I come up with seems to do the job. Can't do potatoes (they apparently dry up the mouth even more), nothing fried, no fish, no meat, no salad, no bread. Some soups work, but if a soup works one day, it does not mean it'll work the next day, too.

So I cook and freeze and cook and freeze, and have the freezer filled to capacity with things he once thought he'd like, but now no longer wants. If I could cook only three tablespoons full of stuff, I would, but with anything I cook, at most three spoonfuls end up in him and three tupperware containers go in the freezer.

Note to self: learn simple arithmetic and divide my recipes by 8.

Everything I prepare for him, I try to add lots of carbs and fat. Then he takes a little sip and since the freezer is full, I feel obliged to tuck in, so it doesn't go to waste. No waste = bigger waist. Mine. Arghhh.

Soon we'll both need new clothes, he, because his stuff is too loose, me, because my stuff is too tight. Maybe we should just swap?

He's teamed up with a guy who went through the same treatment and is about 4 months ahead of him. That gives him some kind of perspective and helps set expectations.

Still, I'd never have thought that the recovery after the treatment would be so slow.

I guess we'll invest in a real good juicer and continue to poach eggs for a while.

I'll be lurking and reading posts, even if I won't post much myself.

This forum is an incredibly helpful resource, although there are still some corners where I don't dare to go.

cheers

Ingeborg

Here is a list of easy foods for beginning eaters...

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

There are other ideas under the food heading also.

Getting a good blender was crucial for us. The "shakes" saved us when Gordon could no longer get down even his beloved oatmeal. I would put in 1 cup of fortified milk, 1 1/2 Boosts, 2 scoops of ice-cream and 3 TB of whey protein powder into each shake. I was adding fruit such as papaya, strawberries and mangos until his tongue couldn't take it any more. Because he's pre-diabetic and lactose intolerant, I had to put drops in the whole milk and add more for the skim milk powder I added to the milk. Luckily I found a "no-sugar added, lactose free" ice cream. We are still trying to get in 4 of these shakes a day, and he's having bits of other things like Cream of Wheat (which works fairly well), applesauce and finely cut up papaya to get him eating soft food as well as having the "shakes". Also "no sugar added" puddings. It's trial and error. To test what he can tolerate, I take a tiny bit of something and give it to him on a plastic spoon. He gets it down, waits a few minutes for some possible backlash and then I get a thumbs up or down. Little bits of this and that will give you an idea of what Volker can tolerate. Gordon can't take yogurt yet, but when he does, I'll start adding that to his shakes. Good luck with it all - feeding is a tricky business.