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Picking a spot under the radar.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Mark is in his last full week of treatments. He has 2 days next week (last chemo on Monday and last rad on Tuesday). While he is doing remarkably well, he has psychologically defined this week as, "going to be rough". He is burned out by the treatments, by not being able to taste food, by having a tube hanging out of his stomach, by his jaw being tight, and bothered by the sores in his mouth. He misses his life.
As caregiver, I feel I need to give him as much room as possible to be miserable, irritable, quiet, tired...whatever. This does not mean that I am not without feelings about this week, the past weeks, the weeks to come, the months to come...but they will drop below the radar for now...I have friends, and I have the gym, I have here. It is time to push Mark through, over the line.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Mark will find a way even though i might make people around him miserable or sad for him that there's nothing they can do but hold him.

Claire was thinking that there ought to be a caregiver's survivor network. She went through a lot with me, often holding me when I said I could not take another step.

Thanks Kimba for all you have done and will do for Mark. Your endurance is a measurement of your love for Mark, and I know he knows this even though he's in the throes of this brutal battle and may not be able to say so.

Best,

Mick

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

It is true. We care givers need to be well supported so we can support the one we love as he/she goes through this. I am lucky to have good people around me as well as all of you, who really know what helps.
Mick, I sent you a PM the other day. Let me know if you got it.
Kim

rozaroo
Posts: 667
Joined: Apr 2010

I so respect & admire you. If it were not for my husband Bob I couldn't have made it through. I do know that I drove him crazy at times. But he is a tough cookie & never back's down when he is in for a fight. Mark is doing admirably. He know's how lucky he is to have you. Boy what a test you have gone through. I think Mark understand's by now that you are in for the long haul! God bless you both!

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Boy you just outlined by life today and thank you for that. I've been trying all day to express it.

Two of Glenn's nurses from the cancer center even called me, because they've noticed a change, just to buck me up.

Glenn is doing well, all things considered, but he does feel miserable and it's so hard to see. Not being able to do anything really helpful is painful.

Keep going. I'm trying to be just like you.

Lisa

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I understand, and remember, the down times when one's physical condition isn't good, Kim. But it's just for awhile longer. Certain side-effects will likely remain, as I've discovered over my 15+-months, post-treatment, but they are minor compared to the physical problems w/treatment- which were also acceptable, to me. You and Mark know Mark's very sick, and it, simply put, takes this experience to get rid of the sickness. This is nothing more than the rough road we've all been down. I was able to stay in the Positive- knowing I would survive it, and I liked to think of it as An Experience. Yeah, and that Experience leads to a 2nd-Chance at life. That's something to be at least a little excited about, Kim. Hope this helps.

Believe

kcass

Fire34
Posts: 351
Joined: Feb 2010

My wife all thru my treatment kept the heat on(no pun). She kept pushing me even when I was down and out. when I mean out I mean quitting all together. The port and tube were a given and I also hated the tube hanging out. But knew that the tube was needed.
Kim, keep pushing even when you dont want to, after Mark starts feeling better he will appreciate you more than he does now. Especially when he looks back at all you have done for him. Best Wishes & Prayers
Dave

CajunEagle's picture
CajunEagle
Posts: 358
Joined: Oct 2009

Seems I did okay until that last week of treatment, and just dreading having to go one more round of Cisplatnin. That last round and subsequent concurrent 5 days of radiation were almost the knock out punch. My wife says that I was semi-catatonic, but she would pull me out of it with her humor. During the worst of times, she would go over to the piano and act like she was Karen Carpenter and start singing "We've Only Just Begun"....and be way off tune. It would crack me up.

Larry

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

Although he is finished next week, this a difficult time on him and you need to continue your excellent care/support. Stay in that caregiver mode-he needs you now more than ever. Encourage him to do one thing around the house daily (get the mail, make the bed, walk around the house, play a video came, crossword puzzle, sudoku game...one thing)That will help his mental focus. Remind him to keep swallowing sips of water. My Mike hates his PEG tube and he wraps it up with an ace wrap (6" wide works best) and allows him to feel more normal.
Hang in there. We are 4 weeks out and it truly sucks. I cry and scream when I'm not around him. You can do this.

debbiejeanne's picture
debbiejeanne
Posts: 2364
Joined: Jan 2010

Kim, I'm sorry that Mark isn't feeling so well, I know it is very hard for the caregiver. I don't think I fully appreciated my husband while I was going thru my trmnts. Unfortunately, the trmnts make us forget that we would be lost without people like you to help us thru each and everyday. I am 9 months from last trmnt and it wasn't until maybe 2 months ago that I really thot about all he did for me and it actually made me cry. He (Jr.) did EVERYTHING for me and I could NEVER thank him enuf. He even put up with my crankiness and bad attitude, because he understood that wasn't me. I know it is not easy for you caregivers and we should thank you everyday. I try to remember and the Jr. at least once a week for just being there for me then and now. So even tho Mark has his bad days and may forget to tell you how awesome(b/c u r) you are, I know that he truly appreicates you and will get around to thanking you. It's ok too if you take an hour or so off just to go let off some steam. I believe it is just as hard if not harder for the caregiver. Besides you going thru the cancer with us, you do your best to keep from getting upset when we throw attitude at you. Please just know, Kim, that Mark will be himself again soon. Well, it could be another six - nine months but he will return. Please hang in there a little longer and come here to vent or go for a drive, just don't ever give up.
To all caregivers I say, You ARE APPREICATED MORE THAN WORDS COULD EVER EXPRESS. We, the patients, are very sorry for snapping at your, raising our voices to you, of saying, "just leave me alone", and the other million things we do that hurt you or upset you or makes you mad. We don't mean it and we will feel guilty for it a short while later. Please hang in there will us tho b/c when it is better and we feel human again, we will celebrate with you to show our appreciation!!!!!! :0)
God bless all you caregivers!!!!!
debbie

greg from pa
Posts: 86
Joined: Jun 2010

wow, Mark is a lucky man to have you there.Your tenacity in this fight is an inspiration for all. Greg

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

You're almost there Kim, keep pushing. It's understandable for Mark to be 'dreading' this last chemo injection, but then again, it is the last one, that should give some encouragement right there. I'm not looking forward to my last chemo either, but I am looking forward to having it over and done with. Continue to be as strong as you've been Kim. Cheers.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Kimba,

If it were not for people like you a great many of us tough guys would not make it through this whole process. I know that without my wife I wouldn't have made it. What she did was just to be there for me, and sometimes I was a royal pain. Sometimes she would say, I just don't know what to do for you, how to help you. And I could not give her an answer. So we both stuck it out and I am 3 1/2 mths. out and doing good. So hang in there and these things will pass.

Best,
Steve

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Thank you everyone for your validating and supporting words. I am finding the end of treatment a new path to navigate. This whole process has been a series of re-adjustments to the new state, the new needs, the new feelings (pysical and emotional). I think right now these final days of treatment feel like we are in slow motion. The days seem to get crossed off slower. I think Mark is growing inpatient, and he is now asking how soon until his taste comes back. I use the knowledge I have gained here to give him anecdotal feedback; and remind him that everyone is different. Flexible, patient, and accepting seem to be qualities that are most critical right now.
Thank you again for holding me up as I hold up Mark. Funny how he has no idea the number of people who have my back, as I have his.
Kim

davidgskinner's picture
davidgskinner
Posts: 81
Joined: Dec 2009

Your description of the last weeks of treatment as time in slow motion rings very true. That was when I finally realized that I was not tough and infallible. I was dependent on others to live. Doctors, medical experts,friends, caregivers... It was a place I had never been before and I am sure it made my interactions with others less than perfect, to say the least. I am glad they stuck with me and kept saying, "It's going to get better."
Someone said it, but I think it's worth repeating, having a schedule and little tasks to do each day was very helpful to me. I had checklists of meds to take, walks (no matter how short) calories in, sudokus, video game levels complete, all kinds of things to work for and distract me. It worked at bit. But there was still lots of crying and suffering, no doubt.
Hang in there, he is a very fortunate man. You are a very good woman.
david

ratface's picture
ratface
Posts: 1235
Joined: Aug 2009

I most appreciated the touch of another human being. So simple but so powerful. I first learned of this during a particular awful and painful part of the peg insertion that was not going well. The nurse caressed my forehead and everything was better. Do the same for Mark.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Kim and Mark, here's hoping these last few days of treatment go better than you're hoping for. Stay strong and continue to be positive. Best wishes your way. Cheers.

Jim

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Thank you Jim for your well wishes as we wrap up this treatment phase. Filled Mark with fluids and calories over the weekend and he is off to work a little before his final chemo. This man can rally.
Best to you and I direct your advice back at ya: Stay Strong!!
Kim

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