Impact on Family

airborne72

Everyone:

My question tonight to the list is this...how do you manage the impact of colorectal cancer on your family?  That's a broad question, but some of the sub elements include such items as how do you maintain a positive, physical presence?  How do you tactfully decline to participate in activities?  How do you try to remain in the background instead of the foreground?  What do you do when you just can't be your old self anymore?  How do you subvert negative talk/forecast/prediction into positve outcomes?

I think you understand my question.  Colorectal cancer slowly degrades our health, our future but it also drains the strength from our families as they watch the effects on us.  It is very difficult for them to observe the process while they feel somewhat helpless.  That adds to the frustration of the cancer victim.

Cancer sucks.  It impacts the entire family unit.  How do you protect your family?

Jim

 

 

 

NHMike

Hello Jim,

Hello Jim,

I have a fair amount on this area but I'm swamped at work right now so this is just a placeholder for comments later on. I do have more of a blog-style post at http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58447&start=135 if you want to see more details on how I've been handling some issues.

 

mike

BRHMichigan

Hardest thing

Hi, Jim.

I so empathize. I am more concerned with impact on family than myself.  I've found honesty works better for me than hiding the pain.  However, I try to present my 'new normal' in as positive a way as possible.  I am here and plan on being here a long time.  I pray for the day we can enjoy family functions like we used to, not drawing any attention as a result of our condition.

Woodytele

Family impact

i have a young family, and it is incredibly hard on my wife and myself.  My thoughts are to do as much as you can, both physically and mentally. Understand that you may not be able to do everything like before, but focus on what you can do, and enjoy those moments.  You also need to just cry it out sometimes for a release, then move on, tomorrow is another day, the sun will rise and you Focus on the positive. 

The family can feel helpless, but they may be able to contribute in some small way, so let them.  If they want to bring over some food, watch the kids, mow the lawn, let them do it. 

Its a battle, but  do the best you can, that's all anyone can ask.

 

JanJan63

I wish I had an answer. My

I wish I had an answer. My closest family members know howit goes and I have good days and bad and we can't count on me being able to do anything at a future date. They seem to have accepted it. I have noticed a slow moving away of friends. They're there for me and have been fabulous but I don't get invited to do as many things as I used to. I've had to cancel out of a few things or leave early. Unfortunately there's no predicting how a day will go. I can have a day where I do a lot and should be tired the next day or two and Im fine. Other days I'm exhausted for no reason. When people run into me- we live in a small town and this oftens happens- they seem surprised that I seem so good but that's because on a bad day I'm at home. Right now I have a bad rash from my chemo that covers my face and chest sopeople see that and know things are not all good but they seem to forget.

Before having cancer I didn't know enough about it so I think I was like them. If I knew someone was no longer on chemo and wasn't visibly ill then I thought they were okay. I didn't understand the loss of energy or the fatigue or the changes that can happen daily or even hourly. I also try very hard to seem okay when I talk to people and don't discuss what's really going on so they may think I'm doing better than I am.

I've missed out on a number of things and events because of this, usually at the last minute because I don't know until the day of that I can't make it. Most of my family seems to understand but I have a small family. Sorry, what I just yped was of nohelp at all. I guess I'm just sympathizing with you. Sometimes I find that even my closest people, my daughter and my husband, can be surprisingly unsympathetic. My husband has complained that I don't mow the lawn anymore or shovel in the winter, my daughter has said maybe I could do more if I just went out and did something. It's shickingly hurtful when that happens. I think they lose patience sometimes. And I used to be vey busy and never sat still. I've had to come to terms with this as well as them.

Jan   

JanJan63

JanJan63 said:

I wish I had an answer. My

I wish I had an answer. My closest family members know howit goes and I have good days and bad and we can't count on me being able to do anything at a future date. They seem to have accepted it. I have noticed a slow moving away of friends. They're there for me and have been fabulous but I don't get invited to do as many things as I used to. I've had to cancel out of a few things or leave early. Unfortunately there's no predicting how a day will go. I can have a day where I do a lot and should be tired the next day or two and Im fine. Other days I'm exhausted for no reason. When people run into me- we live in a small town and this oftens happens- they seem surprised that I seem so good but that's because on a bad day I'm at home. Right now I have a bad rash from my chemo that covers my face and chest sopeople see that and know things are not all good but they seem to forget.

Before having cancer I didn't know enough about it so I think I was like them. If I knew someone was no longer on chemo and wasn't visibly ill then I thought they were okay. I didn't understand the loss of energy or the fatigue or the changes that can happen daily or even hourly. I also try very hard to seem okay when I talk to people and don't discuss what's really going on so they may think I'm doing better than I am.

I've missed out on a number of things and events because of this, usually at the last minute because I don't know until the day of that I can't make it. Most of my family seems to understand but I have a small family. Sorry, what I just yped was of nohelp at all. I guess I'm just sympathizing with you. Sometimes I find that even my closest people, my daughter and my husband, can be surprisingly unsympathetic. My husband has complained that I don't mow the lawn anymore or shovel in the winter, my daughter has said maybe I could do more if I just went out and did something. It's shickingly hurtful when that happens. I think they lose patience sometimes. And I used to be vey busy and never sat still. I've had to come to terms with this as well as them.

Jan   

Sorry for the typos. I have a

Sorry for the typos. I have a band-aid on one finger.

NHMike

Yesterday the family wanted

Yesterday the family wanted to go to the beach though I didn't want to because it would be a long drive and I'd have to deal with public toilets and the forecast wasn't great and I worried that it would be crowded. I went before the trip so I was in pain for about 30 minutes and then it subsided. It turns out that we got a great parking spot with no effort and the weather, while a bit windy, wasn't all that bad. I was in pain for a while due to gas but took care of that eventually and just relaxed and the drive home was fine. What's important on outings is figuring out whether or not you can manage them - basically determinining or guessing how much you can tolerate and the likelyhood of problems. If I know that I can't manage something, then I'll push back.

Pushing back isn't that hard if you have cancer for most people because most people think that you're dying and don't want to give you a hard time. Family, though, may know better; especially if you've explained it to them.

So say no more often, figure out what you can realisticaly do, have failsafe products and methods, and be ready to deviate from your plan if you have to. I brought a bag with an extra set of clothes, a roll of toilet paper, Depends Shields, a towel, and other stuff. If I had to take a break, my Garmin would tell me where there were rest stops. Staying overnight or at a hotel for a few hours was an option too.

They will have to understand that things will suck for a while as to what you can contribute. I've had to take care of my wife in the past so she understands care. If your kids are adults, then they can be expected to help out unless their lives are already challenging.

NHMike

Are things getting better

Are things getting better this week physically for you?

airborne72

NHMike said:

Are things getting better

Are things getting better this week physically for you?

Yes, and Thanks

Yes Mike, and thanks for asking.  Slowly and steadily my body is recovering from the chemo/radiation.

In mid August I agreed to work parttime for an organization.  I agreed thinking that the mental focus would sharpen my"dulling, retired" mind.  It has helped there, but it has also been a consumer of my energy.  I am watchful to ensure that I don't jeopardize my health.

How about yourself?  Have you swallowed your last handful of Xeloda and exposed your "private parts" to the zapper for the last time?

Jim

NHMike

airborne72 said:

Yes, and Thanks

Yes Mike, and thanks for asking.  Slowly and steadily my body is recovering from the chemo/radiation.

In mid August I agreed to work parttime for an organization.  I agreed thinking that the mental focus would sharpen my"dulling, retired" mind.  It has helped there, but it has also been a consumer of my energy.  I am watchful to ensure that I don't jeopardize my health.

How about yourself?  Have you swallowed your last handful of Xeloda and exposed your "private parts" to the zapper for the last time?

Jim

Very glad to hear that you're

Very glad to hear that you're doing better.

Today is my last day. It was supposed to be yesterday but the Radiation Center lost a network server one day so they couldn't do appointments today. It was a small taste of what the folks in Houston had to go through though MD Anderson was out for five days and the folks going through chemo/radiation in Florida have to be concerned over a pause in treatments.

I was in a meeting to announce that I was diagnosed but the meeting was overshadowed by someone else with bigger problems than mine (different kind of cancer). He had a number of dental problems requiring work on some implants and a root canal. He's taking a leave of absence for several months to get his overall health back in shape - he may have been working too hard. I've read that you need to take care of your dental health through chemo and radiation - my oncologist reminded me of that. I haven't done the best job nor the worst but I'm back to cranking on it. So work is good but we are damaged and need rest from time to time.

Yesterday I went out to hit tennis balls for 35 minutes. I was not sure that I could do it until we started and, even then, there were times when I felt like stopping because of GI issues (which turned out to be just gas). I edited the video last night and iMovie is writing it out to disk and I'll upload it to YouTube later today. I was pretty tired at the end of it which means that my stamina isn't what it used to be. But I want to work fairly hard on getting my fitness, strength and overall health back for the break period. A radiology nurse suggested a meeting with a guy that works at Dana Farber, is a CRC clinician and a lab guy. He gives lectures on nutritional health. I'm wondering if he can do nutritional panels and then make recommendations for supplements and diet. I should finally have time to do something like this without the morning appointments. My sister also recommended someone similar in her town - he's helped a few friends of her that are Stage 4 and they're doing well on Chemo and still alive after two years.

I'm working on some time off in there too for family rest and relaxation.

So I'm feeling okay. I'm using Depends Shields to deal with any small leakage issues and controlling how much I eat to minimize the pain in the bathroom.

Here's hoping that you continue to improve to maybe normalcy soon.

NHMike

Last radiation treatment and

Last radiation treatment and taking last Xeloda tonight. I had lab work done and Lymphocytes, Red and White Blood counts and Hemoglobin and Hematacrit are all below standard ranges.

My tennis stamina is about 25% of what it usually is. That's based on being able to hit for a couple of hours normally where now I get quite tired after 1/2 hour.

So no wonder we're all so tired. It's only something that I notice at the margins. I can walk right now, probably as far and long as I want to. But I'd guess that I can't run anywhere like I used to be able to. So stuff that requires little capacity we can keep doing. But things that are near the limits result in greatly diminshed capacity. And I think that's about 25% for me.

PamRav

Congrats

on making it through.  And still playing tennis!!!!!!  My goodness.  

You the man!!

SandiaBuddy

NHMike said:

Last radiation treatment and

Last radiation treatment and taking last Xeloda tonight. I had lab work done and Lymphocytes, Red and White Blood counts and Hemoglobin and Hematacrit are all below standard ranges.

My tennis stamina is about 25% of what it usually is. That's based on being able to hit for a couple of hours normally where now I get quite tired after 1/2 hour.

So no wonder we're all so tired. It's only something that I notice at the margins. I can walk right now, probably as far and long as I want to. But I'd guess that I can't run anywhere like I used to be able to. So stuff that requires little capacity we can keep doing. But things that are near the limits result in greatly diminshed capacity. And I think that's about 25% for me.

Xeloda

It is a joy to kiss that Xeloda goodbye.  I am 15 days out now.  At day 13, I started to get back to normal.  Hopefully the trend will continue.  Congratulations.