Caregiver Question

Lyshala

I hope its okay that I have joined you all.  I really truly appreciate all the stories you have posted - your successs give me strengthened hope.  

 

My husband was diagnosed with liver cancer a year ago. He had a chemo embolization and SBRT? radiation.  It worked.  He went thru a million tests to get on the transplant list - passd them all with flying colors.  We had our plane tickets in hand for the final testing to get on the list, and they said - Oh lets do another colonoscopy before you go.  They found 2 lesions in his colon.  This is his second round with colon cancer.  He had a hemicolectomy? in 2010 - before we met.  His brother is also a survivor - 10 years I think so they think it's genetic.  

There was supposed to be surgery after chemo.....so all summer he did chemo and worked full time.  Did I mention that that is when we got married and his exwife died and our family grew to 8?  They did another colonoscopy and found another lesion in the rectum. Didn't want to do surgury on the rectum because of hepatic hypertension.  So more chemo.  and then 30 radiation treatments.  

He finished tratement almost a month ago and he is still in terrible pain.  He feels constipated all the time - so there is the constant worry if that is just the radation or still the tumor.  He has a CT scan in a week.  So if you got this far I guess I have two questions...

Did you still have pain (Major pain) over a month after treatment?  Does this mean anything - or are we reading into it (Like we have everything for the last year?)

Also - the more important question - the reason I even started this......

 

I read all these posts.... and some talk about their fear.  And how you keep it all to yourself.  Or wives and husband talk about thiers and how they don't share so that they don't increase the stress of the partner.  So now looking back - what would you prefer?  I am sure thi is very individual - but sometims I get so scared.  Especially right before a test like this.  I say nothing  because I feel like if I open the flood gates I will lose it - but doesnt he have the same fears - except probably ten fold?  Does it help to talk?  Do I let him talk and share my fears elsewhere? Do you wish your spouse had talked more or less or whatever?  

He is so brave and so are all of you - thank you truly for any responses.  

 

JanJan63

Welcome. I'm sorry for the

Welcome. I'm sorry for the reason you're here.

First, the radiation swells the tumour before it shrinks it. This can peak at about 8 weeks after finishing radiation. So the discomfort might be that. Or possibly there's irritation in an area near where the tumour is.

Regarding the second thing you asked about, what I found worked best for me was when my husband would just listen as I went on and on. He'd just agree or say things that let me know he understaood as well as he was able to. There were a few times when he'd say things like 'but the important thing is that you're alive'. Which sounded like he was minimizing my emotional state. I think he was just trying to be optimistic and getting me to look on the bright side. But I found that when I was really despairing over the cancer and the treatments and the fear and whatever else it felt more like he was telling me to just be grateful for living. And I resented it. I felt like is he grateful for living? Is the average person having to feel grateful for being alive? Are we supposd to just accpet all the crap that comes with a cancer diagnosis because we get to have the most basic thing a person has, being alive? Of course I'm grateful and I thank the Lord every single night but am I really supposed to suck it up about the bad stuff because I get to live? Why can't I want to live and also live well? I also found it really annoying when I'd say something negative and he'd try to turn it into something cheerful. Or try to diminish what I was feeling. 'Oh, don't talk like that, you'll be fine' things like that.

I hope this gives you some perspective about some of the feelings some of us may have. Your husband might feel totally different, though. This is just my personal journey. And men tend to bottle up feelings. Good luck, just be there for him.

Jan

John23

Care-giving….

Care-giving….

I’m the one with cancer. But I have been a care-giver for my wife on a few occasions….

When she had a cerebral aneurysm rupture and required open surgery, I was there for her. I had to make the decision to operate, and I was there nearly 20 hrs per day/night post-op and recovery. There were times that she didn’t feel she would make it, but I did my best to give her confidence that she would pull through. It was a long recovery and therapy, and her fears of losing part of who she was due to the brain injury was her biggest fear. I was there to assure her that I would always be there, and that she would recovery as much as she wanted to recover, in time…. She did recover fully, with minor losses that mean little, and others that only I can discern.

When she was in a major head-on collision as a passenger in her brother’s vehicle, I was there at her side as soon as I had been notified. I slept in her hospital room, just as I had during her aneurysm. She worried that she might never recover, but I did whatever I could to give her confidence that all would eventually be well. It took a long time to recover from her injuries, but she did. I was there rooting for her all the way.

That’s what care giving is all about. You are there to provide support. You make sure that the injured knows that you take it as seriously as they do. You listen to their fears, but do your best not to show your own fears, and instead encourage them to look ahead; to keep their eye on the horizon, regardless how foggy the conditions are. You offer support in their hopes, and provide some hope showing your own faith that they will be OK.

You shouldn’t show any indication that you fear they may lose their battle with recovery, but you shouldn’t indicate in any manner that you take light of their situation either. It’s a fine balance of letting them know you accept the possible worst case scenario, but have the faith that they will not be faced with the worst case scenario. You have to provide support for their inner hopes for survival.

And it isn’t the easiest thing to do.

As a stage four colon cancer victim since 2006, I spent years of worrying about a recurrence. And now I’m facing it. I’m facing it big time. I find it very difficult to be optimistic considering the magnitude of the surgery needed. The odds of survival are like winning the McDonalds Monopoly game. I’d have a better chance at getting hot French fries.(impossible)

My wife says very little about it all. I often feel that she is in denial, not wanting to fully comprehend the seriousness. Or possibly she has so much fear she rather not reflect what she fears. We’ve been married since 1963; rarely apart. It’s hard to think of all that ending; of being apart…. Of dying.

Provide as much support as you can, and in the ways that your partner needs. Don’t be afraid to give as much of yourself as you feel you can, and don’t do what so many others do, and pull away.

It’s a normal reaction to want to run from what hurts, but the pain of having done so may hurt worse in the end.

Love today for today; forget the ills of yesterday, and do your best to look for a better day tomorrow.

Provide what you can; what you are able to.

Be well,

          John

 

beaumontdave

My wife and I didn't talk

My wife and I didn't talk much about our fears, both having cancer, because we knew it was there, we knew what the other was dealing with. It felt better to hug and hold and talk about the normal stuff, things we'd do after the appoinments. Talking about it here, seems a little more detached, sharing with those who understand, but aren't in the moment, feeling that same,intense emotion. When I'm really feeling it, I don't want to verbalize it, maybe it's a guy thing, I don't know. I hope they figure out he's discomfort, pain that doesn't stop, to me, is a much tough battle than fear. Both are thieves, stealing precious time from us, so I give in to them as little as possible..................................Dave

Trubrit

I'm not going to read any further

but answer the one question 'did any of you have pain over a month after treatment?'  and tell you yes, yes I did. Radiation was one of the worst and most painful things I have ever gone through, and darn it, I've been through allot. I think my pain lasted a good two month, getting a little easier each week. And the feeling of a lump in the rectum, yes, I had that too. It felt like a golf ball; and it made me worry myself sick (well, not really sick, but I did worry).

This is my experience, and if it helps to ease your mind, good; but of course, your needs to address these issues with his Radiation Oncologist and Oncologist, just in case. This forum is a wonderful place, and I am sad you have found yourself here, but happy you've found us because we are a great bunch of people, survivors and caregivers. 

Now I am goingt back to finish your post. 

Sue - Trubirt

Trubrit

John23 said:

Care-giving….

Care-giving….

I’m the one with cancer. But I have been a care-giver for my wife on a few occasions….

When she had a cerebral aneurysm rupture and required open surgery, I was there for her. I had to make the decision to operate, and I was there nearly 20 hrs per day/night post-op and recovery. There were times that she didn’t feel she would make it, but I did my best to give her confidence that she would pull through. It was a long recovery and therapy, and her fears of losing part of who she was due to the brain injury was her biggest fear. I was there to assure her that I would always be there, and that she would recovery as much as she wanted to recover, in time…. She did recover fully, with minor losses that mean little, and others that only I can discern.

When she was in a major head-on collision as a passenger in her brother’s vehicle, I was there at her side as soon as I had been notified. I slept in her hospital room, just as I had during her aneurysm. She worried that she might never recover, but I did whatever I could to give her confidence that all would eventually be well. It took a long time to recover from her injuries, but she did. I was there rooting for her all the way.

That’s what care giving is all about. You are there to provide support. You make sure that the injured knows that you take it as seriously as they do. You listen to their fears, but do your best not to show your own fears, and instead encourage them to look ahead; to keep their eye on the horizon, regardless how foggy the conditions are. You offer support in their hopes, and provide some hope showing your own faith that they will be OK.

You shouldn’t show any indication that you fear they may lose their battle with recovery, but you shouldn’t indicate in any manner that you take light of their situation either. It’s a fine balance of letting them know you accept the possible worst case scenario, but have the faith that they will not be faced with the worst case scenario. You have to provide support for their inner hopes for survival.

And it isn’t the easiest thing to do.

As a stage four colon cancer victim since 2006, I spent years of worrying about a recurrence. And now I’m facing it. I’m facing it big time. I find it very difficult to be optimistic considering the magnitude of the surgery needed. The odds of survival are like winning the McDonalds Monopoly game. I’d have a better chance at getting hot French fries.(impossible)

My wife says very little about it all. I often feel that she is in denial, not wanting to fully comprehend the seriousness. Or possibly she has so much fear she rather not reflect what she fears. We’ve been married since 1963; rarely apart. It’s hard to think of all that ending; of being apart…. Of dying.

Provide as much support as you can, and in the ways that your partner needs. Don’t be afraid to give as much of yourself as you feel you can, and don’t do what so many others do, and pull away.

It’s a normal reaction to want to run from what hurts, but the pain of having done so may hurt worse in the end.

Love today for today; forget the ills of yesterday, and do your best to look for a better day tomorrow.

Provide what you can; what you are able to.

Be well,

          John

 

You nailed it, John. You always do

 It’s a fine balance of letting them know you accept the possible worst case scenario, but have the faith that they will not be faced with the worst case scenario. You have to provide support for their inner hopes for survival.

I would get terribly frustrated, upset, when my husband and kids would just seem to brush off my feelings. 'Oh mum, you're not going to die' would be their answer, when my fear of dying was expressed. Sure, I didn't want them to say 'It doesn't matter if you die, Mum' or the like. To be honest, I didn't and still don't exactly know what I want from them, but I think you've just given me the answer. 

Sue 

Sharronoffaith

Compassion and joy

Hi Lyshala,

I really hope your husband does well with his scans and treatment, and I wish you all the best.  I wanted to respond to your post, as I just really felt the love that you have for your husband pouring out in your writing.  it is normal to feel how you do, and it is hard to know what to say, but I think that is where you let your heart take the lead.  I know some days (I am the cancer patient) where I just would love to have a nice hot cup of coffee and a sugar cookie (an occasionak guilty pleasure) and just sit and not talk about cancer, but to be in the presence of loved ones.  So, I think balance is key.

As much as possible, try to think of a typical day for you both together before the cancer.  Did you go to movies, dinners, or just maybe sit cuddling on the couch.  See, if you include a lot of the fun things, the things you love to do together, it might be easier for your husband to open up more with his feelings and fears.  And then you can share your concerns. Also, take some time for yourself.  Take a walk, do things you find soothing.  I think it is hard for patients to discuss fears with loved ones as we are afraid sometimes, and we don't want to worry the people we love.  And, it is hard as sometimes those "what if" and worrying thoughts tend to take on a life of their own.  If I had a concern in the past, I would find myself online researching it to the extreme (looking at one or two articles may help) and now, instead, I may ask a question or share here, and then I write my concern down and put it away as much as possible, and plan to discuss with the next doctor visit.  I used to research things too much, and now, instead, I jot the concern down, and I joke to myself that I am underqualified...this is way above my paygrade,,,and the doctors are there for you, and it may even help to ask your husband if he has questions for the next visit, and then you can share with him your concerns.  

 

As far as pain, I had radiation treatment that ended the end of november, and I still experience some moderate pain at times.  I asked the doctor, and they explained the radiation continues to work, and shrink the tumor.  Some days it is just a colicy pain, other days, i feel like my butt is on fire in there.  The "on fire" stuff has lessened over the past couple weeks.  Another good indicator for me is movements.  It sounds like some fiber, and extra fluids may help.  And, if he is on pain meds, that can cause some constipation.   And, for me, if I am constipated i find it adds to the pain.  But, I am encouraged with what is going on since i was told the radiation still works.  Also, if BM size is good, and you are helped by fluids/fiber, I would rest easy for a while.  Hit the couch, snuggle, have a coffee for me.

 

Best of luck, many well wishes,

sharron

 

 

 

UncleBuddy

Hi!

I am a caregiver for my brother who has stage 4 rectal cancer with mets to the liver and lungs. My brother is intellectually disabled and as much as the doctor has explained to him that his cancer is treatable, not curable, my brother is forever the optimist. He believes he can beat this and live to be 100. He faces one challenge after another but fights each and every time. I am more of a realist. I look at the facts and make decisions from there. I know my brother needs me there to take him to his dr appointments and to be there to cheer him up during his chemo infusions. He loves his nieces and nephews and enjoys seeing pics of their babies, my grandchildren, so I bring the latest videos and pics for him to see. One thing I won't do is burst his bubble of hope. He needs me to be there to listen. I am very scared to know that he probably won't be around too much longer. He is going on 5 years with cancer, 4 with mets. I come here to vent or I vent to my friends about my fears, never with my brother. He has enough to deal with. I think I'd do the same if it were my husband. I think you have to meet his physical and emotional needs, but you also need to take care of yourself or you won't be any good to him. Talk with friends or family about your feelings. You need to let it out. It can be stressful on caretakers, so make sure you're getting your own check-ups and taking care of your own health.

Vent all you want here because there are many of us dealing with similar situations. Every perosn is different, but if you're there for him, listen to him and offer your support, I think that's the best you can do. As others have said, don't minimize his fears, but also don't feed into it to make it worse. Just tell him you'll always be there for him. Good luck.

 

Lin