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Out of energy

dkatz
Posts: 27
Joined: Oct 2013

My brother had the transplant in June. He's 61, single. He had Mantle cell lymphoma. It's now November and he's on the phone crying that he has no energy to make food for himself. He's very depressed and lonely. I see him once a week or more and talk to him 3-4 times a day. He feels better after but he returns to a profoundly negative bend. I know the loss of energy is part of the chemo as is the emotional aspect. He sees no ight at the end of the tunnel. takes no suggestions of what to eat. He told me this morning he feels like doing nothing. And he's crying. I told him to do what he can do. Easy for me to say. I feel lousy about it; can't do more for him.

Ailidh
Posts: 52
Joined: Aug 2013

I'm sorry your brother is feeling so bad. I was the same when my treatment finished in mid July and am only just beginning to come out of it - I even feel quite nervous just typing that, like I'm tempting fate in some way.

One thing I found really helpful was that the hospital chaplain suggested I make a weekly timetable for myself, and plan into each hour of each day something to do; either something pleasurable or something that needed to be done - sometimes the sense of achievement, even a small achievement, can have a very positive effect. The first one I drew up I sat and cried - there were so many hours in the day to fill. The second one I drew up I cried even more - I couldn't believe that I wasn't going to feel better quickly. After that, it got a little easier but I drew up and stuck to 13 timetables before I dared let them go. It helped, because it gave structure to my day, and when we're depressed the day can seem very big and wide and shapeless.

"Eat lunch" was something I programmed into the timetable. Somehow it was easier to obey an instruction that I'd already timetabled myself to do. I ate quite a lot of toast and canned soup for a while, it was easy.

Is he still being seen by the hospital? Does the hospital have a psychology service he can access? I'm seeing an oncology psychologist, it's just a talking therapy, she doesn't offer any suggestions at all as to how to counter any bad feelings but it does help to know that there is somebody who has hold of the string at the end of my balloon.

Give my best to your brother. He's lucky to have you.

dkatz
Posts: 27
Joined: Oct 2013

Thanks for responding so quicky. I think he needs to talk to a professional. I didn't even know there was a subspecialty called oncolgy psychologist. I go for help for other issues and I know there are no answers to every dilemma but it feels good to unload. I will pass it on to my brother. Your strategies make sense and I think to some extent he tries. But now, he's at the point where he thinks he's going backwards. He has spoken to hsi doctor about it and he says they tell him 'it could get worse or it could get better'. No one knows. He's in a tight circle. Too tired to make anything to eat and if he doesn't eat properly he'll never have enough energy. He hates everything that is remotely edible. Too heavy, too doughy, too greasy. No flavor, too spicy and on and on. . He really needs to get on board and start typing but he refuses to get internet in his apartment preferring to go to the library. But her has no energy to go to the library.  And around and around we go. Thanks for listening.

illead's picture
illead
Posts: 561
Joined: Aug 2012

I can imagine how you must feel, not being able to encourage your brother for a very long period.  I am no authority, but it sounds to me like it is all depression.  What lack of energy he has could be totally doable with the right attitude.  Has he told his doctor?  Perhaps he needs a little medicinal help.  To deal with MCL and an SCT transplant, which probably all happened in a short amt of time, is a lot to deal with.  Being 61 and single no doubt factors in also.  My husband Bill also has MCL.  He did not have an SCT but will be in remission 2 yrs in Feb.  Another thing that probably did not help was the ominous prognosis of MCL.  We are very hopeful and so is Bill's doctor that the prognosis is not the same as it was a few years ago.  They have made many inroads and done lots of research and know a lot more about MCL, so your brother has a lot to be optimistic about.  He just needs to get the "connections" back into balance, it seems.  If you can talk him into joining the forum here, there are many supportive people and it would give him something to look forward too.  He doesn't even have to join, he can just read if he wants to.  You are a good sibling and I know this is hard on you.  Continue doing what you can but also do not put yourself on a guilt trip.  You can only do what you can do.  You need to take care of yourself and your family too. 

My very best to you, Becky

dkatz
Posts: 27
Joined: Oct 2013

Yes.. He has a history of depression (never been treated for it and hates/fears any medication) but the effects of the chemo and the whole experience is making his inclination towards depression that much worse. I sent him the link and I hope he joins. He told me he'd rather talk to someone on the phone but the world doesn't work like that anymore and we have to make lemonade when lemons are available. Thanks for your kind words. My magic wand doesn't work anymore (I think it needs batteries) so the best I could think of is to try and refocus his little world into the big picture. Thanks for listening and responding,

jimwins's picture
jimwins
Posts: 2077
Joined: Aug 2011

Welcome to the site and I'm sorry to hear about your brother.  I agree with the advice given by the others.  Other things to consider is someone coming to his residence to help out for awhile.  i know during my treatment, I received several calls from my insurance company checking to see if I was able to take care of myself regarding meals, housework, bathing/dressing, etc.  Fortunately, even though I was very tired, I was able to take care of myself.  I also spent time with family for some meals, etc.  

You might check with a social worker where he was treated to see what is available to help him out.  Is there anything he finds to his liking to eat currently?  A side effect of treatment can be (usually temporary) a change in taste that can make it difficult to eat what you once enjoyed.  Hopefully he will be able to eat more soon.

He is welcome to come here as well.  If he doesn't have Interent at his apartment, maybe he can "borrow" wireless from a neighbor if it's available and try it out for awhile.  Please tell him he is not alone and will find friends here.  We're not professional medical or psychology folks but we have walked in his shoes.  

Other things, what does he enjoy or makes him laugh?  Sometimes just a little bit of laughter can help so much - that's why I can be such a clown here sometimes.

Oh, don't they make those little blue pills for magic wands? Innocent  Be good to yourself.

Hugs and hang in there.

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1198
Joined: May 2012

Dkatz,

Jim has probably given the best advice available to you: Your borther's treatment center should have a social worker of some sort who can give him referrals for depression and well-being.  You do not mention how close you live to where he is, but if you are nearby and can get him out, even to walk the mall or whatever, it may assist in jump-startiung his emotions.  I was run over by a car 26 yerars ago, and could not walk for a long time.   When a relative would take me and my wheelchair to the mall or church, it did me a great deal of emotional good.

I never required SCT, but I know the chemo prior to the transplant is often given in megadoses, and that the overall process can be extremely rough.  He is depressed, but his weakness may be partially physiological -- due to the trauma his body has suffered through. Healing from that can take a long time.  His sense of taste may not be working properly, but that will return to normal over time.

As was mentioned by someone, take care of yourself, and realize that doing what you can is all you can do.

max

dkatz
Posts: 27
Joined: Oct 2013

Thanks, Max. He is so far under that I can't get close. I read an article on line that described his emotional state to the tee and it all relates to the 'carpet bombing' he sustained in Sloane Kettering. I know it and he knows it but he is completely focused on his lack of appetite and lack of energy and his response at this point is to become angry and withdrawn. I believe that he believes that he will never get better. Every survivor tells a different tale which is why I joined this discussion. Thanks for responding.

dkatz
Posts: 27
Joined: Oct 2013

Hey Jim.. Thanks a million for your words. My brother is deeply depressed. He tells me over and over that he is lonely but he doesn't want anyone to come into his apartment. 'To do what..?'  'I can clean'.  I asked him if I could stop by on Saturday and he asked me not to. He talks over and over about having no apetite and eating nothing. He wants to lay in bed and do nothing but pushes himself to go out. For example, he goes to the library and looks at the internet but it's 'pointless'. He cannot figure put how to log on to this site.. or he can't get on for one reason or another. I offered to try and help. I'm no better at tech than he is but 2 heads are better than one. I mean..  I'm on. But even if he were on.. he doesn't have the energy to type. He wants to talk to someone not type. He hates TV. HE hates the radio. He can't focus on a book or a magazine artcile. He has no friends and his neighbors ignore him if he ever sees any. He argues in circles. He is too tired to make food and hates the food offered in the local diner. The diner that may be OK is too far (5 mile drive but he has to take a congested highway) and even if he bought something there, he would throw it out anyway. He can't eat meat. He can't eat anything heavy. He hates the drink supplements. He has no happiness in his life. He talks about all the corruption in the world and how he got the short end of the stick.

He's a tough one.  I've suggested all the things you mentioned and more which makes me feel a little better but everything is 'no'.. 'there's no point', etc. I can't get angry with him. I just keep at it. 

He said his doc's nurse told him last week that he could feel lousy for 6 months or forever. It's been 4 months since the transplant. It could get better suddenly or never. He had been better and then slid back and he feels there is no light at the end of the tunnel and being the person that my brother is.. he crawls into his hole and blocks out the world. He thinks he's the only person who is going through this nightmare but at the same time told ne he doesn't care about anyone else's problems. He just wants someone to help him and make it all better.

I have 2 kids with Cystic Fibrosis and a wife who stopped talking to me 2 years ago and that's my corner on hell. So, I can only help my brother so much; I can't make it all better if he's not willing to seek out help for himself.

I'm hanging in there with him.. but it's a tough go. That's why I'm glad you commented. Got it off my chest, anyway and the PS is.. I've been in therapy for years and it does help a lot.  Whew.. off the soapbox! Have a good day!

Rocquie's picture
Rocquie
Posts: 515
Joined: Mar 2013

dkatz, I am sorry that your brother is so depressed after his lymphoma treatment. IT IS HARD. I respect you for trying to comfort him despite dealing with your own troubles.

Would he accept a kitten? They are easier to care for than a puppy, yet playful and full of antics that might just make him smile. Pets are known to have so many therapeutic advantages.

Is he warm enough in his home (or cool enough)? Does he have enough light? Darkness is depressing. He may need a full spectrum light source. Does he have a blender? Taking some beautiful fruits and making them into smoothies may taste delicious to him. Lighting a beautifully scented lavender candle can be relaxing and soothing to stare at.

Maybe you 2 need a night out on the town for you both to look forward to, once a month or so? A movie or sporting event, out to a fun restaurant?

Bless you both.

Rocquie

 

dkatz
Posts: 27
Joined: Oct 2013

Rocquie: Funny you should ask about accepting a kitten. In my house, we have 10 cats a dog and a few reptiles. My daughter found 3 baby kittens in August and we bottle fed them. We gave away 2 and still have Casper. I would love to hand him over but my brother may be allergic to animals. (He was when he was younger). I don't think he would want to deal with litter or cleaning up or anything else that's involved. You know.. you open a closet and the cat runs right in. All of a sudden, something falls on the floor and the cat's sitting their with a 'wut?' look on his face. I have to say.. my cats are often the only thing in my house that makes me laugh. They are all in it for themselves and live for the moment. Lessons for us. He has a blender but won't use it. Would rather eat ice cream. I thought he could add other things to ice cream like you mentioned but he's not interested. His apartment is nice and bright, faces front. Nice neighborhood but it's very quiet. For me.. it's great but I don't live there. Thanks for your thoughts.

jimwins's picture
jimwins
Posts: 2077
Joined: Aug 2011

I'm glad you were able to vent a little.  That is one of the things we're here for.  You definitely have a plate full and I'm sorry about your little "corner of hell".  I guess we all have one of those corners at some point in our lives :).  I have issues with mild depression and all the "normal" stuff that goes along with being a cancer survivor.  I try hard to be positive but sometimes you have to experience the "downs" to appreciate the good things so I don't beat myself up for having those gloomy times as it is temporary.  I can laugh (especially at myself) and humor has helped me through all of this. 

I think the fact your brother pushes himself to get out is good.  You said therapy/counselling has helped you.  Has he considered this?

I found a website that offers telephone support but cannot vouch for it's quality, etc.  It's titled the "Cancer Support Community".

I don't know if this will help but worth a shot I suppose.

http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Cancer-Support-Helpline.html

Below is a paste from the site:

  Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns: 

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others 
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program 
  • Live web chat available during call center hours
dkatz
Posts: 27
Joined: Oct 2013

Thanks, Jim. He's not interested in therapy because he would have to go somewhere and he doesn't trust therapists per se. I'll pass it on the phone support to him. Much appreciate the suggestion.

NANCYL1
Posts: 259
Joined: Jun 2012

Dkatz:

I have had some issues with moderate depression off and on.   Loss of energy is of course a symptom of depression and is bad enough in itself.  But coupled with the Chemo effects your brother had must be very hard to fight.  Wanting to stay in bed, not go out,  not speak to people, etc., that's depression.   Therapy would help I think with a psychologist, perhaps, who is used to working with people who have walked in your brother's shoes.

 

I have B Cell Lymphoma and have been having a series of Rituxan infusions, which are less powerful than most Chemo, apparently.  But there have been some side effects:  Loss of appetite, some nausea, tiredness, depression, anxiety.  Tiredness makes depression worse.  

 

Coffee helps my mood, but too much is not good on the "gut."

 

My husband and I are isolated at the moment,  which is not good at all.    Seeing others, perhaps in a support group, might help your brother.  And, as I mentioned, a therapist.  At the moment, I see a therapist, and also take a Lexapro generic. 

 

Many libraries in my area offer training on the computer.   Some computers have "Voice Recognition," so that you can talk and the computer types.   I have found that when depressed, getting on the internet and getting the mind off other stuff, seems to remove depression.  There are political boards, if your brother is so inclined, where he could zap a few folks and perhaps feel better.    Also, there is light therapy, where you sit next to a special lamp.  This helps some people.  The lamps are really made for those who get a winter depression, but also can help others.   Should check with someone who can give good advice about the lamps and how long you can sit under them, which is quite a short period of time.

 

I have a magazine, which I got at the cancer center, called, "Eating Hints, Before, During and After Cancer Treatment."  It is 68 pages  long.  I think it is free from Cancer.gov or 1-800-422-6237.  (National Cancer Institute)

 

Nancy

dkatz
Posts: 27
Joined: Oct 2013

Nancy.. thanks for your thoughts. My brother is adverse to drugs (ironic considering..) and doesn't have any desire to travel to a therapist and wil not consider a group session because he really doesn't care about anyones else's problems. He told me there is very limited help in his library. He knows how to log on but he's having trouble getting onto this site. I suggested he go to Staples and ask someone there to help him. Not going to do it. No energy to go. I thought message would be nice but he won't do that. I like the idea of the lamp. I will pass that on and the phone number for the magazine. I was looking for somthing like that as well because I'm out of ideas what to suggest. My heart goes out to you for your stuggles and I wish you well. Thanks for reaching out.

NANCYL1
Posts: 259
Joined: Jun 2012

Dkatz:

 

A couple of other thoughts:

 

I have read about people using SKYPE online, to communicate, not only with friends and family, but also doctors.

 

I think some of us have had trouble  at times logging on this Board and other problems with the Board.  You can contact the people responsible.

 

I hope you and your brother find peace.

 

Nancy

dkatz
Posts: 27
Joined: Oct 2013

Thanks, Nancy. Good suggestion but my brother does not want to bring the internet into his apartment. His thinking is that if it's in his apartment, then he has less motiviation to go to the library or Panera's; i.e.; get out of the house. I think that's a good thing except that he's limiting himself. If the weather turns bad or it's after hours, he's cut off. I thought he should go to Staples where he bought his laptop and ask one of the younger crowd to help him out. We both grew up when home computers was science fiction so I can't help all that much. I'm not ashamed to ask for help. He was negative about going to the store; too tired or both, so I don't think it's going to happen. He is very adverse to anything to do with the computer and would prefer real faces in a group setting. But, in his neighborhood, at least, that's not going to happen. Best to you!!

illead's picture
illead
Posts: 561
Joined: Aug 2012

Your post of Nov 8 to Nancy said that your brother would not accept a group setting now your last post says that  a group setting is the only thing he will consider.  I don't know how we can be of much help here.  It seems like we are kind of useless......just my thoughts.

dkatz
Posts: 27
Joined: Oct 2013

I agree that there is little you or I can do. I call it circular reasoning.  He 'wants' to do 'something' but finds reasons a particuar suggestion like logging on to this site is not practical as are the suggestions that have been made by peoiple who are or have gone through what he has.  Then he was not able to get on to the site and then it's no good anyway so why bother.. but he wants to.. but whatever anyone says is useless to him and no one understands because he's single and has no friends, no one responds to him on Facebook and around and around we go.  End result is that he doesn't do anything about relieving his stress or anger. He goes to Panera for coffee and then the library and complains bitterly about 'doing nothing' and having 'no purpose'. He talks about not having much time left over and over like there is a big clock ticking away his last minutes on earth. He's needy and self absorbed. He believes no one cares or understands him. Like he is the only one. But, he told me he really doesn't care about anyone else's problems because 'they have families and friends' and he doesn't. His comfort zone is feeling depressed and angry while at the same time he somehow gets through each day. I am there for him and he knows it although I think he is also jealous that I am not sick. He said yesterday that he dosesn't care anymore about anything because he can't do what he wants. What he wants to do is get up and have plenty of vim and vigor soo he can find a job but he doesn't have vim and vigor and will not have it for some time to come if ever. We don't know for sure. But, around and around we go. I'm just venting.. there really is no solution. I thank you for listening as a part of the community, value what you and the others have said. Wish you the best!

illead's picture
illead
Posts: 561
Joined: Aug 2012

Sorry for my frustration in my last post.  If I am getting frustrated at your brother, I can imagine how much you are.  I wonder if there is someone of a professional nature that you can talk to.  I think you need to be reassured about limitations you need to make and not to be on a guilt trip about it.  We are not professionals though, so what seems sensible to any of us may not be the right counsel.  Maybe you can start with your brother's doctor or one of his nurses, they might start you in the right direction.  Please don't leave us though and you can vent anytime.  I think I can speak for all of us in saying that we understand your frustration and need to talk.  We have all been trying to help your brother, but you are the one who needs support.  Hang in there, Becky 

Rocquie's picture
Rocquie
Posts: 515
Joined: Mar 2013

Well said, Becky. I completely agree.

Rocquie

 

dkatz
Posts: 27
Joined: Oct 2013

Becky.. thanks for the words of encouragement. I have been in therapy since 2008 for other issues but this has crept in as well. It helps a lot. Even though my therapist offers no magic answers, it helps me focus on what is nice and what is necessary. I always take the time before a session to walk around a small lake that's near his office and think about what I want to say in the 50 minutes I have. If my brother could do that without thinking in terms of expecting answers or arguing I think it would do a world of good. But, alas.. not going to happen. So.. I will not leave the site and I will continue to post my frustrations and hopefully victories. One of these days, I will start going through the other posts and see what else is going on out there besides my tale of woe. I'm hangin in.  I think Ben Franklin said.. 'either we hang together or we'll hang seperately'.

Ailidh
Posts: 52
Joined: Aug 2013

I'm impressed that you are trying so hard with your brother when you have so much stuff going on yourself. FWIW, I'm pretty sure your brother appreciates it, even if it doesn't seem like it.

You know I said in my post that I felt I was tempting fate to say I was coming out of it? Wow!! Shortly afterwards I began a downward slide. So I've been texting my brother today, begging him just to text me "How are you?" once a day, just so's I don't feel forgotten. I won't hijack your thread with my rant about loneliness etc.... but depression - or low mood as my psychologist persists in saying it is, not depression - is both a lonely and an alienating condition. Everyone but everyone is annoying the hell out of me at the minute - but I desperately want people to keep in touch too. Weird, and a lot for people to cope with. Want to hear something ironic? One of the people I've heard most from recently is my ex, the one who walked out in July after putting up with the depression for a princely 4 days....... Hey, it almost makes Me laugh, that's no mean feat at the moment.

I'm glad you can unload here a bit, you are doing everything you possibly can for your brother, and I admire you very much.

NANCYL1
Posts: 259
Joined: Jun 2012

DKATZ AND AILIDH:

 

Aiidh, you have given me an idea.  Good idea:  ask your brother to text you once a day and say, "How are you." 

Dkatz:  Ask your brother for moral support for a change.  Don't always be the strong guy.

I also have a brother who does email, usually one-liners with a photo, or article,  etc.  He calls once a month.   We usually have a good long converation, but I am not getting the backup that I need from my brother.

I say let all three brothers try to mentally walk in our shoes more often and check in with us PREFERABLY on the telephone, which is much more personal than texting.  Ugh.   And is more personal than emailing.

I think of kids these days texting and not talking on the phone much and wonder whether we will ever have any great writers in the future.  How about Shakespeare and  "2  B   OR  NT  2   B,  THT   S   TH   QSTN?"

Nancy

dkatz
Posts: 27
Joined: Oct 2013

Nancy: I actually do talk to my brother about some of the crap that is going on at home but I limit it. He likes the feeling that it's a 2 way street but never having been married / no kids.. it's a tale of 2 cities. He tells me I'm very strong but I think he's the one who's strong. I didn't spend a month in a hospital room with 6 tubes attached to my neck; etc, etc.

NANCYL1
Posts: 259
Joined: Jun 2012

DKATZ AND AILIDH:

 

Aiidh, you have given me an idea.  Good idea:  ask your brother to text you once a day and say, "How are you." 

Dkatz:  Ask your brother for moral support for a change.  Don't always be the strong guy.

I also have a brother who does email, usually one-liners with a photo, or article,  etc.  He calls once a month.   We usually have a good long converation, but I am not getting the backup that I need from my brother.

I say let all three brothers try to mentally walk in our shoes more often and check in with us PREFERABLY on the telephone, which is much more personal than texting.  Ugh.   And is more personal than emailing.

I think of kids these days texting and not talking on the phone much and wonder whether we will ever have any great writers in the future.  How about Shakespeare and  "2  B   OR  NT  2   B,  THT   S   TH   QSTN?"

Nancy

dkatz
Posts: 27
Joined: Oct 2013

AILIDH: Your husband walked out.. that's horrible. I cannot even imagine contemplating something like that. I have been through so much stuff with my wife and kids and it never occurred to exit. But, that's me. I have to think that what my brother is going through could happen to me. My dad died of a blood cancer and my mom (who turned 90 in April) is a 4 time survivor starting back in 1976. Her mother died of breast cancer. My father's mother probably died of cancer. The chances are that I will get it too. So.. I keep thinking of what it would be like if it was me. The only thing I have to keep reminding myself is not to go too far with the empathy. We were not that close as kids.. then we shared an apartment when we started working and after I got married, drifted apart. My mom hung on a while longer but was also out of the picture for about 10 years.Most of that drift was my wife's doing. A long story. But..we were never angry with each other. I reconnected with both about a year before my brother was diagnosed. At this point, I resolved never to turn my back on either again. So.. I call, text and visit very often. But, like I said, I have to put a border around it and move on to other things as my day unfolds. Most recently,he has moved up a notch from exhausted to tired. I'll buy that! Wish you well. keep up the dialogue!

dkatz
Posts: 27
Joined: Oct 2013

My brother made it to another Thansgiving but true to form he says he has nothing to be thankful for. About 10 days ago, he started to feel a little better meaning his energy level had gone from non-existant to one notch better. He managed to spend an entire day at the hospital the other day and, although he was tired, he said it was not so bad. But..today.. he promised to spend time at mom's but informed me over the phone that he's not going to eat anything because he can't digest chicken and he hates turkey. He'll watch mom eat and then leave. For various reasons, I can't spend Thanksgiving with mom and my brother although I saw mom yesterday and will see both tomorrow. But.. he's back to his comfort zone of feeling depressed  and spreading the joy (as it were)even though he admitted feeling less lousy. He has to go for a kidney biopsy in about 10 days and that's what he's thinking about. A small growth was spotted on one of his kidneys about 6 months ago and was scanned 2 or 3 times; no change in size. So.. in my mind, if there was any doubt, they would have had him in months ago. It may be cancer or maybe just a cyst but there does not seem to be an emergency to cut it out. But.. he's already thinking he's going to wake up from the biopsy and be missing a kidney. Always the worst possible scenerio. In the middle of all this, he wants to work again. Sounds like a positive but then he's already thinking about where he would work and how he would get there. It would have to be close by and there would have to be parking and on and on. PS.. he still has to deal with the kidney biopsy.  Anyway.. I'm thankful for a lot. This life I'm living is not easy but I'm still here. I still have my mom and my brother, my kids and my animals. I have a job and my boss kind of likes me or at least isn't looking to pitch me. I have my health and with the backdrop of the stories on this site and my brother's trials and tribulations (my mom's and my kid's), it takes center stage. Best to all.

Ailidh
Posts: 52
Joined: Aug 2013

That your brother could even admit to feeling a bit better or at least a bit less awful is HUGE. It really is a hint of a glimmer of a spark of a light at the end of a very long tunnel. I'm sure your standing by him has played a big part in this, even if he doesn't recognize it or thank you for it.

 

If you can - and you have enough on your plate in all conscience but if you can - try not to be too mad at him for still spreading gloom, even although he feels a tiny bit better. My GP doctor hit the nail on the head a couple of weeks ago when she spoke about "daring to be better". Admitting to feeling even a tad better within depression is really scary because as soon as you admit it you think "What if it doesn't last?" Plus, as soon as you actually TELL people you're feeling a bit better, they're so relieved that they assume that you're 100% better and stop asking how you are, start having expectations of you that you can't meet and Argh...... In my limited experience, you've got to have quite a few "feeling a bit betters" followed by "here we go again"s before you can begin to see that there is a pattern of recovery, and that what goes down does come back up again.

 

with prayers and admiration,

A.

illead's picture
illead
Posts: 561
Joined: Aug 2012

I think you just got excellent info from Ailidh.  It was encouraging to me.  When I first read your post, I thought it was more negative but after A's post, it makes so much more sense.  I know you are dealing with a very difficult problem though and very few of us can even relate.  I do hope that A's post was a positive one for you.  You seem to have a lot on your personal plate too but you try very hard to look at the positive side, please know that it does not go unnoticed.  We all care and are happy that you can vent here, just not happy that you have to. 

 

Ailidh, I, and I am sure the others are very proud of the progress you have made.  I say proud because I know it has and still is taking a lot of work to even take small steps.  Just the fact that you are helping others says volumes.  A bigSmileto you.

Hang in there both of you, thinking of you, Becky

Ailidh
Posts: 52
Joined: Aug 2013

Thankyou, Becky, that means a lot....

dkatz
Posts: 27
Joined: Oct 2013

Roller coaster continues.. but for now in the upswing. My brother went for his pre-op on Monday. The day before he was so far down that he didn't want to see me. Forgive me, but I just showed up at his apartment anyway and spent some time with him. But he rallied the next day and as I pointed out and he somewhat concurred.. about a week after doing his Retuxin, he starts sliding down. I brought out the pattern. If he knows it's going to be better after a little while.. hang on to that. He seemed to take heart. Today, he signed up to volunteer at a library starting in January. He calls me and after a while, I said.. so this is all good. But.. true to form.. he replies.. 'I feel bad'.  That's his comfort zone and if that floats his boat. But.. at least he feels he has something to look forward to after the biopsy next week. Best to all.. and thanks so much for your thoughts and prayers. It makes my day to throw the message in the bottle intot he surf and have it come back.

NANCYL1
Posts: 259
Joined: Jun 2012

DKatz:

You showed up at his home anyway.  Good.  Believe me it is sometimes very hard to drag yourself out of depression, get yourself to do ANTHING!  I know that.  I hope your brother goes to the volunteer job at the library in January.   Once he starts speaking to others, I bet it will help him.

Here is a "for instance" for you.  I have been doing very well physically and mentally with the Rituxan infusions for B Cell Lymphoma.  Got some news from my cardiologist that I would need cardiac surgery in the near future, after I finish the infusions.  My morale has been going down after that news.   Today it was very, very hard for me to walk into the cancer center, but I did it.  This is, of course, not like volunteer work, but it has to do with seeing and talking to other people.  Once that happened, I felt better, not from medical talk but just plain, old-fashioned communication.  (My husband and I do not have much backup from my family.)

Nancy

Ailidh
Posts: 52
Joined: Aug 2013

Dang, I wish the whole thread came up so I could remember the names of people I'm talking to. Not chemo brain, my always brain!

 

dkatz, you did a fantastic thing in going round anyway! and that your brother has volunteered - even if he doesn't manage to go - is a big step forward.

 

Nancy, sorry to hear about your impending surgery. It always seems unfair to me that not only are we struggling with cancer and it's after effects but that doesn't stop us having other things go wrong too. I'm seeing a plastic surgeon next week about a Morel Lavallee injury to my "hip". Great good luck with your treatment!

NANCYL1
Posts: 259
Joined: Jun 2012

Ailidh:

It is unfair.  One thing at a time, I say.   I have never heard of a "Morel Lavallee" injury.   Looked it up and it sounds as if it could be dreadful.  Good luck to you when you see the plastic surgeon.

Nancy

dkatz
Posts: 27
Joined: Oct 2013

Nancy and Ailidh: I have to tell you this quick story. Both of my kids have Cystic Fibrosis which is an incurable lung disease. They are both young adults now. When my daughter was diagnosed about 20 years ago, there were no adult clinics. But..they are stable thanks to new treatments and drugs. My daughter is in love with horseback riding and she loves her 'boys'; 2 aged and lovable ponies. We own one but she takes care of both. One day last week, she wasn't feeling well. She said told me she was going to the barn in the morning. So I said..'are you sure that's a good idea?'.Without hesitation, she blurts out.. *&^% Cystic Fibrosis; I'm going to the barn.  She just plows ahead, treatments and feeling crappy and all. I hear a single-mindedness that somehow gets her to the barn, gets you guys to the hospital, gets my brother out of his apartment every day. There is something in the human spirit that is not fully explainable. None of this stuff is fair. So, as I tell my brother all the time.. keep on keeping on. As my daughter would say, &^%$ it, I'm going ... 

GKH
Posts: 321
Joined: Jul 2012

Your brother is a whiner and chronic complainer. Don't reward that behaviour by letting him get to you in such an awful way. Tell him to be strong and if he can't then go elsewhere. 

All men die but not all men live. - Thomas Jefferson

dkatz
Posts: 27
Joined: Oct 2013

GKH: My brother has always been this way. I was out of touch with him for 15 years for reasons that would fill a book but decided to get in touch with him and he and I jumped back in. He is often very difficult to deal with because he has tunnel vision. He hates making decisions but I refuse to make them for him but I will brainstorm with him. He had laproscopic surgery yesterday on one of his kidneys to remove a small mass.. he went on for days about how he was not convinced that this was needed but couldn't decide what to do. He called me from the hospital yesterday after he checked in and finally and reluctantly said he would do it. His doc called me and said the mass was contained and if it was cancer it was low grade. My brother was more interested in the fact that he hates spending the night a hospital; he hates th efood, he'l never sleep and after all.. it probably wasn't cancer and it was a waste of his time. I drove him home today in a snowstorm, got his pain meds from the drugstore and made sure he got upstairs OK. I listened to complaining and moaning for 4 hours today. I wished him well and drove home. He's not going to become a different person just as I will not make his decisions for him as he would probably like me to do just so he doesn't have to think. He's who he is and I only have one brother. The quotation was appropro but he will never use that as his mantra. Your thoughts are well taken and I appreciate the fact that you recognize the role I seem to be playing as the enabler. I have other things going on in my life, fortunately, so I can contain his attitude and go on to other things. It gets to me but I move on and I can't help thinking about what I would be like if that was me sitting alone in an apartment in total silence.

GKH
Posts: 321
Joined: Jul 2012

he is very fortunate to have you. Just don't let him takes advantage - for your sake and his. All my best to you and your brother.

dkatz
Posts: 27
Joined: Oct 2013

I'm going to meet my brother for coffee this afternoon instead of rushing home. My mom made the mistake of telling him that he looks much older than he is. She should have kept that to herself and it clearly bothered him. He's finally past the post surgical trauma from the kidney tumor and admitted the other day that maybe he did the right thing after all. He tells me every day without fail that the chemo shortened his life and who am I to say? I just keep drilling back that he's probably not going to die today and spending every minute of every day thinking about death is a huge waste of time. It's very hard for me to have that kind of conversation with him. He told me today that he was e-mailing his uncle and completely forgot how to spell a word. He thinks the chemo is affecting his mind. i told him I always get stuck on names..freeze up. So, he said maybe that's normal. Who's to say? Anyway.. to all readers.. best wishes for a happy and especially healthy New Year. Sorrows in the rear view mirror and only good things in front!

illead's picture
illead
Posts: 561
Joined: Aug 2012

At least it sounds like his steps are going forward, even if it's just a teeny bit, it's something.  Tell him that chemo did not shorten his life, it gave him life.

Hang in there Katz, Becky

dkatz
Posts: 27
Joined: Oct 2013

Thanks, Becky. He doesn't think he has much of a life. That's what he complains about daily is he has no quality of life. I keep reminding him how lucky he is not be in a hospital hooked up to tubes to which he says he will be 'shortly'. I kind of pursuaded him to get a haircut today.. first since before the transplant 6 months ago. He said he's bald on top and I told him he's been like that for years. Why not shave it off?  Hates looking at himself. Classic depression. He wanted to come into the city today to meet for lunch but his energy dropped and he stayed in his neighborhood. I told him it was too cold anyway but he was disappointed. He lost feeling in his feet since the chemo and the docs are saying it's nerve damage and may or may not come back. i had nerve damage twice in my neck that made my fingers numb and it took 9 months to come back so I know it's a slow process. i called a local acupuncture group which seemed to have a lot of positive reviews just to see if they could help him. The woman there knew what I was talking about and said sometimes the treatments work to a degree and sometimes not. I guess my thinking is that if it helps by 50% then that's better than 0% and what is the downside? My brother said he would call (after the spiel about how hard it is to park in that area). See what they say. I hope to have coffee with him on Sunday morning in the supermarket and we go on. Have a good weekend!  Thanks for listening!

dkatz
Posts: 27
Joined: Oct 2013

So, on the spur of the moment I called an acupuncturist to see if they could help my brother with his chemo-induced neuropathy in his feet. The person I spoke to knew exactly what I was talking about. I spoke with my brother thereafter and suggested he call and see if this is something he wants to explore. So he calls and makes an appointment and then tells me that parking near this place is virtually non-existant. So, why make the appointment? So, he finds another place presumably with parking and goes. He just phoned me to say the accupunturist told him he looks sick and is probably dehydrated. His skin color is off. Has no idea if treatments will help him. Well, that's all my brother had to hear and he's back to dying again. He knows he's going to die. He knows the doc has no idea what he's doing. Even when they told him his blood counts are within the norm he knows they are off. Nobody cares about him and on and on. He'd rather not see me tomorrow. Maybe he'll call the hospital again but they're not doing anything for him anyway. His doc never talks to him and what's the point in changing doctors; they have no idea what they're doing anyway. Very nice but phoney and they just administer powerful drugs and go to lunch. So, what's the point because the end is near anyway. And he can't volunteer and he can't walk and he had nothing to eat yesterday and it goes on and on and on. Just venting, that's all. I can't say that he's making all this up. But the depression and the negativity.. boy oh boy. Everything is 'no' and 'no good'. A man who he never met before in his life who is licensed to put needles in the skin to activate the spirits in the body is apparently more knowlegable that doctors at Sloane Kettering who have been following him for 9 months. I'm just shaking my head..

dkatz
Posts: 27
Joined: Oct 2013

Well. the treatment with the acupuncturist seems to have had a temporary effect on the numbness and I think he may go back for a few more visits. He said the acupuncturist said that sometimes treatments work and sometimes not which is at least honest. After the treatment, he called the hospital and the nurse (again) told him he has to drink a lot of water. He's been told this before but my brother believes it's not normal to have to drink so much and it makes him urinate a lot. Fact is it's not normal to sustain the trauma caused by chemo. So, he's been inconsistant about hydrating himself. But.. he promised to drink more water and hopefully he'll stick to it. I told him that he told me that he's been told several times that dehydration can cause lethargy and even depression.The nurse (again) recommended he talk to a psych and he (very reluctantly) agreed.The point I made was that there could be a slight imbalance in brain chemistry and if nothing else, it may be good to talk to someone about what his fears are. He's 'not happy' about taking drugs to feel good. I told him I don't think they would just give you drugs to feel good. It's a little more involved than that. May not give him drugs at all. So.. he sort of said he would go. One small step at a time.

jimwins's picture
jimwins
Posts: 2077
Joined: Aug 2011

Thanks for the updates.  I'm glad the accupuncture seems to have helped.  That's interesting about the dehydration - I didn't know that.  Maybe I should drink more water myself ;). Hope things continue to improve!

dkatz
Posts: 27
Joined: Oct 2013

The 'improvement' didn't last too long. On New Year's Eve, I got off work early and went out to see my brother rather than run home. He was not in a good frame of mind when he met me at the train station and wanted to go back to his apartment rather than go out for something to eat. He repeated over and over again about how tired he was. 'OK'; let's go back to your apartment and we'll eat something there. His mood was very low and he mentioned that he would never get better and he should be better by now and on and on. I told him I would drive out to see him on New Year's Day and then go visit with mom. He was waffling.. 'you don't have to come'. Which means he is so sad that he wants to be alone. Next day, he agreed to have me visit. I came over before noon and suggested we go out to eat. He immediately replied with 'I'm not hungry but I'll force myself to eat'. It was a very cold day and I had to park quite a distance (maybe a quarter mile) from his apartment and I offered to get the car and pick him up at the entrance. But, he insisted on walking; hands thrust in his pocket. Baby steps and stopping telling me at every opportunity that he was too tired and this isn't normal and he's never going to get better. He finally walked nealry the whole way to the car and asked me to go the rest of the way and pick him up on the corner, which I did. I drove up and he gets into the car and he announces that he got emotional. I didn't even respond to that and just asked him which way to the local diner. We drove by 2 crowded diners and he headed to the pizza shop he likes. I parked the car on a side street and helped him out. He started crying again. The pizza shop is half way down a long block and I walked ahead. It was closed. He says, 'we can eat a muffin in my house'. Right then and there, I spot a sandwhich shop with a huge OPEN sign lit up. I check the menu and suggest the place. He says, 'it's probably closed'. Yes.. two inches from his face is a 2 foot neon OPEN sign. We go in and it's a nice relief from the cold. He settles on a grilled cheese and tomato and I ordered a roast  beef sanwhich. I suggested that he go there for a meal now and then even alone. 'Maybe'. He ate the entire sandwhich. He's not a child and I say nothing to him to encourage him; he just eats it so he must have had some appetite. We're done and I drive him back to his apartment. He 'definitely' does not want to go to mom's house. He wants to be alone. So I say my goodbyes and drive off.  That night, about 9:45 he calls me. It's rare that he calls me at night. His voice is odd. He blurts out: 'did you come over today?' 'I fell asleep in the recliner and when I woke up I couldn't remember anything'. Then the bomb: He says: 'I thought I died'. 'I don't have much longer'. 'This is no way to live'. So, I answered him calmly: 'Yes, we had lunch. We went to the sandwhich shop and you had grilled cheese and tomato and I had roast beef.' The there is a pause and he answers: 'Oh, yeah'. 'Was that today?'  'Yes.. it was today'. Then he launched into his spiel about how he's not going to make it. Forgive me but after this tirade that went on and on I told him to get into bed and wait for the end. The I felt horrible about saying that and added..'you're going to have a long wait. After some time, he said he may have had a seizure and that made sense. He suffers from a form of epilepsy that induces a mild seizure in times of stress. Last time this happened was before he was diagnosed and had an intestinal blockage. He called me up and forgot that I went with him earlier that dayu for a colonoscopy. I called 911 for him. So I asked him if he needs to go to the hospital and he said 'no'. So I said..'then either you call the hospital now or call in the morning. He said he felt better talking to me and it all came back. He apologized about 10 times which drives me nuts. I didn't sleep well that night but decided not to panic. The next morning he called me at my office and said he was sorry to have bothered me. I asked him if was planning on calling his doctor. 'Nah.. they can't help me'. So, I said OK and then I called his doctor. She's out of the country and I spoke to his nurse. She said..'your brother jsut called me but he didn't say anything about a seizure.' It seems he omitted the panic attack. So, I filled her in. She called him back and later called me back and said she was trying to work in an appointment for a psych eval the same day as his re-check with his kidney specialist. I expressed my concern that he was physically and emotionally exhausted. He is resistant to drinking enough water. I have no idea if he's taking his meds properly. I can't be with him all the time. He refuses to hire anyoen to live with him as a caregiver. Later, my brother calls me and asks me if I called the nurse and I said..'yes, I did'. I told her the whole story. 'Sue me'. I expected him to be pissed off but he wasn't. He just said OK, I appreciate it. Thanks for being there. I realized that he couldn't make a decision about what to do so he made me so crazy with concern that I made the call. Funny thing is that he called before me but instead of giving the nurse the details about his siezure and panic, he pleaded with her to tell him when he's going to feel better. He seems to have gotten it in his head that 6 months after his transplant, he would be dancing the Irish jig. It's now 6 months and there is no dancing. So, for the umpteenth time, the nurse told him (as he recounted to me) that it can take a year and he is experiencing a lot of common reactions to the chemo. As a result of all of this, he told me that he 'feels better'. 'Thanks for being there'. Then, he told me he was going out to get coffee at Panera's and go to the library to go on line and take a book out for mom. I had to get this whole story out of my system and share it.  I tell him every day that 'every day is a gift'. Every day, the balckboard is fresh and you get to write your own story. I try. He's tired and I guess so am I.

NANCYL1
Posts: 259
Joined: Jun 2012

Hello Dkatz:

I have read a number of times that Chemo can affect short-term memory on a temporary basis  Perhaps you know this.  Maybe not helpful to tell your brother.

Nancy

dkatz
Posts: 27
Joined: Oct 2013

My brother has very, very reluctantly agreed to talk to a pshyciatrist at the hospital about his depression. But.. he already knows that it's a waste of time and he doesn't want to take any pills. His doc's nurse got him an appointment on Monday same day as the appointment to see his Nephrologist about the results from his surgery last month. His chief concern is that the appointments are late in the afternoon and he wants to be home at 6pm and not out and about. He's just pissed off about everything and is convinced that no one cares. Everything is a waste of time. He's trying to draw me into a debate about whether or not to go and all I keep saying is that it's 'your call' but maybe the notion that it'll be a waste of time is wrong. He's in a dark place right now and told me earlier 'can't do anything he wants to do'. He does not want to see me tomorrow and I'm not going to go against his wishes. He's going to prove that he's 'open-minded' by going to the psych but it's a set up to failure. I guess we'll see what happens. One thing.. the effects of the chemo is not 'made up' it's just adding to a personality that has a long history of negativity and that's making his recovery that much more difficult.

jimwins's picture
jimwins
Posts: 2077
Joined: Aug 2011

I hope he goes to the appointment and they make some progress. Counselling and therapy could be a big help if he's open to it.  Medication may really help too.  I hope he can find some joy in life - know it's hard but very possible.

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