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Counseling/Therapy

Chelsea71
Posts: 1170
Joined: Sep 2012

Steve and I recently spent time talking to a nurse practitioner while waiting for Steve's Thrombosis doctor. We updated her with regards to the recent spontaneous hematoma and the extremely difficult and lengthy hospital stay. We told her how Steve who is normally very pleasant, friendly and positive was grumpy, rude and difficult. Very snippy with me. Just not himself while in hospital. Was coming off Decadron, in a lot of pain with the leg, on Dilaudid etc etc.... Many factors at play. None the less, he did not cope well. We were both worn down. Snippy with each other in front of nursing staff etc.... Not our most graceful hospital stay. The nurse practitioner told us that we both should be going for counseling with a professional who specializes in dealing with people who are coping with cancer. Would I benefit from counseling? No doubt. Unfortunately, I don't have time to go to the dentist or get my hair done. My schedule revolves around Steves appointments. I have put my own needs on the back burner. I'm sure other care givers can relate. I have to miss a lot of work in able to attend Steves's appointments. I don't want to miss work unless I have to. The question is would Steve benefit from talking to a professional? Since diagnosis, two years ago, he has seemingly coped well. Engrossed himself in his hobbies and activities and got on with his life. Has always seemed to have a good balance between understanding the severity of his situation and yet also having a positive attitude. Friends, family, neighbors etc.. have commented that they would strive to conduct themselves like Steve if faced with a serious diagnosis. I think these comments have been very reinforcing for him. Since the hospital stay he has not quite been himself. I don't think he's clinically depressed, but maybe a bit sad. Not sure why. He seems very worn down by the fight. I guess it's easier to stay strong mentally and have that fighter attitude when you feel good physically. (he is still recovering from the leg problem). Does anyone here go for therapy? Do you find it helpful? How has it helped? Do you think it would help Steve? He has so many appointments. Counseling would involve an hours drive. I don't want his life to become all about the cancer. Maybe counseling would help him and would be worth the time? He is not against the idea. He seems to leave these decisions to me. Likely a topic that may come up during counseling. Lol. I realize many may not want to comment on such a private matter. Any input is appreciated. Thanks.

Chelsea

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

I have to say 100%, without a doubt YES

I started seeing a therapist/counselor about 6 months after my dx. She's helped me tremendously. There are some things that I wasn't comfortable talking to my wife or others about that I could bring up with my therapist without freaking anyone out.

 

 

maglets's picture
maglets
Posts: 2406
Joined: Jun 2006

Chelsea....what a wonderful, thoughtful person you are.  I have to agree with Philly (as usualLaughing) with just a couple of additions.  When you live in a smaller community sometimes the access to health-care professionals is limited. Now this in no way is intended to be Doc bashing because I have the utmost respect for every doc that has been involved in my care.  During treatment both times I have been assigned a social worker as someone to talk to and this service was controlled by CCAC.  In both instances the worker was a big waste of time for me in fact downright upsetting.....I had to take this service because my drugs depended on having 3 services from CCAC....I will not go into the sad story of my suffering through couselling....suffice it say....I think it's a great idea if you get the RIGHT  person. Often I was in tears by the time my consellor left......

I do think it is a good idea.....good luck Chels.....wish you could get a wee bit of beach time with your mom and dad

mags

PatchAdams
Posts: 272
Joined: Nov 2011

I live in a rural area and tiny town.  There's a couple of psych's in an adjoining town but my doctor warned me that this one guy will talk 5 minutes and send you home with pills for sleep, depression, anxiety, panic, etc and see you monthly just to up doses or add more.   There are no 'counselors' here outside of those offered at churches.  Fine and good, but most of those aren't trained to deal with cancer specific anxiety.  

I have tried out 2 cancer groups. Both were nightmares! Both were people who shared every symptom they'd ever had and the meetings were very negative.  One was a small group (mostly breast cancer) and the 2nd was all different types of cancers.  I was in full panic mode after leaving that meeting! 

My primary care doctor will chat with me..... for a co-pay of $55.00 and my Gastro talked with me for over an hour at my last check up for a co-pay of $65.00. I feel so much better for weeks at a time after talking with them about my fears and anxiety.  Both are Christian men with huge hearts and neither ever makes me feel rushed or like I'm wasting their time.  My pastor will gladly give me any time he has available BUT we have a number of people actively dying of cancer right now and I know they and their families need him much more than I do.  One friend died this week only 10 days after being told she had ovarian cancer!  She was 46. 

My PET scan is coming up next month and I'm already anxious about it, tho it's only been 3 months since my last one. 

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks Mags and Patch. You guys have touched on the very thing that gives me pause. My concern is that we would not find the right counselor. We don't want someone to help Steve come to terms with the fact that he has a terminal disease. We want a professional that would take a positive approach and teach him techniques to help him live with cancer. The wrong therapist could cause more harm than good. After Steve had his colectomy two years ago the surgeon "broke the news" to us in a very harsh manner. It took us a long time to get over his choice of words. We recently saw that surgeon in the cafeteria while Steve was in the hospital. Just laying eyes on him made us feel physically ill. I think the right therapist could bring Steve some relief much like the relief I feel in "talking" to everyone here. I know there are things he holds back as he doesn't want to worry me. I guess I should shop around and do my homework to make sure I find the right one.

Chelsea

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks Phil.  I'll bet you have access to some great therapists at Sloan.  I'm glad you"ve found it to be helpful.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Chelsea -- You could start with your oncology providers. If you are at a large cancer center there is generally a team of social workers who work specifically with cancer patients and their families.  A visit with one of these social workers can usually be coordinated to take place on the same day after your regularly scheduled oncology visit. Most of the time, their services are designed for 2-4 visits to help assess your situation and refer you to services in the community that may help futher.  You may want to request a counselor in your community who allows phone visits, some folks even offer Skype if you prefer that.

Just be sure to stay strong and advocate for yourself -- ask for, insist on, the services provided to you in ways that work for your family -- more may be possible than you think.  

I hear you that the idea of additional appointments added to an already full and stressful life would not necessarily bring the comfort you seek.

Wishing you and your husband the best as you move forward.  Counseling can be helpful to smooth the ride as you travel this very bumpy road. -- Cynthia

 

 

 

 

manwithnoname
Posts: 393
Joined: Jun 2012

counseling is a way to express things without the emotional worry of upsetting family members, our son know's we are scared and is reluctant to say anything to us, he has art therapy counseling and has told her all the things he's scared to talk to us about,  fear of death and fear of treatments etc.

His therapist is amazing though but it took a while for them to build a trusting relationship.

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Cynthia. Yes, we deal with a big cancer center. I seem to recall hearing that counseling services were available back when Steve was diagnosed. We were so overwhelmed at that time that it likely went in one ear and out the other. Thanks for the advice.

Chelsea

janderson1964's picture
janderson1964
Posts: 1623
Joined: Oct 2011

I have had 5 hospital stays. The first 4 were fine however the last one was very similar to what you described. I have alwasys been very positive as well but I think the last surgery overwhelmed me and my wife. I ended up yelling up my wife and father telling them to leave and I am sure the whole nursing staff heard it. I broke and started crying the next day when the doctors walked in making thier rounds.

My wife was upset because she has a tailoring business and was falling way behind with the hospital visits so I go to all of the doctors appointments treatments and scans by myself. It is just as hard on the caregiver.

I/we are fine now. It just took time to get back on track and start fighting again.

Steve might just need a little time but there is nothing wrong with counceling. The mental aspect of cancer is harder than the physical.

annalexandria's picture
annalexandria
Posts: 2255
Joined: Oct 2011

when I first got diagnosed (and was seriously freaking out...it didn't help that my sister had been diagnosed at the same age and died within a year), was talking to the social worker attached to my doctor's office.  She was really good, lots of practical advice, as well as understanding of the basic terror that goes along with this situation.  But she worked strictly with cancer patients, and had a lot of experience, and I think that is key.  Counseling can be great, but it very much depends on the person doing the counseling, and how well they match up with the patient.  If it was me, I think I would give it a try, and see how it goes.  It's a long trip, but might be worth it, if it helps Steve feel a little better (and maybe the counselor would do phone visits after the initial intake...some do).

And just in general, with regards to his changing moods, personally I've experienced something similar.  Living with constant illness, especially pain, is just exhausting.  I was always an upbeat and happy person, but I have found that I'm a lot more of a grumpy cat than I ever used to be.  I'm just getting worn out, and I'm in freaking remission at the moment!  Steve is still in the battle, and in pain, so I'm not surprised that he's starting to wear down.  The other thing I think is that those hospital stays can cause a kind of PTSD condition in people.  I had one that was very rough, and it took me months to recover from it, was literally having flashbacks to some of the things that happened while I was there.  It may take time for Steve to recover emotionally from his hospital stay, and that's something else a good therapist could help him with.

Other things to try that have helped me...massage, getting fresh air, taking a day or two (if it is at all possible) to go away, some place where cancer is not the main topic of conversation...

And Chelsea, I know it's almost impossible right now, but somehow you have to take care of yourself too!  You are obviously a wonderful caregiver to Steve, and I hope you can give yourself a little time now and then to have a break.  Big hugs~AA

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Ann. Thanks for the kind words. In my post I was actually going to mention PTSD. The way I feel now (since that hospital stay), feels like what I imagine PTSD must feel like. For Steve too. He does have flashbacks from the hospital. He will remember upsetting situations and seem to almost relive them in his mind. For myself, I find it very hard to go from being in a cancer ward in a hospital for two weeks with sickness, death, doom and gloom etc all around me to be back at work and everything back to "normal". Its a hard adjustment for me to make. Can't really describe it well. It was all so serious with Steve while he was there. Uncontrolled bleeding, tests, test results, procedures etc... There was so much to worry about. Then it was back to work. Coworkers gossiping about other coworkers. People talking about "problems" that seem very minor to me. It's hard for me to switch back and forth.

Steve does go for massages and finds this quite enjoyable. Thinking of going away for Easter to get a change of scenery.

Yes, in my head I know that I should look after myself so that I can be strong
for him. I tell others here the same thing. I just always find excuses to put my own needs aside. I will have to work on this. Steve is always encouraging me to focus less on him and more on myself. I should listen! Will make this a late New Years resolution.

Chelsea

Chelsea71
Posts: 1170
Joined: Sep 2012

Sadly, I am relieved to hear that you went through something similar. It must be a fairly common problem. He has had numerous hospital stays over the years but this was the most difficult by far. What worries me is that he is looking at possibly having a two stage resection within the next several months. (Providing there is no progression). He is already so worn down emotionally. He wants the surgery though. He know that it's his best chance of getting a break from the chemo. Hopefully by then he will be stronger physically and mentally.

Thanks,

Chelsea

annalexandria's picture
annalexandria
Posts: 2255
Joined: Oct 2011

when I was facing another surgery after that particular hospital stay (#4 was the bad one).  #5 actually ended up being not so bad, but I didn't know that going  in.  Some thoughts on dealing with that...Steve needs to figure out what elements are most upsetting to him, and if there's any way to plan ahead on how to deal with them.  I talked to a person at the hospital (not sure what she was-social worker maybe?) about some of the things that worried me.  For example, I knew I would be having major anxiety while I was in there, and I wanted to have Ativan available as needed.  That's something that can be set up ahead of time.  This is something that a good cancer therapist could help him to figure out.  Of course, many things can't be controlled or planned for, but there may be some things that can be managed.  AA

Chelsea71
Posts: 1170
Joined: Sep 2012

I think that may have been part of why it was so difficult. It came as a surprise. We were not "psyched up" for it. With surgeries etc that we knew of in advance, we would go into it mentally prepared. This situation developed unexpectedly at a time when we were already tired out from that whole face swelling and turning blue episode. If liver surgery continues to be an option for him, we will do exactly what you suggest. Figure out what his stressors will be and try to prepare for them before going in.

Thanks

Lovekitties's picture
Lovekitties
Posts: 2943
Joined: Jan 2010

I agree that counseling for you both can help.  Just make sure it doesn't also become another stressor due to times, distance, place.

While it would be great to have someone specifically atuned to cancer patients and caregivers, there are other possibilities. 

Not sure what type of area you live in, or what your faith presfernces are, but there may be someone closer to you than that hour drive.

As with any physical/emotional service, it is critical that the person receiving the service is "in tune" to the provider.  If you have a chapter of the American Cancer Society close by, they may be able to point you to some local possibilities.

Coiunseling is a good thing when a person has "lost their way" due to any life circumstance, as long as it is done with the idea of helping to identify the issues and find your own answers to how to help resolve. 

Wishing you both the best at finding someone to help you both live thru this difficult time.

Marie who loves kitties

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks Marie. I plan to look into counselors in our area. May not be able to find one who specializes in cancer. The other option is maybe coordinating therapy sessions with chemo sessions or onc appointments. On second thought, maybe not such a great idea. Those appointments are stressful enough without throwing in counseling. Lol.

Thanks

Chelsea

lilacbrroller's picture
lilacbrroller
Posts: 285
Joined: Jun 2012

Have you considered a therapist who can communicate via Skype or other type of internet telephony?  There are some out there, and you can get the face-to-face interaction, but over a TV set or computer monitor.   Usually websites post photos and a bio of the therapists, so you can get a feel for who you all might click with.

I was having a hard time last summer and needed someone (other than my family and friends) to talk to, about serious issues like death and dying.  While my Mom and I have a great relationship, conversations like that just made her sad becuase it meant losing me. Cry  Ditto with my friends.

I needed a neutral third party and a safe place to process these unpleasant issues out loud, so I found a social worker and she's been great.  I was all spun up about dying and she said to me on my first appointment, "Look, until they tell you absolutely that you are dying... LIVE!!!!!!!!"  And it was like, "duh."  This hadn't even occured to me, since I'm by nature a worrier and spend more time thinking about the future than the present. 

So that's what I've been doing.  I'm not denying the possibility of early death, just not focusing on that right now. Believe me, it's always on my mind and I can't shake it but I do make some future plans and do have things to look forward to that are fun and satisfying. And life is allright.  

good luck - I would say try Skype therapy as a couple. Maybe that will motivate your husband to want individual therapy, and that's okay; he probably needs to talk about things that might just make you sad...  

good luck - all the best

Karin

 

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Chelsea -
I have reached out for counseling and it took me a couple sessions to sort out what roller coaster would slow down.
Have had issues with my mother and young adults besides cancer related.

Sometimes just being able to air whatever is on your mind to the right counselor can bring relief and help you filter through what's going on in your thoughts. These thoughts can be more difficult than pain or other physical symptoms.

I have been to two counselors and one did not understand nursing terms?? The other has been great. She had a mom with metastatc cancer and totally "gets it ".

Your husband and you have endured a lot recently. He is probably frustrated and if he was on decadron that steroid makes some personalities aggressive. I hated it.

Yoga has really helped me. You deserve nurturing and downtime....as well as your husband.

At first I wasn't sure about counseling but it has helped me.

I hope your husband is feeling better and you can get some rest.

Barb

Chelsea71
Posts: 1170
Joined: Sep 2012

Hey Barb. I remember that you had experience with the decadron. It sure as hell didn't agree with Steve. I think it was the root of many of his problems. Interestingly enough, he quit taking it with his chemo due to the trouble he had when he was taking it as a regular daily med. The chemo has been much harder on him, in terms of nausea, since stopping it. We are going to see about getting him back on the 4mg with chemo. I guess it has it's place.

Chelsea

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for the suggestions, Karin. Seems like you found a great social worker. It's true. I'm sure a lot of what Steve would say would sadden me. Which he know and likely holds it all in.

Annabelle41415's picture
Annabelle41415
Posts: 4265
Joined: Feb 2009

Yes that could help you both very much and you could schedule to suit your times not just theirs.  Our hospital offered some type of support through them so you might try that also.  You have been through so much lately and you too, deserve to get some relief.  Emotions can run high on both ends.  You are a wonderful caregiver and once in awhile you should take the time to go get a facial or manicure.  Hope you find something that works for both of you.

Kim

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks Kim. Nice to read your post. Have missed them. I'm not sure about the manicure or massage but I am definitely going to get these roots done soon!!!

Chelsea

Annabelle41415's picture
Annabelle41415
Posts: 4265
Joined: Feb 2009

Yes, go have your roots done.  Your husband has been through an unimaginable ordeal and I'm hoping and praying that he feels better soon.  He might even say he doesn't want to go to counselling, but see what you can schedule and kindly nudge him into at least trying it.  Best to both of you.

Kim

jen2012
Posts: 1208
Joined: Aug 2012

I don't have anything beneficial to add...everyone has great advice.  I can appreciate how hard it is to make time for yourself, but can you get a massage when Steve gets his?   A friend stopped over for coffee last week and it was really nice...maybe helps that she is a therapist and knows how to listen and know what to say and not to say?  I haven't opened up to her completely, but I know she's there if I need to.     I wish you were closer Chels - I would insist on a cup of tea every week so we can decompress together a little!

I read a book last night!   My first one since the book I finished in August...while waiting for my husband to get out of ct scan, pet scans, etc.    It was kind of nice -  find a book and just get lost in it for a few minutes a day.

I do think Steve would benefit from having a stranger to open up to.   Skype sounds like a great idea if you can work that out.   I always think that the infusion centers need to add more benefits - like a therapist to talk to while you are sitting there.   Maybe hand massages.  Something beneficial to help pass the time for the patient. 

Chelsea71
Posts: 1170
Joined: Sep 2012

You know it's funny how I can spill my guts here with you guys but, like you, I would not completely open up to a friend. The idea of talking to a professional one on one makes me uncomfortable, as well. I would feel very nervous. Funny, I can post all kinds of personal stuff on the Internet for the whole world to see, but I'm uncomfortable sitting down for a conversation with a professional. Go figure. I guess I must appreciate talking to people who are going through the same issues. It's too bad your not closer. Weekly tea would be nice. So would weekly wine.

Have a good weekend.

lilacbrroller's picture
lilacbrroller
Posts: 285
Joined: Jun 2012

hand massages.....  wow!  that would be wonderful.  Or my feet in a warm foot bath..   dim lights, the scent of jasmine, and me wearing a thick terry robe. maybe cucumber slices covering my eyes... 

at my old infusion center, I got hot cotton hospital blankets, refreshed periodically, which made me feel very pampered.  towards the end of my cycle I was pretty wiped out so they let me occupy the VIP suite when it wasn't taken (a bed, not a barcalounger) and i slept through the whole treatment.  I had wonderful nurses who were very caring, and a couple were very experienced in oncology nursing so they were great resources for me. 

 

(okay this has nothing to do with therapy but I was reading the thread and jumped on the idea.)

 

Glad we can be here for you Chelsea71.  everybody gets something out of this board...  even business ideas Cool

 

- Karin

jen2012
Posts: 1208
Joined: Aug 2012

Great ideas Karin...your nurses sound wonderful and caring. I think it is related to the post. Doctors understand what stress does to the body. You are stuck in that chair for hours...would be nice if they offered some destressing during that time. My husband jokes with the oncologist that he cant heal there with the nurses chasing alarms and stressed and worn out themselves...plus the alarms constantly buzzing and the hospital is under construction so its just a mess with parking etc. Would love for them to play some soft relaxing...instead of listening to jerry springer blaring from the next patients tv!
Well they did give out soft boyds bears last week...that was nice.
Yes chelsea...a wine night would be even better!

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I have a pamphlet that discusses Psycho-Oncology support and it lists some issues that confront individuals and their families when cancer is present in their lives that can be helped with counseling: anxiety and depression, emotional withdrawal, stress management, relaxation therapy, pain management, supportive counseling, insomnia, marriage and family issues, sexual issues, and body image issues.  

Once you speak with an open-minded and compassionate individual (perhaps one experienced in supporting those confronting cancer) your discomfort of speaking with a stranger about your private emotions may soften.  Feelings may flow more freely than you imagine.

The typical feelings of worry, sadness, and anger accompany any illness -- but couple that with the anxiety, isolation, loss of control, and lengthy treatments which accompany a cancer diagnosis -- can create extraordinarily intense emotions.  

Of course, professional counseling is simply one way to get support ... depending on the individual and their family ... talking to friends and extended family may suffice.  In my own situation, I have not found that to be the most satisfing because it is difficult for others to not just want to "make it all better".  Sometimes what you need, or your husband, is to just talk about how bad everything feels. Often, this is simply too much of an emotional burden for extended family and friends.

Spiritual counseling suffices for some as well and may be easily available to you at your hospital.  When my husband was having chemotherapy, a wonderful and kind hospital chaplain who was assigned to the cancer center would rove about and sometimes stop by for a chat.  Even though we did not share his spiritual views, he did not proselytize and his mere presence and kind heart were welcome.  

Complementary and integrative medicine may also be available to you as you mentioned your husband receives care at a large cancer center.  These treatments (both proven and unproven) can promote wellness and quality of life.  You can have an integrative doctor and also have an oncologist.  They simply become part of your team and collaborate to promote your well-being.  They can also help you determine what complementary treatments and supplements can be safely integrated with conventional treatment.  Social, mind-spirit, and physical aspects of health can all be explored. I would advocate for yourself and not wait for an oncology department to refer you or suggest it.  

I think you have to give yourself permission to feel any and all emotions; the trick is to not be consumed by them.  When this happens, I think the cancer wins.  Don't wait to seek additional support until everyone's emotions are so raw or health is so fragile that balance is difficult to restore.  Find ways to get as much support as you can  -- the process in itself is empowering.

Best to you and your husband. -- Cynthia

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