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Reaching out - lonely

Cerato
Posts: 18
Joined: Nov 2013

Hi,

I've been reading back through the discussions on this board for the last couple of days.  You sure are supportive group!  I'm very glad that you're here! 

I created an account today because I'd like to join the group and because I realize that I need some support.   In Oct 2012 I was diagnosed with "B cell lymphoma unclassifiable with features intermediate between DLBCL and BL," better known as Double Hit lymphoma. Treatment started Dec/12.  I had 6 rounds of R-EPOCH and then a SCT in July 2013.  I have an amazing group of friends who got me through all of it.  Because I would go to the hospital for a full week for chemo, and was feeling pretty low after it, I would go to a friends house for my first week out of the hospital.  Then I would go home for a week and then back into the hospital to start it all over again.  It was a surreal six months.  Then came the STC.  I came out of that feeling tired but okay, and it didn't take me long to bounce back physically. Everyone, including my doctors were amazed.  Because I was feeling so good I started to do some easy part time work, plus I started making plans to move.  Well, it didn't take too long for everything to come crashing down. I was flattened physically and emotionally and had to shut everything down.  Stopped everything and got the messae that I just need to give myself time to recover. 

It's been about a month since the crash, and I have started to come back.  About 50% of my energy has returned.  I can excercise a little bit and go out for coffee with friends. I've decided not to go back to work for the forseeable future, and the move won't happen for at least a couple of years. So this is good.

The problem is that I find myself feeling very lonely most of the time.  Even when I'm with my friends I often feel  a deep sense of lonliness.  I feel like the emotional healing is going to be more of a challenge for me than the physical healing.  When I found this site, I just sort of absorbed all of the messages here like they were a kind of medicine.  Reading them helps tame the lonliness, somehow.  So here I am.  I'd like to be part of your group and part of the mutual support. 

I look forward to hearing from you.

Best wishes,

Cerato

PS - could someone please tell me how I upload a picture to go with my online name.  Thanks Laughing

 

 

 

jimwins's picture
jimwins
Posts: 2064
Joined: Aug 2011

Welcome Cerato!  You have been through quite an ordeal and I am thankful and congratulate you on getting through all of that!  I had similar treatment of R-EPOCH but no SCT and am very close to 2 years remission!  You will find caring and supportive folks here and more will chime in soon.  You are not alone here.

You are right in that there is a strong emotional and psychological aspect of dealing with all of this.  There is a sense of loss of life before cancer and the grieving that comes with it and dealing with the "new normal" that comes after treatment and survivorship.  It is a challenge and you are also experiencing the loss of a relationship as well so I know this isn't easy.  I'm sorry you are having to experience all of this but you sound like a strong person and you will get through it.  Grief is a process and unfortunately, we have to go through it and let it happen to get beyond it. 

Regarding the loneliness, coming here will help.  Do you have any pets?  They can be wonderful companions and so therapeutic during tough times like this.  I recently took care of a friend's dog while he relocated and was getting settled in a new job out of state.  She (the dog) was my little buddy for about six weeks and made me realize how beneficial that can be so I'm now considering getting a dog as a result :).  

Regarding posting your picture(s), click on the "Click here to create or update your about me page" at the top of the page and that should get you started.  I believe you click on "expressions"and you have the choice for images.  The site has changed since I joined so it may be a little different now.  

Again, welcome to the site and others will join in soon.  I wish you the best and look forward to getting to know you here.

Warm hugs,

Jim

 

 

Cerato
Posts: 18
Joined: Nov 2013

Dear jimwins,

Thank you for the warm welcome!  And thank you too, for your understanding of the ordeal I've been through.  It's the first time anyone has told me that they've also experienced R-EPOCH.  In the hospital I went to they'd only ever used R-EPOCH on one other patient!  

Your words are very kind and full of wisdom.  Until I found this site I hadn't heard the phrase, "new normal," but it fits so perfectly.  I think that I was thinking of my diagnosis and treatment as more "episodic" than a life changing experience that would necessarily bring about a new normal.  I am beginning to more fully understand that there are alot of feelings to process, including the grief at the loss of my relationship, and that the processing and adjustment to the new normal will take TIME.  I have to laugh at myself a little because not so many weeks ago, I was like the Road Runner in the Bugs Bunny cartoons ....zoom!  Not any more .....

I know what you mean about having pets around.  They can do wonders.  I had to leave my two cats with my ex partner and the building I've moved into doesn't allow pets.  I miss my cats but I will likely be looking for a new place to live in the spring and I'm going to do my best to situate myself in a pet friendly environment!

Thanks for the tip on how to post a pic.  I will give it a try.

I forgot to mention that I am in a complete remission at this time.  Whew.  Congratulations on your two year remission after your encounter with R-EPOCH!  Thank you for sharing this with me.  It brings me happiness and hope.

I  look forward to being an active member of this community, so I shall just say bye-for-now.

Gratefully,

Cerato

 

 

 

sureshwani
Posts: 23
Joined: Aug 2013

Jim,

I am NLPHL'ler from India 40 yrs of age. I have done my ABVD 6 cycles and Radiation due to bulky diseas. I have finished Rad in sep 2013. I have my family and kid.

I work full time(was doing even during treatment) every body at work & home are supportive. But i am not able to sleep at night properly. there is always a unknown fear of uncertainty. I always feel angry. I always feel god has been unfair with me.

Ailidh
Posts: 52
Joined: Aug 2013

Sureshwani, have you spoken to your doctor about your sleep issues? Not sleeping well can really mess with your mood, and I can understand your anger.

Cerato
Posts: 18
Joined: Nov 2013

Hi sureshwani,

I agree with Ailidh, that if you haven't already, it would be a good idea to talk with your doctor about your sleep problem.  When I got my diagnosis and was unable to sleep, my doc prescribed a sleeping med.  It worked well.  I sometimes still use them.  I also use quiet, soothing music to help me sleep.  

I too understand your emotions and I  share your fear of uncertainty.  I don't know how you react, but with me, if I don't sleep well, my fears only get worse.  I hope that you are able to start sleeping well again, soon.

I wish for you many good nights rest and plenty of pleasant dreams!

Cerato   

BlessedinPNW
Posts: 14
Joined: Oct 2013

Sureshwani,

I too had sleeping issues during and now 6 weeks post chemo.  My doctor did perscribe a medication during treatment which was a God send at the time.  However, when I requested a refill after treatment he was less than enthusiastic, warning me against continuing because the body quickly becomes accustomed to the dosage and requires increasing amounts of the drug to be effective (btw this is exactly what happened).  This threw me into a little bit of a panic becuase I know just how well I function on little or no sleep (Not!)   I remembered how well the natural hormone Melatonin worked for me in past years (pre-diagnosis) during those few times when I had difficulty sleeping.  Since he still had not cleared me to start back on my vitamins / supplements until he had the results of my scan, I asked if it would be alright to use Melatonin instead.  He agreed.  

Long story short I started on 3mg that night (the strength that worked well for me in the past) and it didn't help much... I tossed and turned pretty much the entire night.  The next night I increased it to 6mg and slept like a baby... even better than on the RX prescribed during chemo.  I am still taking it and have no problem sleeping.  Anyway, if you haven't tried Melatonin, check with your doctor and if he gives you the ok, give it a try.  There is nothing worse than being sleep deprived.  Btw, certain brands did not work as well as others for me personally, so if one brand does not work for you try another.  I wish you well.

jimwins's picture
jimwins
Posts: 2064
Joined: Aug 2011

First, let me say how much I admire you for being able to work and maintain during all of your treatment.  I can't imagine how difficult that must have been.  I don't sleep like I used to myself and I usually nap during the day.  Hopefully your doctor can prescribe something to help with sleeping.  

You only recently finished treatment and what you are going through regarding anger, fear and uncertainty is very normal.  Please be kind and good to yourself.  I know sometimes it feels like the whole universe is against you but something in the universe has helped you get this far - right?  I am thankful your treatments are over and I know this is a tough time dealing with all the aftermath and pyschological fall out.  It's okay to be afraid and angry - just not all the time or forever.  You've been through trauma and it takes time.  I think getting better sleep will help and you are not alone here buddy.

Hugs to you and your family,

Jim

Ailidh
Posts: 52
Joined: Aug 2013

Cerato, welcome from another newbie. Well done for understanding that emotional healing takes a long time! It's taken me a while to come to terms with that, and am gradually, very gradually learning not to beat myself up every day that I don't feel marvellous - I know I wouldn't tell anyone else to pull themselves together but I still want to tell myself to...

I understand, a little, about partners leaving: mine was only of a year but he left as my treatment finished and I got the deep emotional and mental reaction that is still somewhat with me. The being left and the diagnosis and the treatment - yes, they lead to a deep loneliness and, while I think time will improve things, it takes a long time of being gentle with ourselves, and finding places like this where we can be honest - it's ok to not be 100% perky all the time.

Wishing you well....

Cerato
Posts: 18
Joined: Nov 2013

Hi Ailidh,

Thank you for your warm, open hearted welcome.  It sure is nice to be here!

You are so right about the need to be gentle with ourselves.  I thought that I knew what that meant, but I am learning it on a whole new level, now.  I love the way you put it, "not beating myself up if I don't feel marvelous every day."  That just nails it!  The perfectionist/impatient part of me wants to feel and BE marvelous -- at a moment's notice.  Oh, dear.  Bit of a strain on the system, eh?  The social worker at the cancer clinic told me that all of the nurses on the onc ward just loved me and wanted me as one of  their patients on their shift.  When I told my best friend about this she just sighed and said, that's because you're so good at being upbeat and cheerful all the time ....my friend sees through this "marvelous" aspect of myself.  Good thing.

I'm sorry that you went through losing your partner when you did.  It's a wrenching experience and I know that it has left me with deep wounds.  I sincerely hope that you are right about time and gentle self care being part of the healing.  If this is so then at least we are on the right path ...

Thanks so much for responding to my post.  I look forward to chatting with you more here.

Sending good wishes,

Cerato 

 

 

NANCYL1
Posts: 246
Joined: Jun 2012

Cerato:

You have been through so much, and I think that people who have not "walked in your shoes," cannot understand exactly what you are feeling.  And they don't know what to say. That would definitely give one a lonely feeling.

My husband and I have become quite isolated and at the moment do not feel like looking for ways to socialize in our area.  I was diagnosed last year with B Cell Lymphoma and also a heart problem, so we are staying in this location at least temporarily because of the access to excellent medical care.  Eventually we may move.  At this point, I am very lonely with little support from my family who live at some distance.  They don't seem to know what to say to me and so there is not much communication.  

I think you will find the folks on this board very warm and empathetic.

I wish you the best.

Nancy

 

 

 

 

 

Cerato
Posts: 18
Joined: Nov 2013

Hi Nancy,

Thank you very much for responding to my post.  

Yes, I think you are right, that until we walk in another's shoes we can't really know what that person is feeling -- even our closest friends and family can't really know.  And it does leave one feeling lonely.  

I'm sorry that you and your husband are isolated right now and that your family members don't seem to know what to say to you.  I imagine the lack of communication only increases your isolation and lonliness.  How good that you found this site, Nancy, where people do know what to say.

Isolation is such a tricky thing.  I find that the more isolated I become, the less likely I am to reach out.  Even though it is such an alienating, lonely experience -- isolation -- in my experience, it feeds on itself.  So that's partly why I'm here.  Even though most of my friends and family do know what to say to me, I still often end up feeling isolated and sometimes, incredibly lonely.  I feel less lonely though, knowing that there are others who really get what I've been through.  It's a funny thing, this -- this feeling better understood and less lonely talking to complete strangers online than I sometimes do,  talking to a friend in person.  I guess it has to do with that having  walked a mile in my shoes.

Thanks so much for connecting with me, Nancy, and for sharing your words of wisdom. I look forward to talking with you again, soon.

Warmest wishes,

Cerato

illead's picture
illead
Posts: 544
Joined: Aug 2012

Hi Cerato, Nancy, and Ailidah,

     Just wanted to say hello and want you to know that I am thinking of you.  Most of us have great support and it is easy to be supportive of others.   I am the caregiver and you probably know that Bill is almost 2 yrs in remission.  I can't imagine doing this practically by yourselves.  You are unique though in that you have an isolated group that you can be encouraging to, and one of the best medicines is to be able to help others.  So all of you are a real asset to our group and I just want to say how much we appreciate you.  Warm thoughts, Becky

 

PS: Just a mention to dear Jim, I hope you go for the dog, you are the perfect candidate for a good dad, and it will change your life.  Please let us know when you get it.

Cerato
Posts: 18
Joined: Nov 2013

Hi Becky,

Thanks so much for taking the time to say hello and to offer your words of encouragement.  It was an especially nice surprise when the picture of you and (I'm assuming) Bill, and your lovely pet friend came up with the message.  So nice to see you all and to know that you are thinking of us!

It's wonderful that Bill has been in remission for almost 2 years.  Thank you for letting me know.  I'm so very glad that you and Bill have each other.  I imagine that you have brought him a tremendous amount of comfort on his journey.  What a beautiful gift!

i send both of you my very best wishes and I look forward to connecting with you again, soon!

Cerato 

NANCYL1
Posts: 246
Joined: Jun 2012

Hello Becky:

Thank you for thinking of us.    Great to hear that Bill is almost 2 years in remission.   That gives me hope.  I am finished with my Rituxan infusions in December, and we will soon find out what comes next.

I agree:  Jim should have a dog.    I know someone who has a beautiful Maine koonhound.   Would love to have one.   I am absolutely pro-dog as a wonderful companion.  I have a very nice, snuggly cat, but there is nothing like a dog.  Have had two mixed breed small terrier types, and long ago, an English Springer Spaniel and an Irish Terrier.  What kind of dog is that cute, alert pup in the photo with you and Bill?

 

Best wishes to all three of you,

 

Nancy

P.S. Misspelled the Maine dog name above on purpose,  because the website kept inserting 4 stars.

jimwins's picture
jimwins
Posts: 2064
Joined: Aug 2011

Thanks for thinking of me.  I did enjoy having the dog ("Betty") here and I do miss her.  I did get a roommate to help out with expenses at the house and I do occasionally water and feed him but he takes care of his own "business" Surprised

Hugs

illead's picture
illead
Posts: 544
Joined: Aug 2012

     Thank you so much for your nice comments.  I hope you are feeling better.  I'm sorry that I didn't write more about Bill, I just thought you had read some past postings but guess they were awhile back.  Bill was diagnosed with Mantle Cell Lymphoma in July '11.  He just made dramatic progress from near death to his normal self in about 4 months and will "officially" be in remission 2 yrs. in Feb.  We are very thankful and optimistic with all the advancements in MCL and all lymphomas.  You guys will get there too.  It's nothing we are prepared for is it?  Yes that is Bill in the picture.  I share everyone's comments with him, so he knows what is going on, he's just not a writer.

     Gracie is a Havanese, she is the love of our life (besides our kids) ha ha.  Sounds like you are dog lovers too.  You have quite a menagerie Nancy.  I agree about cats, I love them but dogs are more cuddly.  Our vet has a sign in his office "Call a dog and he'll come running, call a cat and he has you take a number"  When Bill was so sick, he lived in "his chair" and Gracie sat with him.  Now if I call her to come in my lap, she will jump in Bill's.  What loyal friends.  Hope you have a good week and all of you continue to feel better.  Becky

 

NANCYL1
Posts: 246
Joined: Jun 2012

Becky:

 

You said that I have quite a menagerie, lol.   That list is of past dogs.   Now just have a snuggly cat.   

Nancy

sureshwani
Posts: 23
Joined: Aug 2013

Hi Guys,

 

Thanks for your support. I think, I need to speak to my Doctor. My Dr. is a person who avoids medication as much as possible. Even during the chemo.

Suresh.

illead's picture
illead
Posts: 544
Joined: Aug 2012

I was thinking I wasn't getting that right but I was too lazy to look up your post once I started writing, so I was hoping for the best :D.  My friend had Guillam Barre and could barely move.  She spent weeks on her bed and her old scruffy (and I mean scruffy) rescued red cat would not leave her.  His name was Rush cause he meowed (talked) a lot :D :D

Suresh,

    I felt bad the other day when you wondered why God was allowing this.  I didn't want to get preachy so I didn't respond, but I do want to say, his arch enemy loves to hear us blame God instead of him.  The Bible says about God, when one of us hurts it's like touching his eyeball.  However God is not partial, he doesn't heal one and not the other.  He promises us a wonderful hope though and that is what we need to cling to.  Hang in there.  My best to you, Becky

Ailidh
Posts: 52
Joined: Aug 2013

I was just wondering how Cerato and Sureshwani were doing? Keep reaching out, it really does help!

Cerato
Posts: 18
Joined: Nov 2013

Hi Aildh,

Thanks so much for thinking of us. 

I've have had some very good days since I first posted.  Some days were not so great but I get that I'll just have to be patient.  My loneliness has diminished quite a bit.  You're right that reaching out helps, and I'm hanging in there to make sure that I stay connected  to my friends and loved ones -- and now to this lovely, supportive group.  

I had a big day, yesterday.  Along with playing about with a friend in a fantastic pool that has currents you can flow/swim with, or walk against, (lots of fun), I had coffee with another friend, and then dinner out with my pool buddy.  Today, I'm taking it very easy and enjoying being quiet.

I have been reading posts here for the last few days but haven't had much to say.  But just after I started this message to you, I thought that it would be good to get some feedback from folks here about a conversation that I had yesterday with my oncologist about CT scans. So I've written that message and will post it after I send this one off.

I wonder how you are doing.  Please let us know, and thanks again for checking in!

Take care.

 

 

 

 

 

 

Ailidh
Posts: 52
Joined: Aug 2013

Hi Cerato,

Thanks for asking. I'm doing ok but still very up and down. I've had some good days but am in a bit of a low and grey space at the moment. Partly because I always suffer from Seasonal Affective Disorder and, despite buying a lightbox and trying to take exercise in the daylight, the winter greys have drawn in. Partly because I'm gradually doing more at work, which is good but a) makes me tired and b) my boss, I think, doesn't think I'm doing enough yet, and that feels very pressured. Deep breaths! This too will pass. Hope you're doing OK. {hug}

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