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Try not to postpone the visit

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    Posted: Feb 15 2012 at 4:49am
About a year ago a dear friend of mine was struggling with his battle with cancer and I spoke to an oncologist friend and asked his opinion about going to see him and did he think the visit could wait another month when I would be on the east coast and the visit could be made more easily/economically?

His response deeply resonated with me...”When someone has Stage IV cancer and is on heavy chemotherapy there are tremendous stresses on their body. The person may actually die from something else...a heart attack or massive stroke. I would encourage you to go now and see your friend while you can have an important visit.” To be honest, I followed the advice and I could have waited but in another situation six months ago the person I visited passed, unexpectedly, a few days after I saw her.

So, I wanted to pass along this advice, lovingly, to all of you. If you have a chance to see someone that you deeply care about, who is e.g. on home hospice please try to do so, sooner than later, rather than waiting for in-patient hospice because at times, the downward spiral can be swift and severe. I believe the visit will be more meaningful for you and your loved one. I also understand that some folks do not like to visit their friends/loved ones when they are sick. I have heard “I want to remember her as she was” etc. I understand that and I understand that the visit can be extremely painful but my head has always been from the perspective of the person who is sick. What does s/he want? If you feel your loved one would appreciate a visit, I would suggest going, if you are able. 

I just made that decision a week ago. I wanted to see my friend when he was still mobile. We even went to a movie, Safe House that we enjoyed, even though he slept for about 1/2 hour during the film. It was the first time in many, many months that he went to a movie and  the talk we had on the way there and the way home was very profound and important and the words just seem to flow naturally from our hearts. I am very happy I made the trip. I spoke to his wife, yesterday, around lunch time and he was in a deep sleep and she understandably did not want to wake him so I spoke to him briefly last night. He was exhausted. It seems, that in the last few days his decline has continued and again I am ‘glad’ I went....and I know you know what I mean when I say I am ‘glad’....I was tremendously sad to see him in the physical condition he is in but I can still feel the embrace from my friend and his wife when I left Saturday. The love that flowed between us will be with the three of us, always. 

I am writing about situations where it is very hard to visit because of the distances involved. Obviously, if you are close by and can visit a friend in a home-hospice situation and can continue visiting in a in-patient hospice situation I would encourage you to do both. I have held the hand of a dying person who I was told was in coma and I have asked the person if she could hear me and I got a hand squeeze in return...several times. I was able to express my love to her and I know she got the message even though her lips did not move. You may never know if a person felt your touch/love but I would rather err on the side of trying.

These thoughts have been bubbling around in this old soul for quite some time. Thankfully this forum exists so that I could express them. If anyone would like to share, please do so. I know this is a very painful topic but maybe sharing can help.

with my love for all here,

Steve

p.s. I would also suggest that for those of you going through a hospice experience personally or supporting a loved one that you make use of the psychological support a hospice social worker can offer and/or a hospice chaplain. They are especially trained to help patients and their loved ones.




Edited by steve - Apr 01 2012 at 8:03am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2012 at 10:27am
My dear brother Steve:
 
Thank you for sharing this most difficult topic with us!
 
I believe when the fear of knowing what to say or do and the fear of our loved ones passing on keeps us from the most wonderful experience in every way that our hearts will remember for many years to come!
 
All faculties are working even when a person is in a coma.  I believe they need to be talked to, read to, remember the good times and say what was the most important part of the relationship.  We have no idea what an impact this makes on the person waiting in between here and there......
 
This has been my experience  in many, many visits that I have made the effort to go.  Even the ones that I was prompted by the Holy Spirit to go to.  I know that seems eerie but it is so true.
 
Once again Steve, thank you!  You are our wonderful brother with much experience to pass on to us.  Love Helen, your sister on the East Coast! hugs
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Craig76 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 29 2012 at 10:02pm
I so agree with both of you on this subject.  I was with my best friend Melissa as often as was allowed.  She was only in the care of hospice for two days but probably should have been in their care for the last month or so of her life.  As with your experience Steve, nobody predicted that she would leave us that quickly.  But before she did go through Hospice I made sure she was happy...brought her magazines and DVDs and I was just there for her.  It was really hard to see her in the state that she was in.  She was so beautiful (like Miss America beautiful) and this cancer just destroyed her...but to me there there was no other option...I had to be there for her even when it was hard to see her like that.   Frankly I cherish those last days I had with her...those memories are so very important to me.  Then when she actually went into Home Hospice treatment she came home from the hospital and did not wake up much.  As hard as it was to be there and see a person I loved go through the last moments of her life, I know that it would be so much harder to deal with if I was not there for her.  I honestly think I would be in a much worse state if I had not been there, or help her through her battle with cancer.  Guilt among other feelings would have plagued me for the rest of my life.  Helen I also agree that there are facilities going even when it seems the person is not there.  In my experience I could almost pinpoint the time when she was still there and when it seemed like she left us.  But when I had those thoughts that she was not there, even though her vitals were still going, I still talked to her and joked around with her daughter about the good times we shared.  I know she heard us.  We never left her side and I truly believe that it helped Melissa pass on.  One thing I will never forget is when Melissa's mom whispered into her ear that it was okay...that she did not have to fight anymore.  Hours later she was gone.  These things were really hard to witness and experience...really hard...but if I hadn't been there for her....well now I am repeating myself...but I really want to stress this point that as hard as it is...it is much harder to deal with guilt of not being there.  I can handle the hard moments I went through because I know I was there when she needed me the most.    Thanks for bringing this up Steve...as tough of a topic as this is it is a necessary topic that should be discussed more often. Oh yeah..I also saw Safehouse...I thought it was pretty good...predictable...but good...though I like most Denzel Washington movies. :)

Edited by Craig76 - Feb 29 2012 at 10:04pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Feb 29 2012 at 11:55pm
Craig,

So good to hear from you. Thank you for sharing.
Just the other day I saw one of your past posts and was thinking about you and Melissa's daughter
and Melissa.
It must have been difficult to be with Melissa and do all that you did for her.......one wants to do
all you did......just recognizing it is not easy although one wants to do it.

Please continue to keep in touch.

With very caring thoughts,

Grateful for today...............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2012 at 12:11am
Dear Craig,

thank you for writing so openly and beautifully about Melissa’s last days. I believe I wrote on another post some time ago that you are a beautiful man and you are. Your support for her and her daughter has been inspiring to all here.

Everyone’s experience on this journey is different and I am hoping more folks in our marvelous family will share some of their experiences, as well. I think it a healthy way to get some of the feelings out that often are not expressed. 

I believe there is a gentle and spiritual quality on this board that makes such poignant remembrances possible because all her will be received with warmth and love.

..................

Dear Helen and Judy,

my heart is with both of you

....................

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2012 at 5:19am
thanks to u all for your loving thoughts. suec
tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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