First MRI since radiotherapy with cyber knife

[rodneyd]

Hi Tina,

You still seem confused as to whether you want to continue your one-sided relationship with your UK friend.  Since I am an engineer, I like to list concerns for consideration.  Please consider the following as you struggle with your decision.

1.  I don't think I have ever intimated that you were in any way wrong in your actions to support a "friend" who is suffering from a debilitating condition.  You seem like a warm, caring, person, who only wants to help. 

2.  But, your "friend" seems to have been sending you mixed messages all along.  Sometimes he ignores you, sometimes he tells you he can't be your friend and sometimes he thanks you and tells you how important you are.  But, in general, from what you have said, I think he has been pretty clear that you will not be a part of his life.

3.  He allowed you, at great financial hardship, to come and visit him.

4.  He sexually used you on the first night (as you indicated, your "intimate" relationship was more like a rape, and you had the bruises on your legs to prove it).

5.  Then you were summarily moved out into the solarium, where you were provided minimal heat and kept locked up like a virtual prisoner.

6.  He forced you to stay in another bedroom for the duration of your visit.

7.  He left you alone for hours on both Saturday and Sunday while he visited his doctor and his friends and kept you locked in his house like a prisoner while he did so. 

8. He broke his promise to take Monday off to be with you. 

9.  Now he is trying to justify his (In My Opinion) outrageous and totally unacceptable behavior towards you.

10.  I don't, for even one second, buy his story about having the video camera in his bedroom for security purposes.  He might have some outside the home for security, but not in his bedroom.

Actions speak louder than words and I would be very leery of anything he tells you.

I truly hope you can see what Keith and I have been telling you and that you break off this one-sided relationship and move on with your life. 

Good luck, Tina, and God bless you as you move forward.

Rod 

       

[photog1]

Thank you, Rod, for all that you wrote.  I totally agree with what you said, too.  What a coincidence that the UK guy is also en engineer, runs a manufacturing company that makes construction products.  The guy isn't writing to me anymore and neither am I.  It's very tough, though, to try and go on from what certainly sounded like a promising relationship.  It has defined this entire year for me. 

I lost a very close boyfriend 5 years ago to heart disease.  He passed away suddenly after our having a 4+---year relationship that we both wanted to have end up  in marriage.  I got over this man after I met the UK guy and got to know him and feel more comfortable with him.  I don't believe the UK guy telling me he can't move on since his divorce from the love of his life 8 years ago.  Especially since I (accidentally) found out he is back on the same dating site on which we both met!!!  And, he had also told me, that fateful night I was banished to the guest room, he is not looking for any relationships in the future, due to his believing he doesn't have it in him to sustain one. 

I pray every day to have the strength to go on and get through each day as best I can.  I am going through a massive loss all over again for the 3rd time (first was when my husband died in '93).

Feeling awfully tired and have been having too many heart palpitations since the big fight with this snake last week.  I have a heart murmur.   

Can't thank you enough for all that you've taken the time to write to me here.  The same goes to Keith, too. 

I do feel very embarrassed over all that has been said here, with it being on a public forum.  Terrible. 
Tina

[ANGuy]

I don't see what any of this has to do with AN's at this point.  Actually, that point was reached a long time ago, if it ever had anything to do with AN's.

[photog1]

I agree with that. 

Thank you.
Tina

[photog1]

Wait, this HAS been about an AN!!!  A 56-year-old man being diagnosed with a 1.7 cm AN early this year and was treated with Cyber Knife on 2 different occasions, 2 months apart.  He has had the full dose of CK, so he can't have any more.

On many occasions, I have wondered if he has been afflicted with symptoms of serious cognitive behavior due to those treatments!  He has not been the person I first knew, since those 2 treatment sessions 2 months apart.  His AN is still swollen since before his 6-month MRI in August and he is unable to tolerate the symptoms.  His driving is still limited.  Knowing him in person now, I have seen he is a very sensitive person whose tolerance level of this affliction is not what he wishes it would be. 

I can only hope and pray, for his sake, that the swelling starts to go down in the near future. 

I wanted to do what I could to help him in some way, because I cared about him.  So, I took it upon myself to learn all I could about AN's and all they entail.  Through my posts, I have learned a wealth of information through this discussion forum.  It was suggested to me last spring, by the ANA, to join the forum, for this purpose.     

Thanks to all who have helped me by posting a lot of valuable information on my thread.  This has been an unforgettable and positive experience for me and the guy in the UK has thanked me, as well, for my help and support.  It's too bad, but it is his loss that I will be unable to help him anymore.
Tina   

[rodneyd]

Hi Tina,

I agree with ANGuy that the situation with you and your "friend" has transcended this discussion forum in that it is no longer about his AN, but more about your relationship and expectations.

It might be worthwhile to continue our discussion on a different forum.  If you like, please PM me here and we will see what works best.

Rod

[photog1]

I didn't think I would send any more posts on my thread, but aside from my ex-friend who has still been dogged with side effects and swelling from his 2 CK treatments 2 months apart (and not taking it very well), he did say something to me during my visit ----- that he has a brain tumor.

I wondered why he would think he has an actual brain tumor.  I never asked him about this.  But, have thought about it since my return from the UK.

I'm doing okay now, by the way.  Thanks, Rod, for your input and help, although I wish you could have pm'd me with that very strong advice and comments, given the confidentiality of the matter.

Isn't an acoustic neuroma a tumor that is located on a nerve leading to the brain?  That has been my understanding all along.  What I'm trying to find out is, can an acoustic neuroma also be an actual brain tumor?  That would mean it would have to be on the brain itself, as far as I can tell.

Has anyone's acoustic neuroma also become a brain tumor and if so, what has your journey been like??? 

I never knew what an acoustic neuroma is until I met that guy.  Even though I'm not in contact with him anymore (I had a big fight with him), my desire to learn more about acoustic neuromas hasn't left me.

Many thanks,
Tina       

[photog1]

Hello,
It's been a while since I last posted to this site.  I have continued to keep up with the many posts on here, I'm still interested in keeping up to date on AN's and how they affect people who have them. 

I wish I could report something new and positive about my old friend in Great Britain, who was diagnosed with his AN in December 2013.  We don't communicate anymore, but it has pained me a lot, knowing how much he's been emotionally and mentally affected by his AN.  I believe he has some memory loss from his tumor, as well.  To be affected this way must be the most challenging issue any AN patient has to deal with.  I know it's been exceptionally difficult for this guy, given his particular line of work.

I know now that the way my visit with him went, last fall, was due only to his tumor and the many issues he had not yet been able to deal with.   

My prayers continue for this poor guy.  He had a big, positive impact on my life.  A nice relationship that started between us a year ago was shattered by this tumor and the way he has been affected by his 2 separate CK treatments, 2 months apart.  His first CK treatment began almost a year ago now.  His tumor started out at 1.7 cm in size.  As far as I know, the tumor is still swollen.  When I visited him, he told me he refused to take the steroids again.  He believes he will die from this thing.  I feel terrible, and depressed, over my failed attempts to comfort and reassure him that there is a lot to hope for ahead of him.  I learned that from this site, and I thank those here who shared so much of the positive information I was happy to pass on to him, to help better his days.  He is only 57 years old, still a young man.   

Thanks again to you all.  I send my best wishes to everyone still experiencing their AN challenges and I wish you well. 
Tina

[Mimispree]

Hi Tina:

I'm touched by your email about your "old great friend in Great Britain."  It's true that these tumors touch everyone around us not just the "owner."  Keep sending your hopeful message because it will seep-in the cracks of his unhappiness and it will help him.

You're a lovely valentine to all of us today.  Kiss yourself for us!

Love,
Michelle

[photog1]

Thank you for your heartfelt response, Michelle.  It really lifted my spirits.  And, you're the patient.  It sounds like you have been going through a lot yourself since your surgery only 6 1/2 months ago.  But, it seems that you are doing well.  A sense of humor can do wonders.  That, plus a positive attitude.

I only wish my former friend could have the same attitude as yours.  I always kept Paul W's advice in mind, that 90% of the battle is a positive attitude.  I often told my friend this advice.  I think that by the time we visited for the first time, he had lost a lot of confidence in himself and his sense of humor.  To witness this in person was quite different for me than what I could envision from his e-mails and phone conversations prior to my going over there.  It was downright shocking.

While there, I noticed whenever he used his i-Phone to take calls or make calls, I could see something extending from below the phone.  I don't know if it was an extra hearing aid of some sort, but it shows up in pictures I took of him using the phone.  Also, he said he refused to take the steroids anymore.  He had taken them for about a month last spring.  I asked him, last August, what size his tumor was after he had his 6-month MRI and he wouldn't tell me.   I can't imagine why.

How is your facial paralysis by now?  My former friend didn't want to have the surgery, fearing facial paralysis.  I sometimes wonder if his doctor(s) who did the CK treatments are very experienced at this because before his treatment began last February, he thought it all would be just a piece of cake and the tumor would shrink, no problem, and he'd be done with it all.  He wasn't prepared for what lay ahead of him in the way of possible side effects after treatment, but I remember he was scared before his treatments began.  I guess, who wouldn't be?  He did say he may be absent from work for a while.  He has the kind of work that doesn't make it possible for him to miss work for long (owner and manager of a manufacturing company).  Also, he's a mechanical engineer.

So, I can imagine how stressful it has been for him, all this time, to still have the tumor swelling.  It appears he wasn't prepared for how long this could take.  It would help him a great deal if he had the positive attitude that you have.  And, laughter is the best medicine. 

So, he does need lots of prayers and I pray for him every day.   That's the best I can do for him.

Take care and I hope your healing is going well.  God's blessings to you.

All my best wishes,
Tina   

[photog1]

Michelle (Mimispree),

I sent you a personal message.  Hope you received it.

photog1
(Tina)

[photog1]

I haven't posted here in a while, but continue to be touched by the number of viewings of my posts regarding my old English friend who, as far as I know, still suffers from swelling of his AN, more than a year after his second round of CK treatments.  It is a most unusual story about his ordeal, going from a confident director of a family-owned company to a man who has become very unsure of himself and has lost a lot of his self confidence.  He is a very emotional person to begin with.  He greatly appreciated my learning all about AN's and what they entail, through reading the many postings on this discussion forum.  All was okay for several months after that, then my traveling to the UK to visit him changed things for the worse in ways I can't put into words.   We haven't been in touch in months, so I don't know his current status.  He doesn't want contact with me anymore.  Can't understand or explain why.  He's a very complicated and complex person.   I can only pray for him to have a good recovery and, in time, be back to his old self, if that is possible.  For his sake, I hope it is possible.

It has been an extremely difficult ordeal for me, as well.  It has sapped a lot of energy from me and I am trying to channel my interests in other ways.

I wish the best for you all.  God  Bless You.

[ampeep]

Hi Tina,

Was wondering how you were doing since this past Feb; good that you're attempting to channel your energy in other ways.

Take care

[photog1]

Thank you, ampeep.  I don't know exactly how to say this, but although I don't have an AN myself, I've found how much a person, who is close to an AN patient, can be adversely affected by that person, because of the tumor.  His tumor has affected me as much as it has affected him.  As I've seen it written here, no one asks to have this tumor.  I can't imagine what it must be like to be afflicted with that, also how difficult it must be for someone who is alone and still needs to go to work, plus manage things alone at home.  He did those things rather well, from what I saw during my visit last fall, but he just couldn't travel places, drive his car much except in town.  He wished, desperately, that he could take a vacation from work, and probably also escape from his affliction.   

I'll always wonder why his doctors told him, in early April last year, that he could not travel for the rest of last year.  He was to travel here for us to meet in person for the first time, he was looking forward to it, then he got that news from the doctors.  He wrote to me, told me he was shattered.  That is why I was the one who traveled to the UK, instead.     

[ampeep]

photog1,

For someone who doesn't have AN, you must know a whole lot more than most people about this condition! It's weird that his doctors told him he couldn't travel. I've been on many trips pre- and post- GK that have involved plane rides of 10+ hours.

I think that you've done all that you can for your friend; you should do what's best for you.  This thread has been interesting in terms of how people deal with AN.