Hi Everyone~
I haven't been on in a while, there hasn't been any significant changes with Dad. His is on a boat load of medicine, but we have complete control over his pain. But, the confusion, fatigue, dizziness continues. He's gained almost 10 pounds since entering the VA which shows he was not eating well at home, and also that he enjoys the food! He did try to escape and made it down 3 floors to the parking lot, before they found him. He now has an ankle bracelet to trip the alarms. It amazes me that he had the strength to do that because he is so weak.
I got them to check his Digoxin level, which came back normal, at least I can scratch that off the list. I wish I knew if the meso was spreading, but Hospice won't do a scan, they say it's pointless. It's been 8 months since his last chemo and lung sounds still remain unchanged. I've tried to find some info. on how long it can take before it gets active again post chemo, just to know where were at. All I ever find is the median survival time of 18 months.
I wish that his mind didn't go before the body so I could have kept him at home, I know that's where he wants to be and I feel so guilty, but he is unable to rationalize what is going on. I'm still doing this all on my own, my brother went with me 2 times to see him and that was it. I should have known better than to get my hopes up.
I am having regrets about putting him on Hospice too soon, and that maybe they could have found out what happened to his mind, and fixed it.
If I pull him off now, he will have to be moved to another unit, which will confuse and upset him more, and all the testing will start again, but if they find its active again, there will be no treatment. I just don't know.
Thanks for letting me vent, take care, Diane.

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.

Hi Diane, there is no rhyme or reason to how meso behaves. I agree, it is awful to watch your dad slipping away and not be able to communicate his wants and needs. You have the increased burden of being the sole caregiver with little input from family to reinforce that you are doing the right thing for your dad. If he cannot tolerate chemotherpy and he is definitely not a candidate for a clinical trial then you have done the right thing. There is no way you could manage this at home, it would be unsafe for him and also for you. You can continue to be a comforting presence and provide him with a daughter's love which is a precious gift. I am sure you observe many rooms where no one is present with the exception of staff. You are a good daughter and deserve credit for being the one who stood up to this task rather then run from it. Mary

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Mary Hesdorffer, NP
Medical Liaison, Mesothelioma Foundation

Diane- I wouldn't second guess the decisions up to this point. What Mary is saying I think hits the point. I think you have done a wonderful job for your Father, especially with no help. I know what that feels like and the nagging thought that you have to do more is always there, but almost always proves not to be true. Hang in there and Stay Strong Mike

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Mike, Partner/Caregiver of Lisa, dx 3/06 peritoneal mesothelioma

You can't beat yourself up at a time like this. Concentrate on the positive aspects that have happened since dad went into the VA hosp. You have been a dream of a daughter and done the very best you could, especailly without input from others. Glad to hear he is gaining weight, you would have not had such good results if he had stayed in house.
Take care of yourself,

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HUGS
bonnie
Peritoneal survivor 10 YEARS

I can only agree with what Mary, Mike, & Bonnie have said. Please don't beat yourself up & or second guess yourself now. You're Dad's in a good, safe place as he should be. You've been a great daughter/caregiver, especially shouldering the entire load alone. Stay strong & take care of yourself too.

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Janet, Mom/caregiver of peritoneal survivor dx 12/05

Hi yes i know how you feel they wont scan my dad anymore so we dont know if its advanced anymore, today he went in to have second lot of fluid removed to be told there is no fliud its the tumour so that was pointless

It sounds like you are doing a wonderful job.  My dad went fairly fast at the end, once we knew it was spreading, and it was pretty hard to have him home for that time.  My mom was able to take FMLA and be home with him all the time.  He was still strong, and starting to lose his mind, and it was always on the forefront that if he didn't stay mostly under control he would need to go back to the hospital.

Also, for as many times as he said he wanted to go home, he was actually terrified when he left the hospital.  It gave him comfort, I think he believed his pain would be better controlled in the hospital, he'd have better care if his breathing became a problem (a big fear of his).

You are really doing a fantastic job.  I was exhausted by being a caretaker, and I was only secondary, my mom was primary.  To be doing it all yourself, I really commend you.

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Kelly, daughter to John - sarcomatoid pleural meso
1947-2009
Contact me: kdill168@hotmail.com

Thanks Kelly for reaching out despite your own painful experiences to share and support Diane.

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Mary Hesdorffer, NP
Medical Liaison, Mesothelioma Foundation

I have read all of your posts over and over. Its about the only reassurance I've had and it helps more than you could know. Thank you so much for sharing your knowledge and experiences you and your families have been/and are going through. Hang in there everyone and I'll try to also.
fondly, Diane

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.

Thats terrible Lynn. What a let down, I'm so sorry. I can just imagine the frustration :(

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.

Diane,

I definitely AMEN everything that has been said on this post. 

Blessings to you & your father,

George Landes -   Perito Meso (DX November 2009 / HIPEC Surgery May 2010 / NED Sept 2011)

Hi just an update my dad has been on steroids and eating well etc but today i spoke to him and he is having alot of pain in his head and neck shooting pains and feels like his legs are giving in on him, are these pains common in pleural meso

sorry posted this in wrong place

Hi Lynn, if patients are on steroids for prolonged periods of time it affects the quadricepts muscle which is the muscle that you use when easing yourself out of a chair and climbing steps this may be the issue. the steroids can also be attributed to headache Though rare, brain metastases cannot be excluded and this can be a medical emergency. Alert your MD to these changes and he may want to order an MRI (superior to a CT scan) of the head to look for a possible leison. These are the two most probable causes of these sympstoms

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Mary Hesdorffer, NP
Medical Liaison, Mesothelioma Foundation

Hi Lynn,
My Dad was on steroids too for about a month, but they took him off because it was making him anxious/agitated. But it did help for a while, he also had neck, shoulder, and arm pain. Dad also complained of his legs feeling like they were going to give out, probably because he had so much fatigue. This is not meant to discourage you, but I wanted to you know that we experienced this also. It's good to hear that your Dad's eating well. Maybe a good chance to spoil him with his favorite foods? Keep us posted, always with you.
Diane

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.