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my husband has mesothelioma 
Started by heather101
23 Aug 2016, 5:07 PM

my husband was diagnosed with mesothelioma about 2 years ago. He is slowly deteriorating but sometimes I'm not sure. His whole world is himself. All he can ever talk about is his pain and discomfort but when I tell him to take more pills hes says hes fine. Im never sure how to deal with this. I wish I could find someone thats in the same boat as me to talk
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Reply by KathCull_admin
23 Aug 2016, 10:51 PM

Welome Heather101
I am glad you found us - there are no quick fixes - but sometimes a listening ear and understanding heart can make a difference in how we manage what life sends us. dorms, one of our community members started a thread with a name very similar to yours - Husband has Mesothelioma -  I am going to leave her a note on that thread to let her know you have posted.

Does your husband have healthcare providers who are able to help manage the symptoms he experiences? Are you able to be part of those discussions? 

Look forward to hearing from you again.

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Reply by heather101
24 Aug 2016, 3:25 PM

Thank You Katherine, Yes there is a palliative nurse that comes weekly and a Dr but he always acts so much better when they are around. I am a part of those discussions, which helps me to vent a bit. I just feel angry sometimes when he isnt real with them. Thanks for linking me  on with another person in the same situation  Heather 
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Reply by dorms
25 Aug 2016, 12:58 AM

Hi Heather  my husband Lynn passed away last summer with mesothelioma. He was a very strong man & I'm sure he was in more pain than he often let on. He never accepted that it was terminal. So a lot of things never got discussed that should have. He had a lot of help from WSIB as his illness was caused from his work. They made sure he had every convenience he needed & good home care & he had very good care in hospital. He was only in hospital 8 days before passing on. But he fought this disease as hard as he could. The WSIB nurse from Toronto flew up to visit him two months before he passed & she asked me who I had come in to sit with him when I had to go out. Before I could answer her Lynn pipes up & told her "I don't stay home, I go with her"  She was surprised at that. Near the end he'd stay in the van but usually if the store I was going to had those carts that he could drive around the store in, thats what he'd do. He was on oxygen for the last 6/7 months. We were camping the day before he went into hospital. We had a small motor home & he liked to go to Country & Bluegrass music festivals. Thats what we were doing for the week before he was hospitalized.

My daughter & I were not prepared for how fast he went downhill after being hospitalized. I sometimes wish he were still here but then I think of the pain he'd be in & am glad he didn't suffer long. I miss him so much. I still find it hard to believe that he's gone.

Heather if there is anyway I can give you any help please you only have to ask.

Stay strong.


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Reply by dorms
25 Aug 2016, 1:04 AM

Heather -Lynn found that if I rubbed Voltarin Emogel on his back it seemed to ease the pain a bit. I'd put the tube in hot water & warm it up first.

Lynns mesothelioma was around his right lung. So he'd have pain in his back

Hope this helps


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Reply by JennJilks
25 Aug 2016, 1:46 AM

What a difficult time for you all.
One of the things I've found in my volunteer work is that many men feel they need to be strong and silent.
I feel for you.
There is no reason, in this day and age, to be in pain.
I don't know if you can convey this to your man. There is such an impact on family. This may be the way through...
There are signs of pain, that he might not recognize. My dad's care staff didn't get it. 
I wish you all the best.

Symptoms of pain
Loss of appetite, anxiety, bleeding, constipation, cough, confusion, dehydration, depression, diarrhea, dysphagia, dyspnea, hiccoughing, intolerance of sheets on their legs, sweating, nausea, vomiting, pruritis, insomnia, mouth pain, skin problems, seizures, urinary frequency, weakness.
Watch for changes in expression, a change in behaviour, physical, intellectual, emotional spiritual pain:http://www.jilks.com/Ray/Ray-Images/99.jpg

  • being very quiet or moaning, rocking

  • being friendly to now being combative

  • from being cheerful to being sad

  • eating well then refusing food

  • sleeping well to insomnia

  • gestures: wringing of the hands, fidgeting with clothes, "pleating", clenching fists, flinging arms about, reflexive jerking, rubbing a body part, rhythmic body movements (banging on a table)

  • holding onto a chair for security

  • tossing and turning in bed

  • changes in body posture: slouching, slow shuffling, tense posture, rapid gait, tense sitting or lying positions

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Reply by KathCull_admin
13 Nov 2016, 12:52 AM

heather101, Just wondering how your life has been unfolding in the last few months. I know that things can change in a short time. 

Dorms/Dorothy how are you doing?  

JennJilks  how was your summer/fall? Things stable for now?

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Reply by dorms
13 Nov 2016, 5:29 AM

Hi Katherine  I'm doing Ok. There are still some hard days to get thru as its hard to be alone but I go to yoga classes three days a week which gets me out of the house & I get to talk to other people in the classes. It has helped a lot. I've started crocheting afghans which I hope to donate to the cancer centre after I get a few done. When my husband started chemo they gave him a beautiful afghan which he was very pleased to receive so I thought I'd give this a try. One of the girls at yoga does the same thing & she was told how much the patients love the afghans & I was able to tell her its so true. I'm still in my home. I think I'll stay here as long as I can. My daughter comes over every friday on her day off & we go for lunch & sometimes do some shopping. Thru the summer  I went with friends on a couple short trips & seen Charlie Pride  on one trip. Its been very hard having to drive long distance by myself but I did make it down to southern Ontario this sumer to visit an aunt. I felt pretty good about it after I'd done it but I still don't like driving.  Now that winter is coming I'll be staying close to home. I appreciate hearing from you & reading about how we're all struggling with the things that life hands us. So it's one day at a time. Some days go fast some don't.  Christmas is coming up fast &  I'm not really looking  forward to that. My husband Lynn loved Christmas. He liked to put up a lot of lights outside, the more the  merrier. Thank you for your interest Katherine.




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Reply by dorms
13 Nov 2016, 5:38 AM

Hi heather101  I was also wondering how you are. 


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