Husband with sarcomoid mesothelioma

Hello. I wonder if anyone has had anyone close to them diagnose with this disease. 

My husband was diagnosed in December 2019. 

This came as a devastating shock to us all. 

He was due to have an ablation of the heart, when a chest x-ray revealed a mass. 

A biopsy revealed the above. A pleural drain was in for 6 weeks  

Since the diagnosis he has never been out of pain  

He did not opt for Chemotherapy, just for palliative care

Neither did he want to know the prognosis. 

I was told that it is stage 3B, aggressive, incurable  

This has hit us hard, and my husband harder. He has hardly moved from the chair since diagnosis, and is now in a profiling bed in the lounge  

Appetite and fluid intake are very little  He is sleeping most of the time.

 

Weight loss is rapid, it is heartbreaking to see  

Always a man of very few words, he hardly speaks now  Drugs have meant that he has lost much of his voice  

He is on 2 antidepressants, Morphine and Methadone.

 

 I am wondering if anyone has experienced this at all.. We are very worried for the future and whether we can help him in any way. 

Obviously Covid 19 has meant we cannot go out  

My daughters and I are so worried, we don’t know what to expect so that we can help make him more comfortable.

Any help/advice will be most helpful. Thank you in advance  

 

  • Just read this post, yes my dad had so much pain. We looked into pain numbing injections, I cant remember his name but he offered some sort of pain injection to cut off the signals. My dad never pursued it cause he didn't want to travel. Maybe your local pain clinic could advise? We also looked at heroin subsitute, cant remember name of that either, hospice suggested trying it. Not sure why we didn't pursue radio therapy but looking back it might have helped with pain X

  • Thank you so much for this. I am very grateful. My husband has opted for palliative care only. 

    He doesn’t want to talk about anything to me and my two daughters which makes it very hard. 

    He will not travel either. 

    I am doing all his personal care, and seeing to his bed sores. 

    He hasn’t really moved from chair and bed for 5 months. 

    Unforturtunately he doesn’t believe in exercise to try to help himself. This all makes it so hard. 

    If the pain becomes unbearable for him I will remember these medications that you have suggested. 

    Thank you!

     

  • At present I am struggling to cope. My husband is very poorly, and I am doing everything that I can for him, but I cannot understand the reason for it, but he seems to ignore me when I ask if he would like anything to eat or drink, or ask anything for that matter. 

    He is very different when the nurses come to help for bed care, and jokes, and is amiable with them  

    I cannot understand it. Is it the meds? It seems as if I have to pay for his illness, but I don’t like to think of that as the reason. 

    We have been married 49 years, and we are both 70. 

    I have to leave the room sometimes to cry to myself, because I feel like I am being punished. 

    During our life, we have always been together, and I have always been responsible for the running of everything concerning the running of the home, because he wasn’t keen, so it upsets me to think of this happening when I know we are both so tired. 

    My 2 daughters are with us owing to lockdown, yet he doesn’t do it to them. 

    Does anyone else experience this? I love him so much and tell him so all the time. 

    It would help to know that this may be normal in some instances.