Hi Wendders and welcome to the forum, although I'm really sorry for the circumstances under which you find yourself here.

I just wanted to put you in touch with one of our more regular members, [@jules54]‍,‍ as her husband sadly passed away from this diagnosis but may be able to help you at this time. Now I've tagged her in this post she'll hopefully pop by when she can to share her experience with you.

In the meantime I just wanted to share some general information we have about mesothelioma on our website as well as what to expect in the final days. Due to what is being discussed in the latter article I just wanted to warn you that it can be a tough read so do only read it fully if you feel you are ready to do so or maybe have someone with you when you decide the time is right.

I hope this helps Wendders and my thoughts are with you at this difficult time.

Kind regards,

Steph, Cancer Chat Moderator

Thank you very much Steph x

Hi Wendders

Have just seen Steph's 'tag' so wanted to pop by and say hi.  Welcome to the forum though of course it'ssad that you find yourself here.  When my husband was diagnosed we were told that Mesothelioma lies dormant for many years and if it becomes active the length of time we have with loved ones could be anything from weeks to years. In our own case it was nearly a three year journey with this terminal condition.  My hubby always desribed his pain levels as bearable and was well monitorred by palliative care/GP and community nurses and he remained at home throughout.  Once he was no longer managing fluids (had been on them for some weeks as could not manage solid food) and had the syringe driver attached for medication to help with his breathing noise he passed away within 5 days after telling me he jjust felt very tired.

Sadly there are no words that seem to make it right/better for those who suffer and grieve and only his medical team will be able to give an approximation as to when he will pass away.  That being said  I asked his doctor on the Friday evening for some guidance (hubby did not wish to know) and was told probably within the week.  It was actually just over 24hrs later.

I hope you and the family have good support but if you have questions I will do my best to answer them if you need to offload anytime on the forum.  Jules54

Hi Steph,

I had posted a response to Jules yesterday (thank you so much Jules for chatting) but it isn' showing on the forum.  I just wondered if the responses are vetted and then approved for posting, rather than being shown automatically?   Suppose I'll find out as soon as I hit 'post now' on this one.   I wouldn't want Jules thinking I'm ignorant after her taking the time to send such a lengthy message. 

Thanks 

Hi Jules,

I'm sorry I don't know what happened to my initial response to you.  

Thank you for sending such a lengthy reply.  I'm so sorry for your loss.  It is so admirable that in your grief you are still trying to help others.  

I hope I don't upset you when I ask if your husband' had long pauses between breaths for a long time before he passed away?  My dad can take 8-10 breaths and then a long pause of between 9-14 seconds before he starts breathing again.  He's been doing this for 6 nights now. At times he can still be chatty though.   Did your hubby steadily decline once the driver was on.   Had he had the breathing pattern I've mentioned above for any great length of time?

Thank you Jules.  Again, I'm sorry if this question upsets you xx

Hi  Wendders

Please no apologies needed for the 'disappearing' post.  It can happen sometimes and also not everyone comes back.  It is what makes the forum 'tick' because you can put your thoughts out there and people who want to will respond.

I have never really had a problem with talking  about hubby's illness/death as in my own case this has helped with the grieving process though I understand it is not for everyone. His breathing was slow but steady for the most part (had only been what I would call breathless when he was mobile and had to take things very slowly then).  He was not on the driver for long and his breathing did not actually change until about five minutes before he died.  During his last day we had the children and grandchildren round plus other visitors who had expressed a wish to see him (he was in a hospital bed in our lounge and joined in with conversation when he was not sleeping (the sleeping times got longer during the end of his illness). To be honest we pretty much carried on as normal around him because this was his wish and he spent a lot of time watching tv which probably helped lessen our awareness of his breathing.  The biggest noticeable change that I picked up on was that he did not need to use the commode in the last 8hrs and was told later that this was part of his body slowing closing down.

It can be very difficult at times because it is the 'not knowing when' and I am not sure anything can really prepare you fully. Take care and hope you are having the necessary support to assist you alland keep Dad as comfy as possible.  Jules x

Thank you again Jules.  I really do think you're a special sort of person to be able to talk so openly about your beloved.   It helps me to hear your story and I'm grateful for your honesty.   I wish you well xx

Your kind words are appreciated Wendders.  This forum was/is a massive support for me and amjust doing what others have given me in the past years.

Remember to look after yourself too during this sad time.  Jules x

Hello [@Wendders]‍, So sorry to hear about your dad. My dad passed 9 months ago from stage 4 non small cell lung cancer. Like your dad, my dad had Cheyne-Stokes respiration which is similar to Sleep Apnea. Unfortunately, my dad had this abnormal breathing pattern for about 4 days prior to his passing. On his final day, I woke up at 6AM and dad had 55 breaths per minute which was excessive! I tried to give him oxygen, nebulizer, etc. Nothing seemed to help so I then started MINIMAL morphine and ativan as per the hospice doctor's order. Looking back, I'm not sure if it was the best thing to do as dad remained sedated for the remainder of the day until he passed at 8:45PM however I surely didn't want him to panick or suffer in his final hours so I'm thankful to have had the medications on hand. My dad was diagnosed on February 22, 2017 and passed about 17 weeks later on July 1, 2017. Please leave nothing unsaid. Make sure you tell your dad how much you love him and how great of a dad he's been. Please ensure him that if he wants to "let go" or "go to sleep", he can. I reassured my dad on several occassions that he can "go to sleep" if he wanted to and that I'd care for mom. All the best to you and your loving dad.