Mesothelioma

My Dad was diagnoised with Mesothelioma, he is in his late 60's. I know its not curable and treatments are about prolonging life or palliative care but I have no idea whats going on with my Dad. Its still doesnt feel very clear, thing is I cant tell if the Doctors are holding back on info or if he is or its a combination of the both.

He went to Papworth a few weeks back and it turns out they were using a CT scan from before his first procedure he did in August. When my Dads wife noticed this and said shouldnt he have a new scan they decided that he should have one. So the next day he travelled back to Papworth and had the CT. The following week he went back and it seems Papworth wont be able to do a trial op on him so he's now referred to his local hospital for Chemo. It appears no one has said what stage its at. I feel like we know no more than we did when they first diagnosed him about 8 weeks a go....is this normal??

Sorry for the ramble

  • Hi

    Welcome to the forum and hope you can find some support here during this difficult time for all the family.

    My husband had mesothelioma (diagnosed aged 60) and it took roughly five months of various tests, scans, consultations before they could offer a full palliative treatment plan.  He was not a candidate for surgery but was offered chemo in the hope that this would help prolong his life though of course there were no guarantees.  We never had a 'staging' and to be honest not sure this would have useful as we were well aware there was no cure.

    Not sure if it will help but my husband could not talk about his illness very much as he found it hard to deal with the emotional side of it and was in 'protect family mode' (our children were 27 and 30 at the time). Please do come and chat here as there are some wonderful people who offer unconditional support no matter how you may be feeling.  The main website also has some information on Mesothelioma.  It's a lot to take in for all of you and your Dad may just need a bit of time to get his own head around his diagnosis.  Take care.  Jules54

  • Thank you Jules54 for your reply and I'm sorry to hear your husband had mesothelioma - I cant imagine how that must have been for you xx

    I'm finding it hard because my Dad has remarried and for whatever reasons, I dont really know her very well even after a number of years and it feels hard to go to her direct. My Dad will tell us stuff but not sure if hes being selective. Its a hard situation for any family but when parents have remarried it can make it difficult to feel a part of his new family (I'm 45 and my brother is 42 - dad's step daughters are 19 and 20)

    Thank you again for taking time out to reply x

  • Hi

    It must be difficult to deal with a 'split family' situation but hope that both you and your brother can get to know what is going on with your Dad  and I am sure the new family are also battling with mixed feelings as to how to deal with this diagnosis.  It is just a very hard situation to face especially when you have no real clue as to how Dad is progressing.  Hope that once your Dad has collected his own thoughts (took my husband  a while with so much to understand) he will share things more openly with you all. Personally I had to wait until my husband felt able to share and we lived in the same house!   It is unfortunately a case of probably letting your Dad find his own way though I know how frustrating this can feel. 

    Wishing you all the very best.  Jules