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Smudge1807 04-17-2009 02:03 AM

I don't know where to start, but my dad has mesothelioma.
My dad was diagnosed with mesothelioma in February. He started to tell the gp's in October that something was wrong. They kept telling him to up his asthma medication. He has had 3 stints in hospital, a few days, six weeks and a few days. His lung has been drained 3 times, the second time took over 6 weeks to drain. I am watching my dad change so fast. I am watching my mum change too. Sometimes this seems so huge I feel nothing and other times I feel immense sadness. Today I spoke with a palliative care social worker who actually met my dad yesterday. I have seen the palliative ward where he may be at the end. I am feeling so mixed up right now that I don't know if that helped or not. We met with the oncologist last week and he thinks dad has 2-3 months before he gets very ill.
I have read some other posts and the stories are so similar - I had no idea.
I guess until something like this comes into your life you cannot know what it is like. I want our lives back to the way they were and I know that is something I will never have.

misE08 04-17-2009 08:45 AM

Re: I don't know where to start, but my dad has mesothelioma.
First of all I want to say how bad I want to wrap my arms around you and just cry with you. I know you are going through so many mixed emotions right now and it really doesnt seem real. If you read other posts you will see my father passed away July 9 2008 and it was THE HARDEST time of my life. Taking care of him, watching him go down hill, telling him goodbye etc. and it all happened so quickly. If i can give you a word of advice, please get an attorney if you do not have one...our oncologist told us this on diagnosis and if we had waited anytime at all we wouldnt have gotten where we are now because daddy passed less than a month after diagnosis. I am not one to sue for anything but this was my daddys wish and his life, it was worth a lot to me.
I understand the ins and outs of the hospital, the draining of the fluid, the watching your father go down hill and you just want to do all you can to comfort him and change things and you feel so helpless. Please, tell him everything that you feel about him, spend as much time as you can, take pictures, write things down, we cant go backwards b/c if I could I definetly would. Be thankful for this time, a lot of families do not get this opportunity to say what they really feel. You always feel this will only happen to other people, but when it happens to you it is all surreal. You will go through so many emotions and stages and please uderstand it is normal. It has been 9 months now for me and I still have really bad days where i am sad and mad b/c I can't bring him back. I struggle to get through the days, but know my daddy wouldnt want me to be sad and not find some happiness in my life to be able to live without him, that keeps me going. I know he is with me in my heart and when I find pennies during trying or happy times, I know that is his way of saying, "I'm here Mis".....It isnt easy to do, but you arent alone.

How old is your father and you? Where did he work? It is such a hard thing to diagnose it takes awhile to find it, then mostly it is too far to treat. Is he able to have treatment? Is it in his lungs or belly? I want you to know that if you need to talk to anyone, for any reason, I am here, you can private message me anytime. I wish I could do more to comfort you, but all I can do is pray for you and your family. This is so hard and you need compassion. My heart goes out to you and please feel free to write me.
God Bless you.

Smudge1807 04-22-2009 05:30 AM

Re: I don't know where to start, but my dad has mesothelioma.
Hi Missy, thanks for your reply. So many mixed emotions and not seeming real is so right. Dad was admitted to the palliative ward today for lung draining. He was in so much pain when we went in that we only stayed 10 minutes. I cannot tell my dad how I feel and what I want to say because I will cry and not stop. I have a lovely card and am going to write him a letter. Another reason for doing this is that dad is deaf and will miss a lot of what I said, so writing it down he can read as often as he wants.

I am 48 and dad is 77. He was an Industrial Designer working on household appliances and car design and then was a lecuturer in design and ran art schools. We have no idea where he would have come in contact with asbestos and it doesn't really matter as it has happened. No point in having treatment as it won't work and the tumor is in the right lung.

Thanks for your kind words - I feel for you not having as long as I've had with your dad. Will soldier on here, being on the end of the phone for my mum and staying positive for my daughters. My husband is being my main support and he helps so much.

gemini123 04-25-2009 05:18 AM

Re: I don't know where to start, but my dad has mesothelioma.
Dear Smudge,

I am so sorry to hear your dad, you and your family are having to go through this, Life seems so unfair and i wish i could change it all for you.

Please look after yourself too, i wish i had found a support group at the time to help me through, i found that my emotions crept up on me and i did not realise that i wasnt coping very well (this was nine years ago). Now there are mesotheliomia support groups.


Smudge1807 04-27-2009 04:47 AM

Re: I don't know where to start, but my dad has mesothelioma.
Hi Gemini
I too wish I could change things! Thanks for your kind words. Have had a long tiring day today. Spend the morning with dad and worked out when he could go home - he is in the palliative unit - has been there since Tuesday. Anyway this afternoon he decided that he has had enough and wants to go. I got a message from his nurse saying that he wants me to get my brother here (he lives interstate). My brother will be her late tonight. I arranged for mum to have a friend with her when I told her (she lives an hours drive from me). I have had my mum on the phone tonight hysterical and threatening to kill herself. My girls have been in with us tonight to see dad. He dozes a lot and his breathing is a struggle. I'm so sad for him. I want this to be over, but I don't want him to leave us - I'm sure everyone knows that feeling. We also have the funeral of a baby to go to on Wednesday - she passed away on Thursday aged 11 months. I am so tired and don't want to do this anymore.

misE08 04-27-2009 07:48 AM

Re: I don't know where to start, but my dad has mesothelioma.
If he is ready to go, it is best that everyone say their goodbyes, as hard as that is...I know you want it to be over b/c you are tired of seeing your daddy suffer.....I have been there, but you just dont want to really let them go and know you have to live without them here. I am so sorry, it all reminds me of my daddys last few 5 days he spent in the hospital before he left us. We had to keep him sedated b/c he was filling up with fluid fast and we didnt want him to realize it, and his heart rate started dropping that night and he passed. It is so hard, but I was glad I was there holding his hand and telling him I love him and will see him again someday. I wish I could give you more comforting words. You are right, there is no way to really pin point the ONE place that they inhaled the asbestos. I really hope you had an attorney, it doesnt bring them back nor does it take their place, but at least your family/mom would be taken care of....It is like a tribute for your father that he didnt die for nothing. I feel my daddy died because he wanted to take care of his family by working and providing and will continue to hopefully take care of my mom through our lawsuit. I am not one for suing others for no reason, but my daddy was everything and it was his request...
I will pray for you today that your days get easier and your father has comfort in his last days with you. May God Bless you (remember, he will never put too much on your shoulders than you can not handle).

Smudge1807 05-01-2009 03:03 AM

Re: I don't know where to start, but my dad has mesothelioma.
We let dad go Missy. He left us this morning about 15 minutes after we got to him. We all told him how much we love him, what a great dad he is and a great husband. Each of us told him that it was time for him to leave us and start his journey. We played the music he wanted played and held his hands and rubbed his legs. He wasn't really struggling as much as we thought he would thanks to sedation and then his heart just stopped. We checked on him last night and left him when he was settled - when we got to him this morning he looked 100% worse than 12 hours before. I am thankful that he is now pain and fear free, but do not relish the next stage of my life's adventures.

misE08 05-02-2009 08:03 PM

Re: I don't know where to start, but my dad has mesothelioma.
I am so sorry.....when I read that first line i had to stop and take a deep breath. I understand what you are going through and I know your feelings have to be similar to what I felt....GOsh, I wish I could say more. Just know that God will lend you his strength to get through these tough days ahead. You will go through stages, you will be mad, sad, not understand, think it isnt real and all of that. I still do, I hear it will get easier in time but I think for me the first year gets worse in time, but know there are people who care and I will be here whenever you feel down and need someone to understand. I do. You are in my prayers and that time of letting him go sounds so familiar. I wish you and your family comfort. I stole an idea from someone and made a tribute web site to my father, you may think about doing that too. I am glad you told me, but sorry of your news. Just please know I am here to chat with if you need anyone or just having a bad day and need to express it. private message me anytime. My heart goes out to you.....Missy

Richard Hanson 05-30-2009 12:07 PM

Re: I don't know where to start, but my dad has mesothelioma.
There are at least two nutrients scientifically proven to work against mesothelioma. One is the succinate form (powder) of vitamin E which is available on the internet. (This is very different from the grocery store form of vitamin E.) A second nutrient is the herb MayApple. It is also available on the internet. Note please that this is science supporting these as possible adjuncts to medical therapy and not alternative as therapy alone. Both herbs should help.

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