Mesothelioma

Em said:

Mesothelioma
I am 64 so I too feel your mother and my Jim were much too young to leave us this soon. Jim's mother is also still alive, and 88 years old. I am having a difficult time tonight as I looked at the clock the moment he died three months ago tonight, I miss him so much. No one will ever fill that hole in your life, but we must cling to the wonderful memories and know that some day we will all be together again. Please stay in touch so I know how you are doing. I lost my mom when I was 19 and my dad when I was 18, time does help, but no one can ever fill their place or role in our lives. And it is hard to explain to a small child what has happened too. Although I think the little ones may be more in tune with the heavens then us adults. Blessings and prayers to you dear Jen.

Hi Em, how are you doing?
Hi Em, how are you doing? It's a month today since mum died, it feels like yesterday and it feels like a long time ago, all at the same time. We are coping okay, just spending a lot of time together with the family. There was a fair bit of fallout after mum died as she hadn't told any of her family interstate (mother, sisters, brother) so they were of course very shocked and upset that we didn't tell them mum was sick. But that's how she wanted it, so there wasn't anything we could do, even if we didn't agree. Nanna is nearly 90 and I think it hit her pretty hard, especially out of the blue.

I am heading back to the states and work next week, it will be good to get my life back after so many months off. At the same time, it'll be hard to leave my childhood house with mum all around me to go overseas. I do believe she'll be with me wherever I go though.

Hope you're doing okay, Em.

Em said:

Mesothelioma
Oh Jen, I am so happy to hear from you, I have looked here a couple of times to see how you were doing. Coping is hard, today was difficult as I am helping Jim's son-in-law clear out things from Jim's house. Jim and I had homes built side by side, it worked better for us this way, we had 24 wonderful years together, and I miss him terribly. It was one month yesterday your mum pass to a better place, and 3 months, 3 weeks yesterday my Jim's left me.

I'm sure it was hard on your other relatives, but it is important to have respected your mother's wishes too. I am reading books on grief, and a new one out that I have found a lot of comfort in, called "Visions, Trips and Crowded Rooms" by David Kessler, short chapters about medical care personnel, hospice and others who were with people when they passed.

Well, please let me know how you are doing again when you have the time. It is difficult to find someone who has endured this horrific cancer and to understand the sorrow and loss as we have. There are days I have such a hard time, I am dreading winter and Christmas this year. God Bless and protect you Jen.

Love,
Em

Hi Em, I hope you're doing
Hi Em, I hope you're doing okay. I veer from being ok to crying a lot.. it just still seems surreal that mum is gone forever. I am back at work in the US now, it has been good to get back to school and work but it also seems weird that my life just goes on now as if nothing happened. Esp after having 8 months off work and now being back full-time.

The hardest thing is that I just can't forgive myself for being so moody with mum. It was so stressful living back home with mum and dad in that situation with her being sick and relying on me, and I didn't always handle it well. Now I just can't believe I was so mean to my dying mother, I just can't forgive myself. She got one of those motorized shopping jeeps at the mall one day and was banging into things everywhere and I was so angry at her for some reason that I wouldn't even walk with her because I said she was embarrassing me. I just feel like crap for treating her like that, I don't know what I was thinking. I know she forgave it all and we left things on lovely terms, but I can't stop worrying about it.

Em said:

Mesothelioma
Hi Jen,

I'm so happy to hear back from you because although we have lost our loved ones for now (I truly believe we will all be reunited one day, at least I pray so), we are suffering at an emotional level that at times is unbearable.

Do not be hard on yourself Jen, you are only human, we all have our limitations, and the stress on us takes its toll, which contributes to our losing patience at times. Knowing we are going to lose them, and the frustration that no matter how hard they battle and we battle for them, the end will come some day is just emotionally devastating. I had two bad days last week, I can burst out in tears and cry so hard for so long, then it stops. The days are long, but memories do sustain us, try to think of all that you gave to help your mother, she knows that too. I have not talked with a therapist but am giving it some thought, not sure if it will help though. Well, you be good to yourself you have suffered enough, enjoy work and school, you have a whole life a head of you, and I know you will do just fine, remember all that you just endured and you did make it though and learned from this horrible experience, we just did God's Will (was not mine).

Please keep in touch and let me know how you are doing Jen, I care about you.

Love,
Em

Hi Em, how are you doing? My
Hi Em, how are you doing? My life is so busy with work and grad school, I don't have that much time to dwell on things anymore. I appreciate your kind thoughts in your last post - it's easy to remember the negative I guess. I have a cardigan of mums and her perfume and every time I smell it, it feels like she's back in the room, isn't it funny how smells are tied to our memory. She wore vanilla-scented perfume as long as I can remember so vanilla anything reminds me of her. Mostly I just feel lonely - I often think of thing to tell mum then remember that I can't. Knowing that person who is always on your side isn't there anymore is hard, mum was always my #1 fan and I guess I selfishly miss that.

What have you been up to?

Em said:

Mesothelioma
Hi Jen,
It is so good to hear from you! I had not checked back here for a while, wasn't sure I would hear from you, and was thrilled you did post. Where are you attending grad school? You are moving on and that is good thing, even though it is difficult, we have too and easier said then done. Soon it will be six months my Jim died, and I miss him terribly. I dread the winter months ahead without him, say a pray I can cope for I don't have much desire to live any more, he was my world. I have read 3 books on grief and have found them to be comforting. One that is fairly new by David Kessler called "Visons, Trips and Crowded Rooms" you might like it. He also wrote "The Needs of the Dying" and another grief book, I can't locate, but found it to be excellent. Yes, I have articles of Jim's clothing I keep close by, & many pictures. I talk to him and hope to get some sign he is near by, wish so much to get a response. And it is not selfish of you to miss the love and attention your mum gave to you, you are her daughter, she cherished you! We will all meet up again some day, I truly believe that. Keep in touch when you can Jen, it is wonderful to hear from you.
Love,
Em

Hello there
I have pleura mesothelioma and unbelievably a survivor at this time, I am 5 months in remission but went through hell for the last year and a half. By reading your post it helped me understand how my children felt, very frustrated. My son does not want to acknowledge that I have been sick but my daughter has been there and would let me know how she felt sometimes, which was important to me so I can keep fighting. Like she said on mothers day and her birthday is that all she wants is for me to live as long as possible knowing that everything that I went through will give me 2 to 5 years and hoping to prove the statistics wrong by being here longer. This cancer like any other cancer it is evil but the worst part is that this one is man made and I think that is the part that I hate about it. My husband had a hard time dealing with it and I think he has finally come to terms with it now. I was 47 years old when diagnosed on June 1, 2009 and now I am going on my 49th birthday in January. We just celebrated Thanksgiving (I live in Canada) which I rested all weekend, and went out on the monday to celebrate with my husband and both kids. I have no immune system right now so I catch everything and now I have a cold which wears me right out. I still have pain on my right side but take tylenol 3's for it. I had the radical treatments of right lung, lining, and few spots of diaphragm removed then chemo and the radiation. I am still healing from everything.

My scariest part of going through this is how are my kids going to deal with this when it takes me away, as they are only 22 and 24 years old. All I can say is that I am so sorry to hear of your lost but also do remember the good times that you all had with them. And know that you have made a difference being there for them to the end.

Hope this helps, understanding the other side as you have made me realize how my kids felt through all this. Thank you

Em said:

Mesothelioma
Hi,

I am happy you wrote. My name is Emily, age 64 and my Jim passed in April, he was 68 years old. The young lady who has been so kind to keep in touch with me is Jennifer, her mother passed a couple months ago. It is good you were able to have the surgery, that is definitely a plus, Jim was not able to have surgery. Women I have been told, do better with mesothelioma, and your age is also a plus for you. Did you have the surgery done in Canada? My Jim participated in clinical trials at NIH (National Institute of Health) Bethesda, MD. This was not far from where we use to live. He gave it his best, and also said if he could not be cured, he wanted to contribute flesh and blood to research, of which he did during the clincial trials. He had a positive reaction to the trial drug, I do believe it extended his life. You have to be positive, and know they are working hard on finding cures or other ways to control this disease. Never, ever give up hope. Your children just don't know how to react is what I think. I was only 18 when my father was killed in an automobile accident and 19 when my mother died of ovarian cancer, she just turned 42 was sick 6 months. It is difficult as a child, especailly not knowing what to do. But I think you have a wonderful family, and I believe you are all going to do better then you might think right now, try to focus on that. I have spoken with a woman, named Marilyn who has survived 9 years with mesothelioma. Take care, and God Bless you.

Emily

Thank you
I had everything done home, Calgary, Alberta in Canada. I have this wonderful thoracic surgeon that has worked with Dr. Sugarbaker which is the surgeon that started doing this radical surgery. He was very honest and broke the news to me in a very good way and informed me of the choices. I think the hardest part was telling my kids that there was a chance that I may not come out of surgery or be able to go through treatments. I guess i was in surgery a lot longer then I was suppose to be, it ended up to be 12 hours.

Now I am very fortunate to still be here but can get frustrated sometimes with not being able to do was I was able to do before. I still get tired easily, and I catch colds, flu's, and whatever there is out there. It doesn't take much to get sick.

I am thinking positive and will be back to work full time eventually again, and start playing sports again hopefully next summer. Might not be able to play all the sports that I used to but will play some.

Thank you

Em said:

Mesothelioma
Congratulations! You did very well with the surgery. They told Jim it would be at least 13 hours for him, but because they found a spot in his stomach he did not qualify for the surgery. You have been over the hardest hurtle, there are a lot of people who cannot endure or qualify for this very difficult surgery. I don't know if you have Boost Plus but it is a drink Jim had quite a bit that would help provide nourishment for him. He didn't have colds, we were lucky there. Remember try to take this one day at a time, I know Jim felt like he wanted to do all he could and hoped they would find a cure. You never know when they might. If you are interested in the future regarding any clinical trials, I would be more then happy to provide you with the telephone number and name of a nurse who could help you, she is very knowledgable with mesothelioma. Please keep in touch, if you have any other questions or if I could be of assistance to you, I would very much like to do that.

God Bless,
Emily

My dad is in the last stage of Mesothelioma
Hi Emily,

I'm very sorry for your loss. Your husband sounded like a true fighter!

My father was diagnosed in July of this year, however, the doctor feels he's probably had it for over a year. He is very week, has lost a lot of weight, from 180lbs to 112lbs this week. Do you mind if I ask you some personal questions? But if it's too difficult I truly understand. Did your husband cough up thick mucus? I need to know what to expect in the next few weeks. My mother passed away 17yrs ago from renal cancer, we knew what to expect. My sister died last August of Melanoma, which metastasized to her bone & brain, we knew what to expect! I have no idea what my father will go through before he passes! Any information, if it's not too difficult to share would be so helpful. Again, I'm so sorry about your loss.

God Bless you & you will be in my prayers.

PJ45

P.S.- I live in Michigan, currently in Big Rapids, however, I grew up in the Detroit area. What part are you from?

cookie_girl said:

Hello there
I have pleura mesothelioma and unbelievably a survivor at this time, I am 5 months in remission but went through hell for the last year and a half. By reading your post it helped me understand how my children felt, very frustrated. My son does not want to acknowledge that I have been sick but my daughter has been there and would let me know how she felt sometimes, which was important to me so I can keep fighting. Like she said on mothers day and her birthday is that all she wants is for me to live as long as possible knowing that everything that I went through will give me 2 to 5 years and hoping to prove the statistics wrong by being here longer. This cancer like any other cancer it is evil but the worst part is that this one is man made and I think that is the part that I hate about it. My husband had a hard time dealing with it and I think he has finally come to terms with it now. I was 47 years old when diagnosed on June 1, 2009 and now I am going on my 49th birthday in January. We just celebrated Thanksgiving (I live in Canada) which I rested all weekend, and went out on the monday to celebrate with my husband and both kids. I have no immune system right now so I catch everything and now I have a cold which wears me right out. I still have pain on my right side but take tylenol 3's for it. I had the radical treatments of right lung, lining, and few spots of diaphragm removed then chemo and the radiation. I am still healing from everything.

My scariest part of going through this is how are my kids going to deal with this when it takes me away, as they are only 22 and 24 years old. All I can say is that I am so sorry to hear of your lost but also do remember the good times that you all had with them. And know that you have made a difference being there for them to the end.

Hope this helps, understanding the other side as you have made me realize how my kids felt through all this. Thank you

Meso
Cookie_girl
I am so glad to hear you are doing well. I've learned allot about this cancer because my brother, who has the pleura mesothelioma too. He is scheduled for surgery on the 5th of Nov. He is so brave eventho I know he has to be scared to death. I know you understand because you had to face the surgery too. We both know getting through the surgery is half the battle. He is 60 years old, very fit, very active and was very healthy. He is a good candidate for the surgery and I am glad he can have it. He wants to beat the odds too.
I heard him talking to the doctor on the phone, he wanted to know if there were any of his patients that might be willing to talk to him about their surgeries. (So far none have).
I decided to get on the net and see what I could find out. I found you and am wondering
if you would be willing to talk to someone about your operation.
Best wishes to you and your family
Kathy

cookie_girl said:

Hello There
What would you like to know? I am open to any questions that you or your brother may have. If it will help him make feel comfortable please don't hesitate to ask, this way he can go in thinking positive. The big thing with this surgery is that you must think positive. I will try to check this site every night

Take care

Thank You
That's great, I will talk to him and get back to you.
Bless you..........