Mum has stage 3 Mesothelioma but feels great

[Ms_Anticipatory]

Does anybody know about Mesothelioma and how quick God can take them. I would obviously rather that she does not suffer and she said she feels great. She had her lungs fixed so she's breathing better and its so hard to believe she's going to die. She says she's sleeping better than ever and beleives God may take her when she's sleeping. Can we be this lucky? Or does all Mesothelioma patients die slowly?

[Ms_Anticipatory]

Mum also wants to know what people think about what she's been told. She was told not to worry about having chemo because she feels good. She has been told to get chemo when she starts to feel awful. But if she gets chemo now, wont that prolong her life?

[Elsicarter]

Dear Maria I have had to set up a new account to be able to reply to you. (I lost the other details) I have a lot of positive information for you. Please email me directly at myracarter@gmail.com or find me on Facebook as Elise. My most encouraging information comes from support groups on Facebook. If you find me there as Elise Carter (profile pic of me and John on seawall with a dog. I have wet hair and a red cardigan.) Rod Smith runs an information page for carers..etc..and several other pages through Facebook. You will find many other people there who are fun, informative and very supportive..they too are either Meso sufferers or carers. It feels so lonely at first. If your mum feels well, just get her to enjoy life to the full and ignore all the stats. There are several people living a longer life than the "average" Lou Williams has had Meso for 11 years. It is a terrifying diagnosis but there is no need to rush into chemo.. as long as she is comfortable now just eat well, live well and perhaps see a Naturopath if you can afford it. John is busy building carports, chopping wood, going sailing nearly 10 months since his diagnosis...He gets a bit tired but then he will be 75 in January. Some researches suggest that the chemo makes very little difference to the outcome and some have very bad side effects. I just always give him the info and he decides to try it if he wants.. no pressure. Ok Hope you can find the support on FB or just email me... I looked up your name but there were many Maria Portelli. all best. cyber hug. Elise

[Ms_Anticipatory]

Thank you for your reply. Mum found comfort knowing that John is still well. I'm having difficulty finding Meso support groups in Melbourne. The group in Gippsland (Vicki from GARDS) have been very helpful but I wish there was a group in Melbourne I could go to. Has anyone heard of a Mesolthelioma support group in Melbourne???

[Elsicarter]

Hi Maria Ron Smith who organises the Facebook support groups is very active in all aspects of Meso. I will go Google and see if I can get him linked up with you. He is very reassuring about what's in store..and dedicates his life to warning of the dangers of Asbestos etc. He lives on the Mornington Peninsular I think but should be able to help. Does your Mum know where she would have come in contact? If it was through work the Dust Disease Board might be able to help with financial support.. It's been a long haul but I'll try and find the groups for you..off to FB to message Ron Smith.Don't read absolutely everything about Meso because every one is different ..It's very frightening at first but as time goes by you'll gather more strength and cope well... more later...Glad your Mum is feeling well..

[Elsicarter]

Hi Maria Ron Smith who organises the Facebook support groups is very active in all aspects of Meso. I will go Google and see if I can get him linked up with you. He is very reassuring about what's in store..and dedicates his life to warning of the dangers of Asbestos etc. He lives on the Mornington Peninsular I think but should be able to help. Does your Mum know where she would have come in contact? If it was through work the Dust Disease Board might be able to help with financial support.. It's been a long haul but I'll try and find the groups for you..off to FB to message Ron Smith.Don't read absolutely everything about Meso because every one is different ..It's very frightening at first but as time goes by you'll gather more strength and cope well... more later...Glad your Mum is feeling well..

[Elsicarter]

Hello again Maria I contacted Rod Smith and he would like you to call him on 1800031731. he is sure he can link you up with people in your situation near Melbourne or email angels@berniebanton.com.au. I hope you find support for you and your mum. I have found them to be a great comfort just by being there on line for me. I live up towards Newcastle on Lake Macquarie. Let me know how you get on and any questions email me myracarter@gmail.com..or sykingharald@hotmail.com. best wishes E

[dawnvasjuta]

Hi Maria, My mum was diagnosed Mesothelioma at 63 years old after going to her GP thinking she had the flu for a few weeks. The GP sent her straight to hospital as her lung was filled with fluid. After draining the fluid a couple of times doctors finally gave us the diagnosis. They tried to do a pleurodesis to seal the lung lining to her chest wall so they could remove her drainage tube. The procedure didnt't work so she was sent home with a portable drainage box and told she had 4-6 months. It was 5 months later she passed. Most days she was fine and had no pain just annoyed having to carry the drainage around. When the drain stopped working she was placed into pallative care in hospital in Melbourne & placed on morphine. Just be there for your Mum, hopefully she will feel great as much as she can. All cases are different and as others have commented you may still have alot of time left.

[Ms_Anticipatory]

OMG I feel horrible for you. I'm so sorry that you and your Mum experienced that. I wish there were words I could say to help.

[Ms_Anticipatory]

Thanks so much for your support E. I'm not a facebook person but I will call Rod to speak with people in similar situations. Its getting to a stage where we think perhaps the doctors are wrong. My Mum still feels fine (although I see a little change in her which could be because the doctors said she has 5 years at best to live). I'm scared she's gonna get bad (real bad) fast and that's why I'd love to speak to other Meso carers to see if their loved ones are / or were so good too. The doctors keep saying it's definitly Meso. At night Mum says she feels pain and crunching in her chest but during the day shes good. I guess I can thank god for the times she good but I fear that around teh corner it wont be so easy. We are having another scan in 2 weeks and if we're lucky teh docs will say opps, there's no meso there, or it's possibly shrank??? Who knows. I'm just thinking I'm so lucky she's good today.