Being diagnosed woth Meso

Hiya Barney, my dad was diagnosed with meso 2 weeks ago :-( fingers crossed its not for your dad and he starts picking up.  If it is make sure you get in touch with your local asbestos support group to ensure he gets the support he needs, best wishes x

Hi,

I really hope you had some positive news today. I know, as a daughter how hard this to watch. A firm diagnosis seemed to take forever for my dad, firstly they were suspicious form the fluid biopsy then they wanted a PET scan then a lung biopsy. Its a horrendous waiting game. 

My father (67) was diagnosed in March with pleural mesothelioma. He is totally unaware where he was ever exposed to asbestos but evidently was. Unfortunately my dad hasn't responded to the chemo as well as we all hoped and has had two episodes of sepsis as a result. He must be a very strong man to still be here. He is now recovering so we hope to see if he can still 'qualify' for a second line treatment. As a family we haven't been offered a lot of emotional support which stuns me. I fully expected my father to be given some kind of counselling but other than a couple of chats with a macmillan nurse while in hospital he's had nothing. Everything has been a battle to get answers. We all feel extremely helpless. 

You must be reading every bit of information possible as we all did too. Its a lot to digest and just remember it is only statistics. My dad has attended a support group which he found quite helpful but they don't seem to be very frequent. 

Hope you get some answers soon, its a horrible time for everybody involved. 

So very sorry to hear you have not been offered support. My husband was diagnosed 2 years ago - aged 66- and right from the start we went to a monthly support group which is wonderful. The Meso Specialist nurse from the area attends it and is always available to offer support + advice. Macmillan -  nurse, a physio, occupational therapist and someone to fill in forms for Blue badge + Allowance forms all came to our home. 

What area do you live in?

I wish you all the best

Rosie x

Hi,

This  is my first chat on here.

My mum has recently been diagnosed with Malignant Meso after months of testing, waiting etc.. she had a biopsy in the end and still took 5 weeks to get some kind of answer. 

She was given a care nurse and a Macmillan nurse but neither have contacted her and she has had to call them

I am clueless to know what should happen in terms of primary care and who takes the lead on sharing info with my mum but we all feel very lost and that information is hard to come by especially when we are not too sure what info we should be getting h.

Would really appreciate others views on what the beginning after diagnosis should look like etc....

from a very broken daughter:( 

Hi Jocoju,

So sorry to hear about your Mum.

My husband was diagnosed with Pleural Mesothelioma in April, 2018, and given "on average 11 months".   If you look at my profile it will give you an update.

I am no expert but I would have thought you should have an appointment with your Oncologist and care nurse to tell you what is available for your Mum.   We have had excellent support from Mesothelioma UK, telephone no. 08001692409, and their nurses will be able to help you.

Flower52

Thank you so much. 

I will contact these to see what and where our journey should be leading. Will also head to your story - this site seems full of such valuable information