Mesothelioma…

[Kaya1990]

Any experience anyone?

Hi there, yes my family member had this, horrible disease. Hope you’re ok

Hi, yes my dad has just been diagnosed with this.

Yes my husband sadly died of this.

My father in Law had it, he was admitted to hospital with a urine infection and confusion, he then developed a cough and pain under one shoulder blade, Further tests showed he had the disease. A course of radiotherapy and steroids eased the symptoms but he knew it wouldn’t cure him.
He was diagnosed in the November and died the following May.

He’d worked with asbestos before the dangers were known about it.
It’s a notifiable disease and he applied for benefits which helped with extra care, a cleaner and taxi fares etc. The hospital provided him with a bed which made life easier as it could be raised and lowered to assist us with his personal care, it also had an air mattress which helped to prevent bedsores. It had side rails on the prevent him from falling out, he had a commode too. They also provided a device that had rails on around the toilet and a raised loo seat. It was all on loan.
It’s an awful disease.

My neighbours wife died of this. It’s so horrible.

Yes, my dad had it.

My dad has been diagnosed in November. He finished chemo last month and now will be treated to immunotherapy (parents dont live in UK). Never worked with asbestos though.
I was hoping to hear someone lived xx years with it after being diagnosed.
Not sure how to cope and what to expect.

You don’t need to have worked with it to get it : a woman got it from washing her husbands overalls. A teacher got it from the school she worked in, asbestos in the roof was disturbed during a storm causing the asbestos fibres to be released into the air. The fibres are minute
It doesn’t show symptoms for a long time, my FIL worked for a chemical company, he retired in 1975 and didn’t show symptoms until 2004.

So what do i need to expect at the end?

My dad's end was very peaceful and gentle. He went into the hospice who managed his symptoms really well the he literally just stopped breathing (as my sister, daughter and I were laughing at something my sister had just done). My mum had stepped out to call my brother and dad took one last breath and died. Up until the last few weeks he had been very active and well, he'd decided against chemo or treatment.

@bloodywhitecat thank you. Very uplifting to know it can be “peaceful”.
I am sorry for ur loss.

Hi Kaya, my father in law was diagnosed in March 2020 and sadly passed away last week. He had two sessions of Chemo before the pandemic stopped this and then later had a course of immunotherapy which did help for a while but then sadly stopped working and the disease progressed.

We were able to have him at home with us for the last few months of his life and he did pass peacefully. I know your father is abroad but MacMillan were a huge support to us and have some specific information and support message boards which you might find useful

@bloodywhitecat and if you dont mind me asking, how long did he have since being diagnosed?

@daisybrambles thank you.
I will have a look at macmillan. My father is a lovely person but just doesnt talk, nothing about his fears, feelings, anything, now or before the diagnosis. I feel so bad to know he must be fighting so much inside. Mom is in denial thinking it will cure him.

Dad had about six months from diagnosis but his diagnosis took a while as they kept saying he had an abscess in his lung.

My OH had 11 months from diagnosis. He was on oxygen the last few weeks. Im sorry about your Dad, unfortunately this disease cant be cured.

FIL was six months from diagnosis to his death, he was in hospital when he died, he slept a lot the week previously, the day my DH and went to visit him, he appeared peaceful and not in pain but he was on a morphine syringe driver.

My FIL didn’t want to acknowledge it either and was determined he would get better for a long time but he did eventually come to terms with things and by the end he was at peace with what was happening.

Make the most of the time you have, we made sure we spent lots of time together and made some lovely memories that we now cherish.

My ex boyfriend died of this. One year from diagnosis when he had started feeling breathless on walking.

My MIL had meso - she'd never worked with asbestos, nor anyone in the family. She survived 28 months from diagnosis, having had several lots of radiotherapy, chemo for symptom control, and pleurodesis for the fluid build up. FIL was in denial till the very end that she was going to die, and life would have been a lot better for the whole family if they had accepted it earlier, made more use of palliative care and so on. But the very end was peaceful at least

My mother was diagnosed on the September and died 3 months later. I won’t go into the ending.