Mesothelioma

[hoodeeharhar]

Bloody bastard asbestos.
My dad's just been diagnosed with mesothelioma.
It's just not fair. 😞

I'm so sorry.

Sending you a handhold.

((Hugs)) x

I'm so sorry op Its an awful disease. My dear dad died from it almost 2 years ago.
Although my dad detiorated quite quickly, you can live with it for years, it can be managed with oxygen therapy and steroids.
On a practical note, I would advise your dad speaking to a solicitor. There is compensation that can help with care etc. We didn't know this until after dad had died so it was too late. Your dad needs to speak to them in person if it was caused by him working with asbestos. How old is your dad? You have my utmost sympathy, its a cruel disease. feel free to pm me x

My grandad died from this.

He died quite quickly by the time they discovered it but most, it not all, have a lot more time than he did.

I'm so sorry op. As pp said, contact a solicitor who can help with compensation for care.

Thanks all. I'll look up specialist solicitors.
It's happened so quickly, he's always been fit and active.
He 73, but had been active and physically fit up til now.
Had a cough, then breathing difficulties, it was discovered in hospital.
He's back home with a chest drain.

Hello OP,

My wonderful dad had mesothelioma and died almost a year ago. He was 70. He had a drain, pleurodesis (talc procedure to stick the lining and lung back together) and nerve-blocking injections and much later a cordotomy. So if I can help with any questions please shout.

Do you know what kind of mesothelioma your dad has?

I don’t want to overwhelm you. Ask away if you need/want to. And if you don’t then I’m just happy to hold your hand.

I had a thread on here about it which i found very cathartic. There were a few posters on my thread going through family terminal illnesses at the same time. One lovely lady’s dad also has meso. The support was invaluable tbh.

It was not an easy time but it was a special time too somehow.

Wishing you, your dad and the rest of your family all lots of love.

Ps. Can give a solicitor recommendation if needed (London/SE)

bonapp Thankyou,

The district nurse has been coming to do the drain, and showed me how should I need to at some point. Bit scary .

bonapp if you don't mind me asking, how long after diagnosis did your dad pass away? Would you say he had quality of life during the palliative support?
I suppose my concern is it feels like it's been sprung on us, and he was always so active. I'd hate him to spend his remaining time diminished, in pain.

Hi op so sorry your dad has been diagnosed with this cruel disease. My lovely dad died from it 20 months ago.He was 73 and had worked with asbestos 50 years earlier. I second getting in touch with a solicitor. It was too late for dad as he had gone, although mum did get a small amount of compensation to help with a few things.
Of course money meant nothing but it helps with extra care and expenses.
Dad was diagnosed 2 months before he died, although he was ill for a good year beforehand it took a long time to get a diagnosis.
He had home oxygen in the last few weeks and was due to start palliative chemo. Alas it wasn't to be.
Like bonapp I won't overwhelm you but don't be afraid to ask me anything.
bonapp and I got each other through some tough times, hope things are ok with you bonapp
op.best wishes to you, I hope you get support

Hoodeehar
So sorry. My dad died of this aged 80 a few years ago. We never knew where/how he had been exposed to asbestos.

On a practical note, your dad can probably claim an Industrial Injuries award, and maybe Attendance Allowance (need to have met criteria for 6 months unless a person has less than 6 months to live).

My dad died 6 months after diagnosis, but like some of the other posters mention, others seem to live some time with it. There are sometimes support groups locally, if that's something he might be interested in. Really feeling for you - it's horrendous watching it unfold.

So sorry. My father died from mesothelioma 20 years ago, he was 66.

He was diagnosed in the July and died in the December, having previously been super-fit and healthy.

It's a horrible illness.

Thanks so much myguide, ilove and freckled.
He had a good day today, up and active.

I'm glad hoodee Its best to take each day as it comes. My dad would be ok in the morning and got very tired after lunch.
When he felt ok I used to take him for a car ride. He loved his garden so would sit out there is it was warm. His appetite was all over the place so high calorie food, anything he fancies was the answer. Also little and often.
Has your dad been given a specialist nurse to talk to? Ours was really helpful.

Dad had 9 months from when he was diagnosed. So that was the end of August. He was told that “seeing Christmas would be reasonable but anything else would be a bonus”. He visited me in the September (I live abroad) and went on Holliday in October. I’d say by Christmas things were noticeable tougher but ok ish. By late Feb it was pretty tough so the last 3 months were really when things were, at times, overwhelming.

For me, the uncertainty was so difficult. So Christmas was a huge (and hard) milestone for us.

I have to say that I didn’t feel the pain consultant or the community palliative nurse really gave quite enough support and never quite got on top of his pain... But maybe that’s unfair as mesothelioma is a very tricky illness. I also wasn’t there day to day (flew back every other weekend) so didn’t see everything... He had two stays in the hospice (one because he was in a bad way after the cordotomy which was 6.5 months in, and then for end of life care). It was an amazing place, those fabulous people made the unbearable a little bit more bearable.

Dad wasn’t especially active and had quietened down over the past few years so didn’t want to venture far. He was happy being at home and wasn’t going to be one of these bucket list people.

Hi jools... doing ok thank you. Hope the same for you?? Approaching dads anniversary so feeling weird but broadly ok.

Sorry to see others have first had experience of this too.....

bonapp I'm good the majority of the time thanks. I still get odd days when I really miss dad but most of the time I don't let my mind go there. Weather that's a good thing I don't know but works for now. My DD gets married soon and I'm feeling weird about it as dad would have been so excited about it all, it will be a bittersweet day.
sorry op to hijack your thread

Congrats to your dd lovely jools. My dad would’ve been so pleased with the football this week, gutted he’s missed it...

Sorry to hijack further hoodee.... remaining on standby for hand holding as needed....

My mums cousin has this, very rare in women. Make sure he gets the insurance payout/ compensation and benefits as special amounts set aside for this (doesn’t solve it I know but can make living easier)
Mums cousin diagnosed over a year ago, she’s had an op to remove outer lung lining, and a round of chemo. Chemo was tough but she got through, that was 4 months ago, just been back for check up and they’ve told her to go away, go on hols and have some fun and go back in 4 mo the for another scan, so she’s very much living life. Hope it gives some comfort. (She’s 69 and diagnosed 14 months but symptoms started 2 years ago- they didn’t check for it for ages as so rare in women)

hoodee I'm sorry your DF has been diagnosed with this. Has he been told what stage disease it is? Does he have more appointments with chest physician or oncologist to discuss treatment options?

You will find this charity should be able to provide lots of information and point you in the right direction re solicitors who specialise in compensation, however, initially my advice would be to focus on his immediate health needs.

www.mesothelioma.uk.com/

Second to Rainbows advice, depending on where in the country you are there is a charity called Hasag who are really helpful. It was founded by a lovely lady whose dad has mesothelioma.
It only covers certain parts of the country tho.

Hi, I've stumbled on this thread and I hope you don't mind me joining you? My Dad was diagnosed with Mesothelioma yesterday. He has been in hospital and has had an operation to drain the fluid (about 5 litres apparently) as well as biopsies and sticking the mebranes together - I should know the medical name for this but it's completely gone from my head!
He's been allowed home now with a chest drain in place and we will now have meetings with an oncologist to talk about the next stages. The surgeon has told us that surgery is not an option and it looks like the tumors are on the lung and the chest wall. The surgeon has suggested that Chemo and Immunotherapy will be the options.
My Dad is 73 and up until about 6 weeks ago was fit and healthy, playing squash, walking miles etc. I don't understand how things have gone down hill so fast.
I suppose I'd like to know how much time we are likely to have left with him but I'm scared to ask the doctors that question. They have said that he has the slowest growing form of mesothelioma but I don't know whether this actually means anything?
I'm feeling so lost.
OP - I'm so sorry to jump on your thread. Your situation sounds so similar to mine, sending my love to you x x

fanfckingtastic I'm.so sorry you are going through this, it's an awful awful disease. My dad had the procedure you mention in the July. Although they couldn't stick the membranes together as his lungs were in their words 'a mess' He had the chest drain and that helped for a while.
Dad sadly died in the September but he had been ill for at least a year before he had the diagnosis.
The day before he died he saw his oncologist who wanted to start steroids and chemo. He went downhill fast over night as he had contracted pneumonia.
So really, I don't think anyone can give you a realistic timescale.
Take each day as it comes, some will be worse than others.
PM me if you want to xx

MIL was diagnosed today with meso. She's seeing the oncologist on Friday, but I don't think she's understood from the chest surgeon just how bad the prognosis is

My DH was diagnosed with grade 4 lung cancer in March, tbh he didn't really hear anything the doctor said. Was told 6/9 months if treatment doesn't work, 1/2 years if it does. I realised a couple of days later when he was talking about sons 21st (5 years away) that he genuinely hadn't heard/understood. I still don't think it's sunk into him. 😭😭😭

Dibbler so sorry to hear about your MIL, it really is a cruel disease. It's much more common in men as it comes from inhaling asbestos, usually through work before people realised how dangerous it was.
Some ladies get it via their partners from washing overalls containing the dust etc.

No one in the family have worked with asbestos or would be high risk to bring it home, so I think it is just really bad luck. At least it now seems that the pleurodesis has worked so she is feeling better without all the fluid.
I told ds last night, and he took it very well. What he was most worried about was whether nanny would forget who he was - his other grandmother has dementia