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Mesothelioma - any experiences?

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#1 .Jerry.

Posted 08 February 2020 - 01:50 PM

My dad has just got the diagnosis of pleural mesothelioma.  We expected this after some issues over the last two months.  Sucks though.

Anyone have experience of this in their family?

The doctors have said they will help with the legal compensation claim.  Dad was a plumber in the 1960s, 1970s, so occupational exposure very high.

I know it will be an awful death from what I have read. :(  Hopefully it is quick for dad.  He's not one for much fuss.

#2 too tired to care

Posted 08 February 2020 - 01:59 PM

I'm really sorry, it is such a hard disease on the person and family.
A family friend contracted this and sorry to say it was not a pleasant death. She grew up living behind where the asbestos sheeting was manufactured and while she did get some $ compensation as she was not working with it like your father it was a hard slog for them to get any compensation.

Hopefully compensation will happen fast for your family and you get some good quality time with him before he gets too bad.

ETA: sorry forgot to say that this was about 15 or more years ago now , so hopefully things easier now and current medical treatments assist for having a better quality of life.

Also can i just say that it would be good to get palliative care involved now. They are not just there for the end but to assist and to ensure that there is a good quality of life and support from this moment. please use them, they are a great resource and are very caring and want what is best for your dad.

Edited by too tired to care, 08 February 2020 - 02:02 PM.

#3 Lifesgood

Posted 08 February 2020 - 02:17 PM

I'm so sorry Jerry. I hope you and your dad can find the best possible help.

#4 .Jerry.

Posted 08 February 2020 - 02:22 PM

Yes, I know it is a very unpleasant painful cancer.  :(

Doctors haven't given a time frame but said treatment will be pointless.  (Dad is 76).  Doctor said from a few months to a year or two at most.  I know expectancy is more measured in months.

Luckily compensation should be pretty simple for dad and from what I understand come through within 2 months or so.

Will talk to mum and dad about palliative care involvement.
Dad just wants a holiday at the beach and a big feed of seafood!

#5 Ellie bean

Posted 08 February 2020 - 02:43 PM

I’m really sorry Jerry. I assume you already have a good lawyer but if you need recommendations, PM me.

#6 eilca

Posted 08 February 2020 - 02:49 PM

Jerry I am so sorry to read this.

My brother had peritoneal mesothelioma and passed away in 5 years ago on his 55th birthday. It was a world of fast learning as we thought it only involved lungs.

It automatically was a medical law suit as it is not a random disease. It was settled very quick after diagnosis and my brother was able to plan the finances with his wife and kids.

I hope your dad receives the best of care. My thoughts are with you.

#7 Murderino

Posted 08 February 2020 - 03:10 PM

I’m sorry Jerry. Hope your dad enjoys his holiday and seafood feed!

I have no information about mesothelioma but want to echo getting palliative care in early. They were great with my mum when she got her second cancer diagnoses which was untreatable. It made life at home much easier for her, dad and the sister who came home to help dad care for mum.

#8 Caitlin Happymeal

Posted 08 February 2020 - 04:48 PM

That's awful Jerry. All the advice to get pal care involved is really sound, especially getting the support of the social worker in his team to help with the compensation. I've provided end of life care to several people with this and I can't tell you anything particularly reassuring, but if he's under a good pal team, they can do some really awesome things to ensure he has quality and is comfortable for however long he has.

Obviously, if the doctors have advised he's not for treatment, it must be fairly advanced but is it maybe worth querying trials? There are a few chemo and immuno drugs used for meso, but of course, that depends on the staging and his individual health. It would likely only be buying time though. It's a prick of a disease.

Once again, I'm so sorry - if you want any info on pal care or oncology, there's some really great resources I'm happy to PM you if you like or even if you just want to chat to someone who works in the area I'm more than happy. It's a lot to absorb.

#9 Caitlin Happymeal

Posted 08 February 2020 - 04:54 PM

Also, if he is considered metastatic, I know of a brilliant organization who does an adult version of make a wish type stuff, if that is something would like details of - wishes usually involve some sort of bucket list type holiday within Aus or going to a concert of some amazing performer or swimming with dolphins, just as examples etc. Happy to send you a link if you would like.

#10 Mollyksy

Posted 08 February 2020 - 06:12 PM

Caitlin Happymeal, I didnt know that sort of organisation existed and I'd be interested in donating. Do you have a name or something I could Google? It is just a localised thing? (From memory, OP is not in NSW where I am) or Australia wide? Selfishly I'd be interested in something more local if it is something small groups do in a localised fashion.

Jerry, I'm so sorry. Watching a parent suffer is heartbreaking. I would recommend talking to your dad if he wants to. My stepdad would just cry when mum would want to talk about anything practical death related. But she needed to and I was the only one that would. From wills, to funerals (I was irrationally annoyed at a wake as she loved parties and I hated them yet I was going and she wasn't. I wanted to have a celebration pre death but she wasnt well enough and had not long had a surprise vow renewal anyway). Maybe he will want to ensure his family is taken care of so compensation will be important. I too recommend getting palliative care involved and see if your dad wants to pass at home or in a facility. It's hard I know but kinder to him to follow his lead.

And take care of yourself too. huge hugs. Cancer sucks.

#11 Tinsilitis

Posted 08 February 2020 - 06:50 PM

If you would like to PM me I am happy to talk. My mum passed away from Mesothelioma 18 months ago, after my father worked in construction in the 60s, 70s, and 80s.

#12 notsoretro

Posted 09 February 2020 - 06:30 PM

Same as PP, my Mum died in January 2019. Dad was a carpenter who died of another cancer in 2003 but the autopsy showed he had signs of it too.

#13 SplashingRainbows

Posted 09 February 2020 - 06:40 PM

I’m sorry jerry, what awful news. A friends dad recently passed of this. As I understand he was well medicated by pal care at the end but it was hard for all of them.

Someone very close to me is in the late stages of terminal cancer. Can I say to you if your dad wants that holiday, to go sooner rather than later. As in ASAP?. I know that sounds so bloody obvious, but sometimes the time and energy they have left can just slip away so very quickly.

Again, I’m so sorry.

#14 lozoodle

Posted 09 February 2020 - 06:57 PM

No experience, just wanted to say how sorry I am to hear of his diagnosis. Its just such an awful thing to have to go through, for all of you :(

We just lost FIL a few weeks ago to lung disease, not the same, but awful nonetheless.

#15 Chelli

Posted 09 February 2020 - 07:13 PM

So sorry to read this Jerry. Thoughts are with you all at this awful time.

#16 DaLittleEd

Posted 10 February 2020 - 02:29 AM

Thinking of you and your family.

#17 .Jerry.

Posted 19 February 2020 - 05:59 PM

Thanks everyone.  

It's life as "normal" for dad and mum at the moment.  Dad is no sicker today in a practical sense than he was three weeks ago.  No decline yet.

Luckily the specialist recommended a solicitor experienced in asbestos claims.  The solicitor has been great - even travelling to their home to meet them so they didn't have to come to Brisbane.  Solicitor has estimated (if all goes well, and it likely will) they could be eligible for a compensation payout that will hugely benefit them, well beyond my mum's expectations (and bigger than any money they have ever seen really).  It would really help mum once dad goes, as she is on the pension.  (and money likely to come in within 10 weeks)  It is comforting to know that there is help.

They are planning a few short holidays away and just "getting on with it all" while dad can. :)

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