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Dad diagnosed with pleural mesothelioma - just reaching out

18 Aug 2019 12:59

Hi,

I’m just posting on here because I really don’t know what else to do. My Dad was diagnosed with pleural Mesothelioma about a month ago. It has been 5 months of hell really. He went to the doctors in March because his breathing was not great and he was referred to hospital for tests. They found a huge amount of fluid on the lung and told us they suspected Mesothelioma and did several biopsies. We were them told that no evidence of cancer was found and we were all so relieved. He has talc put on his lung to stop the fluid and they drained off the remaining fluid.They sent him away and said they would see him again in August. However, his situation didn’t improve so he went back in May and again they suspected Mesothelioma so did more biopsies and this time their suspicions were correct. (A bit annoyed that they didn’t look into it more the first time)

So our world came crashing down for the second time. 4 months wasted when he could have been treated. Since then, he has seen the oncologist and has been offered the chance of a trial in London with a new drug alongside chemo but he would have to travel to London every week for 18 weeks and have chemo up there. This means going on the train from Colchester and I really don’t think he is strong enough for all of that. My head is everywhere and have just spoken to my brother  and he said that dad is now coughing up blood. He won’t take any paracetamol or ibuprofen because he “doesn’t like taking medication”. He has bad nights and can barely walk 100 yards before he gets out of breath. 

I am supposed to be taking him on the train to a London on Wednesday to have bloods done in prep for the trial but I really don’t think we’ll get there.

Mum and Dad are still very secretive about everything and if it wasn’t for my brother and I updating each other and insisting on attending his appoinments, we wouldn’t have clue!

sorry, I’m really going on but just need to vent! My Mum’s Mum also died 3 weeks ago and we had to attend the funeral this week. It’s just been awful!

I can’t bear the thought of him suffering and either way he will, whether he has chemo or not. I am so angry because he never directly worked with asbestos as he was an accountant but happened to be in buildings when they were doing renovations. It’s just so bloody unfair!

 

Dad diagnosed with pleural mesothelioma - just reaching out

18 Aug 2019 20:51 in response to Hskerritt22

Hello,

I'm so sorry for what has happened.

I can't offer any words of wisdom or experience.

My grandfather was diagnosed with Mesothelioma two weeks ago. He also never worked directly with asbestos. The only thing that the Hospital did for him was discharge him before he was for well enough to go home. They sent him home with C Diffe and MRSA and he was backk in hospital 3 days later. 

I understand your anger. 

My grandfather has also been reserved with the truth. However, I don't blame him. He informed the consultant that he didn't want a biopsy and didn't want to know he had cancer. However, On readmission, a  junior doctor decided to ignore his wishes and told him he had cancer and was dying. His wishes were not respected and he was told he was dying with no family members there for support. I think the hospital is a disgrace for doing this.

From what I can gather there are some areas in England where support, treatment and symptom control for mesothelioma is reactive. This is unacceptable and isn't good enough. 

I plan to complain. It won't help my grandfather but maybe it will help others.

You have every right to feel angry.

The nurse from Hasag was really informative and helpful. Have you heard of them? 

Also Mandy who replied to my post on here was great too.

Please blog and offload if it helps.

I'm sending you my best wishes.

Chanel.

 

Dad diagnosed with pleural mesothelioma - just reaching out

19 Aug 2019 09:16 in response to Chan123us

Hi Chanel,

Thank you so much for your reply and I am so sorry about your Grandad. That is so frustrating and upsetting. Why the hell don’t these doctors and nurses communicate with each other? We had the same thing. We saw so many different people and they all said different things. We were all so confused by the end of it. They really don’t understand the stress they put everyone through.

I have to say it has helped coming on here and hearing other people’s stories and support. I sometimes find it easier talking to strangers than I do my friends and family.

My parents are in touch with Hagas, yes and they are helping them with claiming compensation. It won’t help my Dad now but it might support my Mum.

Sending you hugs.x