Sarcomatoid mesothelioma

Hi Sharon14

I'm sorry to read that your dad has been diagnosed with sarcomatoid mesothelioma and I know what a difficult time this will be for the whole family.

I had a different type of cancer but noticed that your post hadn't had any replies yet. I've had a quick look in the group to see if anyone has had recent experience with sarcomatoid mesothelioma and noticed that Nebbsy has posted about their dad having this. I've 'tagged' them into my reply and hope they will pop on and share their experiences with you.

I also searched the group to see if anyone had mentioned having a cordotomy and found these posts. I'm afraid they are all quite old but you could still have a read through them.

While you're waiting for replies it would be great if you could update your profile with your dad's diagnosis and treatment so far as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. 

x

Thanks for replying 

Hi Sharon14. Sorry to read about you dad. After two years of lung issues mum has finally been given the diagnosis of sarcomatoid mesothelioma following a 6 week stay in hospital. 

How have things been for you and your family?

I notice your blog was 5 months ago so not sure how often you come on and read

Hi Donna.Sorry to hear about your mum. Sadly my dad passed away 3 weeks ago. It is a terrible disease.  Not sure if you want to know the details as it will be upsetting for you. If you would like me to tell you his journey I will gladly share it with you

Deeply so sorry to hear your dad has passed away. You're so kind to even reply when it's so recent.

As you probably understand I am all over the place emotionally. I want to know all the details but I don't want to know all the details as I'm scared of what's to come.

I hope you have lots of love and support at this very sad time. I wouldn't dream of asking you to share your family journey with me so soon x

Thanks Donna. Wish I had some support but it is so rare and there isn't much known about it really. Can I ask if she is mobile and have they offered any treatment for her?

We've had a difficult time already, even getting to this point. Mum has only just come out of hospital after being there for 6 weeks. She isn't mobile, just seems to have lost all strength since February. The hospital discharged her on the basis she could safely transfer to a commode but in reality she can not and has 2 carers 4 times a day. I'm currently at hers since 330am awaiting an ambulance as she fell out of bed (which is not the 1st time and can be up to 8hr wait) We should have our 1st oncology appointment in a week or so but mum is very reluctant to any treatment and just wants it all over with :( 

I feel selfish writing all this knowing that you yourself are suffering such sad circumstances, but I really appreciate your replies x

Hi Donna. Sorry to hear. My dad had 2 rounds of chemo and I wish he hadn't. It made him so poorly for a week afterwards and became more weak. .the tumour seemed to of spread  after to his ribs and blocked his throat so could hardly talk which was so frustrating for him. He was so stubburn and tried to walk but kept falling and was in so much pain. Only steroids really helped for the inflammation but the nurses were reluctant to keep him on them due to muscle wastage.  He eventually ended up bed bound.   He was on , pain patches oromorph liquid and tablets gabapentin and amytriptline then ended up with a syringe driver in the end to control the pain . It is so difficult to diagnose and is only found at the end stage. Keep strong. I feel your pain x

Make sure you put a claim in as well as its an industrial injury

www.gov.uk/diffuse-mesothelioma-payment