Dad's new Mesothelioma Diagnosis broken!

Hi Hope83 and welcome to this corner of the Community but sorry to see you finding us abd to hear about your dad.

I don't have Mesothelioma but have lived with Asbestosis for a number of years, fortunately it remains stable but my main 25 year fight is with an incurable type of blood cancer Stage 4a

I see that you have revived a reply to your other post and that you have connected in with some ongoing discussions.

Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

You may also want to check out www.mesothelioma.uk.com for some good information and have various support platforms.

Always around if you need further help or just want to talk ((hugs))

Good afternoon Hope 83

Sorry to hear about your fathers diagnosis and fully understand how devastating it is having being diagnosed  with pleural mesothelioma in Sept 23. I have been given immunotherapy sin e and have been very well with the cancer currently stable  The great thing is that it has allowed me to live a fairly normal life and go on holidays, enjoy life and spend time with my family. My treatment won't cure me but I have come to terms with that and hopefully it will allow me to extend my life and reduce symptoms. I also feel exercise and walking have contributed to still feeling well. I am not medically trained but I don't think there is any evidence that surgery leads to better outcomes, in fact in the Mars two trials shows that surgery carries greater risks and takes a long time to recover from the operation. Obviously I have not lived two or more years yet but I am really trying to lead my life as long as possible in a normal way. I am under a wonderful Consultant,  Dr Pope at Clatterbridge hospital in Liverpool. The whole staff have been outstanding. All my treatment which is very expensive has come from the NHS. 

Also although the stuff on the internet makes grim reading you have to remember immunotherapy has only been around for about two years on the NHS so hopefully the length of survival will significantly increase as more data comes through. 

Personally I would avoid reading USA websites and stay if possible to British trusted sites such as MacMillan and Cancer Research Uk. 

I wish your dad well and hopefully he will find the treatment that is right for him. 

Regards 

Mike 365

Hi Highlander, thanks for reaching out and replying. I am sorry you are living with asbestosis that must be difficult and a constant reminder of the damage asbestos can do to the body. Equally I am also sorry you are going through cancer yourself of another kind. How devastating. Thanks for the links, I am sure these will prove invaluable as we all navigate through this journey of the unknowns, ups and downs. I wish you the best through your health diagnoses. Thanks again. Liz

Hi Mike, thanks for your personable and touching reply. I am very sorry you are going through this cancer too. As you have expressed, it is a devastating diagnosis but it sounds very much and comforting to know that Clatterbridge have looked after you well and immunotherapy is working well for you as a treatment to this awful disease. A friend mentioned Dr Pope I read good things about him so its comforting you have also found him and his team outstanding. Indeed it appears a common thread that google searches are something of the norm with cancer diagnosis, searching out hope I guess of something, anything that might bring a light at the end of the tunnel. I guess all one can hope is my dad like yourself reacts well to the treatment offered and is on a path of extended living, albeit a nice holiday like yourself. Who doesn't like a holiday after all. 

Thanks for sharing your personal story and I wish you well too in your treatment going forward. Best regards. Liz

Thanks Liz 

Appreciated and hope all will be well.

Mike 

Hi Liz

I dont know if this will help but I too have mesothelioma, diagnosed in December 23 and on immunotherapy since January. Last CT my tumours had actually shrunk about 25%. I am having some side effects minor but also polymialgia which I am taking steroids for.

I have accepted what is happening and carry on life as normal, I am mainly worried about my wife who is a bit younger than me and I want to make sure she is as ok when I am gone as I can.

I have been using my benefits etc to try and future proof the house with new white goods ( washing machine etc) , updating our heating system and putting in solar to reduce bills. This gives me comfort In addition we are trying to fit in nice little breaks and hopefully a holiday abroad if we can. I know that underneath she is really worried and by acting as normal as possible ( by still getting on her nerves ) I am trying to keep everyday smooth. I get the impression that the older you are the more you accept your fate and get on with it and want you to know I at least feel that way and talking to others it see many feel the same, more worried about those they leave behind so I think we need your support too by making us feel we have less to worry about, that you love us etc and make sure anything that needs saying is said. I hope you take this the right way, my attempt at giving you some comfort. Paul