Hi, I have just joined the group and not sure where to go. I am looking or anyone who has or is having treatment for Mesothelioma. My husband has this condition from coming into contact with Asbestosis unknowingly years ago, which is now causing cancer in his lung cavity.
It is very hard to treat and we are told only palliative care on offer with immunotherapy, which is with checkpoint inhibitors. He has just had his first treatment and is getting AF (atrial Fibrillation). He gets this but hardly at all, although now its a lot more and worrying for him. I feel quite helpless and know so much about the drugs that the whole thing is unnerving. I am keeping calm with him so he doesn't get anxious but inside I am so worried.
I wondered how others being treated with these checkpoint inhibitors are getting on. My husband is a strong 77 year old who looks after his health and eats healthy food. He's also on an anti cancer diet to help. low carbs, no sugars and loads of veg and juicing green veg. Doing good on this. He wasn't overweight but has lost a bit and feels good for it. Only thing for now is the AF which is unsettling.
I would love to hear other people's experience's.
With warm wishes, Suzi
Hi Shezina and a very warm welcome to the Macmillan Community but sorry to hear about your husbands diagnosis.
A cancer diagnosis like this can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type or support challenges will help you a lot……. I have asbestosis but it’s been stable for a number of year but I have been treated for incurable Lymphoma for over 25 years.
This New to Community area is like our reception desk where we look to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you look to join and post in our…….
……. support group.
This group is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our……
Supporting someone with incurable cancer
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 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.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
