Mums MDS

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that your mum has been diagnosed with MDS. I have lived with a rare type of Non Hodgkin's Lymphoma Blood Cancer for many years so do understand the challenges this brings.

It sounds like her team have decided that none of the normal treatments would help where she is at and her condition is treatable but incurable......... looking to make her as comfortable as possible. It is important to remember that folks can live well on long term Palliative care.

MDS is so rare that we don't actually have an MDS Group..... but you may find our Carers Only, Friends and Family and Supporting Someone with Incurable Cancer groups to be good places where you can connect with others supporting family through their cancer journey but more importantly the carers care for each other.

There have been a few post on the site so if you put MDS into the search tool you can see the posts and just pit reply to any posts you think you can connect in with.

Can I also highly recommend our various Macmillan Support Line Services - you can call them free on 0808 808 00 00 This service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

Putting some information in your profile can help a lot Click here to see how to add details as this helps everyone to see a little about you

All the very best.

Thank you so much.

It a crazy whirlwind at the moment and hopefully we will know more on Wednesday. 

The support here is fantastic very much appreciated. 

Dear

i am sorry to read of your mums diagnosis of mds high risk. I am glad to hear you have been referred to a specialist palliative care doctor as they are the experts in providing the best quality of life for patients who are not able to have standard treatment. I have a absolutely fantastic hospital palliative care doctor who has helped me cope with my very rare form of blood cancer and I also have access to a hospice palliative care doctor and a community Macmillan nurse. You need to create a network of medical professionals to guide you through the process of getting the best possible palliative treatment for your mum as quality of life is now the paramount concern. Also you must get support for yourself from the groups mentioned by other members of the community.