Hi everyone.
My condition has moved from a Sweets Syndrome diagnosis in November last, to suspected myelodysplasia diagnosis in February, and now I have my care transferred to the main cancer centre in Belfast.
Seemingly the sweets/MDS is quite rare so I am finding it difficult finding much information on line.
Just wondering if anyone out there has followed a similar diagnosis route to their cancer diagnosis and has pointers to some good online information.
Thanks in advance
Wellworth
Hi Wellworth and a very warm welcome to the Macmillan Community but sorry to hear about your MDS diagnosis.
I am Mike and I help out across our blood cancer group but I don’t have MDS although I have been on my journey with 2 rare types of Lymphoma for 25+ years.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated MDS (type blood cancers) Support Group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….
MDS/MPN/ET/PV/myelofibrosis (MF)
……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group 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.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week - getting in touch from outside of mainland UK....... use +44 207 0912230 email or live webchat…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Do get back to me if you need further help navigating the community.
