Hi Everyone
My condition has progressed 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 may have pointers to some good online information.
Thanks in advance
Wellworth
Hi Wellworth and well done navigating across to this corner of the Community.
As I said in your post in the New to Community, I don't have What Is MDS but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
So let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts.
Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
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.
You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out MDS Support UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
PS: I see that you have not actually joined this group. Joining will ensure that you get notifications when people post in the group....... just look for the [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.
