Sweets Syndrome, MDS

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.

I hope it is ok to post a link to a support group outside of MacMillan.  I have found MDS UK Patient Support Group incredibly useful.  https://mdspatientsupport.org.uk/

They have Zoom sessions for particular topics which are with experts in the field.  They gave me advice about how to get a second opinion and which are the UK experts in MDS to approach and how to do it.  They are amazing.

Hi Wellworth, I also have MDS. I was diagnosed in March 2015 and shortly after I was diagnosed with a severe spinal stenosis condition which put me in a wheelchair for 6 years. I have treatment 3 times a week at home by self injections. My bloods have been up and down for 10 years but recently my bone marrow has gone haywire and there's not much left to do because I'm on maximum treatment of Aranesp. If you click on my username it'll take you to my profile page. 

When I first saw your username, Wellworth, I thought to myself there's a name from the past. You mentioned that you are attending the cancer hospital in Belfast and that made me smile because I was born in Belfast almost 67 years ago and lived in the Shore Road area, then when I was 7 we moved to Ballysillan. I married my wife in 1979 and after a brief 5 year stay in Bangor we moved to her birth area of Killinchy and we're still here. If I can find where I click for a friendship request I'll send it and then it's up to you to accept. 

Speak soon Wellworth.

Sorry Mike, I didn't know that I was replying to you when I thought I was replying to Wellworth. I'm a bit rusty after 2 years away as my wife had a cancer diagnosis and was very ill so I dedicated my time to help her.

Good to see your name again.

Btw I read your updated profile and I am in awe of you in respect of what you have gone through so far.

Tvman 

No problems tvman it’s just great to see you are still alive and kicking……. as I am officially Incurable, although I am not a member I do have a look in the Incurables Group from time to time and see your posts and know about the journey your family have been on.