Received an Myelodysplastic syndrome (MDS) diagnosis just before Christmas. Age 64. 2023-01-13T00:00:00Z Previously well other than tiredness. Shock, disbelief and fear. After a bit of a roller coaster 3 weeks now know that I’m considered low risk. Hb 91 and EPO treatment planned if it drops much lower. Have already benefitted from some of the information on this site thanks and will continue to use it. Meantime off to Spain for a few days later this month (travel insurance obtained -phew) and hope to be fit enough to continue my golf when the weather eventually improves.
Hi Helen…i say this to everyone…its a scary and stressy time for you right now as it was us all…but you know what…you know what it is now and you will get good care.
Wishing you all the best and enjoy your break😎
A very warm welcome to our forum. I am really sorry to hear of your diagnosis and I hope you are doing okay?
Describing the past few weeks as a rollercoaster is something I’m certain many of our community will be able to relate to.
So i am really pleased you have found us & have already managed to find some helpful information.
I wanted to let you know that we also have a support service team on hand 7 days a week should you ever wish to talk anything through- Blood cancer information and support by phone and email | Blood Cancer UK.
In addition we also have some really great booklets available to order or download for free. This one in particular can be useful when someone is newly diagnosed- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop
It’s great to hear that you have something planned in the diary to look forward to. Some Spanish sun will no doubt be a lovely tonic.
Again please do know we are very much here for you should you need any support at all.
Take Care, Lauran
I’m so sorry about your diagnosis. Any diagnosis of this sort is such a shock, and is so frightening,
isn’t it? I’m not sure if any of us completely come to terms with it. But I’m so glad for you that it’s considered low risk, and that you don’t have to start treatment just yet.
Brilliant that you’re getting away for a holiday - life doesn’t need to stop (although it’s so easy to be afraid to live, when you have a new diagnosis.) Hope you really unwind and enjoy it. And get that golfing in too!
Please let us know if you have any questions, or need a bit of support.
All the best.
Thanks everyone. Will stay in touch
Hi @Helen2 I am so glad that you have found us.
I was also diagnosed just before Christmas with another blood cancer, 19 yrs ago, and I immediately felt in a bubble with shock, disbelief and fear with the whole world going on around me celebrating the festive season.
Yes, go to Spain and have a brilliant time and then get back to your golf
Look after yourself and please keep posting I look forward to hearing more about you.
Absolutely understand how you feel
after diagnosis of Myelodysplastic syndrome (MDS)! I just heard “Plastic Syndrome” when I was diagnosed and had no clue about it!!
For an easy-to-follow video on low-risk Myelodysplastic syndrome (MDS) and treatments , please take a look at this on the Myelodysplastic syndrome (MDS) UK website.
Hope it helps. Finding out more about the disease can help in coming to terms with it -or it did for me! Also talking to others with exactly the same rare disease makes you feel not so alone.
Good for you in navigating the travel insurance nightmare and getting some winter warmth soon!