Hi everyone,
I’m new here. My husband has just been diagnosed with High Risk Myelodysplastic syndrome (MDS). We’re still waiting for results of cytogenetic tests but he is starting chemo next week anyway.
Any insights into what may be ahead of us would be helpful. I am a retired nurse but any logical professional knowledge flies straight out of my mind when something affects me and mine!
Hi @SueD and welcome to the forum. I can imagine it’s very different when it’s somebody close to you that is diagnosed with a condition. I know all the strategies I use with children in teaching go out off the window with my own children! I’m sure you’ve read the info on Myelodysplastic syndrome (MDS) on the Blood Cancer website but if not, here it is:
I have lymphoma but there will people who can share their experiences of a Myelodysplastic syndrome (MDS) diagnosis. I can imagine it’s all been a bit of a whirlwind and lots of waiting around for results. How are you both doing?
Welcome to our forum @SueD you must both be in complete shock and so anxious, I know I was when I was diagnosed with another blood cancer.
Also I think being a retired nurse must be a double edged sword.
You might also know how research and trials have come on leaps and bounds recently and individual targeted therapies are coming in.
We are here to support you both and I have found that no matter how we arrived here many of us share the same fears, thoughts, feelings and practicalities.
Perhaps this time will give you the opportunity to write down all the questions you might both want to ask because as soon as I walk into a medical setting my mind goes blank.
Be kind to yourselves, you might be in shock, If you would like to talk to someone the Blood Cancer UK support line details are above and we are here for you.
Please keep posting how you are as you know carers are the unsung heroes.
Others might be able to share their experiences of Myelodysplastic syndrome (MDS).