[MDSPerth]

Kathy, reading your story brought tears to my eyes. It all sounds so familiar and still so raw. I too am the partner of a now 62 year old diagnosed with MDS in July 2012. You can see Paul's profile below. We too (like most people on this web site) still have imprinted on our minds that phone call out of the blue that changes your life forever.

But, here we are, 8 months since diagnosis and on the outside at least, all still appears to proceed as normal. In a lot of cases, as in yours and my husbands, the diagnosis can come from routine blood tests and there may not have been any prior symptoms, so it is really a dreadful shock.

I can only liken what you are going through as a 'grieving' process. And by grieving I mean as in the loss of the life style we thought we had ahead of us. And yes, I have been sad, I have been confused, I have been angry and at times still am. And yes I ask the doctor "Is there any chance there is a mistake". (He laughed - probably hears it from a lot of people). I too still question the "why us" but then again "why NOT us". Have these emotions by all means, but do not let them overide the positives that are there for you.

Positive - he has a match. Positive - there are many people that have had very successful transplants - just read this site. Positive - he is young and does not appear to have other ailments. Positive - medical science is so good these days.

In our case, neither of Pauls siblings were a marrow match, and each time we visit the consultants we still await news that they have a matched unrelated donor for him. But, as time moves on we have to focus less on that area and make the most of what's ahead. For Paul - growth factors (EPO & G-CSF) are currently keeping him 'ticking over'. His medical team are delighted with his response - and, whilst he remains 'symptom free' we are making the most of it.

Kathy, as difficult as it may be, go forward into this transplant focusing all your energy into the positives. You have done the right thing to come to this forum. One of the hard things with Myelodysplastic Syndrom is that it is an unusual group of diseases, and the majority of people have never even heard of it - let alone be able to pronounce or understand it (like us). There are a lot of people on this website that can answer your questions about what is ahead for you and Dennis or when things crop up.

The best thing you can do is stay strong and positive for Dennis, he has a lot to go through. I will say though Kathy, sometimes I am not sure if its harder being the carer or the patient! (no disrespect meant to the patient )

Best wishes
Sandi