Hello All...My name is Athene, female 69years old. I am South African but am currently staying with my daughter and her family in Scotland where I have been cared for by the wonderful people at Macmillan at Borders General Hospital, Melrose. I was diagnosed with MDS Raeb1 early last year. In June '16 I started a course of Azacitidine (Vidaza) and after a bit of a hiccup in the beginning, my dose was adjusted and they lowered the dose. I struggled along with my numbers fluctuating and if they were not where they wanted them to be I had longer breaks between treatments, sometimes having blood transfusions and platelets. My last treatment was just before Christmas but my platelets have been too low to continue. I have weekly blood tests and yet another is due tomorrow. I am also due another Bone Marrow Biopsy on Wednesday. I am hoping that they will give me news and a better understanding of where I am, where I am going and how long I have! I desperately want to return to SA for a short while to sort out my property and get everything in order. I have lived there my whole life and it is a very difficult decision to make, I don't know how I am going to say goodbye to everything I have ever known and loved but know that I have to as the treatment I have received here in Scotland is so much better than I could afford in SA, even with my Medical Aid. On top of everything else, I have a serious hip issue and desperately need a replacement but they cannot touch me because of my MDS. I am in constant agony and cannot walk unassisted and live on strong painkillers daily. In my head the hip/MDS are all rolled into one and I associate the pain with my disease! I am constantly tired and just can't get myself motivated to do anything. I have always been very active and my professional life was as a Graphic designer so have always been creative yet now I cannot be bothered to do anything. Sad. My daughter and family have been wonderful to me and the support I receive is overwhelming. My other daughter lives in USA and she too is amazing in that she is in constant contact with suggestions and encouragement. I have always been a tad 'head in the sand' type character and have overcome several very serious issues in the past 10 years. I was initially offered a Bone Marrow Transplant but upon investigation they decided that I was not a good candidate and hence refused. I think that is when I realized I was in a bad place and that it was not 'just going to go away'. I started reading as much as possible about this dreadful condition and thus came upon this site. If there is anyone who understands what I am going through and can offer advice or suggestions, I would be so grateful. Just reading others' journeys helps and I hope to be able to maybe offer some encouragement to you too. I really am a glass half full kinda gal and try not to do doom and gloom but sometimes it's all there seems to be...NO! Not me Thanks for listening! X
