2017: My Singapore M.S. Odyssey

More beautiful flowers from my gorgeous friends 💛 My leg spasticity (stiffness) is much much better (most noticeable when I stretch my quads, and when I'm getting out of bed). I had been noticing this recently, but I've always had good days and bad days, but this has been a prolonged period of 'good', so we can say that it's better. This improvement will help my walking (imagine your legs not really wanting to bend at the knee to take a step. That's spasticity, and it's not helpful). Exciting! Another wig. (Loving having a choice as to how I want my hair to be each day! Sis-tina has requested that I get a rainbow one. We'll see.) Have a great weekend everyone! Rach xx

Beautiful 'welcome home' flowers sent by my even more beautiful friends! xx Hi all! I've had a few people asking whether I know if the treatment 'has worked'. I thought I'd try and answer that question (to the best of my knowledge at the moment!): I think that we can all assume that the treatment is working. This is because we wiped my existing white blood cells (circa 27 July), and related immune system, down to a recorded 0.04 (40 WBC per microlitre, when normal would be 4,500 - 11,000). Putting the stem cells back allowed my bone marrow to start producing WBCs again. However these are naive white blood cells. They don't know anything about anything I had immunity against in the past, or how to suppress viruses that already lie dormant in my body (such as chickenpox). So all of this means that at the moment I'm avoiding large crowds of people (and their (probably inevitable given this winter) sicknesses); I'm basically eating a pregnancy die

I am home, and it's glorious! I appreciate every little thing about being back, and I don't even care that today's temperature high is 9 degrees celsius. It's welcome, after the ubiquitous heat of Singapore (which has a high today of 33C). Today I want to thank everybody who helped me to get HSCT. The financial contributions were overwhelmingly generous, and by helping me get this treatment you have all quite possibly saved my life (I am not being dramatic, it's true). You have given me a chance to look towards the future with real hope, which means everything, and I really can't thank you enough. Also those of you who donated your time to help with the fundraising effort, who sent messages of support, and generally to all my quiet champions, your stoical comfort helped me so much, particularly when things were difficult. Thank you for reading these (they weren't just excuses to show people pictures of my cat, promise!), I'll still post here every

This is a photo from 15 years ago, taken the last time I was about to leave Singapore. Nowadays, I don't know if I'm quite up to dancing my way through the airport, but I assure you, I'm mentally doing the same thing! (Photo: circa 2002, when members of Bel Canto (award-winning senior girls' choir at Burnside High School) were on their way back from a festival in Vienna (look at those shoes Pens! Do you remember?? Converse for life!).) Blood results from Monday: White blood cell: 4.59 (normal now) Platelets: 198 (were normal last week; normal still) CMV: still negative (long may that last!) Blood results are pretty boring now; there are some results that are not normal, of course - polymorphs, monocytes, red blood cell (only just, give me a break! 3.6, when 3.9 is normal), haemoglobin (also only just, 11.0, 11.5 considered normal), haematocrit (PCV) (what?), RDW (red cell distribution width, oh of course!), and the presence of atypical mononuclear cells (which

Kind of a boring post today, sorry (nothing akin to neck needle photos, (un?)fortunately) (way to sell your blog, Rachel). Blood test results from the hospital visit today: White blood cells: 3.97 (this is an expected decline, and I did say to Mum when we were waiting for the results that I wanted it to be lower than last week, because higher would be out of the range of normal. This result is just slightly lower than normal, and that's okay, and I'm told that they'll likely stay low for a while yet). Platelets: 174 (really good, and normal) CMV: negative (also really good!) Today was the last time I will see Dr Loh, sadly, as she won't be at the hospital next Monday. So next week's Monday hospital visit will only involve taking blood, and a haematologist will contact me if anything's unusual. So today's visit was a wind up for me with her, which I wasn't prepared for! She's the best 😊 Other than hospital once a week, the only other thing

Hi Team! Great news from the hospital visit, here are today's blood results (the ones I understand / find relevant at least): White blood cell: 10.00 (Whaaaaat!! 😃😃😃) Platelets: 102 (much improved from 22, which is what they were on Thursday) CMV (a virus that 85% of people carry (including me), and can cause some pretty nasty complications if it gets its knickers in a twist): zero (no activity present) This blood test good news spawned additional excellent news: I got my central line out (it was in my chest, just below my collarbone): And I will be allowed to come home HEAPS earlier than planned, we're going to look at changing flights to very early September! I'll actually be able to see my husband on our anniversary, and get in an early special vote for the election (so I don't have to join the hordes on 23 September) (those two September highlights are listed in order of precedence). And I'm feeling good, kind of normal really! A little tired,