2017: My Singapore M.S. Odyssey

The above is all I've taken away from my first appointment at the hospital today. Nah, jokes (although flattering), it was a lovely first visit, and really good to finally meet everyone. The heat and waiting outside the apartment for a taxi to Raffles Hospital meant that I was pretty bad at walking when I arrived. I felt like I gave Yati (the transplant co-ordinator / Assistant Manager / my point of contact once I was accepted for the treatment) a bit of a fright - I don't think she was expecting me to be having such difficulty walking (3.5 EDSS can be misleading, I guess, and I am so sensitive to the physical environment). But it was all good, and once I cooled down, things were a little easier. Anyway, she took my height and weight, to calculate how much drug I'll need for the chemo (photo courtesy of Paparazzi Peter): And then they took crazy amounts of blood (checking for viruses, antibodies, everything really). For my Tysabri family, there were no issue...

We left on Sunday night; WLG - AKL - SNG (the most direct route possible). I flew Business Class, to avoid being around too many other people who might be harbouring colds or 'flus, and that was lovely. Although despite the fact that Air NZ Business has lie-flat beds, I only managed to get about an hour or two of sleep. I also didn't really wear my mask (which I was supposed to do) because I found it really stifling, and hard to breathe comfortably. I'll have to wear one on the way back, but hopefully I haven't picked up anything treatment-delaying with my failure to do so on the way over. Upon arrival at the airport, we flew through customs (seriously, it was so quick) and went to get a taxi to our apartment where a member of the property management staff met us. Getting a taxi wasn't the easiest though, because the drivers of regular cars wouldn't take us and all of our luggage (three months people, don't judge!); James (one of our house/cat-sitters) ...

We're leaving TOMORROW! I have been thinking that I might need to clarify the treatment I'm travelling for: HSCT is an intense chemotherapy regime, and it is commonly done for certain types of cancer all over the world, including in New Zealand. The stem cell aspect of the treatment is just to enable a quicker recovery (so the body starts producing the required blood cell levels again). The main part that is 'new' when it comes to what I'm doing, is that it is new as a treatment for MS. The reason I cannot have this treatment at home is because it hasn't been 'proven' as an effective treatment for MS (as there is not yet 10-year follow-up trials with MS patients, etc). That's a rant I'll save for another time! Probably obviously, the past couple of months since my last post have been busy. I continued to be overwhelmed by people's generosity with the fundraising--the empathy and magnanimity from so many amazing people is so truly hea...

Well, things are all go here! Fundraising is in full swing: what I want to say first of all is I am so deeply touched by people's generosity. Particularly financially on the Givealittle page and other personal contributions, but also with the support offered to help with arranging other fundraising events and initiatives. So many wonderful people are willing to give up their time to help me, I'm totally blown away by how amazing people are. So thank you, everyone, for all your help thus far! Today I spoke with a reporter from the Dominion Post (set up by my beautiful friend all the way from Sydney, Jamie <3 ). I don't think I'll necessarily like the finished product much when I see/read it (people might have picked up so far, I'm not a fan of talking about myself), but it's a good way to raise awareness, not just about my plans, but about MS generally. Over the last week we have secured an apartment for our time in Singapore. It was kind of a daunting t...

Overview and background of my reasons for going to Singapore to receive HSCT for my M.S. in 2017. Well. I'm feeling really awkward; it's not comfortable for me to write about myself so publicly. However, I wanted to write this blog so I can update people about what's going on with the treatment - both in the planning stages, and while I'm over there. So here goes: Basically out-of-the-blue in February, I decided to look into stem cell treatment (Hematopoietic stem cell transplantation ( HSCT )) for my multiple sclerosis. I'd heard about this a couple of years ago, but didn't seriously consider it - it seemed prohibitively expensive and just generally not 'proven' enough for me. HSCT involves (at a basic level) suppressing the immune system with chemotherapy, and transplanting the patient's own stem cells (extracted before the chemo) to assist with the immune system's re-boot. The idea, as a treatment for MS (and other auto-immune conditi...