Pretty, and look younger than 31

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 issues at all with finding a vein:

After all that, we met with Dr Loh. She's really cool, and very obviously knows her stuff. We went through my MS history, and the drugs I've been on. Then she talked through the transplant process. There were a few clarifying points that were really good for us to learn:

• Catheterisation is a thing for when I'm getting chemo, because the Cyclophosphamide (one of the chemotherapy drugs to be used) stays in the bladder and can cause irritation and cystitis (UTIs). So emptying the bladder is crucial, however I have (MS induced) issues with urine retention, so to be safe we'll catheterise me during chemo.
• When I'm in isolation in phase 2 (intensive chemo and stem cell transplant), I'm not imprisoned, Peter and Mum (when she arrives) can be with me (as long as they don't have a cold or anything), and even stay overnight if they want to (but I don't think we'll do that. We'll see though). (Goodness I use a lot of brackets!)
• I need to find a haematologist back home, to monitor my blood for recovery and signs of particularly cheeky viruses that might cause issues.
• Recently-ish, Singapore has reduced its phase 2 chemotherapy protocol for this treatment, from four days down to three (which wasn't a surprise to me, I had heard about this when I was in NZ researching Singapore HSCT). This is because a young woman died in Singapore General as result of the previous level of chemotherapy. I will be the fourth patient at Raffles treated with this new 3-day protocol. Dr Loh was quite upfront with me about this; she said that they do not yet have data about whether this change has also reduced the efficacy of the treatment. However this reduced protocol has been used for longer overseas for other autoimmune conditions (Autoimmune Hemolytic Anemia, I think she said), with success. So the upshot is that there are positive signs that this treatment is just as good. But they won't know about its use for treating MS for a couple of years. This new protocol has a reduced rate of infections though, so that's a good thing. My thoughts about this change in protocol (whilst I don't feel that it's ideal that I'm a little bit of a guinea pig here), is that reports are that the chemo drugs used in Singapore are quite intense anyway (I think more intense than in other clinics around the world in, say, Mexico or Russia), so it seems that my MS'll still get a firm boot out of my system. Also, after this treatment I will do my utmost to mentally and physically be as healthy as possible, so as not to create the conditions that were conducive to MS getting its grasp on me in the first place (a la 2005-2008 Scarfie lifestyle - not the healthiest). Mindset is paramount here, I believe this treatment will work for me. 

Dr Loh also did a quick physical, including strength-testing. She found that my right leg is noticeably weaker than my left, which I had been noticing recently. I think this means that some kind of relapse has occurred affecting my right leg, because historically if a leg was going to be more useless for me, it would be my left. Good times in non-Tysabri land.

Anyway, all in all a positive initial appointment! Up next: a day (and overnight stay) of Cyclophosphamide on Friday. 

Here is a photo of Z.J., taken by our house-sitters and sent to us yesterday. They report that he seems happy, although in this photo he seems suspicious about these strange people in his house.

Rach xx