2017: My Singapore M.S. Odyssey

It's been a while since I last posted. This is mainly because there hasn't been much to report! It's been 16 days of rest; the things I did included: the occasional blood test (just making sure my white blood cell count was back to normal, after all the injections (which raised them)); for 24 hours I had to pee in a bottle to check my kidney function (which seemed to me to be a fundamentally sexist enterprise--not easy for a woman to do!!); I handed in my assignment for uni (not much to interject about there!); tried to stay away from people's germs (the correct face mask for this is the N95 type--looks like what spraypainters wear); and we also shaved my head further, after the short cut I posted about (this is because the hair was still dropping, and it was getting everywhere, including my eyes and up my nose. Easier to just get rid of it!). Tomorrow I will go into hospital, and will be in there for about three weeks. Tomorrow, Friday, and Saturday I will ha

This finally started happening this morning: So we did this: And now I look like this: But I'll mainly wear this (or pink versions of it): Although this animal has lots of hair: Rach xx

WARNING: this post contains some really really gross pictures. Suffice to say, things have gone very well, so those with weak stomachs should stop reading now. 💜 Okay, so the weekend with the tap wasn't the best. I spoke too soon about no side effects from the injections, and it was so hard to sleep with bone pain and not being able to move my neck with the tap. I was generally so grumpy about why they put it in a clear two days before using it. It felt to me like I was being put through extra pain and discomfort. (I asked Yati why they do this, and it's something about the availability of the doctor who puts it in, and the real possibility of delays if they'd tried to insert it on the day.) So after a rough weekend, I was very ready to get the stem cell process going yesterday (Monday). We arrived at the hospital early in the morning so blood could be taken to see if the stem cells were present (as they should be, after all those injections). All was good, so we sta

That's what the neck needle is, basically just a big tap. You can't really see it in the photo due to all the gauze, but it's sticking out, and I'm moving like a person in a neck brace because there's a good few inches of the thing going down the vein; I can feel it if I move my neck too much, and that's gross, so I don't. (Had to filter that shiz, but it's still not pretty!!) But it was all so easy; sedation is the best thing ever. I don't think I fell asleep, but I really don't remember anything past the cold feeling on my neck when I think the doctor was putting on jelly to ultrasound for the vein. My impression of the whole thing was that it was super quick, next thing I knew I was back in my room, ate lunch, then we went home. Home by 1.30 pm. Sedation: highly recommend, 5 stars! So now, back to jabbing twice a day, and numerous 'tap' related puns courtesy of Mr Fernando (which I am actually quite enjoying, it's a

Hi all, things are going really well for me at the moment, it's great! On Tuesday we went to the hospital to pick up and learn how to self-inject the GCSF, the drug that encourages stem cells out of my bone marrow. I was all like, 'yeah, I've done years of self-injection, I'm all good!' but the difference is, these syringes do not come with an auto-injector, which is what I used when I was injecting all of my MS drugs (there was one auto-injector that had a light that came on highlighting the target for the needle, and another that set a bell off when it was done. More interesting (geeky) MS-life facts!). So the lack of auto injector left me with my belly exposed (the injection site), staring at the syringe in my hand--couldn't do it. Enter the Singapore Superhero who is Peter! It's his most important job at the moment, twice a day, 8am and 8pm. He's so proficient at it, what a star 😍 Anyway, so the injections have been going well, and I'm

I just want to start this post by acknowledging the very sad loss of a close friend and family member of the Fernando family; my heart is going out to family back home, love you all 💜 Pretty short post today, lots of pictures. Friday was day 1 of chemotherapy (just 'conditioning' chemo, to help the process of getting the stem cells out of my bone marrow - proper MS-killing chemo is happening at the end of the month). Despite this, it is still chemo, so they loaded me up with anti-nausea drugs before starting the chemo drip. (Look at this pump!!!) They used and octopus attachment to the cannula, so I had three things dripping into me at once (each level of the pump above is for a different drip, and each drip can be going at different rates - that's a geeky point that probably only interests my Tysabri family). The purple one is the chemo. I feel like it becomes scarier when it's in a purple bag, but apparently it's that colour to keep the light