Passing the Time - Day 8 + 9

Passing the Time

The past few days Mom and I have just been settling into our room and watching some TV. Dr. Kharya confirmed that she will start treatment tomorrow (February 12), and on Monday we will be moved down to the 5th floor into the new ward designed for HSCT patients.

Mom finished the entire season of Stranger Things. She's excited for the second season already.

Today I spent the afternoon working on my linguistics homework, as I'm currently in university pursuing a bachelors in Cognitive Science. My professor agreed to let me do my homework while in India and e-mail it to her, so that I don't have to quit the course. Afterwards I spent some time doing mandala artwork, a small hobby of mine. Dr. Kharya and his team noticed them during his visit and said they were very nice. They are all so kind.
Every day Dr. Kharya and his team come in to see how Mom is doing. They check her weight and blood pressure, her temperature, and remind her to drink enough water. So far it seems that they've started her on a neutropenic diet with only cooked foods, so as to minimize any risks. She's happy with the food though, as am I.

Questions and Answers

I decided that I'm going to make a list of tips and suggestions for anyone who is travelling to India for HSCT. There a few things that would be helpful to know, but you don't think of them until you've been through the experience, like how important it is to get the Dukoral vaccine. I learned that the hard way.


For almost every meat option there is a vegetarian one, as a lot of people in India are vegetarian. It's nice having that option. I had some biryani rice, some steamed veggies, and some fresh cut fruit for lunch, and Mom had some chicken with a tomato sauce on it, rice, and steamed vegetables. I should mention that the menu here has indian food available as well as continental - so those who are not a huge fan of spice or indian flavour are accommodated for.

I've had a few people message me with some questions that I'll address in this post. For clothing, the hospital has Mom wear hospital clothes. They are quite nice. They give you pants and a kimono-style shirt to wear. As for myself, they requested that the attendant bring 100% cotton clothing (at least 2 outfits) so that they can autoclave them and make sure they are sterile each time they need to be washed. They need to be cotton to withstand the rigorous cleaning process. I found some long shirts and leggings and I just keep some plastic flats on.

As for getting to the hospital and hotel, the hospital arranges to have someone pick you up from the airport and bring you to the hotel, as well as a driver to bring you to and from the hospital when needed. At the end of treatment, someone from the hospital drives you to the airport to catch your plane. There is no need for taxi money unless you decide to venture off on your own during the pre-testing days, but they typically take all day so there isn't much time.

There is a foreign currency exchange on the ground floor of the hospital, although I haven't used it myself so I don't know the specifics of what currency they exchange. I know they can exchange USD and INR though. Apparently you cannot bring rupees out of the country, so Mom and I have just been using our Visa card and it works fine.

Mom and I were discussing today how frustrating it is that neurologists in north america are so reluctant to support HSCT. I read an article today outlining some of the reasons why certain MS drugs are put to market while others aren't - for example, Rituximab. Rituximab is a drug used for treating MS off-label, but the company that manufactures the drug (and owns the patent), is currently fighting to remove the right for Doctors in the US to prescribe Rituximab off-label (using it for MS is off-label). They have created a new drug very similar to Rituximab called Ocrelizumab. The patent for Rituximab will run out in a short while, which might be why Ocrelizumab is being put to market instead. However, Ocrelizumab has a far worse profile of side-effects and complications. But there is no money to be made in Rituximab once the patient runs up - so the money goes elsewhere. Of course none of this is to be outright admitted, but it is quite obvious what they are doing.

It is a shame that this treatment is unavailable in Canada despite all of the research that shows it's benefit for MS patients. Neurologists argue that "there are many good disease-modifying drugs currently available to MS patients, while HSCT is unproven", however most of the drugs fail to work in slowing disease progression and it is well documented that they lower the patient's quality of life (nevermind emptying their wallet).

My Mom was told it would be unethical to treat her with HSCT by the neurologists in Canada. What's unethical is watching someone deteriorate when there is something to be done about it.

Anyway, no point in worrying about the negatives when we have so many positives to look forward to in the future!

Tomorrow at 6 AM Mom will be given her IV and administered some cyclophosphamide to begin treatment. The day has finally come!

 Some of the art I did today to pass the time.

 This is the room Mom and I are staying in until Monday. There's a bathroom but it isn't visible in this photo.

 The fresh cut fruit I had at lunch, with some hot water in the thermos so I can make some tea or instant coffee.

 This is the bowl of fruit that gets brought to our room, along with the water bottles we're provided.

Here is some pasta I had the other day for lunch!