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!

Our First Night in Artemis Hospital - Day 7

Today Mom and I went to Artemis Hospital around 1 PM to be admitted. We were put on the 6th floor, I'm not sure if we will be moved to the 5th floor which is newly renovated. Either way, we are just happy to be here.

Ms. Meenu had plug converters brought to our room so that we could plug in our devices. There's a TV in the room with cable, although 90% of the channels are only in hindi. That's okay though, we managed to find a few channels with english movies. 

The room is pretty big. We have a washroom with a shower in it and a closet to keep our luggage in. There's a HEPA filter to keep the air clean, and cleaners come in a few times a day to mop the floor and clean the bathroom. Our bed sheets are changed everyday, and there's a futon couch with a pull-out bed in it for me to sleep on. Mom is staying in a standard hospital bed. 

The food here is very good. Our first night here Mom was given veggie soup, chicken with gravy, and some arabiatta pasta, with her choice of either tea or coffee (or what ever other beverage she'd prefer). 1 Litre water bottles are placed in our room every day for us to drink. If we'd like anything else we just have to dial the extension for the F&B Supervisor (food and beverage). 

They sent an IT person to come set up our devices on the WiFi. The internet isn't too bad in the evenings, although it is a bit slow during the day and not great for streaming. However if you download what you would like to watch during the evening, you can play it during the day without depending on the internet, so it works just fine that way. I should also mention that the TV has an HDMI port, so you can connect your laptop to the TV.

The dietician came to meet with Mom and assess her diet. So far she says there are no restrictions on her diet, but that may change once treatment starts, for example during neutropenia (the presence of abnormally few neutrophils in the blood, leading to increased susceptibility to infection). 

Our first night here many people visited us to make sure we were okay with our room and to see if we needed anything. They were adamant that if we needed anything to just give them a call and they'd fix it right away, and pointed out our phone beside the bed with a list of all the extensions of the various services we'd need (food and beverage 24/7, dietician, house keeping, etc.)

There is a fresh fruit bowl put in our room every day, with bananas, apples, oranges, and grapes, and all of the meals are brought to your room. A person comes to visit us each day to ask what we'd like for breakfast, lunch, and dinner. They have instant coffee here with powder creamer, so Mom's pretty excited about that.

Our hospital door is lockable with a deadbolt, although there is a security guard right outside of our door watching the elevator, so we don't feel too worried. There are also security guards at the elevators on the ground level, so that only permitted guests have access to the upper hospital floors.

The nurses are very sweet. They come check Mom's vitals every morning and ask if there's anything we need.

Please pardon my boring tone during this blog post, I'm still having a tough time sleeping at night and it's beginning to affect my ability to write clearly. I'll post some pictures a bit later.

All in all, Mom is glad to be here and everything is going well, other than a few minor mishaps (they always bring steamed milk for our cereal instead of cold, which we find very odd, but they are happy to fix it when we point it out). 

In the next few days she will start treatment with some cyclophosphamide. 

The Results - Day 6

Every day Mom and I feel better and better about Artemis Hospital's HSCT program. However I am not sleeping well at all. Trying to adjust to a 10 time zone switch is no easy task, and I'm beginning to feel nauseated, irritable, and confused most of the day from the lack of sleep. I hope this goes away soon, as I'm fairly certain I'll wake up in the middle of the night and be sick soon enough.

Today we again went to the hospital in the morning with Lis. We started the day off with meeting Dr. Sumit Singh to discuss the results of all the tests Mom had done.

Her heart, lungs, and blood work all came back fine (although he could tell from her lungs that she was a smoker). He showed us various MRI images of her brain and spinal cord, and pointed out where her lesions were. For the first time, Mom and I could put a face to the name of the lesions on her brain. Until that point we had never seen any of her MRI's and didn't really know what her lesions looked like. I told him we were happy to hear anything he could elaborate on.
He explained that the lesions started out smaller, and that they've grown to become little patches of lesions that are more advanced and have created axonal damage, which will be harder to recover from. He also said that her left visual pathway is damaged, as the visual field image test revealed that her left eye does not communicate well with her brain, due to a lesion somewhere between the retina and the area of her brain responsible for processing images.

He noted that there are some lesions on her spinal cord, but they are more so in her brain. In regards to her memory and cognitive impairment, he said that the lesions are in areas of the brain required for critical thinking and memory, and that is why her memory is so poor. Overall, he said her brain has noticeable atrophy - that means that her brain has began to shrink over time to be smaller than what it should be for her age, due to the MS.

Dr. Singh's final comment was that due to the advanced stage of the MS, the prognosis is only to hope that we can stop the disease. He said any further improvement or reversal of damage will be considered a nice bonus. We already knew this, but of course, one always hopes for more. It would be wonderful if some of her brain fog could lift.

We get to keep all of the test results and MRI images, as well as the notes that Dr. Singh took on Mom's status and condition, which is nice because we can look back on how she was before treatment and compare it to her condition post-HSCT. They are all written in English. I should note, most everyone here speaks english and there are few communication problems, especially in the hospital.

Despite being told that Mom's MS was advanced and that her brain has began to shrink, she held onto her positive attitude, and never forgets how lucky she is to be here receiving HSCT. She's glad we were able to come now, as her EDSS score was increasing by roughly 1.0 point every year.

After meeting with Dr. Singh, all of us headed upstairs to meet with Dr. Kharya once more. He confirmed that we will all be admitted to the hospital tomorrow, but that only 2-3 patients' treatment will be started per day, as he does not want 6 of them being harvested at the same time. It takes 4-5 hours to take the blood out and filter it to collect enough stem cells, and then 3-4 hours to cryo-preserve them. Linda joked, "you don't want to run out of freezer space by having us harvest all in one day!" haha.

We headed back to the hotel and had some dinner in the restaurant. Mom wasn't sure what to order, so she tried some chicken biryani. She requested that it be milder in spice, however this is India and biryani is a dish full of spices, so that wasn't very easy. She struggled with the heat of it, but she never complains and tries her best to simply enjoy the new experiences and tastes.

We spent the rest of our evening checking out the pool deck on the roof of the hotel, laying in the sun (myself mostly, as the sun makes Mom feel like she's "on fire", another side effect of the MS). We talked about the results of her tests and I listened to Mom tell me about what life is like with MS. I always want to know what she feels like, and even though she's told me many times before, I know that few want to hear about the difficulties MS leaves one with. It is a struggle that many internalize and do not speak out about, because truth be told, most people simply don't want to hear it. She needs a listening ear now more than ever.

We headed down to our room once the sun began to set, and had a video call with Dad. He's amazed to hear what India is like. I don't think he could handle it here, as the food is too spicy, there is no Tim Hortons, and Dad is very peculiar about his routines. Nevertheless, he supports us from afar.

We ended the night with a few episodes of "Stranger Things" on Netflix. Mom likes it so far.

Tomorrow, the journey with HSCT begins at Artemis, when we are admitted around 1 PM.

Here we go!

 Mom and her chicken biryani!

The area where we sat in the sun on the roof.

Meeting Dr. Gaurav Kharya - Day 5

Our day began at 10 AM with a taxi bringing us to Artemis Hospital. We wrapped up some pre-testing by having Mom do an MRI, a CT scan, and a full neurology exam.

I should mention that all of the tests are done very promptly with care taken to ensure we are comfortable at all times.

Ms. Meena and her assistant helps guide us and the assistant pushing Mom around the hospital. It's a huge facility. There are probably more doctors in this one hospital than there are in the entire province of Ontario!

After all of the testing was done we headed to the cafeteria. I had some vegetarian biryani and some type of tofu gravy thing (I told the young man working to give me whatever he recommended). I love trying the food here and trying to take in as much of the culture as I can.

Mom is having a hard time adjusting to the fact that there is no such thing as coffee here - not the type of coffee she drinks anyway. When anyone from outside North America visits Canada, they quickly learn that 'regular coffee' does not indicate espresso, cappucino, or latte. Vice versa, Canadians quickly learn that 'regular coffee' does not mean a large cup of weak coffee, it means espresso.

Having been a barista myself I figured the best I could find for Mom was an Americano, a cup of watered down espresso. It wasn't her favourite, but it will do.

After lunch with some of the fellow HSCT patients, we all headed upstairs to meet with Dr. Gaurav Kharya, the head of oncology and the Doctor who will oversee the HSCT patients and the protocol we will follow.

Dr. Kharya is a very approachable Doctor who appears quite confident in his work. He explained the exact protocol of treatment we will follow, and whilst doing so he explained other facilities' protocol and why he advises the one that we will use, citing various medical literature that he's researched.

He answered all of our questions regarding Rituximab (another immune suppressing agent used in other facilities), and explained why previous patients encountered certain problems in their treatment. Nothing was left off limits and we were able to ask anything and everything we were concerned about. When everyone felt satisfied in his answers, we went back to the hotel.

After meeting Dr. Kharya and getting the chance to hear his medical knowledge in first-person, Mom and I both finally felt 100% confident in our choice to go to Artemis. We had chosen the right place. There are so many people that doubt India and the protocol they follow, and up until that moment Mom and I still felt 10% unsure of how to feel. We are confident in Artemis Hospital's protocol and trust Dr. Kharya and his staff.

I inquired about follow-up check ins with Dr. Kharya, and he said he will be in touch with us every two weeks after treatment when we send him the blood work diagnostics from Canada.

All of the fellow patients are lovely people. I had the opportunity to take a picture of most of them, all but the one gentleman from Scotland, John. We will have to take a new one when we're all together again.

Tomorrow we are heading to the hospital in the morning to meet with a dietitian who will discuss what Mom should eat during treatment, and then we will have our final consultation with Dr. Gaurav Kharya and Dr. Sumit Singh to go over all of the test results. We are slowly starting to relax and take in our experience in India. Mom is starting to miss Tim Horton's coffee, though LOL.

From left to right, there is Peter from the Netherlands, Linda from the US, Pam from the US, then Rod from Australia, and my Mom, Janet from Canada. We were missing James from Scotland at the moment.

 Below is a panorama of the view we had from the 6th floor board room we met Dr. Kharya in.

 Mum and I out front of our hotel.

 Mum waiting for her MRI at Artemis Hospital. I convinced her to wear her hair down today in case she happens to go bald from the chemo during therapy! Enjoy it while she has it.

First Day of Pre-testing and Meeting Dr. Singh - Day 4

Today we had the first day of pre-testing at Artemis Hospital. Indian hospitals are very busy but also very productive.

We arrived around 11 AM, and began with blood work. They tested for everything and anything, vitamin levels, you name it.

Then we moved to the x-ray zone and mom had a chest x-ray done. She put the hospital gown on backwards and couldn't seem to figure out why it wouldn't fit right (LOL). During her ECG we met a Doctor who was very happy to hear we were Canadian and was a big fan of Justin Trudeau. We ended with a Pulmonary Function Test to check Mum's lungs.

While she did that I spoke to Ms. Meenu and Mr. Amrit Pal Singh (international executives of Artemis Hospital) and told them how long it would take for us to receive all of these tests in Canada. For an MRI, the average wait time is a month to a year depending on what the reason is, and for other tests it can range from 3 weeks to 4 months as well. All together, to have all of the tests completed that we did today, it would take a year or more to be fully prepared for this treatment. We love our country, but receiving medical care so quickly here is almost a shock for us.

After Mum's PFT (Pulmonary Function Test, to see how strong her lungs are) we headed to the cafeteria for lunch, where they had a Subway and various other Indian food shops, as well as a Costa Coffee. One thing we've learned is that cream does not exist in India. We asked Lis if cream is sold anywhere in India, and she responded with "what, face cream?" LOL, good thing Mum is okay with taking her coffee black.

After lunch Mum had a CT scan done to check the function of her kidneys. She drank two litres of water within 10 minutes, I never knew she could drink so fast.

We then went to meet Dr. Sumit Singh, the head of neurology at Artemis. His office was littered with various diplomas and awards. He evaluated my Mom and discussed her history of MS, her limitations and disabilities, and then discussed what he thought a probable outcome might be for her. He said that for memory impairment it is likely that the HSCT will prevent further decline, but that improvement from her current status is questionable. He said he can provide a more thorough explanation of the prognosis of this treatment and the potential outcome once Mom has an MRI done.

Tomorrow she is scheduled for an MRI of her brain and spinal cord, a CT scan, as well as our meeting with Dr. Gaurav Kharya, the Doctor overseeing the HSCT program at Artemis Hospital.

On a side note, the traffic here is nuts! I've never heard so many horns honk at once in my life. And there are just as many rickshaws as there are cars and scooters.

By the end of the day we were tired right out from all of the information we absorbed, but we are looking forward to meeting Dr. Kharya tomorrow.

 Mum waiting outside the room for her kidney function test, she had just finished drinking her second litre of water.

This is Lis Wiberg, sitting chatting with an Indian man we met in the cafeteria.

Meeting Lis Wiberg - Day 3

Today Mum and I woke up at around 3 AM and stayed awake all day. The time difference is so big here that we can't usually sleep for more than 5 hours. This was our third day in India.

We had some brunch, and then got ready to meet with the international case manager of Artemis Hospital, Lis Wiberg, as well as the fellow patients who will be undergoing the same treatment.

We met everyone in the bar of the hotel. The fellow patients are very lovely people. There are patients here from Australia, Scotland, and Holland I believe. It was so nice meeting everyone, as they understood what it takes to get into this procedure and how MS can affect you. Everyone in the room understood MS, HSCT, and why we're all here. It was a heart warming moment.

MS isn't typically a disease that you can see, or one that many people are aware of. It's difficult for people to understand the brain fog, confusion, difficulty walking, and the host of other strange symptoms MS causes. Even  myself, at times, have had difficulty truly understanding the fatigue and confusion my Mom has felt.

Few understand the urgency that MS patients feel when it comes to receiving treatment. For many their future is uncertain, changing on a day-to-day basis. As we discussed in our meeting today, MS patients can't help but go to bed wondering, "will I be able to walk tomorrow?"

We are all so happy and grateful to be here in India, able to receive this treatment.

Lis Wiberg is wonderful. She's a danish angel. She is so kind and does her best to explain everything to us and answer any of our questions and concerns, and she is funny too. She keeps the mood light and maintains the view that there is no use in being negative, and every time someone does not speak well words of the facility, she works even harder to improve and perfect the standard of care at Artemis. In my opinion, she really takes all of the feedback towards Artemis and tries to make the most of it.

 She explained the pre-testing schedule that we will follow over the next 4 days. Mom will have an MRI, an ECG, PFT, and meet with a dietician to determine what type of food she should eat during treatment.

Lis explained that there will also be a psychologist visiting us while we're in the hospital to help with any anxiety, frustrations, home sickness, and worries that the patients may feel (she may have said psychiatrist and I am remembering incorrectly).

During the pre-testing days we are scheduled to meet with Dr. Gaurav Kharya, the head of Oncology and BMT, and Dr. Sumit Singh, the director of Neurology.

To those who are not that familiar with HSCT protocol, one celebrates their "second birthday" on the first day of transplant - the day they receive their stem cells back to re-program and remove the memory of MS from the body. This is considered a brand new version of the person, and is celebrated as being "born again" in a sense with a brand-new immune system.

During treatment, my Mom will have two birthdays - her stem cell birthday, and her actual birthday. Funnily enough, another patient here has the same birthday as her, March 1st!

After chatting with everyone we returned to our room to have some dinner, and promptly headed to bed as socializing tends to tire Mom out very quickly from the MS.

Tomorrow we being Pre-testing day 1 at Artemis. We can't wait to meet the doctors!

Since we are coming from Southern Ontario and don't see much sun around this time of year, we are loving every minute of the hot sun coming through the hotel window. It's so nice to wake up to actual direct sunlight!

Our journey to New Delhi

Well, we arrived in New Delhi at about 2:00 AM on February 3rd, 2017.

Our total flight time was between 20-22 hours, with a one hour layover in London, UK.

British Airways was lovely. The food wasn't too bad. However, neither of us slept on the way here. Our first night we slept 14 hours.

Things I've learned in our first 24 hours here:

1. They drive on the left side of the road here.
2. Research which type of plug converter you need. It is difficult finding one in a different country.
3. Jet lag sucks.
4. Indians are very nice!
5. There are security men everywhere in the airport with guns. Big guns, and I don't mean muscles. This is a little alarming when you're a Canadian never having seen a gun before.

We had dinner in the restaurant downstairs - most of the food was Indian, which I am a fan of. My Mom however, will take some time to adjust to the spices (LOL).

Tomorrow we meet with Lis Wiberg, the case manager for HSCT patients at Artemis Hospital.

For now, it's some more sleep and some Netflix.

Mom and I on the plane to New Delhi. As you can see, we were a bit tired, especially Mum :)