Janet's HSCT Journey: Trying to locate an Indian Tim Hortons

Mom's been doing well, she doesn't feel bothered during the daily CGSF injections. Today is day 6 of the daily cell-growth factor injections.

This upcoming week, sometime between Tuesday and Friday, Mom's stem cells will be harvested depending on her blood counts. For now we're just working on getting lots of them floating around in her blood stream.

Yesterday I went with John (an attendant of another MS patient here) to the foreign registration office. Someone from the hospital took us there and helped us get the paperwork together. Mom just has to go to their office at some point after discharge to give them her signature in front of a witness. You know, bureaucratic things. If you have a medical visa, regardless of the length, you apparently have to go register at the FRO within 2 weeks of arrival.

I came back to find Mom worried, as she had thought they had deported me because I took a few hours longer than expected, LOL.

She finished watching a documentary called 13th, about the black lives matter movement. I caught the last few minutes, it sounded really interesting. Then we watched Forrest Gump, and then a documentary called The Internet's Own Boy, a story about a young man named Aaron Swartz who had a large role in the politics of technology but was sadly convicted of a cyber crime. It was really good.

Our typical day consists of the nurse coming in at 6 AM to take a blood sample from Mom, and then they check her weight, temperature, and blood pressure. Yesterday I decided to check mine while she was at it, and I was surprised to find that I've lost a little over 15 pounds since leaving Canada. I can't believe that, since all I do is sit in a hospital room and eat fruit!

After that Mom sometimes has a shower, and someone comes to clean the bathroom and floors. They change the bedsheets and give her a new hospital outfit. The doctor visits at some point during the middle of the day to make sure everything is okay, and the dietitian pops in to go over what the meal plan is for the day. A separate person comes to take my order for the day's lunch and dinner, and the following day's breakfast.

Mom and a few others were allowed to go out for a brief while yesterday as their immune systems are not yet compromised (still within the hospital though). They had some coffee or tea in the cafeteria and chatted about each other's experiences so far. We have a group chat with all of the HSCT patients here and a few of the attendants, and boy are they funny. They keep the mood light with humour and it's nice to have a small community where you understand what one another are going through.

A physiotherapist has worked out a plan for Mom. She plans to visit her for a half hour to an hour per day to do some strength exercises to help her balance. She noted how Mom is still relatively strong. Many of the doctors and assessments here have noted that Mom is in a good position to be receiving HSCT. A lot of MS patients are required to do a wash-out period if they've been on MS medications, which can hinder their possibility of treatment. Mom refused to take MS medications as they made her extremely sick and were crazy expensive, and while people thought she was nuts for refusing MS medication at the time, her resistance to accept what she was handed has proved extremely beneficial. She was also diagnosed with MS a relatively short while ago in comparison to most HSCT patients, and generally has no other health complications.

What some people aren't always aware of, is that some times when you go off of an MS medication you can have a relapse in response to the withdrawal. This is what happened to Mom. She had to stop taking Aubagio because her neurologist deemed it ineffective in stopping her disease progression. She went off of the medication and soon found herself barely able to walk, and she could no longer comb her hair or have a shower on her own. She didn't want this happening again. In her own words, she knew that she was declining by not being on medication - but the likelihood of being taken off of another MS medication was high, and she couldn't stand the idea of declining even more rapidly once being taken off of it. She was determined to receive HSCT, and she did so.

Mom is so excited at the idea that if she sees improvement from HSCT she might be able to go back to work one day. She's told me before that if she's doing well in the next few years, she would love to pay it forward and help other people who are fundraising for HSCT. She knows how important this is for MS patients, and she is forever grateful for everyone's help in getting her here.

The other day we were discussing how she really misses her Tim Hortons coffee every day (I know, she talks about Tim Hortons a lot, it's a life-long love of hers). I thought, well it doesn't hurt to try finding it. So I googled "Tim Hortons New Delhi", and was excited to find the address of a Tim Hortons in Delhi. I said "MOM! There's a Tim Hortons in India!" and she said "REALLY?" I double checked the address only to find that the address was in fact, for a Tim Hortons located in Delhi, Ontario (pronounced DELL-hye), not New Delhi, India. She quickly retreated to her state of longing for her favourite coffee. She knew coming here that she would likely be without Tim Hortons, but she's already requested that when my Dad comes to pick us up at the Toronto airport, that he have a coffee in hand for her, haha! I swear if there was a Guinness Book of World Records for the most-consumed Tim Hortons in one lifetime, my parents would win it hands-down. No joke, they typically drink 2-4 Tim Hortons coffees per day, and we are also currently missing out on Roll-Up-The-Rim! Many of the workers who are employed at the various locations in their hometown, Woodstock, Ontario, have my Dad's voice recognized immediately when he orders over the intercom. Only a few more weeks until she can be reunited with her daily large coffee with 2 cream in it.

If you have any questions about Mom's experience here in India, feel free to comment with questions and let us know what you'd like to hear more about, we can answer in the next blog post!