"What do people do in their spare time here?"
"What do people do in their spare time here?"
I need to stop labelling posts with song lyrics.
Life lesson of the day friends: absolutely everything you learn is transferable. Never in my teenage years would it have crossed my mind that ballet would be helpful ten years on to help my sister with physiotherapy. But there you go, haha. Becks’ physio sessions as an outpatient have me culminating everything I have learned from my dance training, dance teaching, pilates, and general interest in fitness. New challenge!
As well as the leg exercises prescribed by the hospital’s physiotherapist, we’ve also been working on Becks’ upper body strength, core, and posture, to help build her overall strength.
For rehab sake and as a marker, here’s the progress we made in two weeks (post harvest/pre-transplant). It’s probably good to note that each session was largely dependent on how tired Becks was, and whether we did physio in the morning or afternoon (mornings being a lot better).
Super happy with the progress! It was the first time in a long time for Becks working out her core and arms (not as affected by the MS as her legs) so we were able to up the anti fairly quickly. With the sit-to-stands I wasn’t as confident in responding to the MS’ own little personality, but her core strengthening still made a difference in her technique and posture. Becks was able to wheel herself around on outings for short bursts of time too. Winning all round.
Also, just wanted to say thanks to my own physiotherapist Paul Steele from Cross Physiotherapy and Pilates, who kindly donated some exercise bands to help my sister with her rehab. Thank you!
(For anyone following the rest of the blog, I have a backlog of posts I will catch up on! Just wanted to update people on the current situation for now. Also, as a medical novice, I'll add more details as I become more certain of facts/terms etc)
The last 36 hours have been a reminder of how rough this treatment is. It was expected this would be the hard part for Becks, but it’s still a fight to stay calm when it becomes a reality. The staff and nurses at the hospital however are pretty amazing, and we are confident with Becks in their care.
To recap and expand on where we are in the treatment: Becks is currently in isolation for the second part of the process (the actual transplant), followed by a recovery period. With transplant day labelled as ‘Day 0’, here’s the outline of this stay:
Day -6: Admission, line inserted ready for chemotherapy
Day -5: to Day -2: Four days of chemo to wipe out the immune system
Day -1: Rest Day
Day 0: Transplant day to insert new stem cells (and Dad arrived, woo!)
Day 0-10/12: High risk period due to having a low blood count and no immune system, all precautions taken to avoid risk of infection. Expected that side effects hit from day 3 or 4. Body expected to strengthen from second week
Day 7-14: One in ten chance of an MS flare up for a week
Day 14-21: Discharge expected within this time depending on recovery
We have just started Day 7.
Becks has had the expected side effects - intermittent fever, nausea, vomiting, diarrhea, and mouth sores. This has meant a lot of lying with a few ice packs on her body and a paper bag always by her side. She has been given lots of medication to help subside the effects, and sedatives also. For a couple of days she couldn’t hold any food or liquid down, so would suck ice cubes when she could. She has started back on soft, bland foods since though.
The unexpected bumps - two nights ago she was running a fever and as part of this experienced convulsions. Then yesterday she was given a platelet transfusion (because her bloods were too low), but unfortunately had a reaction and experienced shortness of breath. From what we understand Becks had also contracted an infection of some sort (we’re still waiting for clarification around this), but they caught it early and put her on antibiotics and oxygen straight away. As I mentioned before, she’s being well looked after and closely monitored.
So, all in all, a predicted storm. However, we know that we’re supported by so many family and friends back home and around the world, as well as friends and the church we are connected to here in Singapore. Most of all we know we are in the hands of an almighty God, and he will not fail us.
Thank you for your continued love and support, it means so much to us!
Three things I love about Singapore:
Three things I dislike about Singapore:
Singapore Botanic Gardens. Really fun, really boiling. I was reminded that I suck at pushing the wheelchair around in direct sunlight for prolonged periods of time. Overheated game way too strong haha. Becks and I made a deal that she would try and wheel herself when she could (all that physio and strengthening paying off woo!). Overall it was great - the gardens were so pretty, especially the ginger garden and orchid garden. Almost too perfect.
Pixie moment: I am no expert, but I am on the team that believes that nature holds the answers to many problems, big and small. I often wonder what could be learned from existing eco-systems, structures, functions, forms, patterns, and then translated to design strategies and solutions. Yes that’s right, I am claiming that there is a world secret locked in the patterns of these leaves. Notice normal*.
*reference/mantra from my friend Brady in Kansas, thanks Brady.
Also, the lunch we had at one of the restaurants Halia deserves a mention. It was probably one of the best meal experiences I’ve had in the past year. I went from a hot mess to being in a cool tropical resort escape in a second. Change of demeanour. Sister went for the duck while I had the grilled prawn and mango salad. Afterwards we shared a couple of treats from the snack shop across the footpath: ginger nougat parfait ice-cream and a raspberry meringue. Both in the what-is-life category. Success.
I am completely sure we are right above the train station for good reason, because Lord knows that I would keep Becks inside the apartment all day due to extensive wheelchair mission otherwise. The other day Becks had a coffee date a simple 3.5km away. Manageable. Sure it was eight different elevator rides, two train rides, and a labyrinth in between just to get there, but nothing we hadn’t done before - our meeting point was just one stop further than our usual (getting a taxi can stress me out, I’ll save that for another post). For the most part, getting around mainstream Singapore via wheelchair is doable so long as you know the places to avoid (aka Chinatown). Orchard Rd being one of the main shopping streets in Singapore should’ve been fine. Ummm no. Closed wheelchair access paths, 150m wheelchair access detours (gah), in combination with Google sending us the wrong way and overheated brain not able to realise it, had me a flustered and furious mess. Late, lost, and wrong. Three pet peeves all in the space of 30mins. Tipping point, I cried. Hahahaha. Poor sister was so patient even though I made her half an hour late, and even bought me cupcakes afterward to cheer me up. What a world what a world, on wheels.
Father says it's hyper calorie therapy. I say accurate. New country new treats! Save the judgement, my skin's already done that for all of us.
To celebrate my personal metaphorical distances traveled, an anecdote about feet.
I’m grateful for these miracles at the end of my legs, they serve me so well. However, I tend to have an issue with human contact. I get weird if people touch my feet, and I don’t really like touching other people’s either. Don’t ask, it’s just one of those things for me. On the first trip here for Beck’s assessment, she needed her feet massaged to reduce swelling. Matttteeeee. For me this was like laying down my life haha. Of course I did it, but not without being hit with mental queasiness and being extremely upset on the inside haha. Fast forward to now and I’m right in there everyday for physio, and also well accustomed to many other things I would previously squirm at. (Obviously nothing odd on sister’s part, I’m just a bit precious haha). I feel like I’ve conquered Everest. The sense of achievement equates to success stories on weight loss programs. I have overcome many adversities and barriers to get to this point. I’ll take my bow now. Thank you.