Many people find HSCT challenging for obvious reasons, but also because there are blocks of time when for some it can be unbearably boring and isolating. These periods occur when we are confined to our rooms waiting for our blood counts to increase.
However, I was never bored. My days flowed one into the next like petals falling off a bloomed flower.
Keep in mind, my HSCT experience will not be yours.
We are all different, so don’t let my experience scare you, and whatever happens, know that Clinica Ruiz has your back. I have always been more afraid of my poltergeist than anything else, so perhaps it was easier for me to mentally prepare for HSCT than for others…..?
Having said that, I was astounded over and over again by expectations that didn’t happen OR I was hit by something completely unexpected out of left field.
If you are contemplating HSCT, these are some things that helped me. Perhaps it will be helpful as a starting point for you:
1. I RESTED when my body said to.
2. Spasticity was brutal. I brought a yoga strap to help with leg stretches.
3. Whenever my physical self allowed the ‘space’, I reflected on my emotional/spiritual self to ground myself (when in ‘the trenches’….the constant note to self: it will end soon).
4. The sound of technology directly in my ears/brain was ‘scything’ and I couldn’t handle much communication. Luckily, I was sent so many messages I never felt alone.
5. Having reading material that was light for my chemo foggy brain to follow.
6. I blogged and in doing so documented all of my dispensed medications/chemo (more on that in a future post).
7. Journalling, if that’s your gig.
8. The Puebla division organizes artsy stuff for those empty days (since I was in Monterrey, this wasn’t available).
9. Meaningful conversations (if possible, depending on which facility you are at, with your caregiver and/or partner/spouse/friend with you)
10. Distractions. For me these were TV shows & movies that made me laugh/smile/feel good (I mentioned some shows along the way already).
There was one special TV show in particular that stood out above the rest. I’d been waiting for the launch of it for months. It was called Fashion Dis. I have dedicated a separate blog post for it, coming next….
Lots of people are asking me, are you any better, any improvements? It’s too early to say much, but one thing that has disappeared completely is my insane itching that I’ve had for years and would flare up intermittently to new levels of insanity. I have no skin inflammation, nor any itch, nor scabs anywhere on my body/scalp. Pretty stoked about this!
Walking Video Four Weeks Post HSCT