A carer’s guide to HSCT
Caring for someone having HSCT is no small task. Sure, you’re not the one undergoing the medical treatment. But it’s still quite a big responsibility that shouldn’t be taken lightly.
Caring for someone having HSCT is no small task. Sure, you’re not the one undergoing the medical treatment. But it’s still quite a big responsibility that shouldn’t be taken lightly.
James, my partner of 11 years, had HSCT in July 2022 in Mexico. The experience was incredible, difficult and also life changing.
I found lots of guides online for people having HSCT, but there was very little information for carers. So I wanted to share some of my tips to help those in the caregiver role.
1. You don’t have to be an expert in HSCT
Before we left for Mexico I felt a sudden panic because I felt like I still didn’t fully understand the treatment. As I’m not medically trained, some of the terminology felt like a different language and I worried my lack of technical knowledge would be a hindrance.
But you don’t need to know everything. There’s no need to understand every type of pill, the schedule down to each minute or be an expert in HSCT. That’s not your role as a caregiver. At any point if you have any questions, or would like clarification on any part of the process, you can ask.
2. Pack prepared
Here are some of the things you might find helpful to pack before you leave:
- Adult nappies. You may not need these, but there was one part of the treatment where James was asked to wear one as a failsafe.
- Plenty of comfy, warm and loose clothes and a blanket. James was given a blanket when we arrived, but we did wish we’d brought our own. Something warm and fluffy is lovely during chemo days.
- Hot water bottles or heat pads. These are really helpful for bone pain that the person you’re caring for might experience.
- Slippers, pyjamas and dressing gown (comfort is key!)
- Headphones. These are helpful for any Zoom meetings you might have, and for watching TV or listening to music during chemo days.
- Head coverings. Once the person having HSCT loses or shaves their hair they may feel happy to go about without a head covering. But having the option to cover up is nice! Headscarves, hats and beanies can provide some comfort and warmth.
- Entertainment. Some of the days during the treatment are long and boring, especially towards the end where you’re confined to your room. So I’d recommend packing as many different types of entertainment as you can. Some ideas are: colouring books, craft kits, board games, puzzle books, reading books, jigsaws. The more the better. We also downloaded lots of TV shows to binge watch while there.
- Prescription toothpaste and soft brush toothbrush. Our dentist prescribed James specialist toothpaste to help with the side effects of chemo and look after his oral health during the treatment.
3. Remember to look after yourself
As a caregiver your priority will be looking after your loved one. But this doesn’t mean you shouldn’t look after yourself as well. You can’t be a good caregiver if you don’t make sure your needs are met too.
