There’s no doubt the last month or so has been the hardest yet. It’s been like one of the ‘normal’ 3 week cycles of chemo, but stretched over a 2+ month time span; much patience has been required to get some sort of normality back.
The bone marrow transplant/high dose chemo hospital stay was difficult, being in isolation, washing clothes at 70 degrees, wiping everything with alcohol wipes before entering the room, washing hands 1000’s of times and keeping Violet entertained was tiring.
Since we’ve been home I’ve told a few people that it’s like having a newborn baby…
- Up at nights dealing with nappies, bad dreams
- Catching vomit
- Not catching vomit and doing extra washing
- Being vomited and pood on
- Sore backs from carrying
- Packing a day bag and plan ahead to go out
It’s like that, but different…
- Changing nappies was more difficult. The liquid ‘poo’ is more disgusting. Her skin is so sensitive that baby wipes can’t be used, lots of barrier (and scar healing) cream to help the healing
- I remember a few occasions with our babies we just got in the shower with them to wash them off, there’s a few times it would have been good to do this with Violet, however this is not possible with a central line (unless you want to spend the next hour changing dressings)
- We can’t just ‘go out’ to get a break, as Violet is immune compromised, we need to avoid public places and places that smell
- Sensitive, discoloured and peeling skin
- Sleeping on her floor to catch vomit and medicate through the night
- Her sense of taste took a very long time to get back and still isn’t 100%, the majority of the time she’s only on feeds via her NG tube. This video gives a pretty good indication of what it’s like trying to find something she’ll actually eat, Colleen calls it “The Not Very Hungry Caterpillar”
The biggest challenge is constantly juggling feeds, medications and smells. Those three things are continually in the back of our mind to keep Violet comfortable …
- Feed – We need to feed her enough to maintain weight. If we go out, how to we catch up on a feed. If we push bolus’s too fast she’ll vomit.
- Medication – we need to keep antiemetics regular to reduce nausea. Other meds (antibacterial, anti-viral, anti-fungal, liver protection …), if we push them too fast or when she’s nauseous then they come back up
- Smell – Her sense of smell increased more than its usual sensitive self, so most dinner times she has run to her bedroom to avoid being nauseous and vomiting. We’ve tried cooking outside, but no all day slow cooker meal.
As a person who likes to problem solve and have order, routine, organisation the juggle has been difficult; the human body isn’t ordered, routined and organised, you drop one of the balls every now and again and it takes time to pick it up again.
It doesn’t sound like much, but after feeling fatigued from 6 months of other treatments, normal school routines, weekly hospital visits, thoughts about returning to work looming it has really warn us down. I’d say Violet is now 90% back to normal as we head into the next ‘adventure’ tomorrow, radiotherapy.