Preparing for neuropathy
I have been thinking about neuropathy a bit lately – in part because several strong women in my support groups have been having neuropathy – specifically with the Taxol chemo. I’m currently on AC chemo, but when that is finished, I do 12 weeks of taxol.
Neuropathy is one of the potential side effects. It can happen in both hands and feet. In hands it means that typing becomes challenging as you cannot feel your fingers and fine motor skills become challenging. In the feet, walking and biking become a challenge. For biking, the issue is not so much the pedaling (I have clip pedals), but rather the stopping. When you stop you typically put one foot on the ground, this can be a challenge if you cannot feel your foot!
To deal with neuropathy in my hands (if it happens), I will likely be using Siri a lot. I already use dictation a lot on my iPhone so that I rarely ever type anything using the iPhone keyboard. I have dictation turned on for my Mac, so I all I need to do is hit the fn key twice and then talk to my computer, and the words appear. I can do about a paragraph at a time. It is truly amazing to see just how much voice recognition software has improved over the years. For those using PCs, I can highly recommend Dragon Naturally Speaking. I’m not sure how well it works with different accents, but it seems to do Canadian pretty well (although words like tour need to be trained).
To deal with neuropathy in my feet, we are looking into stabilizers for my recumbent. I had originally thought I would need a trike, but we really don’t have the space for one in our apartment, plus the cost is a bit much for something that I would only need temporarily. I will need something to help with balance if I have neuropathy, but also after surgery. The big advantage to my recumbent is that it has under-seat steering, so I don’t need to lift my arms to steer. However, there is an issue with balance. We have since discovered that one can buy various stabilizers for bikes. These are like training wheels but designed for adult bikes, and are much sturdier. Now we just need to research which stabilizers work best for my ‘bent.
Another issue we need to deal with is groceries. Yesterday, after grocery shopping, I couldn’t carry the groceries back to the apartment. I had to make three trips, because any weight on my left side caused bleeding at my biopsy site. So, we will be looking around for a cute cart that will allow me to load groceries from the car and pull them up to the apartment. I had a cute one from IKEA in Ottawa, but ended up leaving it there when I moved.
So, planning Becky is hoping for the best but planning for contingencies just in case.
Hi Becky
Something I was unprepared for is that neuropathy may cause your oncologist to stop Taxol before the projected total number of doses. This has now happened to me and it’s surprisingly disconcerting. Reflecting on how it’s made me feel, I realise I wish this had been made clear at the beginning: that not everyone gets to the end and that’s OK. So I have had 10 of the planned 12 Paclitaxel doses, and we’re done.
Given that the neuropathy I have was enough to cause this I thought I’d let you know that it hasn’t affected typing or mobility for me so far — I can do all the tricks, like picking up coins and putting in earrings. As ever, no one else’s side effects predict your own, but I thought this might be a cheering note.
Hope the second dose continues on this level pace. You’re doing great.
Becky, I still have neuropathy in my fingers more than 8 years post-chemo, but I find it is no big deal. I have to be more careful with my hand quilting (heaven forbid that anything should interfere with my quilting) and small buttons are a bit of a challenge. It’s a small price to pay for being a cancer survivor.