Just a short post this evening to update on a new treatment we are trying for Lucia – new for her but not new for any other lymphies who may be reading this. We were up bright and early to meet Lucia’s therapist, Lynne, in the hope that Lucia would allow her to do some bandaging of her right leg and foot to see how that would impact on her swelling.
We had put this into the diary a few months ago when her swelling was particularly bad, but until she was off school on her summer holidays there wasn’t an opportunity or time to try it out. We talked through all of this with Lynne and at the time I remembering feeling so anxious about it all. From the outside looking in putting some bandages on may not seem like a lot – but to us it was another huge step in Lucia’s lymphoedema management.
A new step
It’s a much more intensive treatment that should ideally be used for weeks at a time to see any real results – but this first time was to be more of a ‘taster’ for Lucia…to see if she would allow it, to see if she could tolerate it, to see if she was sore, uncomfortable or found it unbearable to wear. Or on the flip side to see if she was comfortable and if she could bear to wear it for even a short period of time.
Just thinking about all of this really made me stress – it’s almost like once you start something with this condition you can’t stop it. Once we started the massage it was everyday, when she started wearing the compression it was everyday, the machine is used on a five times a week basis not to mention all the other daily ins and outs…so if we started bandaging how often would this have to be added into her care routine on top of everything else?
Talking and compromising
We spent the last week talking to Lucia about it, trying to prepare her for it and for the first little while she was adamant that this wasn’t going to happen. She gave us a firm NO. (Strong little personality right there!). But every now and again we would mention it to keep trying to plant the seed, though at a couple of points she got very teary because she was scared and nervous of something new. Completely understandable.
In the end we said we would just go and see Lynne, she could feel the bandages and the foam and if she didn’t want them on that was fine. This is not something we wanted to push on her as further down the line it may be something she really needs, so we didn’t want to risk a bad first experience. However, we did also throw in the idea of a hot chocolate and a new toy if she did allow Lynne to put them on – even just for a little while…which swayed things a little bit!
And, of course, she was an absolute star. As was Lynne. She showed Lucia the foam and the bandages, explained how she would put them on, let her have a good feel of everything and a bit of a play with them, assured her they wouldn’t hurt, nothing would stick to her skin and if she really didn’t like it then she would take it off right away.
Let’s do this!
Then she was ready to give it a go. She chatted and laughed as the process started and loved the little ‘pillows’ of foam that went between her toes to keep them comfy. As the layers went on she said it felt weird but ok and when Lynne got to her knee she said that was enough. Ideally we had hoped to do thigh high but for a first go to the knee was amazing. She kept saying it felt weird as Lynne was putting the foam and bandages on, but by the end she seemed comfortable and although still ‘weird’ she said it also felt ‘great’.
We decided to take it hour by hour and Lynne sent me home with special scissors in case she needed them cut off at home. The goal was to keep them on for 24 hours and take her back to Lynne in the morning so she could cut them off and see how her swelling had reacted.
Right now she is sound asleep in bed after a big day. These things always take quite a lot out of her and it’s easy to forget what is going on underneath the bandages. That it is squeezing her leg and foot tightly to move the lymph and that her body and organs are then having to cope with this extra fluid being pushed around her body. Exhausting.
As always, she has completely amazed us in how she takes everything in her stride. Although she couldn’t wear a shoe over the bandaging she has still wandered around the house as normal and when we went out for family tea she happily walked around the restaurant too!
We are so so proud of how she has handled today and have our fingers crossed for a peaceful nights sleep. I’ll update at the weekend.
(And apologies, this short post ended up quite long in the end!)