At some point, I hope that when I am blogging here, I’m not having to tell you about yet another new side effect of breast cancer treatment. It seems, however, that as time goes by, if it isn’t one thing, it is another.
Last Friday I mentioned some swelling in my hand. I knew the signs. The swelling wasn’t just in my hand, it was also in other parts of my arm. Since I only had sentinel nodes removed, and I didn’t have radiation, I was at low risk for developing lymphedema. Immediately upon detecting the swelling I reached out to my surgeon and my physical therapist (PT) as I knew that she was also trained in lymphedema therapy.
I got in to see the surgeon’s NP last Friday. She referred me to the lymphedema specialists for an ASAP appointment. It has been a week, and I still don’t have an appointment. I have no idea when I’ll actually get in to see the specialist. This was causing me to go insane. I was scared. I found myself worried that what is stage 0/1 now would progress to stage 2 or more before I finally got in to see someone.
Fortunately, I was able to get in to see my PT today. She was able to calm my nerves. She was also able to tell me what I should and should not do, and she prescribed a compression sleeve. She taught me how to self massage (order of massage is important – turns out I was doing it all wrong).
I’m not feeling a whole lot better in that my arm is still swollen and aches. We didn’t get a chance for any of the physical therapy – mostly the appointment was spent measuring my arms and talking about what I can to do help recover from this flare up. But I am relieved. I now know what I should be doing. I know that swimming is good, and that I don’t need a sleeve to swim. I better understand how to spot the signs of a flare up, and what to do when things do flare up.
What this also now means is that I’ll have to wear a compression sleeve when flying. Certain types of larger aircraft are less likely to be a problem (they have higher cabin pressure) but most of the smaller and older aircraft will risk a flare up if I don’t wear a sleeve. When my arm first flared last week, I immediately thought that if I have to wear a sleeve I am most definitely going to get a pretty one. More specifically, one that looks more like a series of pretty arm tattoos rather than something that tries to hide itself but doesn’t.
So I’ve ordered myself a pretty compression sleeve from Lymphedivas. It won’t arrive until sometime next week. My PT ensures me that I don’t need anything urgently – that adding self massage to what I’m already doing will be adequate treatment until I get my sleeve. Once I get the sleeve, I’ll need to wear it during the day until the swelling goes down. Then I’ll need to experiment with exercise – wearing the sleeve at first, and then trying light exercise without it. My oncologist also mentioned that I will probably want to wear the sleeve when I bike. I can see how, that some of my shoulder pain might have been an early sign of lymphedema. I now have a much better understanding of what I can do to manage it.
I still have no clue when I’ll get in to see the specialist. I may have it all under control before then!