Lymphedema

Yesterday, I summarized the key points from our trip to Halifax to see the radiation oncologist. There were many different things discussed in that consultation and in my blog post that require further explanation.

The first topic I want to address is lymphedema. Since I already have lymphedema on my right side, the oncologist informed me that it will worsen and become permanent. The surgery increased my risk, and radiation will further increase it. However, since I already have lymphedema, the radiation is not increasing the risk but rather the severity.

I have heard before that my lymphedema was permanent, but I am skeptical about it. The lymphatic system is not well understood by many people.

The last time I had lymphedema, it lasted about six months. During that time, I wore compression garments every day and swam almost every day. At that point, I was swimming about a mile. I believe these two factors contributed to the resolution of lymphedema in my left arm.

Unfortunately, I am currently unable to swim, and wearing compression garments is making it worse. On Christmas Eve, I burned my arm while cooking (yes, it was the arm affected by lymphedema). The wound is still healing and still bleeds when I change dressings. It is almost healed, but I will not be able to swim until it is completely healed. Once it is, I plan to swim as much as possible.

Another step I am taking is seeing a physiotherapist for manual lymph drainage. I have booked weekly visits for January and will evaluate the results afterwards.

I am also engaging in virtual boxing. One of the things that brought me to tears in the doctor’s office was the thought that I would no longer be able to go boxing. I cannot box with lymphedema as the impact exacerbates it. However, I can still engage in virtual boxing. When I injured myself last year and couldn’t box, I purchased a Quest VR headset. Now, I use an app called Supernatural to box to music in visually appealing environments. It is a great workout that does not involve impact (there is minor haptic feedback from the hand grips, but no impact).

During radiation treatment, I will not be able to swim or receive manual lymph drainage. Virtual boxing may still be possible, but it remains to be seen. I will simply have to accept the situation as it is.

The oncologist recommended considering compression sleeves once everything has settled down. Chemo prevents it from healing, and radiation aggravates it. Once I have completed radiation, I will be able to focus on things that can improve the condition.

Despite the doctor’s assertion that lymphedema is permanent, I choose not to believe it. Only time will tell which one of us is correct!

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