Personal Perspectives
Making a difference... By talking and writing about lymphedema experiences By Joanne Boyce
I
was diagnosed with a pelvic sarcoma in the left side of the pelvis, which meant March 2020, just at the start of the COVID they had to release the hip flexor muscles pandemic. The mandatory shut-down forced and the adductor muscles of the left leg. Part me to attend all my appointments alone and of the hamstring was removed and then they the isolation made coping with cancer that took a 16x10 cm piece of one of the adductor much harder. muscles (gracilis- this is a long thin muscle in Following my diagnosis, I was referred to the the inner thigh that helps with hip adduction Juravinski Cancer Centre in Hamilton (Ontario) and knee flexion) and put that into the crater where I had a remarkable team of physicians the tumour left behind and that became the to aid in my treatment plan. I had to have flap on my lower left butt cheek. pelvic radiation, followed by extensive surgery. After surgery, I required physiotherapy. This The original surgery plan was to remove all was so valuable to me as my goals and expecthe pelvic organs which tations were to get back as would have left me with a much function in my left leg permanent colostomy and as possible and to improve a urostomy. Learning that my strength. This would give was a hard blow. I had me a better quality of life. trouble envisioning what Initially following surgery, I my life would be like in the had a lot of difficulty lifting future. However, I knew my left leg. My mobility I had to move forward. and strength in my left leg During preparation will forever be affected. for the surgery, the plan My physiotherapist has been changed. Once I was exceptional; she helped anaesthetized a quiet me learn to walk again and presence came over the when I was able, helped Jodi Steele (left) at Wellspring Niagara. operating room (four out me learn to sit again. She of the five surgeons allude to was the individual who had this), which made them stop, look at my scans developed the exercise program for all the and see if they could do a different approach. Wellspring Cancer Support Centres in Ontario. They ended up entering the perineal area Today we still continue to work together. instead, where they removed the tumour, and About a year post-operative, I felt an exposed 50% of the anal sphincter. Therefore, I achiness, throbbing and heaviness in the did not require a colostomy, rather they rebuilt back of my left leg. My physiotherapist, the muscle around the urethra - therefore no knowledgeable about lymphedema, was urostomy. They removed the ischial bone on able to diagnose it quickly and we began a
treatment plan. I will admit, I was frustrated and discouraged. This was something new to deal with. Hadn’t I been through enough already? We started by applying compression wraps to the left leg, but it was ineffective due to the location of the lymphedema. We then tried Kinesio taping the leg, however I developed cellulitis. I’m not sure if this was just coincidence or if the taping led to cellulitis, but either way it was time to try something different. My physiotherapist knew about cellulitis and encouraged me to seek treatment as soon as possible. Thankfully, my body reacted very quickly to the prescribed antibiotics. But it was very painful in fact, it made getting blood vessels cauterized in the vaginal wall and feeling like you are peeing razor blades for a week - a walk in the park. During this time, I was participating in exercise classes (through Wellspring Cancer Support Niagara) and also dragon boating with a local paddling club. My physiotherapist taught me the importance of exercise, frequent rest
Joanne Boyce RN is a registered nurse who worked mostly in Labour & Delivery and Neonatal ICU. She and her husband live in Welland, Ontario. She gives back by volunteering at Wellspring Niagara which provided her with support during her cancer journey.
22 w w w. l y m p h e d e m a p a t h w a y s . c a
Summer 2025