My name is Lynn Holloway and I am one of the founders of the BC Lymphedema Association.  On June 25^th, 2003 I had life-saving surgery for a large tumor in my left groin after completing radiation in Jan.  My surgeon told me I would have lymphedema, but I thought I could live with swollen ankles if I could just get rid of “Ted The Tumor”!  I had no clue what I was in for!  The radiation and surgery were considered palliative, but here I am on this side of the grass 23 years later!

As the groin area is one of the main thoroughfares for the lymphatic system and mine was now like cement, my left leg started swelling immediately.  My experience at the BC Cancer Clinic in Vancouver was tremendous, but when it came to giving me information on this chronic condition I would now have to live with, I got a piece of paper with the contact information for all the physiotherapy departments at hospitals in BC.  I started to scour the internet for information, but back then, there wasn’t a whole lot and nothing happening in BC that I was aware of.  I knew I was supposed to get a compression stocking once I healed, but did not know where to go to get that done.

I had been living at my mother’s in Vancouver while undergoing and recuperating from treatment, but when I went back home to Parksville, I connected with the physio department at Nanaimo Regional General Hospital (NRGH).  They had a Lymphapress™ system and I started that on Aug 14/03 and had my last one on Apr 17/04, when they had to cut me off from services.  The whole point of the exercise was to get my leg down in size so that I could then get measured for a compression stocking.  However, it was a colossal waste of time and resources as they didn’t know they should wrap me after my Lymphapress™ session, so my leg just filled up again.  It was almost a whole year before I ever got measured for a stocking!  Then don’t get me started on that fiasco.  Time after time my stocking would come in and it would be wrong somehow – made for the right leg, not the left; the whole inner thigh section missing, and on and on it went for likely another year.

My saving grace was when I met Catherine DiCecca, a RMT in Vancouver who had moved to Nanaimo and was serving both cities so I was able to avail myself of her service and knowledge if I was at home in Parksville or with my Mom in Vancouver.  She taught me so much about my condition.

It was Mar/06 when Catherine organized a dinner for a few of us with leg lymphedema (Rayma Hagan, Deanna Trewin and me) at The Topanga Café in Vancouver.  It was exciting for us to meet other people with this disease and discover how many issues we had in common – no help from the medical community; difficulty getting garments that fit; the expense of self-care, etc.  As we talked about all the problems we’d encountered, we knew that if we were struggling, there were others out there feeling the same way.  We decided to create a non-profit organization and began building BCLA.  Catherine enrolled a few other clients as well as Dr. Weiss and a physiotherapist he worked with. We started out as a non-profit and then began working on getting our charity status.

At our first weekend-long plenary session in 2007, we struggled over creating a vision statement, a mission, and goals that we could believe in.  We talked about ‘big dream’ stuff with no idea how we would ever get there and not knowing if it was even possible given we were just a few people trying to make a difference.  Today, many of those lofty dreams have come true and yet we still have so much more ground to conquer.  It has been the work of a handful of dedicated volunteers each year, building upon the achievements of the ones that went before them that have brought us to where we are now. 

After living with this condition for 23 years, my care has become simple.  As long as I have some form of compression on all day, I am happy with my care.  I was fortunate this year to work on reduction with the CircAid system through Terrie Huppie with Medi Canada (also my favourite stocking manufacturer).  I had incredible results initially by using the foot and knee-high portion, but when I added the knee and thigh high, nothing happened and my lower leg went back to the same size.  I am still learning about what my leg will do in certain circumstances.  I no longer spend money on massage therapy as we discovered by doing two-week intensives that not much changes measurement-wise and is expensive when you’re living on CPP & OAS only. 

My mobility is greatly challenged now as my foot has gone numb.  With no doctor for a number of years, it was difficult to get a referral to a specialist about this and now I’m not so sure anything can be done as the nerves are probably damaged beyond repair.  I have had a number of falls because of my foot.  Since being on Ozempic for a couple of years, I have lost a lot of muscle mass and don’t have the strength to hoist myself up and have had many embarrassing moments with having to have a couple of people try to hoist me back on my feet.  My mental health has also suffered and I medicate for anxiety and depression.  In my younger days, I was a plus-sized model and clothing designer for a time.  Gone are the days when I could wear what I wanted as footwear is only a particular athletic shoe that is wide with lots of support that only looks okay with slacks.  

When I have the opportunity to talk to newly diagnosed people, I mostly listen and empathize with how they’re feeling.  I let them know that in time, it will become their new normal and that this is a condition that will not tolerate being ignored.  You have to find your team of professionals that will support your well-being and try a number of things to see what works for you.

At 71 years of age, I may never see the day when I might be able to be helped in a more meaningful way, but I trust that things will improve.  I thank all the volunteers with BCLA that continue the work that we started to keep building forward momentum.

Written by: Lynn Holloway