Introduction:

My husband and I are retired and living in Chilliwack.   I spend a lot of time outdoors, walking, gardening and activities with friends and family.  I am a volunteer dog walker at our local shelter and previously a volunteer horse handler at a therapeutic riding facility until it closed.  Horseback riding was my passion for many years.

Background and Diagnosis:

In 2015 at age 71 I was diagnosed with breast cancer in my right breast.  Treatment was mastectomy, chemotherapy and radiation.  In 2018 I had reconstruction surgery.  Fast forward to December 2024 when I awoke to find my right arm and hand swollen.  Saw my family doctor, we both suspected lymphedema based on my history and he referred me to a vascular surgeon who confirmed the diagnosis of lymphedema.  A compression sleeve was prescribed with little else recommended.

Daily life and challenges:

I wear my compression sleeve for most of the day, sometimes removing it in the evening if it becomes uncomfortable.  Pulling it on is a challenge, a donning glove helps.  Clothing is also a challenge, finding tops with loose enough sleeves to accommodate swelling. 

Treatment and Management:

My daily routine dealing with this condition consists of manual lymphatic drainage massage which I do every morning.  I also do dry brushing before and after.  I have had one lymphatic massage done by a RMT who specializes in lymphedema, unfortunately it is rather costly.  I use a rebounder (mini trampoline) which helps get the lymphatic fluid moving.  All these things do take time but it is a daily necessity.  Arm mobility is affected as well as range of motion and twisting does cause discomfort, for instance, turning a can opener handle, turning the steering wheel in the car, clipping fingernails on the left hand with the right affected arm.  Pressure and aching are ongoing symptoms.  Compression sleeves, which must be replaced every six months, are costly but a necessity, not covered by MSP and we don’t have extended benefits.

Emotional and Social Impact:

I feel quite self-conscious about my arm and wear long sleeves year round to hide the sleeve and the arm swelling.  It was a complete surprise when I developed lymphedema as all through my cancer treatment and recovery it was never mentioned, just some vague remarks about protecting your arm, not having blood drawn or blood pressure taken on the arm.  Also, being a chronic condition, it’s a part of your life forever.

Coping and Resilience:

I try to keep in mind that I survived cancer, went through treatments and am living a full and active life with no recurrence.  Lymphedema is an after effect of these treatments.  There is hope as more research is being done, new therapies discovered and awareness of the condition is widening.  I do feel fortunate that my swelling has reduced by half since my diagnosis and is no longer in my hand. I attribute this to the therapies I’m doing at home, everything has some impact and combined have helped reduce the swelling for me.  There is hope and symptoms can be reduced for some people.

Advocacy:

I am quite open about my cancer journey and the lymphedema that followed and share it with others.  Amazing new treatments are being researched so there is hope for the future.  Trying to keep a positive outlook is helpful and carrying on with normal daily activities to help feel that your life doesn’t revolve around lymphedema.

BC Lymphedema Resources:

Finding resources and help for managing lymphedema seems to be something we have to take on ourselves.  As much as I appreciate my family doctor and the specialist who diagnosed me with lymphedema, it seems we are very much on our own seeking help.  The BC Lymphedema Association has been a valuable source of information. The newsletters are most informative and helpful in connecting us with up to date information and research.  Some others are included below.

BC Lymphedema Association 

Canadian Lymphedema Framework

Lymphatic Education and Research Network which is a US based website

Cancer Rehab PT, Kelly Sturm.  She produces excellent videos on MLD and other exercises to help reduce swelling and is very knowledgeable.

Written by: Julie Bowman