Lymphoedema Awareness Week 2018 Day 7 ~ Bal

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018

Loss
Yearning
Mourning
Pain
Help
Empathy
Damage
Endurance
Manage
Actively

Just when I thought the ‘Cancer’ Journey was over! Along comes Lymphoedema Arm!

I was diagnosed with breast cancer in August 2015 and had surgery, chemotherapy and radiotherapy. I was never prepared for this kind of continued upheaval in my life, had I not had enough of being butchered/poisoned/burnt/drugged and now more endurance with pain after 2 years of being diagnosed with secondary lymphoedema?!

Lymphatic Obstruction
This is a blockage in the lymphatic system, which consists of lymph nodes and vessels that help drain excess fluids from the human body’s tissues, these fluids can carry toxins and other human waste products to your lymph nodes before your internal system can eradicate them.

Lymph nodes are everywhere, very tiny, small as a ‘’baked bean’’, glands that can be found in different parts of the human body, i.e. neck, groin and armpits. Glands are vital for the immune system, because they provide red blood cells that help beat infections in the human body.

So therefore if there is a blockage, this then causes swelling (fluid in the arms and legs), which results in lymphoedema.

You can be born with primary lymphoedema, a secondary condition is a complication with cancer treatment i.e. a mastectomy is the most common cause because during surgery taking away lymph nodes under the arm(s) when a cancerous breast is removed, prohibits fluid drainage and swelling under the arm and/or whole arm(s) & hand(s) can occur.

This can also be caused by treatment such as radiotherapy (tumours and scar tissues (from radiation and surgical intervention causes blockage).

My symptoms started in November 2017, I had constant tingling in my arm/hands, at first I thought maybe I have picked up something heavy like shopping bags or even washing basket! My arm was swollen and cording started in arm.

I asked my oncologist and he flippantly said it was not his problem, ‘go and get the surgeon to check it out’ or your GP!

Surprisingly my GP did not have a clue (even though she is a medical professional).

Guys Hospital London could not help either as I was not in their catchment area or referral from my GP was rejected.

At my routine 6 month medical check-up, I casually mentioned to my surgeon about the pain in my arm/hands. He started measuring both my arms and confirmed my fears, breast care nurse referred me to a specialist. (Fortunately all my treatment was private).

My consultant surgeon and breast care nurse did some analysis, i.e. measured both arms and came to the conclusion that one was bigger than the other, I could have told them that without all this fuss. Breast care nurse was very helpful and she referred me straight away to a private consultant who specialised in lymphoedema. It was a 45 minute drive each way. I had 6 weekly sessions of lymphatic drainage massage, this was a machine that looked like an iron which was moved up and down my arm for 45 minutes continuously and then over my right chest wall and right side/back. She carried out a manual massage for 15 minutes, it was extremely exhausting and was painful and made me lightheaded so when I used to get home I had to rest for a few hours after each session in order to feel better.

Specialist provided me with tips/exercises for long term maintenance for my secondary lymphoedema.

In my experience, my GP did not know of any clinics and asked me to ask the consultant surgeon/breast care nurse. Surely as a medical professional she should be better equipped/knowledgeable to support me and perhaps others in my situation?

Please help existing/future patients have access to information about who to contact and raise awareness, support and a successful outcome for all.

Together we will be stronger and safer for tomorrow and ‘thrive’ for a better future.

Bal

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre