Lymphoedema Awareness Week ~ Sarah

Read Sarah's story to learn the many ways she manages her lymphoedema in the fourth of our #ResilienceinLymphoedema posts:

I am Sarah. In early 2013 I found a lump in my left breast, and the rest as they say is history. Although it’s not. Then, aged 38 with a 5 year old, husband just started a job working away during the week, cancer was not something that I was expecting to deal with. I didn't have a very good breast care nurse, she retired at some stage of my treatments, I only met her once, the day I was diagnosed. So every step of my journey was a step into the unknown. No one told me about lymphoedema.

Lovely TAC chemo, lumpectomy surgery with full node clearance and 20 rounds of rads. I also have a node with cancer in my collarbone area that couldn't be removed. I was told that Chemo and extra radiotherapy to that area would kill off the cancer and lymph node. The radiotherapy has caused further damage to my lymphatic system around my neck, which does build up too.

During my first week of radiotherapy I noticed pockets of swelling in my inner forearm. My arm started to ache, a lot. So I started to google and learnt about lymphoedema. The nurses in oncology dismissed my worries and requests of a referral, it was side effects of the radiotherapy and it would settle down.

A few months later I saw a new breast care nurse for a routine post treatments follow-up. She agreed to refer me to the local lymphodema service and a few weeks later I became the new owner of one beige and one black sleeve.

I do try to hide my sleeve as I get fed up with people looking and staring and then asking what have I done to myself. It does feel a bit of constant reminder of what has happened to me. I think the sleeves are pretty ugly too!!

So over the past couple of years I have had to make some small adjustments in my day to day life. I've learned not to sleep on my left side if possible or hold my sons hand on my left hand side, it hurts too much to have my arm in that position. I have switched wearing my wedding ring to the right hand. I try not to overdo the shopping so use online for bigger shops, gardening, heavy lifting. I've switched my car to driving an automatic. Putting my jacket on left (lymphie) arm first. 
Swimming is a good exercise for my arm. I do believe use it or lose it. So I do as much as I can to keep my arm in good shape.

All my clothes are non-restrictive around my armpit area. I try to buy cottons and stretchy materials where possible. Most things now have long sleeves and cardigans are now staples in my wardrobe!

I am fortunate to live in an area where we have a fairly well funded lymphoedema service. But budgets and funding is limited and I do feel angry that I had to develop worse lymphoedema before I could have extra treatments which I fully believe would have stopped it developing if they had been available for everyone.

The lymphoedema nurses have referred me to a physiotherapist to ease cording in my arm. It was noticed that I have damaged to nerves from the surgery and radiotherapy. I have various exercises to help ease the stiffness, but it does explain the sharp pains and restriction in movement I have.

This past year it has been confirmed by the breast surgeon that lymphoedema has spread to my chest, breast and back areas. So the tight, firm and lumps I've always had in my breast since surgery is actually lymphoedema swelling, as well as scar tissue, etc. I was quite relieved to learn that one particular painful lump in my breast wasn't anything more sinister!! It’s a constant learning curve. This has opened up a new world of treatments which never existed when lymphoedema was "only" in my arm.

I have just completed a 12 week course of LLLT (low level laser therapy). Its worked well for me and even help ease some of the discomfort from the scar tissue. From the first session I felt a small "pop" in one area of the breast and a strange drawing, trickling feeling as the fluid had finally been released. The nurses have taught me how to self-massage, to use kinesiology tape on my arms and body to assist fluid movements. It’s a two-person job to put the tape on my back and chest - dear hubby came along to learn too. I have also tried the pump sleeve. It didn't work as well for me, but it is very relaxing and did ease some aches.

I've have tried a few different sleeves, some are too short, some are too hot and itchy. However one thing they all have in common is that they are beige!! Although there are a few brands that also do sleeves in black which is better. At the moment I have some cotton ones as I was getting a sweaty rash last summer. They are cooler to wear but they do not like it when they take an accidental trip through the tumble dyer!

My advice is keep talking to the health professionals to get help. Ask questions. Not all the services are joined up so you do need to be your own advocate. There is help out there, just not always easy finding it!