LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018
It will be my 5 years cancer-versary soon - on the 27th of March. I was aged 43 when I was diagnosed with primary breast cancer, the day after my birthday. I had a lumpectomy and cancer was found in 3 lymph nodes also so I had the full 17 nodes took out of my left arm. A few weeks later I started 6 rounds of FEC chemotherapy-followed by 20 sessions of radiotherapy.
Soon after that, I noticed my arm was starting to be a problem. I had been doing the exercises that I had been taught throughout treatment with my arm to try to gain more movement but was in some pain with shooting pains, nerve damage and scar tissue forming. I noticed my arm was swelling, feeling heavy and very painful. The GP suspected lymphoedema and referred me to Sheffield Lymphoedema Clinic. There was a waiting list but I was soon offered an appointment. They assessed me, gave advice and information and measured me up for compression garments and a glove.
I also have oedema in my breast and have a lot of swelling and heaviness there so was given this ugly, uncomfortable compression bra. I go to the clinic 2 to 3 times a year they are brilliant and understand the condition more that GPs. It’s difficult to get appointments at the clinic as there is so much need in a big city.
I had 5 days of manual lymphatic drainage a few years back where I had to go each day for around an hour. The massage therapy helps to encourage lymph fluid to move away from where it’s collecting and diverts it across the heart into other nearby lymph nodes. This helped a lot. I felt less heavy and it really made a difference to my breast. I was taught to do this myself daily, but my memory is so bad that I forget how to do it correctly. I try to keep my arm moisturised and not too dry and I don’t use any perfumed products on my affected arm.
My arm really swells and is painful when I have done too much like lifting, heavy shopping, cleaning and wearing tight garments especially with all the layers I have been wearing lately with the cold weather. Sometimes, I have to sleep with my arm elevated and I must admit I rarely wear the compression sleeve as I find it so uncomfortable and restrictive in my job.
Over the last 2 to 3 years I have had many cellulitis infections (4 times last year) .The first time I had an infection I just noticed my arm was hot, with redness and more swollen, with a rash spreading but before this, I had flu like symptoms with a fever and felt shocking. I have also had an infection in my hand which took a few weeks to go and I’m now left with swelling constantly in my hand and this is difficult to treat. I have to always have a supply of 2 weeks worth of antibiotics at home and remember to take them anywhere I go, as without them I become very ill really quickly.
Last summer, I wore sun cream on my arm and I don’t know if it was a bit of sunburn or any perfume in the cream that may have started me off with cellulitis. I am waiting currently for some more manual lymphatic drainage treatment again but there is a big waiting list as there is only one therapist at the clinic that is qualified to do this.
I would love to know if there are any other treatments that are successful in managing the condition. I hate not being able to wear what I want and can’t wear anything long sleeved that is restrictive and dread wearing vest tops in the summer. I feel it is a real disability at times and I worry about being off work a lot due to my arm and also missing work to attend appointments relating to this condition. I also struggle at night to sleep and turning over in bed is a struggle with pain and swelling sometimes with my arm and breast.
My mum, who also had cancer 4 years before me, has lymphoedema but has never suffered with any pain from it although swollen, and has never had an infection. I have been advised that if I don’t get it under control soon, and if I continue to get infections, then I may have to go onto a low dose course of antibiotics permanently to prevent any infections.
Anita
