I’m Tamsin and I have lymphoedema in both arms and my right hand.
My lymphoedema story begins with dry hands - I had just finished chemotherapy to treat a recurrence in 2012 when my daughter was admitted to hospital. As I was still vulnerable to infection, I was scrupulously washing my hands on the children's ward. Soon afterwards, my right hand became puffy and by the time I was seen at a Lymphoedema Service, my hand was alarmingly swollen.
With my cancer diagnosis, everything happened very quickly - scan, results, and then a treatment plan. Every new symptom is swiftly investigated. With lymphoedema, everything happened slowly - you wait ages for an appointment, you are given a sleeve or wrap and advised to try it out for a few months.
Initially my swelling got much, much worse - I couldn’t hold a fork or a pen, I couldn’t get my arm into the sleeves of my clothes. Then, fluid started leaking out from cracks in the skin on my fingers.
I had my hand and arm bandaged every day at the hospital for three weeks. I’ll never forget the layers and layers of bandages - I felt like a living mummy! Finding out that I’d only lost 300 mls after all this effort was really disappointing! I was to learn that losing fluid is a bit like losing weight, it’s slow, gradual and there are - frequent - setbacks!
Over around 18 months, I lost nearly a litre of fluid from my arm and I really worked hard to achieve this - religiously wearing my compression garment, wearing a glove at night and doing upper-body exercises twice a day to improve the flow of my lymph fluid. My arm now looks ‘normal’ although I have some fibrosis (hardening of the tissue) in my hand. I still have to wear a custom-made compression garment or the swelling just comes back.
I’m prescribed two garments every 6 month. It takes an hour for the 27 or so individual measurements to be painstakingly taken of the length and width of each of my fingers, my hand and arm. I choose black because it doesn't show the dirt but I think it's shocking that the choice of garments is so limited for people who need made-to-measure garments.
I loathe my compression garment. I hate the daily gymnastics involved in getting my sleeve on (imagine pulling on size 6 spandex pants). I hate the loss of sensation, the painful blisters that develop between my fingers, the stiff, uncomfortable fabric and the colours.
Unlike my breast cancer, I can’t hide my lymphoedema. Well-meant but intrusive questions - ‘Whatever have you done to your hand?’ ‘How long will it take to get better?’ - are difficult to answer.
And then I got lymphoedema in my left arm about a year ago. It felt a bit like a cruel PS, coming four years after my second breast cancer. But in comparison with my right arm it’s easy to manage.
Infection is a worry. The skin on my hand is like tissue paper and needs care and attention. I’ve had cellulitis - a bacterial infection of the skin and tissue - at least twice a year. It caused me a lot of trouble last year when I became very ill after a mosquito bite.
I think that breast cancer charities focus on raising awareness about lymphoedema and preventing the condition. But what about those of us living with lymphoedema? We are the forgotten ones.
My advice to anyone with lymphoedema is to be proactive. I've learned to cope with my lymphoedema by investing in my overall health and fitness and by trying to take control of my condition. Peer support and organisations like LSN and LWO Support have been invaluable, but we desperately need more support to manage our individual needs.