Lymphoedema Awareness Week ~ Karen

#ResilienceinLymphoedema ~ Karen's story:

My name is Karen and I’m a determined, resilient and downright stubborn woman!! I feel it’s appropriate to start this post by stating my position on life, the universe and everything, which is that I won’t be told what I can/can’t/should/shouldn’t do. Sometimes this serves me well and other times not, but I’ve been like it my whole life and I’m not about to change anytime soon. 

I was diagnosed with grade 3 HER2+ invasive ductal carcinoma in May 2015 – I went 6 rounds with the dreaded FEC-T chemo during the summer of that year, had a right mastectomy and axillary node clearance in November, 15 doses of radiotherapy in January 2016 and finished active treatment in August 2016 after 18 doses of Herceptin.

I noticed that my right arm had swelled up pretty much straight away after surgery, however I assumed that this would ease, along with the swelling across my chest, as I started to heal. Although the swelling did reduce, my right arm remained bigger than my left but this didn’t really bother me until my arm started to ache a lot and feel very uncomfortable about a year after surgery.

I was referred to the local Lymphoedema clinic who, so far, have only offered me a compression sleeve - in a very becoming (not!) shade of beige. I’d like to explore other options, like massage, but they’ve asked me not to until I have a review of the success, or not, of the sleeve.

I’ve been told all the things I “should” and “shouldn’t” do and I have made some adjustments – I now have a handbag with a long strap that I can wear across my body, spreading the weight, and I offer my other arm for blood pressure/blood tests. In the main though, I carry on with the same level of activity as I did before – gardening, carrying shopping, etc – because I’m determined that this is not going to stop me being me.

In the same vein, I didn’t let my cancer treatment stop me either. I continued to work all the way through chemo – I only had 3 days off due to a chest infection after dose 5, I returned to work 3 weeks after my mastectomy and I managed to work around my radiotherapy sessions. I’m fortunate to be doing a part-time (24 hours a week) job that I love (most of the time!) and I needed the focus of work to help me to feel ‘normal’.

I also have a 9-year old son, who brings me so much joy, and for whom I feel a need to maintain a high degree of 'normal'. He is another wonderful example of my resilience and determination, bouncing back after repeated miscarriages to eventually carry (almost) full-term and become a mum at the grand old age of 45. 

The sleeve bothers me because it is a ‘badge’ I don’t want to wear. For the same reason, when my hair fell out during chemo I wore a wig rather than a scarf. I don’t want to be defined by this – I don’t want to have to keep explaining to people I meet who ask me what I’ve done to my arm! So far it’s been easy to conceal as it’s been autumn/winter – how will I feel as the weather gets warmer I wonder? How will I cope on my summer holiday this year? I’ve seen some amazing coloured and patterned sleeves on the internet – am I brave enough to wear something like that?

I was bemoaning the whole sleeve business at the school gates recently and one of my friends said maybe we were missing a business opportunity here and that we should look into customising sleeves for lymphoedema ladies – so watch this space… “Pimp My Sleeve” could be coming soon to a high street near you…..!