My lymphoedema started very abruptly. One night, I developed unbelievably bad pain in my arm and shoulder.  It was awful.  I showered, tried to rub it better.  When I went to bed, I stretched both arms out before me (as my left was still very painful) and realised that the painful arm was suddenly much bigger than the other.

I had no idea what lymphoedema was, I had only had one lymph node taken out and the double mastectomy and Diep reconstruction I had had three years earlier for primary breast cancer had never given me any issues or concerns.  I subsequently discovered that lymphoedema is a complex condition and the risk factors associated with it are not fully understood. 

Before I followed my love of science, I was a professional classical musician, a cellist who performed all over the world and had hoped to be able to continue this.   Lymphoedema was a devastating blow that came out of nowhere.  The impact lymphoedema has had in terms of ability to perform daily tasks, never feeling comfortable, the swelling, the pain, the constant reminder of how your health is being stripped away piecemeal, I have found extremely difficult and emotionally challenging.

After the initial shock of diagnosis, I set about trying to have treatment for it.  I discovered the NHS did not have any funds to support treatment, only bandages.  I managed to get some private help initially, but I could not afford to sustain it.

The frustration of knowing there was help there to make my lymphoedema easier, potentially curable, but only with treatment I could not afford, was very tough.

By chance, a year later, I was asked to be involved in the lymphoedema research project.

Opening up and talking about how difficult it has been for me, not just permanently wearing bandages – that inspire questions wherever you go – being uncomfortable but, for me, it has been the knock-on effect of not being able to play my cello in the same way.  I don’t remember not being able to play it or even when I started playing it.  I can only play for short periods but could no longer sustain days of six-hour sessions.

Until being asked about my lymphoedema in the lymphoedema awareness film, I had not spoken of it because it was too upsetting.

There is now much needed ongoing research being carried out to better understand lymphoedema. Professor James Moore Jnr is a Bioengineer based at Imperial College in London. He has been researching the lymphatic system for twenty years and has developed a small (0.5cm) device that could be implanted into patients at time of their surgery.  It goes in place of the lymph node, to reconnect the severed lymph vessels and stop lymphoedema from forming.

I co-presented at Imperial College’s Bio-Medical Research Centre about this project in November 2023, with Academic Researcher/Bioengineer Arushri Swarup, PhD.  The project could make such a difference to patients going forward and it seems to be going from strength to strength.

It is a reminder to all of us, wherever we are, that there are many scientists and researchers with activist genes within their DNA who work hard to help us and are passionate about making a difference, to interweave their golden thread of hope into our lives so that many a tired soul may be comforted.