Gaynor Leech Guest Blog - November 2021
In last month’s Newsmagazine myself and other contributors talked about change. Had there been any over the last 20 years or eight years from L-W-O’s point of view. There are those who will argue that there has been no change. However, I do see change, yes at times it seems frustratingly slow but the awareness of information and education both amongst Health Care Professionals and Patients is growing and community engagement is key.
This was evident at the BLS 2021 Conference, which I feel privileged as a patient advocate to have attended for the fourth year running.
James E. Moore Jr., Ph.D.
There were many different topics covered from ‘The roles of lymphatic fluid flow in immune system function’ and engineered technologies for prevention and treatment of Lymphoedema by Professor James E Moore and I could have listened to him all day.
We are seeing more on Lymphoedema and heart failure which is of special interest to me as both my husband and son live with chronic heart failure (CHF) although neither have Lymphoedema but several of our support group members do live with CHF and Lymphoedema.
A Recurring Theme
Janet Ulman, PhD student at Sheffield Hallam University
There were several informative abstracts, my personal favourite was by Janet Ulman ‘Understanding women’s experiences of breast (or chest wall or trunk) Lymphoedema after breast cancer treatment.’ Having lived with this type of Lymphoedema for over 10 years, it was nice to see this brought to the attention of delegates, as in my opinion this area had been neglected. Janet found in her research that 90% of women remained silent about breast Lymphoedema. I can identify with this, it took me along time to be able to talk about the rugby ball on my chest, the weird sensations of pins and needles, or what feel like electric shocks, and do not get me started on the pain. When I am out, if you see me flapping my arms or doing circular movements with my arm on the side of my boob, I am not having a moment of madness, it means I have a build up of fluid and I need to reduce the fluid so that I can feel more comfortable. So well done Janet for highlighting our problem to Conference. I have produced a new webpage on breast cancer related Lymphoedema with lots of new tips and advice.
Haddenham Health Care also produced a video on ‘New thinking in the Management of Breast and Chest Wall Lymphoedema’ with Jane Wigg and Natalie Phillips. Dr Katie Riches talked about ‘The incidence and assessment of breast Lymphoedema.’ We often talk about Breast Cancer Related Lymphoedema (BRCL) but most of the talk and research has concentrated on arm Lymphoedema there has been extraordinarily little on breast and chest wall Lymphoedema which Katie also acknowledged in her research.
Paul Thiruchelvam, Consultant Breast Surgeon at Imperial College Healthcare NHS Trust
It was great to listen to Paul Thiruchelvam again speak on ‘Lymphatic Microsurgical Preventative Healing Approach (LYMPHA) a surgical procedure performed at the time of lymph node dissection with the goal of preventing lymphoedema in high-risk patients. This is the second time I have heard Paul speak, he also presented on LYMPHA and SLYMPHA at the MLDUK Conference in 2019. Early LYMPHA results look promising, and I look forward to seeing how these procedures progress.
I was thrilled to see all three of our #getmoving videos available to watch at conference, this was a joint initiative with BLS and I thank Margaret Sneddon for acknowledging our contribution along with others in the ‘Let's Celebrate’.
I was also thrilled to see the video replayed I did for Haddenham Health Care on the Comfiwave Breast Band.
The #BLS2021 conference was diverse and educational, but I simply do not have the time to cover everything currently. Whether you realise it or not there is much going on in the background of our Lymphoedema world and when I can, I will share and I look forward to next year’s conference.
Support Group has been quiet but thrilled to welcome eleven new members. I am thrilled to see our member Craig Davidson has rebranded himself as ‘the grumpylymphie’ and I am thrilled for him, he is a great sounding board for our community and is not afraid to shake things up, we need more men like him in our Lymphoedema community as patient advocates.
The new website is coming along nicely, not sure when I will stop calling it new but do check it out as it is more visual with easy-to-read information in bite size blocks.