On the 22nd and 23rd of May 2017, I am undertaking what is a significant challenge – for me anyway. I will be attempting to walk the 20 mile ‘Ullswater Way‘ in the Lake District, over two consecutive days, to raise money for St Margaret’s Somerset Hospice and Hospice at Home Carlisle and North Lakeland. Both are charities dear to my heart, as they provide much-needed support and treatment to those with the chronic, and disabling, condition known as lymphoedema. You can access my fundraising page HERE, but I would really appreciate it if you could read on. So many still don’t know about lymphoedema and we need to change that. As a writer, I am lucky to have a platform to tell you more, so thank you for taking the time to read on.
Lymphoedema can be ‘primary’ (caused by faulty genes that affect the development of the lymphatic system, developing at any age, but most often during adolescence, or early adulthood) or ‘secondary’ (caused by damage to the lymphatic system or problems with the movement and drainage of fluid in the lymphatic system, most often caused by cancer treatment or as a result of injury). Symptoms include an aching, heavy limbs causing mobility problems, repeated, and potentially very dangerous, skin infections (cellulitis), hard, tight skin which can develop in folds and start to leak fluid, and wart-like growths. There is no cure, only management (including compression garments and massage to encourage drainage) and many are still not able to access regular treatment, despite greater awareness of the problem following treatment for breast and other cancers.
I am one of those who has needed that treatment desperately. Diagnosed, after horrible tests at the Royal Free Hospital in London, with the primary form of lymphoedema aged just 19, I was faced with a lifetime of treatment for something most doctors then had little knowledge of. I was always ashamed of my legs, which I was bullied about as ‘fat’, and found it really hard to get clothes, especially trousers, to fit (thank goodness for lycra). It was only when I moved to Somerset in 2001 that I got proper care – at St Margaret’s Hospice in Somerset – and, for the first time in my life, could manage the pain, swelling and frequent infections that had plagued me for so many years. I saw a genetic counsellor, who confirmed that I had inherited the condition from my father’s side of the family, and that my poor dad, and my aunties, (whose feet we always gazed at, as they oozed swollen and painful from their shoes) had gone through life undiagnosed and in significant discomfort. I discovered that my children had a 50/50 chance of inheriting it, but mercifully neither shows symptoms yet.
Many people who know me have no idea that I have lymphoedema now, but over the years I have had to get used to talking about it, and being ‘out there’ with it, to raise awareness. I have had the massage and the daily bandaging, as well as the ‘pump’ treatments and we all have to wear the most hideous compression hosiery every day (stockings and crotchless tights of the type we must endure have never been sold in Ann Summers…). They are horrible when it is hot, and I also have to be constantly vigilant for bites and scratches that easily lead to potentially life-threatening infections (I have antibiotics for emergencies instead of an epipen, for example). However, hiding my legs when others are wearing shorts seems a small price to pay when the alternative is days unable to put a foot to the floor.
In 2008 I did my ‘Suzie walks North with Keats’ challenge and raised £4000 in funds for the hospice and for the wonderful charity that supports us, The Lymphoedema Support Network. I was also seeking to raise awareness of the condition by walking a total of 100 miles in the Lake District over the course of a year in the footsteps of my favourite poet. This was just after I had finished treatment for breast cancer, and was therefore at risk of developing secondary lymphoedema as well. Mercifully my brilliant specialist nurse team have made sure all eyes are out for any symptoms and after 10 years I am cancer free and have no signs of lymphoedema in my arm. However, many women still live with the consequences of having lymph nodes removed as part of their cancer diagnosis, and as happened to me, they can find the condition seriously affects their mental health.
Now in my 50s, I needed another challenge to keep the vital exercise programme going and ensure I give myself the best possible chance of staying healthy. I have been walking regularly (poor Barnaby dog is worn out) and have lost 3 stone in the past year and nothing inspires me more than the opportunity to take a good long walk in the Lake District. The Ullswater Way, at 20 miles, is just that. It is also in an area hard hit by the most recent flooding and has its own reasons to promote awareness of what is still very much a working community reliant on, but not wholly devoted to, tourism. I will be walking with two brothers in law and my lymphoedema nurse, Ali Batchelor, who has, quite literally, saved me from much greater disability over the years. The service she is part of, at St Margaret’s, is in dire need of additional funding, managed as it is by a charity, rather than by the NHS. The same applies to Hospice at Home Carlise and North Lakeland, who provide a similar service in the area where the walk takes place.
I have set up a fundraising page at www.virginmoneygiving/suziegrogan and it would be fabulous if you could see your way to sponsoring me. I am lucky to have access to such wonderful care. Others are not so lucky and I am hoping this walk will raise much-needed cash, and awareness of a condition still little understood and frequently poorly treated.
I know times are tough, financially and emotionally, and I do not underestimate the calls on our purses, and our hearts. But if you can help I would be SO grateful and even the smallest amount can make a real difference.