Podcast Episode 54: Living with lymphoedema

Hello there and thank you to Ellie and the Lindsay Legg Club Foundation for inviting me to speak as part of their podcast series. My name is Matt Hazeldean, founder of Lymphedema United and author of How to Live Better with Lymphedema. and I've been asked to give you a talk on the physical and mental challenges of lymphedema and how I turned them into a positive to help others raise awareness and raise money for lymphedema charities. A bit of background to start with, back in 2011 in the summer, Father's Day which is this weekend for those of you who know. I got cellulitis in my left leg which was incredibly painful. I didn't know what it was, the medics didn't know what it was and they put me on drips and painkillers and morphine, you name it, until the cultures came back to confirm what it was which resulted in a two-week stay in hospital and the outcome of my stay just to take home a little souvenir was lymphedema in my left leg. Lymphedema as I'm sure you know is a swelling in my case it was about 56 percent bigger than my right leg and affected my foot to my thigh. Cellulitis was extremely painful, probably the most painful thing I've ever had in my life, but it went whereas lymphedema stayed. It's a lifelong condition, some say disease, although I don't like the word disease so I'm going to refer to it as a condition that had a huge impact on me both physically and mentally. It's a life-changing condition that's for sure and it wasn't long before we needed help, medical professional help from a specialist lymphedema therapist but finding one and getting my GP to understand what lymphedema was and refer us to the right people was a challenge in itself. And all of that sort of no man's land if you like led to being lost, the feeling of alone with nobody out there to help. Even the GP couldn't help. So it was through a lot of research that my wife and I did, although it was mainly my wife if I'm honest, led to finding, going all around the houses for several days, finding a local therapist who specializes in lymphedema ten minutes from my house which was quite life-changing but I'll come on to that in a second. Many months had gone by at that point and I'd lost my self-confidence, my self-esteem. I'm in between 6'3 and 6'4 and shrinking as I get older but I walked tall, I was confident and very assertive and that slowly started to disappear with lymphedema, so I no longer walked tall. I sometimes wanted the hole in the floor to swallow me up. I worked in a professional environment in financial services and had set up my own business with a business partner not six months before getting lymphedema, which was quite a devastating time to be absent. and I had a young family, two young daughters, who, you know, life changed the dynamic because I was poorly and I needed help and I needed support and normally I was the strong one. It affected the number of social events that I would like to go to. I didn't want to be pointed at or asked the question about my big leg, because it was very noticeable. Simple things like all of the clothes, the trousers, the shoes in my wardrobe became redundant. Buying off the shelf was impossible. And, you know, my granddad used to say to me, the clothes and shoes make up the man. Well, I had to wear huge baggy jeans and tracksuit bottoms to accommodate this swollen leg. So I felt pretty rough at the time. Anyway, enough waffling about the bad points. It was a challenge. It was a roller coaster of emotions. I had no one really to talk to that understood what lymphedema was. And in the end, after a number of years, I had to have a little bit of a kick up the backside and be proactive. And I'm a solutions man, that's what I do. But I wasn't applying the same logic to myself. The turning point was, believe it or not, a pair of jeans. My wife and family bought a voucher for some Levi's lot one made to measure jeans one Christmas. And I went through a fabulous process of being measured and picking my fabric, et cetera, and getting a pair of jeans that would hide my swollen leg. And when I collected them a number of weeks later, I put them on and I stood tall. I looked normal. And as shallow as this may sound, I kind of had me back again. Those jeans made me feel confident. And that really sort of helped me to springboard into a positive track and change my mindset to use my experience of the doom and the gloom and the struggles of having lymphedema to a positive and to help others and to raise awareness and also to raise money for lymphedema charities. Yes, it didn't go away, the swelling was still there, it was painful on occasion and cumbersome and I was clumsy and during those earlier years I would buy anything and everything to help me but most didn't and ended up returning a lot of the items back to the manufacturer. The first breakthrough after getting my confidence with the genes was to speak to the St. George's team, that's my door just slamming in the wind, about a treatment plan, an education about self-management. And that was executed by the wonderful Kelly Nixon. I was under Professor Mortimer and Dr. Gordon at St. George's and between the three of them, helped me to come to terms with my condition and educate me into self-management and put a comprehensive treatment plan together. So that helped control and reduce or reduce and control the size of my swelling and that coupled with the genes triggered me on to better things. things. For example, under a bit of, I suppose, nudging and coercing from Professor Mortimer, I wrote a story, my story, for the lymph line for the Lymphedema Support Network, which kind of for the first time was me sharing my experience and my journey, which actually felt quite good, quite cathartic, and I had some positive comments about that. That then led to another favour for Prophet Mortimer, writing quite a lengthy interview for the Daily Mail Good Health paper, which then went on to the website and I think it's still there today. I got involved with several fundraising events, mainly raising money for the local hospice in the Weald, which at that time was home to my lymphoedema therapist centre, and also the LSN, the Lymphoedema Support Network, with a fairly significant amount raised from the golf day. I think it's 8,200 in total. And the communication with the LSN really was quite uplifting and motivating, so I joined as a trustee for two and a half years and that gave me real confidence to push forward and make a positive difference to help others. During this time I was still battling with the size of my leg. I'd had failed lymph node transfer surgery which then led to looking into LVA which sadly I wasn't suitable for. So liposuction was the last option to reduce the size of my leg and I was blessed that Dr Gordon and the St George's team really fought my corner to get liposuction on the NHS with the fabulous Katie Milroy. I realise how lucky I am because I understand this is a massive challenge to get funding on the NHS but it was with excitement and a little bit of trepidation that I had surgery in January 2017 and thereafter with a lot of care and maintenance my leg became smaller and more manageable. The flip side to that was I have to wear stockings 24-7 which can be a little uncomfortable especially on hot evenings as we're experiencing now in June 2022, but reducing the size of the leg gave me a boost to do more, the lymphedema sector. The next stage really was to get myself fit so I played a lot of golf, I exercised, tried to lose weight and I was extremely compliant. I did everything that Dr. Gordon, Prof Mortimer and Kelly Nixon and my other therapists told me to And I think that helped with the development of our relationships, because you rely not just for physical support, but also emotional support from the team. And they encourage you to look after yourself, but they're there to support you when things don't quite go to plan. Then the big change, January 2021, approaching my 10 year anniversary with Lymphedema, I set to work on writing a book and creating a website specifically to help other people with lymphedema by explaining my story and producing a one-stop shop patient-based website with everything that you need to know all in one place. Both the book and the website was exactly what I would have wanted to have had when I was diagnosed with lymphedema in 2011. So it was my opportunity to share everything I'd learned with others. So, January, February 2021, Lymphoedema United was born and it was soon launched with a social media platform, which you can find at Lymph United on most of the social media platforms Twitter, Facebook, LinkedIn, Instagram and YouTube. that was all in preparation to launch the website, the lymphedemaunited.com website in September, which provides trusted information from specialist lymphedema experts, the medical profession, including four professors, doctors, therapists, about many subjects, including primary, secondary lymphedema, cellulitis, self-management techniques, therapies, surgery, the list goes on. very informative, very comprehensive. The objective of the site really was to be the go-to place for somebody either newly diagnosed with lymphedema or had had lymphedema for some time but didn't know where to go for help. Included on the website we have a meet the experts section, a meet the organisations and charity section, meet the members to read other experiences from people who have joined Lymphedema United and also meet the suppliers including specialist lymphedema companies but also companies that provide clothes and shoes that can help people with swelling and lymphedema. It's a free membership website and there are lots of members benefits including a discount code for all of the suppliers and 25% of the profits will be donated to Lymphedema charities. Hopefully, you can have a browse. It's www.lymphedemaunited.com and sign up as a member free of charge. And then you'll receive many benefits, including a quarterly newsletter and regular email bulletins. In addition to producing the website, I was writing my book, How to Live Better with Lymphedema, which covers my journey of 10 years. Sort of explaining, I suppose, 30 subjects that I've experienced along my lymphedema rollercoaster. There's the reality of the patient experience, if you like, with tips and hopeful, hopefully useful suggestions that have improved life and may improve yours too. Joining me are over 20 experts providing trusted information and guidance on those subjects. As I mentioned, most of the people in the book are on the website and I'm blessed that I didn't receive a no when asking for help in their contribution. And like the website, 25% of the profits go to charity. So the book, 25% of the profits go to the Lymphedema Research Fund, which hopefully will eventually find a cure for lymphedema. The book's available on our website, all over the world on Amazon. And so far, I've had excellent feedback from people who have bought it in the UK, UK, Australia, Canada, New Zealand, America, it's quite humbling that it's making such a difference. And you can find us on social media at Lymph United. So just to recap, for the first three or four years of having lymphedema, I was stuck in a period of mental and physical challenge and it wasn't fun. I had no one to turn to really to understand and although I had the help from my specialists, no one can really understand unless you've got lymphedema. So it was important to meet other people with lymphedema and that's where the support groups came in and the conferences. But after burying my head in the sand for so long, the emphasis for me was research to try and find solutions and many of these solutions I've shared to help other people to fast-track solutions for you so you don't have to prolong the agony and whether that's finding a comfortable pair of shoes or jeans or trousers or a blouse that fits then fantastic if that's the moral support of knowing that there's a community that that we're building here at Lymphedema United that can help you, including other people with lymphedema, suppliers, experts, organizations, and charities, then we've achieved one of our objectives. And the objectives, just to recap again, to help others with lymphedema, to raise awareness and especially get men talking, and to raise money, much needed money, for lymphedema charities. I hope this has been of interest. If you have any questions or you'd like to unite with me directly, my email address is hello at lymphunited.com, that's hello at lymphunited.com. You take care, stay strong, stay positive. There are many out there that can help you with your journey. You really are not alone. Thank you.