Author: Gaynor Leech, Founder of L-W-O Community
This whole year has been a rollercoaster of mixed emotions, lockdown has forced a rethink the way organisations work whether you are in paid employment, running a business or those of us who work unpaid in the voluntary sector we will all have experienced some change in our lives. L-W-O Community has been no exception although I believe we have done well largely because for the last 12 months all our different social media strands and websites have been brought together under the L-W-O Community title. We have finally found our place within the lymphoedema community, doors that were firmly closed are now opening, encouragement, positivity and support this year has been amazing and beyond anything I could ever have imagined when I started L-W-O.
Financially things have been tough because donations have dried up apart from a few loyal supporters who have kept us ticking over. This year for the first time since 2016 I have had to pay two bills out of my own pocket which isn't ideal especially with the amount of time I devote to L-W-O. With that in mind I have decided to set up a GoFundMe page for L-W-O Community so please donate we are using the #Seven and #anniversary to highlight the work we have achieved over the last seven years and I will be putting out posters and a video. Our fundraising campaign will last until we reach are target.
As L-W-O approaches its seven-year anniversary mid- September it is only now on reflection that I realise how much the year of 2013 changed my life beyond all recognition both personally and professionally.
I am truly proud of my family and I normally do not talk a lot about all our challenges health or otherwise. A conversation with a friendly acquaintance a few weeks ago who said “It’s time to tell the story behind the story. Not just your lymphoedema story but the background stuff. Over seven years you lived through chronic family health issues, including your own, the loss of your Mum, the loss of two of your best friends, the loss of other friendly acquaintances and all the time you have built this amazing community, you have weathered the criticisms, you are learning to conquer your own self-doubt”. Here is a look at:
'The Story behind the Story’.
We ended 2012 with a New Year’s Eve party at our local pub with friends and friendly acquaintances and entered 2013 in high spirits. We had two major events to look forward to the birth of a new grandchild and I started secretly planning hubby’s 65th birthday party. He had no intention of retiring he had been working for 50 plus years and the thought of retiring was completely alien to him. The plan was to slowly cut back his hours so that we could get some savings behind us for the cruises we planned and the big house project to put a solid tiled roof on the conservatory. On a personal level I had been researching lymphoedema for the last two years and I was beginning to realise how much information I had researched and collected.
Our first website banner
Our lovely granddaughter arrived in May 2013 and the 65th birthday plans where advanced with lots of friends and family helping to keep the celebrations secret from hubby. Party time arrived mid-August, our local pub is just round the corner from where we live so hubby was told we were going for a meal with two friends, so far so good. I will never forget his face as we walked through the door, he really was surprised that we had all kept this a secret from him. That night he had more than one too many and he danced and sang all night it was fantastic we all had such fun. He often jokes that the shock was so much that it caused his heart to fail. I am under strict orders not to do it again. Of course, I always do as I am told!
Within less than a week hubby was showing signs of not being well, several trips to the doctor did not reveal anything untoward, he carried on working. I started looking at possible websites and collating the information I had gathered and trying to learn how a Facebook Page worked which was a complete mystery as was all other forms of social media. Totally beyond my comprehension. The first week of September 2013 family life as we knew it changed forever.
Hubby started to struggle to breathe and he wasn’t going to do anything so in the end I bungled him in the car while he was complaining that ‘he would be fine’. Typical man! I took him to the hospital where he was admitted for tests with a query of heart problems. In between hospital visiting I had decided to stay with the web hosting company that I used for my family history. There are those that think that I do not have any other interests besides L-W-O but my all consuming hobby is my family history and 2020 has seen me rewrite and revamp this website.
A domain name for the new website was chosen and hosting package was purchased, out of my own money because at that time I had no other intention than getting information down in a format I could make sense of. L-W-O was ready to be launched. I felt that if it helped one person from experiencing the anger, I felt at not being told I could develop lymphoedema after cancer treatment then it would be worthwhile. The Facebook Page was launched the same week. Hubby came home with a diagnosis of Atrial Fibrillation his Mum had lived with this for many years so at that time we were not unduly concerned.
Mid-September 2013 and L-W-O was launched, initial feedback was good from those who live with lymphoedema but there were others that were not so happy. However, I plodded on in between hospital visits with hubby. Then hubby took a turn for the worse and this time an ambulance was called. He was diagnosed with Chronic Heart Failure (CHF) his long-term prognosis was not good, his working life as a joiner was over and there were doubts as to whether he would make Christmas 2013. Apart from medication at that time we were told there was nothing they could do for him that his heart was severely damaged and to take one day at a time.
L-W-O was beginning to grow, and I was beginning to be invited locally to all sort of meetings and courses during 2016. Then in October 2016 my Mum died, she was 90 years old. Four weeks to the day my cousin died after battling breast cancer for 11 years. Emotions were confused and very raw at that time especially concerning my cousin I guess because I had survived breast cancer. The upside was that our beautiful great granddaughter was born so great joy. Twenty-four hours after her birth we were told she had a lymphatic malformation. I had repeatedly been asked by L-W-O parents to set up a family support group as several of them belonged to our adult support group. I had always declined but now with our great granddaughters’ diagnosis we as a family needed to learn about her condition and so I kept busy organising and researching the feasibility of a new support group designed for families. This was officially launched on the 1st January 2017 twelve days before my husband had a near fatal heart attack.
With hindsight I guess running L-W-O became a distraction from all the hospital visits, loss of a good income, the loss of our social life and having to adapt to a new way of life. Thankfully, seven years on he still with us. The day of his heart attack I managed to get him into to see our GP who promptly sent him to the hospital for an X-ray, he drove to both absolutely in agony and nobody picked up what was happening. The only reason I had not driven him was the fact I had at that time the virus from hell my ribs felt bruised and battered from all the coughing and all I wanted to do was sleep. The minute he walked through the door at home I could see he was not well, and I called an ambulance which arrived quickly.
The skill of the two paramedics who had to bring him back when he flatlined on the way to the hospital, the speed at which UHCW worked to get a stent put in, plus the subsequent care received from both UHCW and GEH he is lucky to be alive. He has also been fortunate to receive one of the new super drugs which we were told would transform CHF. At the end of August 2020, the latest round of tests indicates long before being diagnosed with CHF he had probably had several heart attacks which is why the damage has been so severe. The difference from 2013 to 2020 are the new super drugs and in the future the possibility of being eligible for an Implantable Cardio Defibrillator (ICD). Two weeks after his heart attack I had a Total Knee Replacement (TKR) my second. Thankfully, I had recovered enough from my virus for the operation to go ahead. Neither of us could drive for six weeks, we could barely look after ourselves let alone each other but as you do, we somehow got though with support from family and friends.
Prior to his diagnosis in 2013 he used to suffer with chronic heart burn and would pop antacids both prescribed and over the counter so if you read this and this sounds like you please don’t dismiss the warning signs do get checked out and if you are dismissed by your GP insist on an ECG.
Three years later as a family we went through the same thing again when our middle son, who was in his early 40’s was also diagnosed with CHF, also lucky to be alive and he lives with an ICD and lots of medication. This gave us as a family more insight into heart problems and we have now been told is genetic and we know of at least two generations of my hubby’s family that had the same disease which is a constant worry for all our family. We have had to put this information in a box and whilst it does not go away because with CHF there are always good days and bad days life must go on for everyone else.
Despite all the family trials and tribulations, the birth of our in beautiful new great granddaughter in 2016 who was born with a lymphatic malformation and in 2018 we had another granddaughter bringing the total number of grandchildren to 11. Both the latest additions to our family are real characters and brighten our lives every time we are in their company. Our older grandchildren are either working, or going to 6th form college and nothing pleases us more than when they find the time in their busy young lives to come and see us or when they say to us “Do you remember when?” referring to some activity either their Grandad or I had done with them when they were younger.
While the cruises are on hold, the conservatory got its solid roof thanks to family and friends who rallied to get all the work done, while hubby supervised.
During 2018 I worked non-stop on raising the profile of L-W-O both online and in the community and looking back even I am surprised with all the activities we took part in. I call 2019/20 a year of consolidation were all the various social media strands were slowly being brought together under the heading of L-W-O Community and for the first time I had the feeling that I wasn’t banging my head against a brick wall because some of the bricks are beginning to dislodge and others are tumbling down.
Whatever life challenges any of us face no one could have prepared us for 2020 and yet for L-W-O Community this has been our most successful year, we are no longer the biggest social media private support group on Facebook in the UK however we have grown our other social media platforms and we now have 3500 plus members, followers and supporters. Our main website is approaching 500,000 viewings and our new family’s website launched in July 2020 has had 3400 plus viewings. L-W-O has valued working partnerships both in the UK and Europe and support from our American, Australian, and Canadian friends. My passion for writing has led to several articles being printed, I have been interviewed for articles, a podcast plus two radio interviews. Yet I am still surprised when I am invited to write an article or be interviewed and humbled when given a compliment about L-W-O.
My Family
I owe a big thank you to the volunteers who have helped along the way, the members of our support groups who have stayed with us. To those who have freely given advice, picked me up when I fell down and supported what L-W-O Community has been doing, my heartfelt thanks. Despite all the mixed emotions, sleepless nights, the laughter and the tears over the last seven years I am immensely proud of my family and tremendously proud to be a patient advocate.
Cherish the Past, Embrace the Future
Please donate so that L-W-O Community can continue to maintain our two websites
