I've created this page to:
šš¼ Help others by sharing knowledge, learnings and wisdom
š Shine a light on Lymphoedema and it's challenges
š£ Advocate for treatment of this chronic condition to be included under Medicare
šø Capture my progress and keep myself accountable
š Live in hope that one day a cure for this condition becomes available
š¤Ŗ Make lymphie life fun and laugh at myself along the way
My story so far with Secondary Left Leg Lymphoedema:
š¦ On 3rd February 2021 I was diagnosed with stage 4 metastatic squamous cell carcinoma (SCC) of unknown primary. The original tumour started on an internal surface skin but I'll never know where as my body got rid of it; unfortunately not before it had already jumped into my lymph nodes and spread throughout my whole lymphatic system including the lymph super highway, which is the vein like system lymph fluid uses to move through your body and drain toxins and other super handy stuff. A swollen, puffy ankle on my left leg that had been coming and going for a few months was what alerted me and the medical professionals that something was wrong. I had some other symptoms leading up to my diagnosis that, on reflection and with the benefit of hindsight, were also an indicator my body was struggling but weren't enough at the time for anyone to think they better check for cancer. I was 41, fit, healthy, single, no children, working a big job in state Government, traveling for work regularly, active and living my best life, albeit I was so very tired all the time... for as long as I can remember! And I had pain in my left groin and flank area...
š» Once all the scans and procedures were completed (and there were many!) my oncologist was very straightforward of the seriousness of my situation. Refuse treatment and I wouldn't likely make it to my birthday or Christmas that year, start chemo and I could get two years at best. I started an insane regime of double doses of two chemotherapies on International Women's Day, 8 March 2021 and received almost a two years supply over a six month period. At the time of discussing treatment options, I was told that targeted immunotherapy treatment could do more for me in the long run (if it worked) and was essentially my Hail Mary. The kicker to this option though was because my primary cancer couldn't be determined (there's 10-20% of us CUPs (cancer of unknown primary) in the world) I would have to pay up front for the super drugs to the tune of $60,000! Two very close friends convinced me we could raise the money through crowdfunding and once the campaign went public, I managed to raise the whole $60K in four days!! It's the biggest display of giving and receiving, love and generosity, kindness and compassion I've ever experienced. I had spent a large portion of my life up until this experience, doubting myself and how loved I was. I'm now VERY clear, I mean A LOT to many many people. Everyone who invested in me are my hero's. Many are strangers, people who know me through others; once, twice, three times removed. Many are people I know very well and it often brings me to tears when I think how generous they have been. Check the website section of this page for a link to the (now closed) campaign for more information and the progress updates.
š There's so much more to the story... maybe one day, I'll write more about it but what I'm leading up to, in a very longwinded way is firstly, I'm having a miraculous response to treatment. I survived the insane chemo regime and Immunotherapy is working to the point my cancer is stable and under control. I receive immunotherapy for two years in total and at the time of writing this I have another 8 ish months to go on that. Secondly, that initial ankle swelling that lead me to the doctor and to being diagnosed has not gone away... in fact, it's gotten worse. The swelling now extends up my whole left leg and into the left side of my abdomen and left butt cheek. I've been wearing thigh length compression (just your run of the mill off the shelf, circular knit compression class 2) since about April 2021, receiving manual lymphatic drainage massage and hoping like crazy it would just go away, the more treatment worked.
š¦µš¼ It turns out I have what's known as Secondary Lymphoedema - damage caused to the lymph nodes, lymphatic vessels and the pumping action of the lymph super highway due to the amount of cancer that was in my lymphatic system and associated cancer treatment. I
commenced a very steep learning curve about the chronic illness that is Lymphoedema since being officially diagnosed by specialists from the Australian Lymphoedema Education, Research and Treatment (ALERT) at the Macquarie University Hospital in Sydney in March 2022. I started an onerous intensive reduction regime with a strict protocol from the team at ALERT in April and have been in a custom made garment since. Unfortunately though, my custom garment isn't working the best and it's literally been three steps forward, two or four back over the past five months. Making gains, feeling hopeful, losing gains rapidly and feeling hopeless. Much of the Lymphoedema journey is unique to each individual, their system, how they respond to compression garments and treatment and unfortunately, it's not something you can get right straight away... So here I am, about to start another Intensive Reduction Regime to hopefully get into a higher level and much firmer compression garment and I'm going to put myself out there and invite you all into my world while I do it. I'm a bit scared, but I know this will help someone else one day and shine a light on life with Lymphoedema - it's far more onerous and taxing than people realise and it impacts all areas of you life, physical, emotional, social and spiritual.
š«¶š¼ I've had a lot to get my head around. My cancer journey and adjusting to life with Lymphoedema hasn't been easy and it's still an ongoing process. There's lots they don't tell you in the brochure when you're diagnosed with terminal cancer and my Lymphoedema was overlooked early on as there were other obvious priorities to focus on. If I had of known a year ago, what I know now, I may have delayed the progression of this degenerative chronic illness but alas, here I am, learning by experience, educating myself and learning how to live with and accept my lymphie life.
