Life is only travelled once,
today's moments become tomorrow's memories
Enjoy every moment, good or bad
because the gift of life is
SHARE MY STORY,
LET MY LEGACY CONTINUE.
From the beginning
****Let me be me****
Mel de Lacy
Before the diagnosis
I’ve always been fit and healthy. I love the outdoors and run on the Downs with my dog. I swam in lakes and rivers and even completed some triathlons and long distance swims. As a family we always took active holidays in the Alps, skiing in winter and walking and climbing in the summer. The children longed for a family who would sit still or take beach holidays like their friends!!
I looked forward to our next physical challenges; rafting, downhill biking, canoeing, paragliding .....the list goes on. The sky was the limit, the children were getting old enough to really enjoy long days in the mountains. There wasn’t a mountain that we couldn’t conquer together! It was lots of fun. I was excited for our future holidays together.
Being a Physiotherapist, my passion was fitness and I used my knowledge of exercise and nutrition to support my patients through injury and illness. I taught Pilates and hoped that my love of a healthy lifestyle would inspire my patients to help themselves.
I was a busy mum of two sporty children and had run my own Physiotherapy clinic in Chichester for 20 years. I also worked at Spire Hospital Portsmouth treating pelvic floor related problems and women’s cancers. I believed that it was possible to continue live a fit and active life with cancer through exercise and lifestyle change.
I loved my work.
Then, exactly a year ago , everything changed.
Gradually over about six weeks I began to get short of breathe. I couldn’t run anymore, so I cycled instead. Then I couldn’t cycle, so I walked and then I couldn’t breathe when I walked or talked or ate.
A few friends had viruses that were causing chest problems so I assumed that I had the same. I was given some antibiotics for a chest infection but they didn’t work and after I collapsed out walking the dog, I took myself back to the GP. It was October half term. The children were off school. It was Halloween. There was a lot to do. I didn’t have time to be ill. The GP couldn’t explain my symptoms so sent me to A&E for a chest XR.
That day my whole world fell apart. The bubble had burst.
I had a massive right lung tumour the size of a small football that was squashing my trachea ( wind pipe)to 3 mm and restricting blood flow in major blood vessels. This was serious. I was transferred to Southampton as an emergency to put a stent (tube) into my trachea so that I could breathe. The following week, biopsies and CT scans revealed a diagnosis of advanced metastatic Leiomyosarcoma (LMS) This is a rare form of Sarcoma, a cancer that affects the connective tissues in the body like the internal organs , muscles and bones. Sarcomas are rare and account for only 1% of all cancers. Leiomyosarcoma (LMS) accounts for only 5-10% of all sarcomas.
At the time of my diagnosis it was thought that the lung tumour had possibly originated from my uterus (womb). Six years previously I had a hysterectomy for fibroids. Fibroids are common growths in the uterus and most are benign (they have no cancer). I was told that mine had also be diagnosed as benign six years ago but that it was possible (as the fibroid was large) that the biopsy had been taken from a part of the fibroid that did not have the cancer, so they would send the old sample up to The Royal Marsden for an expert review.
My prognosis was poor. LMS is an aggressive cancer and resists treatment with chemo and radiotherapy. The tumour was large and inoperable. It had already spread to my bones. The best chance of improving life expectancy is removal of the tumours when they are small. Early diagnosis is therefore the key along with regular monitoring and timely intervention. I was told that I had 12-18 months to live with treatment to slow down the disease progression.
Several months later I learned that the biopsy taken from the fibroid six years ago was incorrectly diagnosed as benign. It was in fact malignant. (cancer). There had been a mistake. I had been living with cancer all that time. It had been progressing unchecked and untreated for several years. The fact that I was fit and healthy may have played a part in masking any symptoms, until that is, it almost killed me last year. If it had been diagnosed at the time then, maybe the outcome might have been different....but I didn't have that opportunity.
I got on with my treatment- 5 months of chemo and 3 months of radiotherapy and amazingly against all expectation the tumour shank by half and I was able to have the stent removed! This had caused me a whole winter of chest infections, pneumonia and breathing difficulties. I could breathe again and in March, I started to run again. It was amazing. I really thought my running days were over. Then we skied, then I ran my first ever 10K fell run in the Lake District. Scans in June and August showed all was stable. Could I be a miracle, an exceptional responder? Was all my exercise and sugar free diet crammed with antioxidants and anti-inflammatories like green tea, turmeric, garlic and ginger helping me to prove everyone wrong?
We went to Cornwall and I surfed, we kayaked and swam in Greece. I went back to work at Spire in September and against the odds, completed the Chichester Half Marathon (slowly!!) in October!
I planned to run a half marathon a month just to stay fit!
However, my cough was getting worse , I hurt a lot and was living on pain killers. I was tired. An XR in October showed that the cancer had progressed. This time into my pleura (lung membranes). It was progressing fast and I needed more chemo. This time I was warned that it might not work. That there might not be any way of stopping it.
Things weren’t going to plan! I had chosen another path. My mantra in times of negativity had been that I loved my life, that I would see my children grow up. That I would see their faces. This kept me positive and strong.
We had already told the children that I had cancer. That it was inoperable and that treatment would hopefully help to slow it down. Two weeks ago we had to tell them that I wouldn’t get better. That the treatment possibly wouldn’t help this time and that I would die. No one knew when. This was the hardest thing that I had ever had to do and was heart breaking but it is the reason why I feel I can now tell my story.
I decided that with everything out in the open, I needed to raise public awareness of Uterine Sarcoma.
Many women (70-80%) of women over 50 years of age have fibroids. They are common and cause heavy bleeding and pain. Like me, most women will have absolutely no idea that their fibroid could be cancerous. No one told me and I also worked with women’s cancers daily and had no idea that I had it. It is silent. It can’t be detected by blood tests. It is usually only diagnosed by chance after a hysterectomy for fibroids. It is often diagnosed late when it has already spread into the blood stream. Once it has spread, there is no cure and the prognosis is dire. I only had one chance of a diagnosis and this was missed.
I want to raise awareness in the medical profession, amongst GPs who could refer women for imaging earlier; Gynaecologists, who need to be investigating worsening symptoms and Pathologists who need to be more aware of the high risk of mis diagnosis.
Sadly it’s too late for me. However, it’s not too late to help other women to achieve better outcomes. Sarcoma is rare and research into new treatments are few, just because there are not enough patients to test new the drugs on but trials are going on and new treatments such as immunotherapy are being licensed all the time.
With your help and support, improving awareness will give women more time. More time for more effective treatment to be found. More time with their families.
Despite all this heartbreak, I have had an amazing year! Sadly I had to give up my Physio clinic but I’ve been able to step off the treadmill and immerse my self in true life, the wonder of nature and the love and warmth of people around me. I have been truly amazed by the care of my support team- counsellors, yoga teachers, Spire Oncology nurses and the Sarcoma Centre at Southampton General. I have been made to feel so special and without their help this last year I really don’t think I could’ve found a way through all of this.
However, I want to thank most of all my husband Matt and my amazingly supportive friends and family who have had to put up with my often crazy determination and strong will power in my attempt to carry on being normal!!
I never wanted to be defined by my illness. All I wanted since my diagnosis was to just do normal things, to enjoy each day, to laugh and have fun, to do mad and crazy things sometimes. And that’s why I am calling this page, “ Let me be Me”. The cancer might have changed and shortened my life but it’s never changed who I am; a wife, a mum, a Physio, a sister , a daughter , an Auntie, a friend. I’m choosing to stay strong and positive and I think I am ( possibly) one of the fittest terminally ill Patients around! Oh! and I’m back running despite the chemo ......
Please give your support and join me in my adventures by gaining sponsors, donate through this just giving page or do your own thing to raise awareness. Thank you so much for listening.
I’ve always told my children that you should never stop believing; that anything is possible and that positivity is the key .
I believe that in time, there will be a cure for this and other rare cancers and that we should never give up hope of finding one.
Never say never....