Here’s Faith

In March 2014, I began experiencing intermittent, debilitating pain which radiated over my left hip and down into my groin. My husband took me to A&E (we're in the UK) where I had a CT scan for kidney stones. When it wasn't that, I was sent home with strong pain killers and told to see my general practitioner.

My general practitioner determined it was IBS – irritable bowel syndrome. I was given pills and sent away.

That was the start of almost two years of doctor referrals, blood tests, CTs, MRIs, x-rays, nuclear & internal scans. I even had a laparoscopy procedure. I was poked and prodded by every specialist at the local hospital.

I was told it was anything from menopause (yes seriously!) to endometriosis or fibroids. And even at one point, it was implied that it was in my head!

Eventually, I was referred to a colorectal surgeon. She promised to keep me in her clinic until she found what was causing the pain. True to her word, in November 2015, she found a small mass (4.5 x 5cm) near my left kidney. What was really frustrating was that it was on the very first CT scan I'd had back in March 2014 - no one had spotted it.

I was assured it was probably a benign cyst or lump and not to worry. I was referred to an endocrinologist at a London hospital.

He agreed it was nothing to worry about but as it was near the kidney it should be removed. 

I had keyhole surgery in January 2016. The following morning the surgeon came to see me to say they had biopsied the lump and it was in fact a retroperitoneal leiomyosarcoma.

I sat and cried for ages. I was devastated. Cancer is a very scary word.

I was referred to the Royal Marsden in London where they had a sarcoma program. I was put on three monthly scans, due to the high recurrence rate and the misdiagnosis.

In March 2018 (almost four years to the day of my first pain) I was told I had a recurrence. Worse still, that it was inoperable (as it was to near the mesenteric artery) and therefore incurable. 

I was told to go and make memories with my children, aged 31, 29, 10 and 6 at the time. (I had lost my 8-year-old in a road accident some years before.) I was given 28 sessions of grueling palliative radiotherapy (no one tells you about the tattoos by the way!) This, I was told was to try and extend my life a bit and categorically NOT to try and achieve any shrinkage to enable surgery.

I was beyond devastated. How could I die while my youngest children were so little? 

I spent hours with my husband researching herbal remedies. I started taking various herbal medicines, including illegal ones. I had nothing left to lose in my opinion.

After my radiotherapy, I had a scan to see how much growth, if any there had been.

I sat nervously waiting for the doctor. When two doctors and a nurse came in the room I thought this must be really bad and braced myself for more bad news.

To my amazement, one of the doctors, Dirk Strauss, (a soft tissue sarcoma surgeon as it turned out), told me that against all the odds, my tumour had shrunk AWAY from the mesenteric artery by a millimeter. This gave him a tiny chance of removing it. I was told the surgery was major and very risky and if successful, I would definitely lose the left kidney. Worst case scenario was that I could die on the operating table. 

It was my decision. Easiest one ever - I had to try surgery.

2 weeks later I had the surgery. I had 72 staples down my front. The incision was from between my breasts to just below my bikini line. 

The tumour was gone though (with the kidney), with clear margins. I was absolutely ecstatic!

Sadly, since then I have had two secondary lung nodules (one in each lung.) Both were removed with surgery (a thoracotomy), in September 2019 and October 2021. Two weeks after the last surgery I suffered a partial collapsed lung and pleural effusion. Then ten days after that I had COVID-19.

I am currently NED for the 4th time, but I take nothing for granted with this disease. I am always scared and always expecting bad news. I am not religious (given everything I've been through), but I do have a big, loving and supportive family that get me through.

I am still scanned every three months. I am so thankful for our NHS – National Health Service here in the UK, I don't know what I would have done otherwise.

I've been on this LMS journey now for eight years and want to stress to newly diagnosed warriors that there can be hope.

My advice is, be careful with research, it can help but it can also hinder and scare!

Join online support groups. They are an invaluable source of information and support.

Mostly, never stop fighting, grab every day and live your best life.

My children are now 35, 33, 14 and 10 and I am grateful for every day that I am lucky enough to have with them. I have been to hell and back, but I will keep fighting this for as long as I am able.

I wish you all love. 

Faith Weatherley 

8/30/22