Cancer treatment, overcoming chronic pain and a surprise pregnancy

“In 2012, soon after I got married, I developed a urine infection. I found that swallowing even a grain of rice would hurt, and my weight plummeted. I had an ultrasound and they found a mass the size of an apple in the retroperitoneal area – in front of my spine, behind the lung – wrapped around the aorta and the bulk of it was pressing against my stomach. I was referred to the Sarcoma team at The Royal Marsden where I had another scan."

Receiving a diagnosis of lymphangiomatosis 

"I remember sitting in the outpatient’s department, with my sister and husband, and they told us that I had a really rare form of sarcoma known as lymphangiomatosis. They basically said there's no cure for it and there's nothing that they can do. I was told they couldn’t operate because it was too big, and that I wouldn’t respond to chemotherapy or radiation."

"We discussed children, and they didn’t think it was a good idea because the hormones can make the mass grow. It seemed very unlikely I would have children, because to be honest nobody thought I would survive. I was completely shocked. My husband, who's usually very composed, was in floods of tears. I came home and it was like - how do we tell our family? Part of it felt like it was happening to somebody else." 

Taking a pregnancy test 

"I couldn't celebrate. I just took each day at a time, and by the grace of God, my child was absolutely perfect. As soon as I had my baby, the pain was back. It got to the stage where I was house bound. My husband was too scared to leave me alone at some stages."

Pain management at The Royal Marsden

"I was referred to Doctor Williams at the pain clinic, he’s an anaesthetist and such an asset to The Royal Marsden. I owe my life to him. He referred me for holistic treatment too and I benefited from acupuncture, psychotherapy and a mindfulness course."

"The level of care at The Royal Marsden was simply outstanding, I wasn’t treated as just another patient or another number - I was a human being that was going through the most horrendous time. The nurses felt like family, it felt like having another sister or having another brother just to be by your side, to hold you while you try to cope with such a difficult situation."

"The decision was made in 2016 for me to undergo a celiac plexus block. That’s when the Gastrointestinal and Nutrition Team (GIANT) became involved because the procedure was done endoscopically. There were no stitches or anything like that. The procedure had an amazing impact on me as after that point, I have been literally pain free. I haven't touched a painkiller in over maybe a year."

"On the one hand it was such a relief not to be in pain anymore, but the side effect was malabsorption. I dropped down to 40kg, as my body just wasn't taking in food. After hearing of my symptoms, Professor Kohoutova (from GIANT) immediately knew what I needed. She put me on injections called Octreotide, Creon and Colesevelam which made a significant difference to my overall health. She is my angel as she was just fantastic. She also referred me to the dietitian Catherine Fleuret who is simply incredible. Through both of their support I was able to put weight back on again."