News & stories Personal stories Helena Published January 2021 When I was diagnosed in August 2018 it came as a complete shock, not that cancer hadn’t crossed my mind, but I thought it seemed melodramatic to consider it a real possibility. I didn’t feel ill. Since I was a teenager, I’d had bouts of extended bleeding that had been investigated but never resolved, so when my period lasted a few weeks and I had a nagging stomach ache, it didn’t ring any alarm bells. The only reason I saw my GP was because I happened to be off work for a week and my husband prompted me. I know many women struggle to be taken seriously but my GP listened carefully and arranged blood tests and an ultrasound, which led to a hysteroscopy (a procedure used to examine the inside of the womb), showing a growth on my ovary and thickening of the uterine lining. The consultant initially told me I had endometrial cancer which had spread to my ovaries. At a later review they concluded that I had synchronous endometrial and ovarian cancer (the two cancers were present simultaneously). The CT scan also showed a tumour on my bowel and a lump in my breast that needed further investigation. I was to have surgery and might need a stoma; chemo and radiotherapy were likely. They said I was young, fit and healthy – apart from the cancer. It was a lot to take in, the scale of the diagnosis was bewildering and the speed at which everything was moving was unnerving. Although I still laugh at the memory of talking it over with my husband to see what he thought we should note down from the consultation: “They think you’re young!”, he said. I was very lucky to have such speedy care as within days I was at a breast clinic, and in little more than an hour I had a mammogram (an x-ray test to detect breast cancers), a biopsy (a sample of tissue taken from the body in order to examine it more closely) and the all clear. Three weeks after my diagnosis I had a total hysterectomy with bilateral salpingo-oophorectomy (surgery to remove the womb and both fallopian tubes and ovaries), omentectomy (surgical removal of all or part of a fold of fatty tissue inside the abdomen) and cytoreduction (a procedure that aims for the complete removal of all visible tumors affecting the protective lining of the abdomen), no stoma required. I’d been suffering from advanced, undiagnosed endometriosis with stage 2 endometrial cancer and stage 3c endometrioid ovarian cancer, both grade 1. It was during the recovery period that it really started to hit me. I had friends to distract me, and my husband and sister to support me, but at times when I was alone I’d get caught up looking at statistics, that without the context of individual circumstances or advancements in treatment, made for miserable reading and left me feeling incredibly low. It was like poking at a bad tooth, I knew I should leave it alone, but I kept on regardless. It was almost a relief to start chemo, even though it terrified me. Out of the blue a woman I’d met through volunteering got in touch to tell me she’d recovered from cancer, that treatment would whizz by and chemo was “do-able”. It sounds a small thing, but the unprompted kindness and shared experience totally changed my perspective and gave me the boost I needed at the right time. I also realised I couldn’t cope with the bigger picture, I had to narrow down what was in front of me, 1 step at a time and let tomorrow take care of itself. I had six chemo sessions, one every three weeks, with no bad side effects, just tiredness and achy legs. My consultant suggested I try the cold cap. The first time it was like an extended ice-cream headache, but I still had another go, and two paracetamol, blankets and my flask of tea worked wonders and I had no problems after that. Near the end I started losing hair, (I’d got too blasé about checking the tightness of the cap), but I kept most of it, so with a combination of hair building fibres and combovers I didn’t use a wig. My hair grew back at rapid rate, giving me curls for the first time in my life. It was bizarre to discover I’d need tattoos for radiotherapy and then a relief to see how small they were (radiographers use small skin markings to line up the machine for treatment). I moisturised constantly and had to eat bland food, but I had no real problems and it was a great excuse to eat too much white bread and potatoes. My final treatment was brachytherapy (a procedure that involves placing radioactive material inside the body), just two sessions of about five minutes long. I shared the waiting room with elderly men waiting for prostate treatment who were clearly curious about me being there. Big things were going on in the background as two weeks before my diagnosis we moved house, my recovery was spent surrounded by boxes, feeling guilty about my inactivity. The day of my hysterectomy was meant to be when I started a new job, having left my old one of 14 years in the week of my diagnosis. Six weeks after my treatment finished, I arrived at my new place of work, nine months late. I wasn’t filled with joy when my treatment ended, getting back to normality was a lot harder than I imagined. I found the build up to the first few reviews stressful, like waiting to be diagnosed again. I don’t tell people when they’re due because if it’s bad news I want to choose when to tell others. There’s a cake I only have after each three-month review. I tell myself that if it’s good news I’ll have one to celebrate, if it’s bad news I’ll have one to cheer myself up. If I ever start to worry, I focus on the cake rather than the appointment! I see two consultants, one for each cancer. In December 2020 my CT scan still showed no evidence of disease and I’ve tested negative for BRCA and Lynch Syndrome. I know the chances of recurrence are high, but it doesn’t dominate my life. Managing the fear has been like dealing with grief. It hasn’t gone away but it doesn’t control me, it’s just a part of who I am now. I’m healthy and happy and since my return to work I haven’t had a single day off sick. I’d never given any thought to ovarian cancer or the symptoms before this so I’ve realised the importance of raising awareness as very few of my friends had either and several mistakenly thought that cervical screening would identify it.