Faye Louise

Transcription: My name is Faye Louise, and I am from the United Kingdom. I received a diagnosis of lamon last August, which was a bit strange for me because there weren’t any obvious signs that I had anything more sinister than an ovarian cyst. I was experiencing cramping, bloating, tummy pains, and discomfort before and after my period. Initially, as a female, I just thought it was period-related. I’ve always suffered from heavy periods, all through my teens, 20s, and into my 30s, and I very much followed my mom in that, so I thought nothing more of it. I went for a GP appointment, and they asked me if I had any problems with my appendix. I said I’d never had any issues with it, so she referred me for an ultrasound. The scan confirmed that I had a 17 cm ovarian cyst on my left ovary, and that’s all it was supposed to be.

I went to the hospital for my laprotomy because the cyst was so large, I had to have an open surgery on August 7th, 2023. Unfortunately, on August 8th, I got the news that while operating, they found a tumor on my appendix that had been there for quite a while. I was quite surprised to hear that, and five weeks later, I was officially diagnosed with a low-grade appendiceal mucinous neoplasm. Initially, they thought it was just a right hemicolectomy, where they would take a small portion of my small bowel, because when the surgeon opened me up, he saw a few deposits on the outside of my small bowel, in addition to the tumor on the appendix. They said it would be a right hemicolectomy. But when the biopsy results came back, it went from something small with a six-week recovery to something much bigger, with a massive surgery needed, called the “mother of all surgeries” (MOAS).

I was told that because the cancer was quite complex, I would need to be referred to Basin Stoke, where specialists in this type of tumor are located, at North Hampshire Hospital. I met with them on September 18th, and the doctor, after reviewing my scans from the initial hospital where I had my cyst removed, said he thought he could remove everything from what he saw in my CT scans. However, it came at a cost. I had to undergo a full hysterectomy, and on what he called the “shopping list” were my spleen, gallbladder, appendix, and other parts. He reminded me that when he opened me up on surgery day, which was scheduled for November 1st, he would know for sure what was going on inside and what I would have to lose.

Preparing for that news felt strange. On one hand, I was reassured that they noticed it, and there was a plan in place. They weren’t just leaving me to sit there while the tumor spread. But on the other hand, I didn’t expect to make it out alive. The best advice I received was to build up my body before the surgery. My surgeon said I needed to build muscle mass to help support recovery from such a huge operation. I worked out on my exercise bike for 45 minutes every day, pushing myself as hard as I could. I drank protein shakes to regain the weight I lost from the cyst surgery. I had lost about 8 kilos after the cyst operation and needed to regain that before being cleared for the MOAS on November 1st. I had three months to recover from the laprotomy and build up my body, so I could be strong and give myself a head start on recovery from MOAS.

On November 1st, I had the full cytoreductive surgery (CRS) with heated chemotherapy directly into my abdomen while I was on the operating table. It was an 11-hour surgery, two hours of which were dedicated to chemotherapy. Afterward, I was kept in ICU overnight to rest my body. I remember waking up, feeling totally out of it. I had an epidural for pain relief, and every so often, I had morphine. I remember trying to swallow and feeling like I had sandpaper in my throat, realizing the NG tube was in place, just as everyone had warned me about. My surgeon was by my bedside and told me the operation had been a success—it had gone much better than expected, and they had removed everything. I couldn’t believe it when I heard those words, “We’ve got it all.” I thought I was having an outer body experience or something.

I stayed in ICU until Thursday evening, then transferred to the ward where I would start my recovery. The first few days were a blur, and I don’t really remember much, which is strange. I tried to think back, but my mind was blank. A lot of the time, I was asleep because the body recovers better that way. I was fed soup, but with the NG tube, everything was uncomfortable to swallow—liquids, soups, jelly. The days passed, and I had to rely on the nurses to help me. I had no core strength due to the surgery. I couldn’t even move from the bed for the first four days, and it was honestly the most brutal experience. But looking back, it’s amazing how the body can heal.

Eleven days later, I went home, and life at home was difficult. I relied heavily on my partner, who became my caregiver. He made all my meals and took care of me. I couldn’t have done it without him. I was on a very bland diet, mostly living on chicken fillets with tiny portions of potato and gravy, avoiding vegetables for the first four to six weeks because I had to follow a low-fiber diet. I lived on jelly, ice cream, and yogurt with jam, avoiding any seeds or greens that could irritate my bowel. Thankfully, I didn’t have any problems when reintroducing foods into my diet after the recommended three months. I came off my morphine by week six, but I had withdrawal symptoms, so I ended up back in the hospital with severe stomach pain. They eventually weaned me off morphine and put me on dihydrocodeine. After 9 to 10 weeks, I didn’t need anything stronger than over-the-counter paracetamol.

Even though I’m now seven months post-op, my partner is still looking after me because it’s still quite a battle some days. I do experience discomfort because I ended up having more surgery than initially planned, and recovery has been brutal. But, despite it all, I want people to know that cancer isn’t pretty, but you can recover and get your life back—the “new normal” as we call it. In February, I had a follow-up with my surgeon, and when I saw him, it felt overwhelming. I see him now as someone who saved my life. It’s a strange feeling when you see the person who saved you. He told me that normally, patients feel horrendous, but by the eight-week mark, there’s a shift, and everyone starts to feel like they’re climbing a mountain toward recovery. That’s exactly how it’s been for me. It’s been a mountain, but it makes you appreciate life. I see it as a life reset. You learn to appreciate waking up, being healthy, and living your life.

Now, I’m doing things I’ve always wanted to do—booking holidays and traveling. I’ve booked a Mediterranean cruise for May 2025, which I’m really excited about. It’s all about getting out there and showing people that yes, cancer is scary, yes, it can kill you, but it will never destroy who you are inside. It will never take away the person you are. I’m now under Basin Stoke’s surveillance for 20 years, which can feel daunting, especially when you’re young and diagnosed with cancer. I do wonder if I’ll make it to 59, when I’ll officially be declared free of the disease. Mentally, it does take a toll. I fear recurrence, which I think is natural for anyone with cancer. Some days I don’t think about it at all, and I can enjoy myself. But when I look in the mirror, I’m reminded by the scars of what I’ve been through.

I’ve started counseling for trauma, which they recommended at Basin Stoke. I tried for six months to avoid it, but I’ve realized I’ve got nothing to lose by talking to someone. It’s important not to be ashamed to reach out for help. It’s easy for people who haven’t been through what we’ve been through to think we’re fine because they see us out living our lives. But it goes much deeper than what you see on the outside. Mentally, it can be a struggle, but you have to try and appreciate that you’re still here. You have to cling to positivity from your surgeons and trust that they’re doing what’s best for you. Every scan I have will be scary, and I’ll have scan anxiety, but I’m hopeful that there will be no evidence of disease, and I’ll get another three years of living cancer-free. I’ve been connecting with others who’ve survived this surgery and this cancer, and it gives me hope. There’s always hope out there, and you have to hold on to it. You just have to live your life and take it one day at a time. If you’re newly diagnosed, reach out to others who’ve been through it. There are survivors out there, and you can make it through.