Katy Bruce-Jaja, Essex
It was October 2018 and we had been away for the weekend visiting friends in Sao Paulo and returned on Sunday evening to our apartment, in Rio de Janeiro, where we were living at the time. We lived in Brazil for two years while my husband was working there. It had been a long day and seven hour drive so my husband and I and our two sons went to a restaurant for dinner.
One evening after eating a big meal (which I didn’t really fancy but ate because it was red meat and I knew I was anemic) I was woken by agonising pain in my side. It was like a terrible stitch pain – but so bad that I couldn’t move. I lay there for about 10 minutes before it finally eased off and I eventually fell asleep again.
I told my husband what had happened the next morning and, as this wasn’t the first time I’d had this pain (although this was definitely the worst it had been), he decided that we should go to A&E at the local hospital in Copacabana.
The A&E doctor was lovely and lucky for me he spoke English (Portuguese is spoken in Brazil and there aren’t many English-speakers). He listened to my list of symptoms; pain and lump in my side, night sweats, anemia, breathlessness, sickness and lack of appetite.
I’d been experiencing these symptoms for months but they had all been put down to pregnancy and hormones. My second son had been born in July, three months earlier and it had been a difficult pregnancy.
I had preeclampsia for the second time so had been closely monitored by my obstetrician. Preeclampsia causes raised blood pressure and low birth weight and can be very serious. When it was decided that my son wasn’t growing properly and my blood pressure wasn’t being controlled by medication anymore I had to have an emergency cesarean.
With everything that was going on, and my growing concern for my baby my other symptoms were overlooked or put down to pregnancy. I was severely anemic and taking iron tablets, which affected my digestive system and caused upset stomach. Or at least that’s what I put it down to. Looking back I can’t believe that I ignored my symptoms.
Chemo has been extremely difficult. You hear a lot about what it’s like from the doctors but how it affects people is very individual.
I had assumed, once Edward was born, that I would gradually feel better but if anything I felt worse. In the evenings I couldn’t read to our older son because I couldn’t catch my breath. I woke up several times a night in a cold sweat and I vomited, which could no longer be blamed on morning sickness!
At the hospital the A&E doctor felt my stomach where, since my son was born, I could feel a lump. I had no idea what it could be and, perhaps stupidly, I wasn’t worried. I asked him if he thought I had appendicitis. He shook his head and I think he already knew/suspected what it might be.
He sent me for a CT scan and MRI and within hours my husband was being told that I had a ‘mass’ in my intestines. They explained it to him in Portuguese and he had to break the news to me. I was admitted to hospital. The next day I had a PET scan and they explained that the cancer had spread to my liver. I had a colonoscopy two days later where they removed six polyps and examined the tumour. Because of its size and the risk of perforation of my intestines they decided to operate the next day and remove my 11cm tumor.
I recovered from surgery in Rio and three weeks later flew back to the UK to begin my chemotherapy at the Marsden.
My relationship with the medical teams in both countries has been different. My doctors in Brazil created a WhatsApp group so that we could keep in touch and I could tell them how I was doing. They were so wonderful. My surgeon, A&E doctor, GP and gastroenterologist all still regularly message me with positive thoughts and well-wishes, I don’t know what I would have done without them!
Medical professionals here in the UK have also been great. One thing about having cancer is that you spend a lot of time in hospitals, having such lovely staff really makes the fact that you’re there and having chemotherapy slightly less depressing!
You can’t measure the value of a good night sleep when recovering from treatment!
Chemo has been extremely difficult. You hear a lot about what it’s like from the doctors but how it affects people is very individual. During my first cycle of oxaliplatin I had a laryngeal spasm. It is triggered by the cold, or in my case a sip of room-temperature water. It makes you feel like you can’t breathe. I learnt my lesson and from then of have wrapped up warm and only drink hot drinks for ten days after treatment.
Having cancer has taken a toll on my family. My husband had to leave his post in Rio and we had to move back to the UK a year earlier than expected.
Setting up a home whilst having cancer and two young children has been very tough. But we are incredibly lucky to have amazing people around us. My parents help has been invaluable. I don’t know what we would have done without them. They have been wonderful babysitters and take the boys for sleepovers whenever we need. You can’t measure the value of a good night sleep when recovering from treatment!
My husband’s work allow him to work from home when I’m feeling ill, which makes a huge difference as he can look after our six month old when I don’t have the energy to hold him.
It has been a very difficult four months but with two little boys I haven’t had too much time to dwell on it. I’m just getting on with it because I have to!
But we’re leading change
Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
What are we calling for?
- Improved clinical guidance and practice on bowel cancer in younger people
- Improved identification of people with genetic conditions and access to surveillance screening
- Improved information for younger people on bowel cancer symptoms