Belle is our first born and when you are a new mum you are just finding your feet with parenting. It was her 2ndbirthday and we had a party for her in my mother-in-law’s garden with a bouncy castle and friends round. She wasn’t into it; she kept taking herself off and wandering around the garden, she wasn’t interested in her lunch and I thought that she was teething. She was grizzly and clingy and quiet, that’s all, nothing significant, so I gave her some Calpol.
A few days later she was still quiet, cuddly and not very active; my brother picked her up and said,” feel her stomach, it’s as hard as a drum” and something about that statement really resonated with me and I couldn’t bring myself to touch her stomach. It was the fear that something was not right. I thought she was constipated and went to get some lactulose from the chemist, she went but nothing much and nothing changed. It was Sunday and I thought I didn’t want to wait for the doctors’ surgery to open, so we went to A&E and I was worried they would think we were being a bit over dramatic. It was the hottest May day, around 36 degrees and there was a 6-hour waiting time. Thankfully, they saw us a bit quicker and when they did see her, they said she has a very high temperature and they wondered whether she had a chest infection or pneumonia. They kept us in overnight and they took an x-ray, blood and tried to get urine. The following morning a paediatric oncologist came to see us.
He said he thought “there was something growing there that shouldn’t be”; what he was saying didn’t sink in. I just remember rocking in the corner and pretending I wasn’t there, but it felt like all the eyes in the room were on me and I didn’t know how to react. So, we were taken to Southampton children’s hospital in an ambulance with my husband following on behind in the car. I just held her to my chest on the trolley, silently crying all the way there. I remember the journey really vividly. After your child is diagnosed with cancer, no-one looks at you the same again. When she started treatment, her hair fell out and I got incredibly angry; this was our only child – it’s not fair. I knew people with 4 or 5 perfectly healthy children and I felt really cheated for a long time. I felt very angry, even towards the doctors who would come in and tell us more bad news. The doctors can’t tell you anything positive because they don’t really know what is going to happen. They can recommend treatments, but Belle’s wasn’t a straightforward case she had a very aggressive form of neuroblastoma and it was big from one side of her body to the other and it had pushed up her internal organs. We don’t know if she was born with it or it grew really quickly because it is such an aggressive cancer and I felt incredibly guilty that I didn’t know it was in there. It knocked my confidence as a mother, and I felt that I had failed her for a long time. I became a very different person, very angry, quite bitter and hostile. I must have been a nightmare to live with.
We lived in one room on Piam Brownward in Southampton hospital for 16 months, because her treatment was so aggressive, we had barely a week in-between chemotherapy doses. She had chemotherapy, radiotherapy, surgery for 9 hours and immunotherapy, which was a brand-new treatment never been used before in Southampton. She was the 5thperson in the whole country to have it.
She had so many side effects, she hadn’t really recovered from one dose before she started the next one. And you have to keep going, stick to the schedule to give it its best chance of working.
You live your life from one appointment to the next, that became normality for such a long time. One spell during a high dose chemotherapy, which the nurses had nicked-named “gut rot”, Belle vomited up her throat lining – it came out like a sausage skin – that flashed back for a long time after.
You get to know other families on the ward, sadly not all of them make it. One night in the middle in the night, one child was coughing so much. She choked and she didn’t make it. It was horrific. Our lives became a goldfish bowl, just me or my husband sleeping in the hospital room with Belle.
Despite the hideousness of it, the ward was a really happy place to be and the nurses were really amazing. They used to dress up and clown around making the children laugh whilst hooking up their chemo bags. Belle would just bounce back from everything. After her 9-hour treatment, everything they removed was dead. The consultant was really pleased and positive that it was all dead and that gave us our first bit of hope to cling to.
When she got the all clear she was 3 ½ and we had 3 monthly check-ups for a year, 6 monthly check-ups for 2 years then annual check-ups, and now we have just moved onto 18 monthly check ups. It’s very, very hard to leave the hospital when you get the all clear; your safety net has disappeared and your confidence as a parent to spot something wrong has been knocked so much, it’s very hard to go it alone. It took a very long time to change my mindset from ‘she is OK now, make the most of it’, to ‘she is going to be OK’. As things started to get a bit more normal I became more on edge; I had accepted she was going to be OK after the all clear, but I started worrying that it was my turn next and convinced myself that it was only a matter of time before I would get it and that every ache or pain I had was cancer; it was anxiety and it really hit me hard.
When Belle got the all clear, we moved to a new house, found out I was pregnant, and it was all systems go for a while, but once things slowed down, I really struggled with bouts of anxiety again. I wasn’t really enjoying my little family like I should be and got very low; I had Cognitive behavioural therapyand that really helped. I am still on low dose medication for anxiety now, it has affected me for life but has made me a hell of a lot stronger. I used to be very laid back but where my kids are concerned, I won’t stand for anything hurting them, I am fiercely protective of them and I am not the same person as I was before.