Condition: Hodgkins Lymphoma
Alyson had just started University in September 2007 when she began feeling unwell. She was tired and had stomach upsets. Still feeling unwell she made a doctors appointment three months later. This is her story.
“My blood tests came back showing a high infection level, but the doctors didn’t know where it was. I spent the next year visiting the gastro clinic. I had every test the medical profession knew about – even down to swallowing a tiny camera which took pictures all the way down through my body. However, my symptoms continued to worsen and still nothing had been found. I began getting chest infections and felt increasingly tired. I was at my lowest at the end of 2008. I had no idea how I was going to carry on. Climbing the stairs left me collapsed in a heap on the floor.
“The infection levels in my blood were still increasing and the chest infections kept coming. I also became anaemic from all the blood that had been taken. I had cold after cold and began to get night sweats. I had a chest x-ray in April 2008 which showed nothing.
“A year later, I went back for another chest x-ray, in April 2009. The results showed 5 tumours – the biggest being 8cm. I had a CT scan within 2 weeks and a biopsy confirmed it was cancer. I was 29 years old.
“Despite the terrifying diagnosis, in strange way, I was relieved. I had started to believe I was somehow making it all up; imagining it. At last I knew what was wrong. I was very positive about my diagnosis, I knew I would get better. My daughter Sarah was 9 at the time and I’m a single Mum. I couldn’t die and leave her behind. I had no choice but to get better.
“I started having chemotherapy every two weeks. I responded well to it and, despite being told I’d need 8 months I only needed 3. Only 1 tumour was visible out of the 5 and a PET scan showed no cancer cells left. I had medication to control the sickness from the chemo; but however awful I felt on it, I still felt so much more well than I had before I was diagnosed so I was grateful that the treatment was working. I never really grasped the concept of how ill I really was at the time.
“I had 21 rounds of radiotherapy as well. This made me much more sick than the chemo had. My throat and neck felt burnt on the inside. I literally couldn’t eat for three weeks, not a single piece of food passed my lips. I managed a quarter of a cup of water which took me an hour. I remember being sick after drinking the water but just being grateful I had something to throw up.
“I don’t know where I’d have been without my family. Sarah stayed at my parents after my chemo sessions but I was lucky and never had to stay in overnight so I could be with her. I also stayed with them when I had been sedated during my radiotherapy so they could look after me.
“Sarah’s teacher was her rock. She enjoyed school; it was the only place where no one was sick. Mrs Bell, Sarah’s teacher, was the only stable thing in her life at that time. She’d often come home to see me being sick, doctors there, my hair falling out and people doing things for me. Mrs Bell was constant.
“Sadly, a year into my treatment, Mrs Bell was diagnosed with a molar pregnancy – a rare cancer which forms from a pregnancy. This hit Sarah hard. She remembers crying in an assembly and having to be taken out. One thing that helped her was a teddy bear I’d bought her to cuddle when I couldn’t, because I was in hospital or too unwell. Thankfully, Mrs Bell recovered and is pregnant again and all is going well.
“The Big C Centre was the most amazing sanctuary. My doctor told me that she was going to make me better and the Big C Centre was the fluffy bits around the edge – something that would heal my soul while the doctors healed my body. I certainly made the most of it! Look Good Feel Better makeover, massage (for me and my mum), children’s information books for Sarah, Welfare Advice, information library for me (I knew nothing about lymphoma before I was diagnosed), Wellbeing groups, wig clinics and head scarf sessions. They even used to set up a playstation for Sarah when I needed to just sit and stare at the wall.
“Sarah used the Big C Centre to ask the Big Cancer Questions. Questions like ‘how do we get cancer’; questions she was scared of asking. She’d talk it through with them and they’d show her leaflets and books. It helped her feel better to know the answers.
“I finally got given the all clear on 25th September 2009. I celebrate that date now every year and call it my ‘cancerversary’.
“I took a year out of university to get better. After my all clear I went back and qualified as a nurse. One of the toughest aspects of my illness, apart from the effect it had on my family, was the financial struggle I went through. My student bursary ended because I had the time out, but the benefit office still classed me as a student so I couldn’t get any benefits. Eventually, we found a loophole which meant that, because Sarah was still under 10, I could get a little income support. This also meant I could get housing benefit and council tax benefit. The thought of losing my family home on top of everything else was just devastating. Fortunately, the law has been changed since which means students can apply for all the benefits they should be entitled to if they need to take time out for sickness.
“Sadly, that wasn’t the end of the story for my family. A year later, my Mum was diagnosed with breast cancer. She started treatment in October – 2 operations and chemotherapy. At the same time my Dad started acting strangely. He started missing roads he should have turned onto, food fell off his plate when eating as well as other things – he just didn’t seem quite right. We took him to the hospital and unfortunately were told he had a brain tumour. He had his operation the same day as Mum started her chemo.
“One thing I remain thankful for is that the right equipment was available in the hospital for their treatment so they could be at the hospital together – to have to travel to Cambridge or London for one of them while the other was in Norwich would have been impossible. They even had their radiotherapy on the same day which meant one trip at a time.
“Mum got the all clear half way through Dad’s treatment. Her illness, which would normally have been terrifying on its own had been overshadowed by Dad’s. He spent a couple of months in hospital. He made it through to Christmas but died on January 27th 2012.
“Sarah and I are now busying ourselves helping Big C raise the funds to pay for others to be helped in the way we were. Sarah had her hair cut off and sold it to a charity which makes wigs for sick children – she got paid for her hair and she donated the money to Big C. I’m running a marathon (London 10K) and have recently become a champion for Big C which means I’m spending my time spreading the word, as well as raising awareness of lymphoma. Who knows, maybe one day I’ll even climb Mount Kilimanjaro. I’d do that one for my Dad, I miss him so much.”