Charlotte C's story

Learning to start again

“I found a lump on my arm in October 2007,” explains Charlotte. “I had a biopsy done on the lump and two weeks later I was in hospital. I was diagnosed with Acute Lymphoblastic Lymphoma before Christmas and started chemotherapy straight away. The treatment made me really ill. I had bad diarrhoea, lost a stone in weight, and developed a chest infection.

“After my third course of chemo I had a serious reaction to the treatment. I couldn’t walk, talk or even move my arm. It was horrible. I couldn’t speak to my family or any of the nurses. I just lay on my bed cut off from everything around me. The doctors thought I must be in a lot of pain so they gave me morphine. I wasn’t feeling any pain, but I had no way to tell them. In the end the paralysis went away and I had to learn to walk and talk again. The staff at the hospital were great, the nurses and my mum helped me to get used to using my hands again by working play dough.

“My mum and I have always been close but since my diagnosis we’ve become really close. Since the paralysis she’s helped me get back on my feet, and now I’m learning to drive and dance again and we go to the gym together.”

“When Charlotte looks in the mirror she doesn’t see herself anymore,” explains her mum. “She just sees the wig and the weight she has gained from being on steroids. She’s currently on her fourth course of chemotherapy. The previous course did not go well, I remember clearly what happened. We’d been out shopping the day before and Charlotte was trying on her new clothes the next morning. She was tired so she decided to take a quick nap. The next thing I remember she called me from her bedroom to say she couldn’t move her arm. In the space of four hours her entire nervous system had shut down. She couldn’t speak or swallow. I rushed round to my neighbour’s house and we drove her to the hospital. She was given an MRI head scan straight away. The doctors couldn’t understand how her body had shut down so quickly. Apparently this type of paralysis is a very rare side affect of the drugs she was on — only one in 100 people are affected.

“We spent the next four weeks in the hospital with her. She couldn’t rise from the bed, use the bathroom or feed herself so I was with her a lot of the time. I feel strongly that as parents we should get involved in the care of our children. The nurses are really busy and there are certain things you can do for your child that will make them happy. I think Charlotte was helped by the fact that she knew someone she loved and trusted was helping to care for her.

“Our CLIC Sargent Youth Social Worker has also been a tremendous help to us. When Charlotte first became ill she helped us fill out the forms we needed to get disability allowance. I was so busy I just didn’t have time to do lots of forms, and this help allowed me to give more time to Charlotte. I felt I could ask our CLIC Sargent Youth Social Worker anything, nothing was too much trouble and she always got back to me straight away.

“The care grants we’ve received from CLIC Sargent have gone into an account for Charlotte. I want her to have her independence and to be able to use the money for things she needs, so she doesn’t need to come and ask me each time. Charlotte was always someone who liked to look good. Everything she wears has to be coordinated and she’s beginning to enjoy spending time on her appearance again.

“I arranged for a personal shopper at Debenhams to help us choose outfits for a Christian Dior fashion show CLIC Sargent have arranged for us to attend. She’s so positive about life and really enjoys making the most of these events. Not that long ago we even got to meet Paris Hilton. Cancer is a bad thing but good things can come out it.

“Since she’s been back home I’ve been helping her to get her fitness levels up again. We go to the gym every day and Charlotte has her own personal trainer who works with her to develop a fitness plan she can follow. The last thing I wanted was to see her stuck at home getting depressed, so I’ve been there for her giving her a gentle push when she needed it.

“Having cancer, and all the problems she’s experienced, has totally changed Charlotte’s outlook on life. We’ve realised nothing is predictable anymore, you don’t know the direction the cancer will take and you’ve got to take one day at a time. I just focus on trying to keep her positive, eating healthily and keeping fit.

“Before she was ill Charlotte was studying music production, she can’t study now but we’ll see how things go in the next year. She also loves dancing and was upset when she couldn’t do it. Now, after she’s had a few more weeks to work out, she’s slowly beginning to dance again. It all takes time and she’s very determined, but Charlotte’s the one pushing herself on. Each day is very tough and she still finds it hard to go out. Each course of treatment requires enormous amounts of strength. It’s difficult when you see all your friends around you moving on — going to college, going out etc.

“I think the worst part of everything she’s been through has been not being able to speak and communicate with people; she’s such a friendly person. Now, when she speaks, she’s very black and white about what she says. She’s still the same Charlotte; things just take a bit longer to do.”