Young people share experiences for blood cancer awareness month

Those who spoke to us about their experiences had a lot of common ground when it came to their symptoms for different types of blood cancer. Fatigue was one of the leading examples. Sophie A and Joshua were both sporty and active prior to their diagnoses. Sophie was a keen horse rider, and Joshua was a good athlete and rugby player. He explained “I started to get very out of breath during sports and then just doing day-to-day activities. My body was aching all of the time, my limbs were sore, I was exhausted and losing weight.”

Weight loss was also something that Sophie B experienced. She explained that after her diagnosis, they found that her spleen had grown to ten times its normal size, causing discomfort and lack of appetite. She went on to explain “my mum was worried that I had an eating disorder but didn’t want to voice her concerns to me. I hadn’t really noticed my weight loss as I wasn’t looking out for it.” Due to her worries about Sophie’s eating habits, Sophie’s mum, convinced her to go the doctors, “under the guise” of getting blood and hormone tests.

Chloe, Joshua and Sophie A all experienced some form of rashes/itching. While Chloe found she was just itching in general, Sophie A found a pin-prick rash and Joshua noticed “a nasty blotchy rash” which became so bad he went to the hospital for it. Other symptoms suffered between the four of them included night sweats and bruising.

Getting a diagnosis was a long process for Sophie B. Aside from the fact that her mum originally suspected she was suffering from an eating disorder, one doctor put her symptoms down to the stress caused by her GCSEs. It wasn’t until her third appointment that a doctor voiced his concern that she may have leukaemia, which was confirmed after a bone marrow biopsy two days later. Joshua explained that initially, his symptoms were not seen as serious by doctors either, and they thought it was just a bad cold. 

Sophie A’s mum Sarah, explained that in her case, the doctors initially thought that glandular fever could have been the reason her platelets were so low in her earlier blood tests. Sarah said “The doctor had booked a bone marrow aspiration as a precaution but was certain it was glandular fever. Even though she seemed liked she was getting a bit better, we still asked for them to do it. They called us in for the results and told us it was Leukaemia. The doctors said they were as shocked and surprised as we were.”

There are lots of different types and combinations of treatment for blood cancers. Sophie B explained that her cancer was very rare for her age group. She told us she was “started on Tyrosine Kinase Inhibitors. These are pills which you take orally, and they are designed to attack specific types of cancer cells and cause less damage to ordinary cells.”

Joshua experienced several different forms of treatment, primarily an intensive 20 month chemotherapy course. He also underwent a stem cell transplant and needed lots of physio to get him back on his feet following a long period lying in his hospital bed. 

Being treated during the pandemic meant that it was hard for people like Chloe to interact with people her age, even when treated on Teenage Cancer Trust wards. This is where her Youth Support Coordinator, Gemma, became so important. Chloe explained “Gemma finds out what people like and she arranges suitable activities for them. She knew that I was really into art, and she brought me bits of art and crafts to do. This helped pass the time, but also meant that I could still do something I’m passionate about.”

“Gemma also ran online sessions where we’d all be sent some arts and craft bits and we’d do it over a Zoom call while also chatting. I loved that. It helped a lot with my wellbeing and encouraged me to continue with my art.”

“Gemma also set up quizzes over Zoom. It was great to get together and have fun. It took our minds off what was going on. Gemma bringing us all together so we could support each other was the best thing anyone could have done to support me during treatment.”

As well as Teenage Cancer Trust frontline staff, the difference of having a space tailor-made and dedicated to people within in the 13-24 age group was a key component for Sophie A. Her mum Sarah said that “being on the Teenage Cancer Trust unit really helped because we could close the doors and shut out some of the melee from the main ward outside. Sophie could also sleep in when she needed to and not be disturbed, which made a huge difference when we’d had a bad night’s sleep. It felt more like a hotel room than a hospital room.”

“Sophie was able to go into the social room and spend time watching films and Gogglebox with her older sister Lucy. This was really important both because it allowed her to be a normal teenager and also because it ensured that their close bond was maintained.”

“One of Sophie’s friends came over a few times and the social space meant it was less scary for her to visit. It’s a more homely environment. She came once when Sophie was asleep, but she was able to go and watch a film with Lucy so that she could be there when Sophie woke up.”