‘I was stunned, shocked, horrified, in denial. I couldn’t speak and didn’t want to talk to anyone’
A primary school teacher has opened up about the moment she was diagnosed with leukaemia after suffering from a sore throat.
Bethan Cawley has shared her story as it was revealed that only 1% of people surveyed in the North East were able to identify all four of the most widely reported symptoms of blood cancer. They are fatigue, bruising, unusual bleeding and repeated infections.
The disease affects people of all ages and kills 5,000 people a year in the UK. Twenty-eight people are diagnosed with leukaemia every day in the UK and the overall survival rate stands at just over 50% – making it one of the most deadly forms of cancer.
A recent public survey by leukaemia charities Leukaemia UK and Leukaemia Care found that over that 40% of respondents from the region could not recognise any of the four most widely reported symptoms of the disease.
Bethan, from Roker, Sunderland, said she was told she had chronic lymphocytic leukaemia just before her 50th birthday. The 56-year-old had been suffering from a sore throat and thought she had glandular fever.
She said she visited her GP after her throat got worse and she underwent blood tests. She was initially told she had a type of hodgkin’s lymphoma before being diagnosed with chronic lymphocytic leukaemia.
Bethan said she had a “terrible sore throat” she couldn’t get rid of from April 2015. She said it got worse and she went to her GP who tried to persuade her to take some time off. However she said she didn’t feel it warranted time off.
She said: “The GP took some bloods and I presumed this was fairly normal. She then asked to see me 10 days later after a course of antibiotics. I thought she was just being thorough.”
Bethan said she returned to the doctors 10 days later where she was
met with a few anomalies in her blood results and referred to haematology.
She said: “I was a little surprised and asked why, to which she responded that she just wanted things checking out.
“I asked her if she thought I had glandular fever as I had had it as a child and I must admit that my sore throats were pretty awful; it felt like I was swallowing over glass and my glands in my neck were enlarged.
“She was non-committal, but I think that I just thought it was a glandular fever problem. The GP
was great. She said: ‘You do know your lymph nodes in your neck are quite enlarged?’ I said yes I do and it is typical of me as soon as I have a sore throat. It’s sort of my measure of, you know how well I am. I let her do the blood and I definitely didn’t take any time off work.”
Bethan said that her letter to haematology was waiting on the doorstep when she returned home that night. Her appointment was the following Friday at 11.45am and she planned to attend in her lunch break before returning to school in time for PE. She said: “I convinced
my husband that there was no need for him to come as it was just an over-zealous GP referring me to hospital; a waste of time for him coming as there was nothing wrong.
“Well, what an hour faced me! An examination by a doctor who took my history. He examined my neck and I was very aware of the lumps and bumps, but I’d had them for a while and they always popped up if I was run down.
“He asked if I had enlarged lymph nodes under my arm pits or groin. I said no but he then said he could feel something and asked if I could stay for blood tests. I said no as I had a PE lesson to teach, but he was persuasive and said they wouldn’t take long and the results would be instant. I complied and then was asked to go and see the consultant. I was very jokey and asked why, reminding him about PE!”
Bethan said on entering the new consulting room, she was faced with a sea of faces – a nurse specialist, a consultant, and an auxiliary. She said: “I was stunned, and sudden realisation dawned on me that there could be something wrong. I was examined again and asked if anyone was with me. I was scared. I was also awkward, saying I had to get back to school.”
She said she was direct and asked what they were looking for. She said: “No one would actually say but the words ‘nonhodgkin lymphoma’ sprung to mind. I asked if that was their thought, but they refused to say. The next steps were a biopsy of a lymph node, and if that showed anything, a lymph node removal, then if that showed anything, a CT scan.”
Bethan said she left the hospital in a daze and drove back to school. She said she was late for her PE lesson but stayed until the end of the day.
She said: “I was so shocked I told everyone what was going on. It was like drowning in a sea of untapped emotions. I was like a zombie and Google became my best friend and my worst enemy.”
All of the tests were carried out within a three-week period. She was at a garden centre with a friend when the phone call came, asking her to attend an appointment with ENT the next day and asking her to make sure she took someone with her to the appointment.
Bethan said: “I felt sick but kept myself jovial and positive. The next 18 hours dragged on, but my husband came with me. The consultant welcomed me and cut right to the chase. I had blood cancer, which would need chemotherapy. It was non-hodgkin lymphoma, which would need to be treated straight away.”
Bethan said her biggest concern was that her son was getting married in October and she was told she wouldn’t be well for the wedding.
She said: “I was really, really upset about that. I would be ill for my second son’s wedding, but it was curable. He had booked an appointment at haematology the next day to discuss treatment.
“I was stunned, shocked, horrified, in denial. I couldn’t speak and didn’t want to talk to anyone.”
She said she came home thinking she had non Hodgkins lymphoma and she was going to start chemotherapy straightaway. Bethan said she had 24 hours to get her head around non Hodgkins as she had an appointment before haematology the next day. She said they were asked what they understood of the diagnosis at haematology the next day.
She said: “We relayed the information given but we were then met with shock number two as we had been told incorrect information; my condition was a sub condition of non-hodgkin called chronic lymphocytic leukaemia (CLL).
“It was incurable, though treatable, and treatment wouldn’t commence until it was warranted, until I was ill enough, which could be many years.
“Our initial response was of relief that I would be well at Josh’s wedding, but the underlying question was: what had I been told? I was told it was a curable and treatable lymphoma but now I was facing an incurable leukaemia; this still confuses and upsets me.
“Everywhere I looked there were adverts for Macmillan and Cancer Research. I just didn’t want to belong to the club. I looked well and felt OK and just could not accept the diagnosis. I put on a very brave face but every time I looked in the mirror I was confused. How could I have cancer? I read booklets, used Google, read other people’s stories. I understood what was happening.”
Ten months after her diagnosis, Bethan’s blood picture and her CT scans changed dramatically. She said a lymph node swelled to a huge size in her neck and she had to have an emergency appointment at haematology. Her consultant advised her that treatment might be on the cards.
Bethan said: “Treatment was a relief, as something active was being done. Chemo wasn’t without its ups and downs and a new vocabulary came to be, neutropenia being the bane of my life! Life became small and confining but it felt positive, as after the first round my lymph nodes had gone down substantially.”
She enjoyed five years remission after treatment and returned to work. A year ago, she found a few lumps in her neck and she was monitored closely.
Bethan said she went downhill very quickly, suffering from dizziness, bruising and fatigue.
In May this year, her consultant confirmed she had relapsed. Her consultant was keen to begin treatment after she had had a routine CT scan to act as a baseline for treatment. However the radiologist found anomalies in her lungs that had to be seen by a chest specialist. Treatment was delayed for two weeks.
She said: “The chest team were again excellent and it was decided that the lung nodules were secondary and recent relapse so will be monitored throughout treatment. I am currently eight weeks into treatment with Venetoclax and Rituximab. I am unable to work throughout the treatment but I am enjoying the summer sun as well as binge watching series on Netflix!!!”
Bethan said the symptoms of leukaemia are so similar to other issues especially that of menopause in women.
She said: “It is also so easy to ignore the signs and put them down to other things, or even make excuses for them. Being aware of a whole picture can prompt people to go and seek advice.”
Blood cancer is the fifth most common cancer and third deadliest. Leukaemia UK and Leukaemia Care are collaborating on an important campaign, #Spotleukaemia, to raise awareness of the symptoms ahead of Blood Cancer Awareness
Month in September. The two charities have created an advert in which Macaw parrot ‘Henry’ makes the symptoms of leukaemia memorable. Henry uses a range of objects to create a catchy and repetitive ‘Spot Leukaemia rap.’
Zack Pemberton-whiteley, Chief Executive of Leukaemia Care, said: “To hear that less than 1% of the UK public are able to identify the four most common symptoms of leukaemia is extremely worrying.
“Early diagnosis of leukaemia can improve survival. With over 10,000 people being diagnosed every year with a leukaemia, this shows just how important it is to continue to raise awareness of the signs and symptoms and how much work needs to be done.”