A woman from the north who was suffering from symptoms of tiredness and ongoing headaches ended up being diagnosed with incurable blood cancer.
Irene Grey, 38, was diagnosed back in February 2019 with JAK2 positive Essential Thrombocythemia (JAK2 ET).
She has since described how her symptoms began when she was in her late 20s, but it took years for doctors to make the diagnosis.
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The Co Antrim woman said her symptoms started when she was in her late 20s, but she didn't receive her diagnosis until she was 35.
Irene, who was 35 when she found out, told Be: "I spent years asking myself 'What’s wrong with me, why can I not do better?' I couldn’t understand why I felt so tired all the time, I would constantly ask myself, “Why do I feel this tired, why am I sweating so much at night, why am I getting these headaches?'
"At the time I put it down to the stress of undergoing fertility treatment, being busy at work. The thought that I might have blood cancer never occurred to me."
She went on to say: "I had an irregular heartbeat from childhood so a lot of the time I put it down to that too. It was really in 2018 when I had at that time started suffering from what I thought was IBS. Then I went to the GP and they thought it was coeliac disease and then it was only some months later that I went back and by this stage, I had lost a bit more weight.
"Another GP looked at my bloods and realised my platelet count had been outside of normal range for quite some time. Back as far as 2014 it had been fluctuating."
Irene was quickly referred to a haematologist in October 2018 and from there was diagnosed with JAK2 positive Essential Thrombocythemia in February 2019.
She said: "My surgeon described it as my bone marrow being like a light switch - always in the on position which means I’m making platelets constantly. This means I’m at much higher risk of blood clots and developing other blood cancers such as leukaemia."
She said her diagnosis was a "huge shock,” and that “It's a day you don't forget... With this, a big part of it is the mental health side and accepting 'this is it' and you have to manage it over a longer period of time."
Irene added: "My cancer isn’t like other cancers in that it can be taken away and you can be cured and a lifetime diagnosis like this in your 30s is obviously a shock. But I’m in a routine now where I have blood tests every six to eight weeks and am on anti-platelet medication. I’ve had a conversation with my team about chemotherapy drugs should my condition advance but I’m keen to hold off on that for as long as possible.
"I’m still working and determined to carry on living life as normally as possible. Blood Cancer UK has been such a great support to me, especially with that really practical help and providing information, I want to share my story so I can tell people, that yes, a blood cancer diagnosis is scary but you have to, and must, find a way to keep on living."
She also told how she suffered "major complications" after a bone marrow biopsy. After this, her father bought her a Blacknose sheep.
"They are quite rare and have been a big part of my mental health journey with this."
She said: "Blood Cancer UK is making huge progress advancing treatments, especially when diagnosed early. It is a cause close to our heart and last year we raised £1000 for them, something we hope to repeat this autumn."
Nearly half of NI adults cannot name a single symptom of blood cancer despite it being the third biggest cancer killer in the UK, according to new research released today (Thursday 1 September) by Blood Cancer UK.
When people were asked to spontaneously list what they thought were common signs of blood cancer, the charity’s survey found almost half (48%) said they did not know of any.
Over one in four (28%) said it would be somewhat or extremely unlikely they would consult a GP if they had any of the main symptoms associated with the disease - fatigue, bruising, swollen lymph nodes, and night sweats.
When asked to list up to 10 types of cancers they were aware of, blood cancer and leukaemia were the 14th and 10th most commonly listed while lymphoma came 20th.
Kate Keightley, head of support services at Blood Cancer UK, said: "Blood cancer is the fifth most common type of cancer in the UK so it’s extremely concerning to continue to see such low public awareness of the signs.
"Sadly, symptoms such as night sweats and unexplained tiredness, weight loss, and bruising can sometimes be dismissed or downplayed, with devastating results. We fear many people might also be confused breathlessness, fever, and tiredness with Covid-19 and cases are being left undiagnosed.
"At the moment, we know that too many people are being diagnosed late, which often reduces the chance of survival, so it is so vital people get symptoms checked out as soon as possible.
"If you have symptoms that cannot be explained and are persistent, you should urgently make an appointment with your GP. While it is unlikely to be anything serious, it’s so important to get checked out."
Blood Cancer UK provides information and support for anyone affected by blood cancer. To speak to a member of its trained blood cancer support team in confidence, call free on 0808 2080 888.
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