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Providing support to anyone affected by blood cancer
For the last 3 years I have been struggling to control my hot flushes and mood swings. I was convinced I was starting the menopause early as there is a family history. Blood tests confirmed that I was peri-menopausal and I was told that until I had not had a period for 12 months, I wasn’t going to be able to have hormone replacement therapy (HRT).
In January 2016, after suffering from four months of hot sweats, moods swings and constant tiredness I visited my GP. I told her how I was feeling and that I hadn’t had a period for over 12 months. She requested some blood tests and asked me to come back and see her in two weeks. The tests confirmed I had started the menopause, however, she commented that my platelet count was raised, so she wanted to repeat the test. Another follow up appointment confirmed that they had dropped slightly, but she commented they had actually been raised for what they thought could be three years. I came away from there with my HRT prescription, but she then called me at home to say she wanted to do another blood test to check my clotting before I started using them.
When I went back a week later, my blood tests had shown a slightly raised clotting factor and the GP wanted to refer me to a haematologist. I was referred on the 14th February. I came away feeling devastated but knew the risks so I respected her judgement. After a mammoth 16 week wait, I was finally seen at the QE2 Hospital in Welwyn Garden City in May. The poor consultant got the wrath of my frustration regarding the time it had taken to see her, but particularly when she told me I needed to have more blood tests done (as I’d already had a lot of tests repeated). She told me they would take up to four weeks for the results as she was looking for specific results from very specific tests.
That four weeks was hell but, when I came back to see her on 22nd June, my GP was smiling. She told me that she hadn’t expected to find anything out but she had definitive results from the blood tests.
I was diagnosed with essential thrombocythaemia (ET for short) with JAK2 positive mutation. I had absolutely no idea what the condition was, but she gave me a very helpful booklet from Leukaemia CARE. She explained that my body was producing too many platelets. I was completely stumped by this condition and was struggling to take in what she was saying. Hearing the words cancer and bone marrow biopsies filled me with fear, but she was quick to reassure me that my present my condition was treatable with aspirin daily and those were the worst case scenarios if my platelet count rose to over 900! She also gave me a Nurse Specialist’s number and explained that they would be in touch to support me. It was agreed that she would see me again in three months for my first review, but that I would be under haematology for life now. Did she really mention the words blood cancer? I carried on with my day including picking up my husband from the garage and attending a second job interview shortly afterwards. I explained what she had said to my husband but I don’t think it was really sinking in with either of us. The following day when everybody had left for school and work I sat down to read my booklet which was really useful for me. I decided to give Leukaemia CARE a call on the free CARE Line.
I spoke to Nickey – who has been my guardian angel. Her first question to me was ‘How do you feel?’ I told Nickey about the relief I felt to finally have a diagnosis which could actually explain why I’d been feeling so rubbish for so long. What struck me was that Nickey didn’t rush me off the phone, I think I spoke to her for over an hour. She was very sympathetic, gave me advice and explained about the charity and that I could speak to someone on the CARE Line 24/7.
Talking to a complete stranger really helped me to come to terms with things and begin to feel at ease. I actually felt like Nickey was my friend and that we’d known each other for a very long time. Although I’d told some of my family about my diagnosis, I decided I wasn’t going to tell my elderly mum as I didn’t want to worry her as her health had recently deteriorated, this was something that Nickey understood.
It was nice to talk to somebody who understood about the condition. She told me she would send me some more information about the charity. It was then that Nickey also told me about the fantastic St Alban’s haematology support group. It turned out that the support group actually had a meeting on the following evening. I told her I would look at their Facebook page and get in touch with the organiser.
Thanks to Nickey, I have now attended three meetings at the St Albans support group and it’s very reassuring to meet other people with different conditions but essentially, we all have a common link. I think I am the youngest member there but, listening to their stories and seeing how well the other members look, it fills me with inspiration to fight this condition.
It was also lovely to meet Nickey in person in August at a support group meeting. Her smiling face just showed her passion and love for the job she does and it was lovely to put a face to the voice at the end of the phone.
Since being diagnosed, I started a new job in August and have managed to undertake and fully organise an office move within four weeks! This was a mammoth challenge but something I am proud to have done. My symptoms have increased and I struggle to sleep at night for more than five hours, so I’m taking some additional medication.
However, I know that I can always call Leukaemia CARE for advice or even just a chat. I’d urge anyone else to do the same, there’s no need to feel you are on your own.