Hello there. I am recently diagnosed with Hairy Cell Leukaemia and received an email telling me I was eligible for antibody/ anti viral treatment if tested positive. Felt ill last weekend and did lateral flow tests on day 1,2 and 3. Visited Gp as a precaution and they tested my bloods. Neutrophils found to be just above critical so sent to hospital. A pre ward PCR test found I was positive. Weirdly the hospital team are unable to inform as to how to access the treatments and what they are so they discharged me back into the community. I called 111 who weren’t much help. I got called by the out of hours GP and he told me to contact 119. They said they couldn’t help. Called my specialist team in the Haematology dept at hospital. They had no idea. GP was shut due to Bank Holiday.
Nobody knew what to do. The hospital hadn’t released my PCR test. As soon as they did this some 12 hours later the process kicked in. Hours later I was contacted by the service and told I may not be eligible as I wasn’t having treatment. This really worried me. Eventually a lovely doctor called me and said I was eligible but I wouldn’t get the treatment until the next day which was the cut off point for treatment and who knows, it may have been too late.
Now had the treatment which was administered by a lovely, knowledgeable healthcare team
Hi @Margo, great that you have found us, what a time you have had chasing everyone and getting pushed from pillar to post when you are obviously not feeling well.
I have to say you have done absolutely brilliantly.
I am glad you have a lovely, knowledgeable healthcare team.
You say you were recently diagnosed with HCL so you must still be in shock from that diagnosis.
I expect many of us can remember when they were diagnosed and that fear, anxiety, racing thoughts etc.
Look after yourself and be kind to yourself and I look forward to hearing more about you.
It was a community nurse who came and gave me my treatment. My hospital medical team I have to say were completely unhelpful.
Yes still reeling from the shock of the diagnosis which came to light when I had Covid last year pre vaccine and anti virals. I was so ill that I have been pretty scared this time.
Oh @Margo I bet your previous experience made all those scary feelings come racing back and that you felt pretty scared this time.
Take extra special care of yourself and please use this forum to say how it really is for you and the Blood Cancer UK support line is also there for you.
Hello @Margo, I am glad you finally received the treatment but what a challenging process you had to tolerate? May I ask how you are feeling now? Take care Gemma
I feel your frustration at having to chase people to get treatment which should be given to you automatically> often feel like I am in charge of organising my own treatment and get exasperated when people make it more difficult than it needs to be. Hoping for a good outcome for you.