Hi everyone my names Ang and when I was 57 years old when I was diagnosed with Large granular lymphocytic leukaemia (LGLL) in March 2013, 12 years ago. Im on a watch and wait.Bloods every 6 months.
I had no symptoms, it was found on a routine blood test, my Lymphocytes were high, I then had an appointment at the hospital in haematology, I was told my T cells were clumping, I was not told straight away that I had blood cancer so on my second appointment I said I needed to know what this ment, I couldn’t just say my T cells are clumping ?? So finally I saw a different haematologist who explained I had blood cancer called large granular lymphatic leukaemia (Large granular lymphocytic leukaemia (LGLL)) & that it was slow growing & I could have it for years before treatment ,if it ever needs treatment & to go away a get on with my life.
Obviously it was a great shock when you are told you have cancer & I can remember coming out of this appointment and crying it was like someone had died.
At the time I only told close family & work friends, obviously my husband who was with me & is very supportive. Over time I have told more people but not my grandchildren, I don’t want to worry them & some were not born when I was first diagnosed.
It has taken some time for me to be confident with this diagnosis and with support from my husband,Family, friends & my Gp at the time.
I have lived my life as best as I can, I can get stressed before my 6 monthly blood test & I usually like to have blood test before going on holiday, just to reassure me I’m going to be well while I’m away.
I hope anyone who has just been diagnosed with Large granular lymphocytic leukaemia (LGLL) can see you can be well for a long time with this type of cancer.
Hi @Ang and a big welcome to the forum.
I love posts like this and I’m really glad that you told your story.
It’s great that people can see how far you’ve come and how you’ve lived well with your diagnosis.
It also shows that those anxieties we have before appointments are so common.
Please keep posting. I look forward to learning more about you
Thank you for your reply & welcoming me to the forum.
I don’t want you to think that everything has been positive with this diagnosis from time to time I have got very anxious & worry when I’m I going to need treatment.
just lately I have become fixated on my health and quite stressed that at any time I’m going to need treatment.
I have been getting pins and needles in my legs & sometimes my arms I’m not sure if this is stress or Large granular lymphocytic leukaemia (LGLL), I have had this symptom before & it has gone away but it’s just staying too long this time.
My doctors think it most probably stress and my bloods are stable. But It is effecting my mental health now.
Welcome to our forum and thank you for sharing your story with us.
Living with blood cancer is challenging and its understandable that you get anxious around appointments and worry about needing treatment. This is completely normal. I am sorry to hear about your pins and needles, this sounds very distressing for you. Do you have a Clinical Nurse Specialist that you could talk to about how your symptoms are affecting your mental health? They might be able to refer you for some extra support within the hospital?
In case it can be useful for you, we have a webpage on small things we can do to support our wellbeing during challenging times. It talks through where people can access further support like psychological therapies etc - Blood cancer: mind and emotions | Blood Cancer UK
If it would be helpful to talk things through or we can help or support you in any way. Please do not hesitant to contact our haematology nursing support line on 0808 2080 888. We would be very happy to talk to you.
Take care and please keep posting.
Fiona (support services nurse)
I don’t have a clinical nurse specialist,
when I was diagnosed I was discharged from haematology and just seen by my Gp every 6 months.
I have been seeing my doctor who has done blood test for vitamin deficiency, I’m not sure if they are going to contact the haematology department. I need to contact my doctor.
I have had a talk with talking therapy and I am going to try this first.
Other wise I will contact the number you have given.
