Hi I was diagnosed last year with LGL Leukaemia after 2 years of bloods they finally found out what was wrong with me, I was so tired, my bones hurt including really bad hip and leg pain, then my lymph nodes in my neck appeared, as my blood work was coming back raised they kept saying retest in 3 months they won’t stay up, it became really frustrating as I could clearly see that something wasn’t right, when I went to my final appointment at the doctors I requested that I see haematology and she replied “they won’t see you”, but they did and I was diagnosed.
When I received the diagnosis, I feel like I haven’t been told much and it was very much down played down but my anxiety is on fire, there is lack of information and I don’t know what to expect, I’m still tired and ach all over but am being told my blood work is ok at the moment so am on watch and wait, I’m 44 with with kids and all I keep thinking is how long do I have, it’s my understanding that this will not kill me but a infection could. Please if anyone knows any advice about this disease get in touch.
Hi @Bailey2024 welcome to our forum.
What I will do is attach the Blood Cancer UK information on Large granular lymphocytic leukaemia (LGLL)
Large granular lymphocytic leukaemia (LGLL) | Blood Cancer UK
Active monitoring (watch and wait) | Blood Cancer UK
I have Chronic lymphocytic leukaemia (CLL) but I definitely remember not being told much apart from the fact that I was on watch and wait (I now prefer to call it active monitoring) it made it very difficult to be able to explain to family, friends and work what I did not understand myself.
I think it is really natural to feel as if ‘your anxiety is on fire’ I was in shock for ages.
I had entered a world of medical speak which I still haven’t mastered 21 yrs later.
I was 53yrs old when diagnosed and have been on active monitoring ever since and immediately came home and wrote my will and funeral music.
I hope others will share their experiences.
Perhaps read the information I have sent you and you can ring the Blood Cancer UK support line on 0808 2080 888 if you need to.
I find writing down each of my symptoms, their severity and impact on my life, then my fears, questions and practicalities are a good basis for talking to my specialist nurse or medical team. Over the years I have learnt to be pleasantly assertive and not leaving the consulting room till I have answers.
Perhaps be very kind to yourself and really look after yourself and keep posting on here how you are doing.
Thanks for getting in touch and sorry to hear that you are going through the same as me.
My haematology doctor originally thought I had Chronic lymphocytic leukaemia (CLL) but was later diagnosed with Large granular lymphocytic leukaemia (LGLL).
At first it was a big shock and all I did was cry, then wanted to do memory boxes for the kids ( I have 5 ) to make sure everything was in place if something may happen to me. I am now a bit frustrated at the lack of information and the anxiety which normally happens when I wake up, my concentration is not great and I get tired a lot. I have now been discharged from haematology and only have once a year blood work with the doctor, which I’m not comfortable with the doctor looking at my results as do they even understand what they are looking for as it took them so long to send me to where I needed to be, my RBC were raised this time but they say that’s fine but they they were fine last time.
I also didn’t get to speak to any of the McMillan nurses at the hospital, the doctor just printed me an information leaflet.
I hope everything goes well with your journey.
Hi @Bailey2024 I have also been referred back to my GP to monitor my 6 mthly bloods with the proviso that if there is anything amiss I will be fast tracked back to haematology.
Firstly I felt abandoned, bereft and not important enough etc. But now I am quite happy as my GP surgery is nearer than my hospital so it is more convenient.
Unfortunately it seems because of their generic symptoms sometimes blood cancers are slow to be diagnosed.
I get copies of my results and monitor them myself and yes, they can fluctuate for a number of reasons.
I have learnt to manage my symptoms and my diagnosis has given me the opportunity to reflect on my life and what I want out of it and with whom. I now think that the best things in life are free and priceless like good family and friends, music, nature etc.
Perhaps just give yourself time and keep posting.
Hi @Bailey2024,
Welcome to our forum. I am sorry to hear about your diagnosis and the lack of support you have received. It sounds like a really difficult and overwhelming time for you and it is understandable that you are feeling frustrated and anxious. I have enclosed some information here which your might find helpful Blood Cancer UK Mind and Emotions
I can see the lovely @erica has already given you some great advice and information, but if it would be helpful, our specialist haematology support nurses would be very happy to talk with you and support you in any way we can on 0808 2080 888 Blood Cancer UK Nurse Support Line I have enclosed a link here with our opening times and other ways to get in touch. We can talk through your diagnosis and provide you with information and support.
Look after yourself and take care
Fiona (support services nurse)
Hello Bailey.
I’m so sorry to learn of your diagnosis, my heart goes out to you and your family.
I’m Mike - and I, much like Erica, was diagnosed with Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)). I got my diagnosis on the 10th of April this year, so I feel I can relate to your emotional state somewhat.
I used to be a people manager for a high street bank and used to train people and would often use the acronym S.A.R.A. standing for Shock Anger Rejection Acceptance, when something happens we didn’t expect or plan for, and I can assure you at times I feel all four or any combination you can imagine, and i imagine you have too.
If I can be of any support, simply as some one going through a not dissimilar situation, then I would be only too happy to stay in touch via this forum if you feel that it may help you.
I’ve found - staying occupied, but not too busy to bring on fatigue, has really helped me. One of the things I do is visit this forum, for support, and if I can support some one else in some way, then even better.
As Erica has already said, be kind to you, and really look after yourself.
Take care
Mike.