Recently diagnosed with LGL Leukaemia

Hi I am new to this forum as recently diagnosed in April this year with large granular lymphatic leukaemia, after 12 months of tests including blood tests every 2 months, ct scan and bone marrow biopsy. I was finally diagnosed with LGL leukaemia this April.
It’s been a very stressful twelve months as well as dealing with stresses of covid as they were not sure if CLL and then after biopsy in March decided LGL , which I have found out since is very rare.
Fortunately I do not need any treatment at the moment I’m on a watch and wait which is also stressful and hard to come to terms with.
I feel because I’m not on treatment at the moment and on a watch and wait I have not had much support from those around me as people say I look well but I feel increased fatigue and suffer with sinusitis frequently and I also contracted severe covid earlier this year which had left me with long covid and was off work for 3 months due to it so long covid adds to the fatigue. Due to blood tests they discovered I had low on B12 and ferritin levels in April so I take prescribed medication for both.
I am due to go back to see my consultant in June for more blood tests snd see how I am getting on.
They have been very supportive and my specialist nurse is always on the other end of the phone if I need advice but I’m struggling mentally to come to terms with diagnosis as I know how exhausted and ill I can feel but some people around me just say you can’t be that bad if not on any treatment and I’ve even been asked is it actually cancer? It’s added to my stress having to deal with these comments and feel I have to justify myself when I am still trying to get my head around it all. Just wondering has anyone else felt this?

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@Liz2 Hi and welcome to the forum! I’ve also T-LGL (diagnosed in Sept 2019) but because my neutrophil count was at zero went straight to medication. Yes, LGL is rare but there is a group of us all over the world on Facebook, which has been a real blessing to ask questions from “veterans”.
I’m glad to hear that your medical team is supportive! And really sad to hear that people around you haven’t been as supportive. I have found it difficult too to get people to understand that although I look okay even well, I’m not necessarily okay, let alone well. Fighting infections is the hardest thing for us and being on ongoing antibiotics etc is taking its toll. Fatigue is something I am still trying to get used to, and learning which things make me more fatigue (stress being the main). - I have had to say some people that it is chronic leukaemia, something that will be with me always whether needed treatment or not. The word leukaemia has worked for some but others just can’t believe that there’s nothing wrong with me if I still work and don’t look ill.
Covid has been the time that I actually was forced to accept my diagnoses, but had wonderful help from Blood Cancer support team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Leukaemia Care has a good information book about LGL Information Booklets | Leukaemia Care
and this forum is good place to get support as well!
Stay well,
Maria

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Hi @Liz2, it’s sound like you’re going through a very tough time emotionally, mentally and physically and understandably so given your diagnosis. Many people struggle with the watch and wait aspect of their cancer journey and I’m sure the lovely forum members will be able to share their experience and ways they managed to cope. It’s also really reassuring to know you have a great treatment team being monitored regularly and supportive specialist nurse you can turn to for advice and information when needed. As you mentioned it can be so difficult for friends and family to understand what you are going through when you look well from the outside but inside it’s a different story which is one of the many challenges people face with it being a hidden cancer, it’s not obvious as the cancer isn’t necessarily visible to people. Please do take a look our webpage on Fatigue which may be helpful here: Blood cancer and fatigue | Blood Cancer UK. As always the support team are here for you if you would like to talk through what you are feeling and going through, here are all the ways you can contact us: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer.

Best Wishes
Bav

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Hi @Liz2, I would also really like to welcome you to our forum, I am so glad that you have found us.
It is difficult to follow @MoMo and @Bav.BloodCancerUK without repeating their words.
I really felt the anxiety, stress and fear that came out in your post and I immediately remember the similar feelings I had 17 yrs ago when I was diagnosed with CLL, I can feel them in my stomach. You have also had Covid and still have the after effects to deal with.
I have always been on watch and wait (or active monitoring) since diagnosis.
My pet hate is people saying ‘oh, you look so well’ when I am feeling fatigued and really struggling.
I found it very difficult to explain to others what I did not understand myself.
My logic was that you get something wrong with you, are treated and life goes back to ‘normal’.
I have learnt a lot about myself over the years and I now manage my fatigue and other symptoms.
Since diagnosis I do not deal with what personally stresses me well, it is all too much, and it brings on my fatigue. My fatigue can come on immediately or up to 48hrs after I have overdone it emotionally, physically or practically.
I am so glad that you have a supportive medical team, I find the specialist nurses are an especially useful point of contact.
Personally I actually had some counselling after I was diagnosed and found it very helpful.
I would say that you and your body have been through a lot medically, had a tremendous shock and amount of information to take in, be kind to yourself, treat yourself and give yourself time.
We all know exactly what you are going through and you are trying to learn to live with the symptoms that led to your diagnosis. You are currently dealing with fatigue from your diagnosis and Covid, that must be really debilitating.
I have given up trying to explain to some people.
We are here to support each other and you have the support line contact and please Keep posting as I would like to hear more from you and how you are.

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Hi @Liz2 I can’t begin to imagine how it feels to have that sort of uncertainty at the same time as having things which affect your quality of life. Others have given you sound advice but I’m glad you found the forum and it will be good to hear how you are getting on from time to time if you feel able to share. Hope things are good with you.

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