Hi, was trying to find a tread about LGLL but couldn’t so thought I would start one myself. I am only recently diagnosed (7 months ago) and really would love to hear from others with LGLL.
Hi @MoMo, I hope you find others with LGLL. Otherwise I hope others will share the same, fears, questions, thoughts, feelings and practicalities especially during Covid-19. Anyway I will be interested to know what it is like being you.
@MoMo thank you very much for starting this topic. How are things for you at the moment? I hope others with LGLL also find this thread as it can be so helpful to chat things through with others going through similar things.
@Erica @Alice_BloodCancerUK thank you. It really would be lovely to find others with the LGLL, but I know it is one of those rare blood cancers. Of course I’m happy to follow treads about other blood cancers, we are in the same journey after all.
It has been a hard 7 months to adjust to new life. I’m battling with the consultant how doesn’t seem to take this seriously (he says this is just an abnormality in my white blood cell). He even said at the beginning of the Covid that I wouldn’t get it so I don’t have to worry or make any adjustment in my line of work (working with people, both one to one and groups)!
The lockdown has affected my mental health, luckily I have a lovely cancer counsellor who calls once a week, and of course family and friends, who keep me going. I just miss going out and having a simple walk. I have a garden but it’s not same as going for a good brisk walk. I’m glad I found this forum. MoMox
Hi @MoMo, yes, it does sound as if it has been a hard 7 months for you. I think a brisk walk would be wonderful, but until then we will all support each other through Covid-19 on this forum.
That sounds really difficult @MoMo to not feel like your consultant takes your condition seriously. Have you got other people within your healthcare team you find it easier to talk to such as a clinical nurse specialist?
Have your workplace been supportive so far?
I’m so sorry that the current circumstances have affected your mental health. It’s totally understandable though. It’s good to hear you have a counsellor that you find helpful and the support from family and friends too. Really glad you found this forum and I hope you’re finding it a source of support for you.
@Alice_BloodCancerUK My appointed nurse left shortly after she was appointed to me. I still have a support worker but as I am seen in the different hospital from the main hema department, I don’t see her or if calling have to leave a message to her to call back. Problem is that she thinks my consultant is wonderful when I complained to her that he speaks alien language I don’t understand… so I have now completely caught off from the chance meetings with her. My workplace has been supportive, but not quite sure how much they can support me if I don’t have directives from my consultant, especially towards the end of June… thinking that is and has been really stressful. Trying not to think this too much as it’s just upsets me.
Hi, @MoMo, it sounds a really stressful time for you. Yes, me and my mind are not a good combination either, I am especially aware that my emotions are all over this place since Covid-19 started. Some types of diversion help a bit, for me music helps, reading and exercise in the flat. I know we will soon be entering June, but a lot can happen in a month.
During times of stress don’t forget you can contact the wonderful Blood cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at firstname.lastname@example.org and we are all here for you on this forum. Please take care and keep posting how you are.
Oh @MoMo that does sound really hard. May I ask how you’ve been doing these past couple of weeks? Please do feel free to give us a call on our support line if you want to chat things through.
I’m hanging here. Have been really struggling mentally easily tearful, and my medication doesn’t help that either. I went for a walk yesterday morning as I just needed to get out, but was forced cut it short as too many people on the road who know me… I might try late evening walk today. My cancer counsellor calls once a week and that helps.
I’m so sorry to hear you’ve been struggling @MoMo. It’s good to hear your cancer counsellor helps. Are your clinical team or GP are aware of how you’re feeling? I imagine it’s a very overwhelming time.
In case it helps in any small way, we have a page on mind and emotions in the living well section of our website, here, in case you ever want to read through.
Do feel free to keep posting @MoMo and as always, our support line is here if you want to chat things through.
Thanks so much for having the courage to tell us how you are really feeling. It must be so difficult for you isolating. It’s been a long while now. Yes, it can actually be a disadvantage having so many people in your road wanting to stop and have a chat. Please let us know how your plan B goes of having a walk in the evening today.
We are all here to really support each other through theses times and don’t forget that you can always contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday or via email at email@example.com. Please keep posting.
Thanks @Erica my walk last night was a very short only 10 mins, and saw some people from the distance so no problems. It did good to my head, but did realise how much my stamina has gone down. I easily walked many kilometres a day and really miss that. @Alice_BloodCancerUK Unfortunately I don’t have a good relationship with my consultant and I don’t have clinical team other than support worker, who hasn’t called since the lockdown started. I’m not treated in the main Haematology Department but in the different hospital’s outpatients. My relationship with the GP isn’t overtly good either, and I never can tell who is going to call back, so I haven’t reach out to them either. Yes, I’ve cut back time on social media and news, which has helped a lot of my anxiety. I’m just not able to concentrated long periods to read which is pity as I love reading. My work keeps me busy though and of course brings its own stresses. Just waiting to hear what the recommendations will be beyond June, so that would know how to plan work etc.
hi @MoMo I hope you’ve been doing okay today? I’m so sorry to hear you feel your relationship with your consultant and your GP is not positive one, it does sound like you have a lot going on. As @Alice_BloodCancerUK says, please always feel free to talk through anything further on here, however much or little you are comfortable with. What’s so encouraging to hear is that you have found ways to ease your anxiety, I hope this has continued to help you?
I hope you’re doing well MoMo, I was diagnosed myself with Tcell LGL a good 8 years ago (although I know I had it a way back), it started with a trip to my surgery as I always felt tired and a blood test conformed it. Ever since, I go for a blood test every 6 months as the specialist nurse keeps an eye on the lymphocytes level in my blood. I think it’s called Watch and Wait, to see how it develops before deciding on anything. Since my diagnosis, last week was actually the first time I ever had a panicky feeling as I had a night sweat and now I have a bit of a bedtime anxiety which I’m going to see speak to my GP about.
I am new to this forum and still finding my way around but I can help in any way MoMo, let me know.
Hi @Stranger007, a great big welcome to our community, yes I am on wait and wait with CLL, some people call it active monitoring. I have been on it for 16 years and I still get anxious before my blood tests, although your panicky feeling, bedtime anxiety and night sweats definitely something to check out with your GP.
I find this forum a supportive place where I can be really honest saying how it is for me but if you feel the need to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at firstname.lastname@example.org.
It is great that you have offered your support.
Please let us know what your GP says and how your blood tests are.
How has shielding been for you?
Hi @Stranger007 and welcome to forum! It’s nice to know that there are others here with TLGLL. I went straight to medication when diagnosed last October. But yes, the symptoms had been there for awhile = years: night sweats, and day sweats, if I had a flu it was really bad but my blood works was okay, neutrophils at the lower range of normal. All that until year ago winter when I could shake off the flu and the GP discovered that my neutrophils (ANC) were almost at the bottom of the scale. At the moment, I have monthly bloods and doctors appointment as we are still trying to figure out what medication might work so that I could be on ‘watch and wait’.
I don’t know if you know that there’s good TLGLL Facebook group too with people all over the world.
I can imagine that you feel a bit panicky after experiencing night sweats! Hopefully you have a good chat with your GP and you get your bloods checked so that you know how things are. Nothing is more worrying that not knowing. x
Good morning Erica and MoMo,
Thank you for your replies, I hope you’re both safe and sound, MoMo thank you for Facebook tip I didn’t know about the group, I will look it up.
I had a chat with GP and we did some tests etc but the blood specialist didn’t think my night sweats have anything to do with the LGLL, they stopped now but no one seems to know what caused them!
Stay safe, look after yourselves and saviour every day!
Hi @Stranger007, well at least your night sweats have stopped perhaps you will never know why???
Keep posting how you are doing.
Yes, stay safe and yes, savour every day and spoil yourself.
I just wanted to let you know I’ve had LGLL since 1994 (I’m now 70) Although I had to change my life…give up a stressful job & avoid situations where I could get an infection, I’m ok. My first consultant was very knowledgeable but I have not been so lucky for the last 15 years. ( or with GP’s) Maybe because as I understand it LGLL is very rare. I use my limited energy wisely as life is quite tough as my Husband has Parkinson’s so I do not normally join conversations about ‘anything’ but I just wanted you to know LGLL can be managed ( by you unfortunately as you are unlikely to get help) Kind regards Rachel