Welcome @nelletap. Really great that you have joined the forum. Itās been a life saver for me on here. All the information Iāve needed is here and Iām so glad that you have also found the value of the forum. Itās so great to have new members who can share there experiences. The group is growing and there is so much support!
Evaluating our own risk is so hard isnāt it. I often play my risk down in my own head because others dont get it and I feel like Iām making a fuss. On here we all understand!
I look forward to hearing more from you 
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That is very very strange!
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Hi Iām Johanna. I live in Wales. I was diagnosed with Chronic Lymphocytic Leukaemia in 2009 was on Watch and Wait until 2014. September that year I was able to be part of the Icicle study and take Ibrutinib each day, it changed my life ,I felt so much better soon after starting that medication and am still part of the study. Have a few other health problems, but think the worse is the affect of the āshieldingā. Feel so lethargic hopefully be able pick up some tips here.
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Hi @johanna a great big welcome and I am so glad that you have felt you could navigate the forum and post.
We have been shielding basically for 2 years now, that is a very long time to not have social interaction, any activities we might have been part of and to really enjoy time with family and friends. I think I have slowed down during the last 2 years.
I cannot get my head round the realistic danger out there, it just seems a very unsafe world out there exacerbated by the media and basically being in doors for so long.
I tend to not think about feeling lethargic, but more about me feeling fatigued.
Since my diagnosis I do not deal with what personally stresses me well, it all gets too much and sometimes I can get tearful as well.
My fatigue can be brought on immediately or up to 48 hrs after I have overdone it emotionally, physically or practically.
Sometimes I need to duvet dive or have a nap in the afternoon and I have more energy in the mornings and none by the evenings, Sometimes I need some fresh air and appropriate exercise.
My downfall is that I feel better, then overdo it and it takes longer to build myself back up again. I never learn.
I find all my and my husbands medical tests and appointments really sap all my energyā¦
Please be kind to yourself and keep posting, there is a lot on here mostly under fatigue.
Hello and welcome to the forum. Itās so good to hear that you are feeling well. How great that you got to take part in a study that obviously has worked so well for you and hopefully for others.
How long does the study run for?
Itās so hard getting back in to things isnāt it.
Try small things at a time. How are you feeling now restrictions are being lifted?
I look forward to learning more about you
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I do find Tai Chi and Qi Gong very beneficial as exercise options.
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My father in law had polycythemia Vera, diagnosed probably about 1970. Not sure Iāve known anyone else but coincidentally used a private taxi service for a trip to Barts a few months ago and the driver had it (I guess the trip to the hospital led to a discussion that often wouldnāt happen). It was odd in a way as I think a laymanās overview is that he has too many red blood cells and I have too many white. In other ways we are in the same boat.
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Does it help you to relax as well?
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Hi @nelletap what a coincidence as they say itās a small world and I am sure led to an interesting conversation
How are you both?
Look after yourselves
I think this must relate to Qi Gong and Tai Chi. The Qi Gong particularly helps me to relax. It is interesting that in Qi Gong they do have things they believe improve flow of lymph system and gentle stretches etc which you realise donāt often happen in daily life. One online class I do he does about 45 minutes of exercise and then there is an opportunity for questions. I can hardly keep my eyes open by the time of the question session.
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@nelletap sounds good to me, enjoy and relax
Anything that makes me sleepy is good!
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Hello everyone, I thought I would introduce myself as the new Support Services Officer within the Support Services Team. I can already see what a valuable space this is for our community, and I look forward to being part of it. Please do reach out to us if you need help or support (Blood Cancer UK support for you). Best wishes, Tanya.
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Lovely to meet you @TanyaBloodCancerUK! X
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Hi @TanyaBloodCancerUK a very warm welcome and thanks for introducing yourself.
Having seen your posts today I am positive you will be brilliant and a great asset to the wonderful Support Services.
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Hope youāre well and look forward you hearing from you
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Hello
My name is Sandra and I have Chronic lymphocytic leukaemia (CLL). At the moment I am on watch and wait but think I am very close to treatment as I have enlarged spleen, swollen nodes and low blood as well as platelet count.
I donāt want chemotherapy as have lost all my family to this . Hospital told me there is alternative to chemo and said they use targeted therapies.
I asked how long treatment extended life and they said they did not know yet as treatments quite new.
Is this right? I am quite frightened at the moment and was considering not having treatment. Not meaning to be negative
Seeing different consultant every time does not help as they all have slightly different options .
Even though my spleen is enlarged I have had consultants not check it and now my bloods are going down one consultant did not check spleen and said āwould not be spleenā
Consultant this week checked me and agreed bloods could be due to spleen.
This is a top hospital , I appreciate they are very busy but I find all this worrying . Sorry if it sounds like I am complaining just coming to terms with things
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Hi Sandra,
Thank you so much for sharing and Iām so sorry to hear youāve been going through what sounds like a very tough time. May I ask how youāre coping? You are certainly not complaining- this is a safe space to share, and Iām sure others will share their experiences, too.
Might you find it helpful to talk this through at all? If so, youād be very welcome to give our Support Team a call on 0808 2080 888, so that we can go through things with you. Treatment decisions can be difficult to make and Iām really so sorry to hear of you losing your family- understandably this must have been so tough and whatās happened to us in the past can of course affect how we feel about things now.
I do think itās understandable to be feeling scared now- Iād encourage you to share how youāre feeling with your treatment team so that they can help you, and can advise and support you around this- itās so important for them to do so. In case itās useful, Sandra, we have some information about CLL treatments on our website, and this could help you to feel more informed in your conversations with your team.
Please do let us know if we can do anything to support you. I will tag our brilliant Nurse Advisors to see if they have anything to add upon their return tomorrow @GemmaBloodCancerUK @LauranBloodCancerUK @Heidi_BloodCancerUK.
Best wishes and do keep us updated.
Tanya.
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Hi @Sandra you donāt sound as if you are complaining you are just saying it how it is for you and that is what our forum is for.
I have just seen @TanyaBloodCancerUK brilliant response, so much better than I could have done.
You have got so much much going on at the moment and you seem to be getting conflicting messages and no continuity of care.
It all sounds pretty scary to me, I think the unknown is.
Just give yourself some time to take it all in and the main thing is to really look after yourself and be ever so kind to yourself.
We are all here for you as @TanyaBloodCancerUK has explained.
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Hi Sandra and a big welcome to forum. Iām really glad you found us because all of your fears and worries will be completely understood by members of the forum and the Blood Cancer Team. @TanyaBloodCancerUK and @Erica have already given great advice.
I think it would be really useful to give the support line a ring to talk things through - when you are ready off course.
In the meantime, please keep posting. Itās better that you share your questions, fears and worries on here instead of it building up X
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