Lizzie I was diagnosed in January aswell and im watching and waiting. Its been really hard at times, I havent told my children either and trying to come to terms with it all still. Had some tough weeks in the last 6 months where I have felt extreme fatigue and i have also had some itchiness usually when my glands have been swollen.
I am 37 so they have caught it early and I am hoping for the best to live a long happy life still amongst dealing with anything that comes my way. I wish you all the best and hope you are well.
Taking some comfort in reading these forums and seeing that this can be treat well and a healthy lifestyle can be maintained.
Hi @Karlo86. I’m really glad you posted and already I can see that you sharing your experiences with @Lizzie380 will be so helpful.
I look forward to learning more about you. Never alone with you’re forum family
hi erica .it was nice of you to. reply. im sorry if i sounded up beat about my post …im not sometimes find it hard to take in .it just hits you .i have to work full time tired at weekends so if i can i have a nap…somedays are good and bad i dont. know what to expect…if you have been wait and watch for that long .i hope its me …hope to here from you thanks
Hi @gordo just reading your post that might be my rollercoaster emotions.
As you get further on you will probably get to know yourself better and your main reasons for your fatigue.
Is it emotional, physical, medical or practical, stress etc
Look after yourself and please keep posting
Hi @Karlo86 a great big welcome. Give yourself time to come to terms with your diagnosis.
I was diagnosed 19 yrs ago and life is good.
I look forward to hearing more about you.
How old are your children?
Perhaps tell someone in your medical team about your symptoms an their severity and impact on your life.
Since my diagnosis my emotions are on high alert and there are sometimes, good or bad days.
Look after yourself and please keep posting
hi lizzie380 i was on watch and wait for 7 years without needing any treatment working full time but this year the Chronic lymphocytic leukaemia (CLL) has gone into overdrive and now having chemo and target therapy, so enjoy the time while the Chronic lymphocytic leukaemia (CLL) is dormant I just put it to the back of my mind and never mentioned it to anyone, not everyone will need to have the treatment and you could go your whole life without any problems just enjoy your life as normal and if you need treatment down the line its best to deal with it then and not spend your life worrying. regards mw
hi lizze 380 .and weno…like your self was told 3 month ago…go back in 2 months for bloods again…i have just got my head round to thinking straight and positive…i work full time and somedays are harder than others. i hope im on wait and watch list for a long time to…just wondering to anybody that has had it long term,is there any thing you can do to help …like foods exercise. i find it hard at work just now…7 o’clock till 6 is a long day on your feet…i need to boost my energy levels up
hi Gordo i was diagnosed in 2016 and of course, went through all the emotions then once you have your head around it and time goes on it becomes less of a worry and emotion. i worked 6 am to 6 pm every day i took multivitamins to boost my energy levels it worked for me for seven years, and now having chemo and target therapy for 12 months of fixed treatment, once i have completed this it should get my Chronic lymphocytic leukaemia (CLL) back under control hopefully for many years to come, there are so many advanced options of treatment nowadays, i think of it as a blood disorder and try not to think of it as cancer but i understand peoples anguish with the word cancer as i have said some people don’t need any form of treatment there whole life and if you do theres so many options. regards mw
Hi @weno a great big welcome to our forum, I am so glad that you have found us. @weno and @gordo I have had Chronic lymphocytic leukaemia (CLL) for 19 yrs and I have been a very lucky girl and been on watch an wait (active monitoring) all that time. Long may it last.
I take my hat off to both of you with the hours you work and have worked. I think that a healthy, fit person might struggle to work those hours.
As for the question what can you do to keep healthy very personally I think that keeping to a fairly balanced healthy diet (with the odd treat) and I am a believer in fresh air and appropriate exercise, for me, walking as it helps me clear my head and have some ‘me’ time as well, so it helps me emotionally too. @Alice_BloodCancerUK has given you some great information too.
look after yourselves and please keep posting
just a quick question for anyone with Chronic lymphocytic leukaemia (CLL).do you ever feel breathless…or am i just suffering from anxiety…been to doctor checked me over everything fine lungs etc …but sometimes feel breathless .
Hello @gordo. I sympathise with you feeling breathless. It can be a bit frightening at times. I have a different blood cancer but when my haemoglobin (Hb) is low it makes me short of breath. I just wondered what your Hb levels are like and whether it has anything to do with that? Warm wishes, Willow
I have a different blood cancer but I definitely get random unexplainable episodes of breathlessness. Like @Willow stated, it can be scary and alarming.
Whenever I feel like it I often just quickly check o2 levels and pulse and then blood pressure just in case.
Good you’ve been checked over by your doc and maybe a case of circumstance. Be sure to not dismiss it if returns… if you can try and write down what you’ve done, eaten, feeling or doing to see if that explains anything?
I have Chronic lymphocytic leukaemia (CLL) @gordo and I had what was tested negative at Christmas for Covid, same symptoms of Covid and it took me absolutely months to get over and the main lingering symptom was breathlessness, if that helps at all.
When I was diagnosed 19 yrs ago I was breathless and a great lack of energy and fatigue.
Look after yourself.
thanks guys for responding to my problem…i will look out for a lot of things and try keep it under control… .keep posting its good to read all your posts .since i joined it i dont feel alone ,i know i have a loving faimly and they listen. but it different because yous are all going thro it …thanks gordo
since getting checked out with doctor. …i seen to be better .think its a bit of anxiety, when i got my ct for Chronic lymphocytic leukaemia (CLL) .they picked up something in my badder so went last week to get tests run and checked out ,so everything is clear…im just finding fatigue tierdness .hard to cope with…on my feet from 6 to half 5…so just trying to find ways dealing with it…thats when you realize you have leukaemia. it just comes in waves ,and its good to talk in the forum…
hi everybody hope yous are well…i was just wondering is it advisable to get another covid booster. had my jags and one booster, just hear lots of bad things about it from different poeple…2 workers at my work got covid i stayed away from them.and just back a cruise…and do we all get flu jab…thanks gordo
Hi @gordo, always a dilemma knowing what to do for the best.
Perhaps it is a question for somebody who knows you medically and then decide what is best for you personally.
Please let us know how you get on and what you decide.
