Hi @Erica . The sores have healed now thankfully. Suffering with this horrible cold/flu which is taking me much longer to recover from than it usually did unfortunately. Thanks for checking in. Got my routine bloods on Wednesday so fingers crossed the levels are stable x
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Hi there, was just reading all your posts following your Chronic lymphocytic leukaemia (CLL) diagnosis. I dont have that. The one that I have is TLGL. I am on watch and wait (active monitoring). My blood scores have been very good so far with the result being my next appointment is in November (1 yr) rather than the 3 mnth check. This is an amazing forum and has helped me a lot since I was diagnosed. Take care my friend,
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Hi @Pickle23 I am glad that your sores have healed at last.
My husband and I also had the horrible cold, flu, non covid bug at Christmas time. With him it ran itâs course and he now feels absolutely fine.
Me, with Chronic lymphocytic leukaemia (CLL), just cannot shake off the fatigue.
Please let us know how your blood tests go.
19 yrs on and I still get anxious about the tests and getting the results.
Be kind to yourself
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Hi Pickle, this is my first post on this site and I hope I can be some help to you. I was also diagnosed with Chronic lymphocytic leukaemia (CLL) at 44, my youngest child of four children was 12 at the time. I have been on âwatch and waitâ for 21 years now. I was discharged by the consultant into the care of my own doctor after the first two years. Due to get my yearly blood check this week. My Chronic lymphocytic leukaemia (CLL) was discovered by accident, during a blood test for arthritis, which indicated a raise white cell count.
I had a bone aspiration done and Chronic lymphocytic leukaemia (CLL) was confirmed. Like you it came as quite a shock and took a while to get my head around it. Like others have mentioned, I suffer increasing night sweats, chronic fatigue on most days, (when I over do it). It took a while for me to get my head around the fact I had blood cancer, I made a conscious decision at the time not to tell my children as I did not want this to impact on there lives and for them to worry about me. My husband, siblings and mother were the only people who knew until last year, when I eventually informed my children. I have worked full time for all of those years and I am looking forward to my retirement at the end of the year, which cannot come soon enough. I have tried to stay positive over the years and put the Chronic lymphocytic leukaemia (CLL) diagnosis to the back of my mind. But it does raise its ugly head especially lately. Recently it has become more of a concern, especially with Covid and working and an increase in my symptoms. Incidentally I did have arthritis and have had a total knee replacement of my left knee twice now and waiting for the right knee to be done. I do hope you are supported and comforted by the help of those on this site. Stay positive and bless you.
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Hi @Janp (and @Pickle23) and great big welcome to you and I have to say what a wonderful post that I really related to in so many ways.
However I was diagnosed 19 yrs ago with Chronic lymphocytic leukaemia (CLL) and I have been a very lucky girl and been on watch and wait ever since.
I have really got to know myself over the years and how I tick and I manage my fatigue on a daily basis.
I also really, really looked forward to my retirement from work, what have you got planned?
I did and joined all sorts of things, then Covid times came and I reassessed my life again and actually resigned from many things that I realised were becoming a chore as opposed to something I looked forward to.
I havenât joined the gym again but I am now a great walker and still do Pilates with the local U3A (University of the 3rd Age).
Please do keep working as I look forward to hearing more about you, I could learn a lot from you.
Look after yourself
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Hi @Erica
Thank you for your welcome I am so glad I joined as it seems those of us with blood cancer are the ones who understand us the most. Unfortunately I havenât had much time to get to know myself I wish I did. I hope in my retirement to take up painting and photography again, alongside sewing and knitting. Exercise has been difficult for me due to my knees but I do try seated exercise though, but is not a great calorie burner. I am enjoying reading the advise that other users have put on the forum, there are some useful tips to get âmy self in order and healthierâ and I thank them all for that as I really have self neglected over those yearsâŚoften putting others first. I have struggled with my mental health a lot and so wish I had joined this forum much sooner. I have posted an article about work today and it is not as happy in work as I would like it to be for my last few months.
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Oh @Janp have I so, so often put others first and self neglected myself over the years.
Oh, what great ideas you have for your retirement.
I look forward to hearing how you are doing when you retire.
Seated exercises are great and donât forget that any exercises are better than none. I am really impressed with you.
Be kind to yourself
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Hi @Erica Thank you, I reckon the support on here is going to be something I should have had years ago and not tried to cope with my own thoughts or suppressed all that worry alone for so long. Time to change I guess, its never too late.
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I also had such a problem, tell me, did you take blood tests and everything would be fine according to them?
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bloods done last week. all within usual range except for ferritin which is 14. i always have low ferritin and no amount of iron supplements changes that. having said that i didnât get my immunoglobulins done. doing that in a couple of days.
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And when you did the biopsy, was your blood normal too?
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I mean was there something in the blood test not normal that you went for a biopsy
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i had the night sweats for years and consistently low ferritin but it wasnât until i had some elevated paraprotein in immunoglobulin count that the haematologist thought there might be something going on. so at first they were suggesting MGUS. but the bone marrow biopsy showed abnormal lymphocytes and thatâs how i was diagnosed with Chronic lymphocytic leukaemia (CLL).
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And how bad was the sweating?
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How are you doing @Anastasia?
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every night every couple of hours waking up and drying with a towelâŚ.not yet drenching sheets but getting that way
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Hiyah Hackney bloke. I was diagnosed with MBL in 2018 and now stage A Chronic lymphocytic leukaemia (CLL). I had paraproteins also and the doctors were convinced I had Myeloma. Which hospital are you under? I am at Barts now and on watch and wait.
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Good to hear from you again @Attyx and that you have a diagnosis and joined us watch and waiters, however I do personally prefer to call it active monitoring now.
How are you feeling in yourself?
Take lots of care of yourself.
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