CLL Support Association
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How many of us with CLL still work full-time?

I know that we all have dramatically different symptoms and are at various stages. But my Occ Health department has insisted that my hours were reduced. I'm Stage 3, with quarterly blood tests, so very well off compared to some here. But I do struggle with fatigue, and it's been noticed in the workplace.

I'm a single parent (widowed), and need to work to pay the bills. And I'm wondering how many others are in the same position?

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HI, I am in stage 4 and then my counts drop to stage 3. I am still working full time and I am 66. I am in wait and watch, my drs. are watching my numbers very carefully. I have a routine in the morning before I go to work. First I pray, exercise, prepare my food to take to work.

I juice every morning, eat all organic meat, veg. and fruit, listen to you tube every morning how to cure myself naturally. It has real helped me when I follow this diet from not being so tired. Also, I am widowed and sometimes it is difficult. God Bless.

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That's a great and inspiring reply. Many many thanks!

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I’ve been full time firefighter for the last 5 years since diagnosis and 3 1/2 years post chemo.

You can do it. I’m no super human

Jeff

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Thanks, Jeff. And trust me, I want to carry on working. I actually enjoy my job! I'm slightly peeved that my Occy Health have cut my hours down!

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I've never stopped working since being diagnosed with CLL nearly 7 years ago and having undergone six months of FCR chemo twice, and now taking Ibrutinib for over a year and a half. I travel a lot in my work (about 8 months a year). I'm a bit concerned that I will work at the Winter Olympics in South Korea next month where it will be about -25 Celcius, but I'll take my precautions and do what I gotta do. I do not allow CLL to be the primary thing in my life, though I certainly do not advocate that anybody take unnecessary risks with their health.

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Yes work full time dx 2015 started treatment 2017 April on ibrutinib and apart from the first 5 days of treatment I have worked every day 37 hours a week I'm not as tired as before treatment so you will be fine

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Well I am embarrassed to say I had to stop working when i got really sick. I had my own business and it kind of fell apart. Now I am better but there isn't a business to go back to. It is hard to invest in a new business when I never know what the future holds. But I am taking up other pursuits and still considering starting a new business.

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Nothing embarrassing about that, janicelee. The fatigue/sickness part of CLL varies and has no relation to the stage we are at. I'm just pleased you're better now.

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David, I was diagnosed in May 2017 a few days into a horrible pneumonia that didn’t respond to the first three antibiotics. I spent most of about six weeks in hospital or going up to hospital daily. I was considered early stage. No treatment required.

But for the next however many months before November I didn’t really recover my energy levels much if at all. I was fatigued a lot. I couldn’t really walk too well. And i was breathless. It got into a vicious cycle.

My work was great, however. And once I was a bit better from the pneumonia I started a phased return to a high pressure professional job.

I did and still do a lot more work from home than I used to. I am currently not allowed to travel internationally. That is likely to change in the next month or two.

Things came to an odd head for me when my haematologist decided to rule out other causes of fatigue and referred me to a sleep specialist to consider if I also had sleep apnea.

They diagnosed enlarged tonsils. They promptly grew even more, and I found myself on another admission choking on my own saliva and struggling to breath.

After yet another week in bed, and in pain from the emergency tonsillectomy I was even weaker. But I could now breath easily!.

I decided with my doctors it was time for physio. She noted that all my muscles had become very weak from all that disuse over months.

So she prescribed at first just one simple bed based exercise aimed and strengthening certain muscles. Alongside this a graded return to walking.

The improvement in my symptoms has been staggering.

I am now also very serious about losing my middle aged spread. As I figure carrying that around must be more tiring than it would be without it. I’m really hopeful that I will all continue to improve.

But I notice I still sometimes get fatigued very suddenly and have to be much more disciplined about going to bed on time, and pacing myself.

But despite a concern that my lingual tonsils may now be growing, I’m at work full time with some reasonable negotiated adaptions. It is illegal for employers not to make reasonable adaptions.

I would get your doctor to write to your employer. And perhaps demand certain things to accommodate your fatigue. It is discriminatory to not consider your illness sympathetically. You may also want to ask for an external opinion of your fitness to work from an external Occ Health person.

But also do check there is nothing else contributing to your symptoms. In my case the tonsils were related to the CLL but for months nobody had noticed or thought of them. (I was a heavy snorer for years before all this...). Sorry for the waffle. It’s interesting that there are quite a few younger patients who work on this group. It can feel a bit lonely when they say most people with CLL are so much older.

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Thanks David!

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I’m a 52 yr old single mom who works full time. W & W stage 0, dx Feb. 2015. Fortunately, I have the option to work from home on a full time basis. My employer is well aware of my diagnosis and they realize the need for rest at times . I’m fine to work the day normally but do find myself lying down after work, feeling pretty tired.

I would love to retire early, however having older kids in hockey and other sports will not allow it!!!

I understand being the sole parent brings that much more uncertainty and stress as I too, tow the load on my own. My boys father lives in New Zealand and is no help financially .

Chin up, we can get through this....

J.

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Will be 65 in a few days, been in remission after BR treatment 2 1/2 years ago and continue to work. Because I enjoy what I do.

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Hi David,

I’m still working - am 40, stage 0, diagnosed 3 years ago, small kids, need to pay bills! My husband works too, we both need to work to cover ourselves financially at the moment. However, when my first son was born I went part time and still work part time, not because of CLL but because of kids... that said I’m not sure I’d manage a 5 day job, I work long hours and need to be flexible and travel for my work and I do get tired.

I think it’s great that you like your job and hopefully can keep doing what you like doing but maybe just for a few hours less than usual.. if you like it then it’s most likely good for you mentally at least... but maybe if you take a few hours off here and there you might enjoy a rest too hopefully? Best of both worlds maybe?!

Firefly

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I worked full time I'm 61 until I started treatment in January on a trial of I &V then the haematologist signed me off for 6 months because I work in a large school with a chance of infection but I'm glad of the rest didn't realise how tired l was

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50 year old Mum of three...and four dogs at the moment, that's another story. FCR in 2016. Work full time with quite a commute some days. Have found it hard when I've had an infection and I get those less often now. Clobbered at the moment with a bad chest but who isn't.

If I had a choice, I wouldn't work like I do, but it's not an option and it's not so bad. I enjoy my job and love the people I work with.

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