To understand our member demographics, select ... - CLL Support
To understand our member demographics, select your role. Has CLL forced changes and impacted negatively? Please expand on your experiences.
Please select all that apply:
Still working full time to the surprise of some. It probably depends on the job. I don't think I could do it if it were physically intensive. My job is software engineering so it's a lot of thinking and problem solving. I do get tired and fall asleep not long after I get home. I do not know whether this is from the results of the chemo or from the CLL.
Still working full time as an office co ordinator/receptionist. Nothing physically demanding but can still feel fatigued after a busy day.
Working is my saviour from the mental anxieties of this soul destroying illness, if i didnt go to work i would have given up by now.
Changes have been made at home and at work re avoiding/preventing infections, hygene standards, limiting my workload so i dont get over whelmed etc, but work is the one part of my life where i am still treated "normally".
Long may it continue.
Anne x
I retired by choice in part because I was not sure how many years of good health I was going to have and wanted some healthy retirement years. In fact, my disease has been quite indolent, so I recently returned to work which is helping pay for my husband's (non-CLL) medical expenses.
Working full time at 67 yrs old, since having nothing to do scares me, and I am so thankful that my aggressive CLL responded to NON Chemo treatments in 2010 & 2012. Zydelig gave me back the energy and fitness to work - mostly from home on computer. But I am ready to travel and oversee field construction work again.
Good info.
Retired because of increasing infections. Since had 6 rounds FCR and now in remission 18 months post treatment
Still working but struggling to decide if I should retire. 60 years old and 1 year into my CLL journey. Still feeling fine. Enjoy my job but it can be high stress at times (overseeing a large number of employees). Fortunately I can work from the house so I have some flexibility. Don't want to stagnate by retiring too early but also want to enjoy the years I have left.
In recovery from 6 rounds of FCR. Still unable to work full time but almost there . I live in US so I hit my catastrophic limit on my health insurance so I owe the hospital $7,000. Insurance has paid Mayo some where near $275,000. I need to sell my house it's too much to take care of and down size. I will also be paying the hospital for several years. I am in complete remission and plan on retiring as soon as I'm out of debt and my health insurance has vested and I can carry it into retirement with me. Many factors to consider in US when you are 49 years old and not near retirement age. I am one of the lucky ones I have good health insurance.
Snow_White, Thanks for sharing your situation and giving our community an insight into what is like to live in the richest country in the world where a quarter of all bankruptcies are due to people not being able to pay their medical bills.
Good to hear that you've achieved complete remission. All the best for your plans; I know how tough it is to stay employed, even with good health at your age. I was made redundant by a blue chip US company at your age and it took me the best part of a year to get another job and I was healthy back then.
Neil
I was diagnosed in October 2009. The following month I received my redundancy notification which came into effect on 31/3/2010. (The contract on which I worked was lost to another firm, so it wasn't just me). But it wasn't all bad; I spent the whole month of January on holiday in New Zealand, facilitated by the fact that my Husband's brother lives in Auckland and I had not long since received £2,500.00 in mis-sold insurance cover on my car loan, which paid for the air fares. So far, so good. The trouble is that I have not managed to find proper employment. All I have had has been a few weeks, here and there, of temporary assignments. One lasted all of two days. I hav'n't had any work at all since October 2012 and I will be 62 later this month. Most of my rejection experiences have had nothing to do with the CLL, because I didn't get the chance to tell them! The area in which I live is an unemployment black spot. I've even been turned down twice for a job on the tills at Asda - and I've got a degree. As you can imagine, all this has not done my confidence any good and I developed AIHA, at it's worst late June this year and I'm still on Prednisolone. I know I could manage a part-time office job but I've got a feeling it 'aint' going to happen. I can claim my state pension in September next year.
Snowdroprose, what bad timing on your redundancy. I have to admire the way you made the most of it with that trip to NZ. Per my reply to Snow_White above, I know how hard it is to gain proper employment even when retirement is still a fair way off. I had to settle for the uncertainty of contract work after only being able to land one interview for a permanent position in 10 months of seeking work, despite having two degrees and good experience with world class companies. It sure is hard maintaining your confidence in such circumstances even with good health, so I can appreciate your difficulties maintaining a positive attitude when seeking hard to find employment. September next year must seem a long way off too. I hope you are able to find meaningful employment in the mean time.
Neil
Just a reminder to everyone replying to this poll that this site does not enable the administrators to set it to private to our community - hence no padlock.
If you don't want your reply visible to non-members, please delete it.
Thanks,
Neil
Trying to still work about 60 days per year as a casual teacher but fatigue is making it pretty hard - especially in winter.
70 yo, retired from first life at 61, continued work 40 wks/yr, dx'd Nov 2011, 11q, consulted CLL specialist 5 hrs away at major medical school CLL-only clinic. Concurred with local oncologist. Immediate 6 months FCR Jan-June 2012. Immediate huge response. Continued slighty reduced work to accommodate tx cycles. Otherwise, work as usual, continued to now. Remission ongoing. No more studies post tx. No sx. Will try to find clinical trial when the dragon awakes. Fatigue? Who? Me? I've never been physically active enough to notice any change. You people are the best for up to date, vetted info and bringing us and the docs together in true common purpose. Gratitude abounds
Working full time as a chiropractor. I am 43 years old at stage 1.
I retired from 30 yrs. of teaching and had planned on going back to support students (ages 10-14 yrs.), however with a compromised immune system, I decided against this activity. I have become more physically active since retirement and my CLL diagnosis. It has been two years and I continue to find ways to stay positive and active in my redefined retirement.
tpetro
Working full time after many years of not being able to after an SCT and subsequent DLI. I'm working in a school so the hours suit me and I have good holidays. A few years ago I would not have believed I would work again but was able to gradually improve. Even though I have relapsed again, I feel the best I have felt since before diagnosis over 20 years ago. I I feel very blessed.
I had retired prior to diagnosis and my husband and I had planned to travel as long as cash and legs allowed. My CLL is quite aggressive and so I have been unable to enjoy a decent remission period following treatments, therefore, CLL has forced changes to our retirement plans. However we get away whenever we can and I am hopeful that one day I will achieve a remission that will allow us to make longer term plans.
Maureen
Still working part time at a desk job which certainly helps take my mind off things and gives me some sense of normality. Do struggle with staying awake in the afternoons though when I'm sitting at a desk. A quick walk up and downstairs alleviates that, but need to repeat after about an hour.
On "non working" days when I'm much more physically active, I feel much better, but then very tired following morning until I can get myself going again.
So generally I think work is good if you can still do it, but you need to get sufficient rest to complement it.
Ernest.
Work ft as a teacher in the lovely state of California mostly because of----health insurance and I need the income too. I come home almost daily and take 2-3 hour naps then still have no problems falling asleep at 10-10:30pm.
My situation might also be partially due to extreme stress at my school because it's 'special' lol. Who knows but I only have 16 years in so i will probably take long term disability when/if I need treatment then go back to teaching...
I was working 3 days a week prior to diagnosis for family reasons and am back working a 3 day week now, having taken a few weeks off post diagnosis to get over the shock!
I had Tuberculosis inside my right ear. I had a Mastoidectomy to remove most of the infections. The TB meds put me in hospital with Hipatitis and with further tests they found the CLL. Was on chemo and TB meds the same time. 12 TB pills in the morning and with the chemo it was hell! It was in 2013. Today I am okay. I am on no medicine at all. Thanks for this site.
After going through that, CLL should be a breeze! Fantastic that you are on no medicine; long may that last.
I'm 66 & retired & in truth if I hadn't been given my diagnosis back in Oct 14 I wouldn't have know I had CLL. I don't feel or consider myself to be any different to how I was 6 months or a year ago even. I'm not exercising as vigorously as I was a year or so ago, but this is because of physical problems I've had in the last year with my back & ankle, not CLL. The only real difference at present is that Green tea is now my drink of choice, I'm taking a green tea supplement & I'm determined to keep myself as healthy as I can, so I delay the progression of the condition for as long as possible. ,
I retired before developing CLL, I am in the "wait & see" category.
Yes. Reduced our ability to go on longish, strenuous hill/mountain walks together. Something we both love.
Still managing to work full time,fortunately its not too labour intense or I'd have to stop.Although I am now finding the night shift's tougher to do
I am semi retired, I work 2 days a week. My choice , as I will be 70 this year,, this tops up my pension and enables me to belong to a gym,go to a Pilates class And stay reasonably fit. Which means I will be able to take care of my husband ( he has CLL) if and when he needs me too.
I was diagnosed with CLL following a routine blood test in 2006 in Spain where we had retired to in 2000 to live more cheaply and enjoy the challenge of assimilating ourselves in a new culture. The only actual effect on my life then was the time spent quarterly travelling into Granada 70 kilometres from our village on the Granada / Malaga provinces border. I received Chlorambucil + steroids in 2013 for 5 months which brought my blood levels back to more normal. I suffered diahhorea from before the treatment and this continued until 3 weeks ago when I was given Questran powders and this seems to have solved this problem. The diahhorea did mean that I was unable to go on the long walks I previously enjoyed but I got round that by shorter more frequent walks. We returned to the UK in January 2014 because of my wife-s health problem, now diagnosed in the UK as Parkinsons. My Doctor is currently considering a clinical trial inclusion.
the last 3 years before I retired I thought age was slowing me down. Once I retired I was found to have had CLL probably for 4 years and I wasn't dying of old age. Commenced FCR within a month of Dx and am now, a year later, doing just fine. Glad I chose to retire when I did (@ 66) otherwise, without feeling I was fit enough to work, I may have let CLL get me to a worse point than I did.
Working part time three days a week, as I was prior to diagnosis twelve months ago. I do get very weary in the afternoon but will keep going as it keeps my mind active.
Since my job required travel all over the USA, it was exhausting. I also wanted to have time to be with my husband, children and grandchildren. So after 45 years as a Registered Nurse I began a new career at home working in my husbands business with him, it's been great. We spend every day together!
I am looking for information and I'm sure you're the person to ask AussieNeil.
My apologies if you've answered this a thousand times....I've read your post from last year about privacy settings.
My understanding when joining, was that this was a 'peer to peer' site (as stated in the 'help' section). When setting up the account I selected my communication to be contained to the 'CLL Group'. Most of my posts have a 'locked' symbol next to the post title.
Of course, nothing is ever 100% 'secure' online so I haven't posted anything that would be devastating if discovered, however I hope this is a 'peer- to- peer' forum and I've done all of the safeguarding possible.
So...if you have the time and energy, would you please be able to tell me if my posts are remaining with this group, as intended?
Thanks,
Matilda2
Hi Matilda2 and yes I have covered this topic before, though not quite a thousand times. 
I was tempted to set your post with you posing with the shark to private given you'd published your photo, but you looked so great in that picture and I wrongly assumed that you knew what you were doing.
Here is how to set your posts private:
support.healthunlocked.com/...
The critical part is covered in step 6.
You can always edit your past posts/questions, but if you want to reply with something private to someone else's post, just state that in a brief reply to the post (and I should see it and change the post) or send me a Private Message (PM):
support.healthunlocked.com/...
Try editing your earlier post to make it private now and PM me if you need more help.
healthunlocked.com/cllsuppo......
You can enter the Edit facility by clicking on the boxed 'v' to the right of the 'Recommend (n)' below your post.
Once you've done that, it will take search engines up to a few days before they pick up the change. Even private posts have the subject and the first few lines of the post visible to search engines, but the author's userid is not shown. Check what little you can see by searching for a private post (indicated by a padlock icon to the far right under the post's title.
Neil
Fabulous....Thanks Neil. Your re-posting of the online privacy info was great and prompted me to return to my posts to check.
I can't recall selecting 'everyone' when I first posted that last one (the fishing photo) but I must have. I've missed securing a couple of other posts too. It's okay though, as there's not too much intrigue about me or my info anyway.
I think I managed to successfully change my last one before asking you about it.
Thanks for the compliment... I was proud of that catch!
Also, I adore the pictures you post. They capture our country so perfectly. I always look forward to reading your info...but especially love the pics.
Thanks again and hope you are doing well. Jules
ps: I'll message you soon with a reply to the original topic this thread.
Matilda - Everyone is the default setting, sin if you don't remember to scroll down after finishing you post to change it that's what you get. Personally, it angers me that the default isn't community only.
Pat
The primary negative impact with CLL beyond an unexpected cancer diagnosis only one month after my planned retirement from teaching is the crazy idea that my CLL is of the watch and wait variety. I have not shared my diagnosis with very many... even my elderly parents. This has led to a sense of isolation since when I do not share my health issue I cannot expect support. So that is my negative…not sharing my diagnosis which is my own choice…confusing!
Well you'll find plenty of support here from people that know what you are going through. I didn't even make it to retirement and was told I was stage 4 and would be on watch and wait. That was 6 years ago and I'm still on W&W...
Trying to work as much I can to meet people and trying to have a social live, but full time is simply not a chioce anymore. Too ill. For the time beeing impossible.
I was already disabled and on a disability pension due to spinal injuries to my C, T L spine plus lumbar and neural damage. Was in this condition 10 yrs prior to CLL diagnosis, which came on my birthday... some present huh ?
