I'm not sure how to ask this question. I am two years into diagnosis of CLL. On W and W with blood counts remaining stable. My only "issue" is fatigue which notable isn't stopping my life. I'm 64 and work at a school. I'm thinking I want to make this my last year and spend time with my husband, relax, read and spend my healthy time doing something other than work. But part of me wonders if working is the best thing to do in W and W. Keep busy and "productive". Has anybody else been at this point and wondered what to do? I don't have any folks here in quite the same situation with whom to talk about it.
A the very least...thank you all for listening. i am so happy I found this website and get so much out of all the collective wisdom! Thank you.
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claretsauce
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I retired from teaching at 47 and am 64 now. I got dx with CLL at 52. I would definitely retire. I loved my career but am enjoying life so much. I would be afraid of germs from students going forward. And u mentioned fatigue which I didn't have. Travel, enjoy family, relax and do favorite activities. I am busier since I retired!
After 12 years on W&W, I had treatment. One year in remission and still doing great. Hopefully you have a long W&W. 💕🙏💕
So just curious, because my husband is 52 and wants to retire in 2 years from teaching. But my only fear now is INSURANCE! He was diagnosed 2 years ago and started ibrutinib in December. He is feeling great, but he is on the count down! He is so ready to retire and do something else.
I taught in NJ...If u work 25 years you get insurance for free. I was able to retire early because of that. My husband who is 7 years older was a teacher in the same school district. If we had left earlier than my 25 years, I would have been covered thru him, but if he died before me, I would not have been able to continue the insurance so I had to stay till my 25th year. We were moving south so we were anxious to retire and out of the cold. 💕
Hi, I stopped work 6 months before I started treatment as I was on my knees. The job was relatively stressful and I got to the point where I couldn't give it 50% let alone 100%. Although I'm now 65 I consider .myself as resting not retired. I keep busy but really miss the interaction and decision making. Once the current treatment has finished I will look at some volunteering just so I feel useful again. We're all different and you have to make the decision that's right for you.
My advice would be to find something fulfilling to fill the gap because retirement can make your life feel like it’s shrunk significantly unless there’s people and something to replace it. Don’t lose contact with work friends either 😊
I taught high school for 20 years and spent much of that time fending off illnesses brought to school by the kids! Plus the stress was literally killing me! I changed from teaching to my own very busy photography studio, which also meant spending a lot of time with people.
Fatigue and recurring illnesses finally forced me to retire from my business at 60. It was really hard on me as I loved that studio and had worked so hard to build the business. I think with the closure of my business and the CLL diagnosis, I did go through a bit of depression.
It took me awhile to find balance in my new retired life. I still struggle with it. My husband is not yet retired so we can’t take off and travel whenever we want, and I am alone way too much. Thank goodness for my grand children! They have been a life savor for me emotionally and psychologically.
My best advice is to make sure you have a plan! Retire to something. Could be volunteering, a hobby, grand children, but plan something.
There are lots of ways to stay busy while avoiding people with germs, but it does take some planning.
I still have too many days when I am bored silly, but fatigue keeps me from doing all I want. It is an ever changing balance while I go through treatment.
Good luck finding something to take you through your next chapter.
I think it depends on your profession and if you are naturally a self starter. I was diagnosed two years ago when I was 65. Looking back at blood tests I have probably have had CLL for 4 years. I have no symptoms currently but my IGA and IGM are quite low and my IGG just makes being normal by one point. I loved my profession. But as a public librarian I encountered so many ill people literally coughing in my face with cold and flu. So I decided to retire. I retired 4 months ago a day after my 67th birthday. I do miss the challenges of my profession but I am so busy doing things I didn't have time for before. Also being a librarian for 37 years is still part of me and I find I am using my skills in so many ways. I plan on signing up to volunteer at a historical society but am so busy now I haven't gotten round to it.......Pat
I was diagnosed at age 64. I retired at 62. For me personally, there is no way I could have worked with the fatigue that I had. Also, the side effects from treatment would have really been an issue if I were still working. I have such great respect for those people who are working through all of this. If you can afford to do it retire.
Find something you like to do to fill your time. I am a crafter and work all year long to get ready for the craft shows I do in the fall. It is something I can do even if I am not feeling well. If I really feel poorly, I just don’t work on it. I don’t make much money out of it but it keeps me busy and out of trouble. The proceeds from my shows cover my expenses and give me a little bit of extra spending money around Christmas. I am also active in some “back office” duties at my church which keeps me around a few people.
Hi Claretsauce! Hmm...that sounded so good I just looked up the recipe on the internet!
My husband was 54 when he was dx and he retired when he was 55 yrs old. Due to the recession at the time, there were going to be major changes to his retirement plan so he opted out before those changes were made. Fortunately, I was working so that gave us some flexibility. My husband is covered under my insurance.
Since the retirement changes were to be made so soon after he was dx, we had no way of knowing how he would feel as time went on and the last thing I wanted was him to feel as if he had to work if he didn't feel well.
In our case, it was a good decision. Sure, there was a financial cost but not one we couldn't absorbed. In exchange, he has had an opportunity to become engaged in many new activities and has made a lot of new friends.
I was diagnosed at 54 and retired 9 months later (2 weeks before my 55th birthday) because I wanted to travel as much as I could while I could. I’m 72 now and have managed more than 50 overseas trips in the intervening years. 4 trips so far this year with 1 still to come. Retirement is a big step but, so long as you’re ready for it, it might just be the best time of your life!
Hello Claretsauce, think your post was made especially for me to answer! I am 2.5 yrs W& W and my numbers are steadily on the increase but not requiring treatment yet. I see my consultant every 6 months.
I retired at Christmas mainly due to fatigue and, like you, was not sure if I was doing the right thing. 5 am starts and disruptive train travel were starting to take their toll. Job (administrator in a large university) had its fair amount of stress, but was manageable.
I have to say that retirement doesn’t necessarily mean stopping! I often find my diary’s full for the week but the beauty of it is that when I get that overwhelming fatigue, I can just stop & recover.
We are all different and you will instinctively know you’ve made the right decision. I decided I would retire a year before I did so mentally was more prepared - although the first few months did feel strange.
I wonder if you are able to cut your hours right down? I was able to continue working full time for 10 years after diagnosis. I was always so busy that it helped me to forget about my chronic illness. I retired to look after grandchildren three days a week which still keeps me very busy but I did miss working within a team and interaction with the general public. I took a temporary job over Christmas two years ago and they wanted me to stay full time. In the end I agreed to 13 hours a week over two days. It has been a lifesaver for me mentally. It is a retail job with no responsibilities so very different from my profession for 34 years! Keeping busy helps me personally to keep everything in proportion, but I am lucky I am well enough to be able to do that. My CLL has deteriorated over the last three years but I will keep going as long as I can.
Hi, I retired at 64 due to fatigue mainly and have never regretted it at all. Work was making me very tired indeed at times and I struggled to meet my commitments there. I to was on w&w at the time and treatment was then 5 years away. There is also the problem of putting yourself in the path of infections too to worry about. My job was in retail, so involved close encounters with the general public. I enjoy my retired life immensely.
Retirement is different for everyone ... I too worked in a school and loved it but retirement can also be very fulfilling .... Traveling, volunteering, going out together at your own pace are some of the perks of retirement even without a CLL diagnosis....
Keeping in touch with your work friends is an excellent idea and eases the transition . Sometimes you can become a consultant at the school and new people can get the benefit of your experience ...Both the school and you benefit from this kind of arrangement while you use your additional time to create a full retirement life...
There is life after retirement !
Hope your WandW stage continues and that you enjoy the beauty of an early retirement
Retirement was the best thing both my husband and I did. We wanted to spend more time together, travel and be with our grandchildren. He still is a elected county board supervisor and I serve on the School Board so we are politically involved. But when he’s not feeling well, he can nap and rejuvenate. We’ve been able to go to Alaska this year and look forward to visiting Ireland next year. I too worked in a school district as an administrator and teacher but I have filled that gap With charitable volunteer experiences. And even have time to do theater.
You may be under Watch & Wait a long time! However, CLL can turn on a dime. No money in the word is worth your health.
Retire, enjoy your husband and family. You won’t be lacking anything to do; retirement can be a busy and enjoyable time. It is such a treat sleeping in and not having to rush off to work. It is your decision; do what you desire.
I would say that if you can afford to then retire early and enjoy life while you can.
I was diagnosed back in 2015 at 55 and then had FCR at 57. Now I'm 58 and still working, but I work in an office setting doing course developement for the Air Force. I stay away from crowded areas as much as possible which is not too hard to do here. I can't imagine being surrounded by young people in a class room setting, particularly during flue season. The main reason that I am still working is to be covered by life insurance. I don't want to leave my wife in a bad place if things go bad. She retired about a year ago at 62 when the doctor she worked for decided to retire and close his business. I'm going to stick it out about three more years and hopefully be healthy enough to go RVing and travel in other ways.
Enjoy your life while you can. You never know when a pianno might fall out of the sky and end it all.
Why stop your life for this? That is when it wins. So when do you retire at 67 or 70? Live the life you have planned and do not let this thing rule your life. I retired last year at 55 and was diagnosed at 49. I enjoy my family, my grandkids. If you are a teacher then benefits should be covered I would think!
The answer lies in the definition of retirement. I relax by keeping busy and productive.
CLL is only one consideration and it should be given a relative measure based on your individual profile.
With regard to Watch and Wait, consider substituting that term with "Observe and prepare".
Perspective observation may include both continually growing in the knowledge of your disease and available treatments, and your continually redefining your objective and expectations.
Do not allow the disease to be your measure of you, rather measure your disease and cut the line that you draw.
My doctors says "Knowledge without judgment, is just anxiety".
I hope that we can all live live within a reasonable expectation of how we desire to live.
Good days ahead for you, do not wait and watch them pass by. Embrace them one at a time.
I was 51 when diagnosed with CLL 11 years ago. I have gone through 15 months of chemo infusions (FCR & BR) then a year of Ibrutnib and now on Venetoclax and Gazyva. I continue to work, never retired. Yes I’ve missed some work, with sickness and have been admitted the hospital twice but have persevered. I guess it is up to you. You don’t have to retire. It would be nice though! My wife wishes I would retire but I guess I like my job.
I am in the same boat as you! I stay busy but CLL is always in the back of my head and when I am still for a couple hours I drift into that zone of pity. My numbers have remained consistant for over a year just waiting for the other shoe to drop. Staying positive is an exhausting chore for the mind wanders on its own.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7
Dear Father, I admit that I often forget that you are with me. I often forget what you’re like. Would you please forgive me for that? I need to get to know you better. I need to get to know your Word and your promises better. Help me to put you first in every area of my life. Help me to live one day at a time. Help me to not worry about tomorrow but instead focus on what you’re doing in my life right now. I want to trust in your promise to take care of every one of my needs — financial, relational, physical, social, spiritual, and emotional. Help me to trust you more and worry less. I pray in Jesus’ Name. Amen.
I had to retire in 2004 because my job was physically demanding and involved frequent overnight shifts (paramedic supervisor). I made it through six years from diagnosis before I had to step back due to fatigue and find less demanding work on a part time basis. That choice was emotionally very difficult because I loved the work and truly enjoyed patient and employee contact.
My advice, 20 years after diagnosis would be: take care of your body, listen to what it tells you, sleep well, eat well, exercise and find joy in your life. Our plans aren't necessarily the Lord's plans for our life!
I worked for five years after CLL was found. i stated at age 70 and after talking over wiith my wife i reduced my hours to twenty per week. I worked as an engineer and could avoid contact with a large number of people. It did help me keep my mind off the CLL. I am noe 80 and still on W & W.
Retire if you can afford it. It is the best job out there. There are plenty of opportunities for things to do that will keep you gainfully occupied. Start kicking at that bucket list.
Hi claretsauce. My husband was diagnosed almost two years ago and was a teacher. He will be 71 in December. His lymphocytes never plateaued like we had hoped and really shot up in the spring after he got a bad cold. He had become very weak woozy and tired. He began ibrutinib last week.
He decided to retire in June. We had already retired once. I was widowed when we met. We both felt life was too short so retired but both returned to work! Now it is time though. God made it so we must slow down and spend time wisely.
Ultimately it’s up to you but if you can retire, it’s a good gig. Carefree timelessness! I also see the benefit in keeping busy and productive. I guess the balance is if you do retire, plan to continue being productive in some way. Volunteering, hobbies, travelling. I feel better with him home because had he not been around sick kids he may not have gotten so sick and tanked like he did.
Both physical health and mental health to be considered. But physical health may trump in this case to be away from sick kids.
My thoughts. May God bless you and help you make your decision.
You have no idea how much this reply means to me. Thank you! As noted, I, too, work around children...small ones with constant runny noses and sick tummies. I, too, was a widow when I met my husband and I have a very honed awareness of the preciousness of time spent together. So, your words mean a lot to me Shalom33. Thank you. Blessings to you and your husband. May you continue to enjoy this time in your life.
Im not a teacher....I'm "office lady"...I do everything BUT teach. HA! Part time not an option right now so I'm still thinking. I thank you so much for taking the time to reply. I appreciate it so much. It is so nice to talk to folks who "get it".
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i am so happy I found this website and get so much out of all the collective wisdom! Thank you.
Effect of CLL on common illnesses
Lymph nodes that are multiplying 
