I'm new to this site but have already gained a vast amount of knowledge and feel a sense of support from reading the posts and engaging with your stories. I received all my test results, genetic/bloods etc and confirmation of CLL back in Dec 2021. I'm on the Watch and Wait journey!
I work for the NHS as a specialist occupational therapist. Work and Occ: Health have been amazing. I'm currently working from home with no patient face to face contact. I have an Occ: Health review booked in April with plans to hopefully return to some 'normality'.
I feel fine, other than frustrated with a few work/lifestyle changes, plus what I like to call my 'emotional roller-coaster' with acceptance of CLL! I have my next 3 monthly bloods and Haematology clinic review booked in for June, I'm waiting an appointment for the 4th Covid vaccination.
Any advice and guidance on work related topics (returning to work etc) would be great, especially from any NHS CLL colleagues out there!
Thank you in advance.
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MDcard
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Thank you. Yes, I'm sure I have many skills to bring to this area of 'condition management and coping' I work with cardiac Pts who have various cardiac conditions, I run sessions on fatigue management, stress and coping and funny enough returning to, remaining within work! Practice what I preach I guess! Although this CLL has opened up another new (huge) area of condition management, monitoring and precautions for me. This site is amazing though for support and education. I've also picked up on a few webinars. Best wishes x
Thank you. You clearly bring a lot of experience and expertise to our group. Excellent.
Fatigue is a biiiig issue will CLL. Cytokines and deconditioning as a result of bone grinding fatigue- which I have had my share of. I work so hard to counter its effects and progression, yet, day 6 of cycle 1 FCR it all evaporated and I felt normal. It was quite a pleasant surprise.
Hi. Watch and wait 6.5 years. In this time I’ve worked with young children and also patient facing NHS job. Shielded of course in the pandemic but am back on the wards now.Covid aside, I’ve worked as normal. I asked my consultant when first diagnosed as my work demanded very close contact with lots of potential threats. He said we’d assess as time went on and I’m still working as I did, just maybe a little more aware.
Thank you, I work for cardiology within a community cardiac rehab setting (covering various borough areas). Covid enabled us to set up a virtual service (overnight), so I've continued with this for now as part of my working from home plan. My manager is so proactive and linked in with Occ: Health from the start, they have both been great. I do miss the face to face Pt contact though. Hopefully back to normality after April, like you said being much more aware. Best wishes xx
Welcome. I retired when I found out I had another cancer. My first was thyroid cancer. At the time I decided it was time to have some fun instead of working all the time. I now wish I had just cut back hours however you never know.
I remember the emotional roller coaster ride, mine was gone after a year or so. It really helps if it is validated. Watch and wait lasted 7 years for me although past labs revealed I may have already had it over 12 maybe 20 years. May you have a long watch and wait.
I hope you’ll pardon my threadjacking, but I’m so curious about why you wish you’d reduced hours rather than retire outright?
I’ve only recently been diagnosed with CLL and I’m relatively young (47) but find myself thinking a lot about how much of my life I spend working, and fantasizing about a very early retirement.
Figuring out the financial side of things certainly isn’t simple but it seems straightforward. It’s the emotional part I get stuck on. Will I be bored? Will I be lazy? Etc. Would love to hear your story, if you don’t mind sharing!
2012 At the time my doctors ( I went to several) didn't know which cancer I had. My father had died and my mom was dealing with breast cancer (which she beat and lived to 96) I was helping her from 2 hours away driving back and forth, at times bringing her home with me for a few weeks. My husband had to retire due to chronic vertigo. My younger son was having issues. I am a nurse and was working a lot and taking classes as nurses do.
I finally was diagnosed with Cll and went into the watch and wait. Another cancer was the frosting on the cake for me.
I was thinking I needed to take care of myself and like you have some fun. I learned about the plant-based diet from Dr. Oz (TV) and joined a group at my healthcare. I joined another Cll website (the only one I knew of at the time). I learned all about Cll and meet some wonderful people.
I became a gray whale docent during the whale season for a few years.
Then for exercise, I joined a dance group that performed 5 shows a year at a local theater. They retired the group after 50+ years and it was about that time the fires started here in California. The fires affected everything.
I wish I would have cut back on the hours because through all this I have missed patient care and the comradery of my co-workers. I would have had to retire when treatment started anyway, 2019. Especially after covid started.
I spent the Covid lockdown watching remodel shows and last October started the remodeling of our kitchen, breakfast nook, and dining room. We just finished in January.
The remodel was a story in itself. lol
That is pretty much my story, I left out a few details. It doesn't take long to fill up your days however now with the Covid over our head we are limited to what we can do since we are so susceptible.
Thank you for sharing your story with me, I really appreciate it! I enjoy my work, but I feel like work has been something I do to afford me to do things I really love at some vague point in my future, and now I’m wondering whether or not I’ll ever get there.
My grandfather used to tell this story about a man, who, after working for 60 years, finally retires. With his newly free time, he decides to go fishing. He heads down to a dock and sits. There’s another man fishing next to him, so our retiree says, “I worked my whole life so I could sit here and catch fish.” And the man next to him says, “I never worked a day in my life so I sit here and catch fish.”
For me, the fishing equivalent is spending actual quality time with my husband and children, instead of the transactional existence we seem to have at breakfast and over dinner. My aging mom and only sister and her family are all on the east coast (I’m in California too) and I miss them. We moved here for my job - I work in Silicon Valley - and if I didn’t work in tech, frankly, we wouldn’t live here. So for me, work isn’t just a paycheck - it defines a lot in my life that I will want to change eventually.
On the very heavy other hand is health insurance, which is provided by my employer. If I retire young, I’ll have to pay for private insurance, and that’s not cheap. Plus - now that I’ve been diagnosed with CLL, I wonder if I’ll have a harder time getting insured?
I’m on watch and wait and so far I’m in very early stages and mostly asymptomatic, which is great. But it also means I’m not sick enough to qualify for a paid medical leave, so if I want to enjoy my life BEFORE I get sick or old, I’m faced with some tough choices.
I am considering just taking a bunch of PTO - I could probably swing a month off just using the vacation and sick time I’ve earned. And that’s not nothing, but I feel like I’d like more than that.
I guess there’s no easy answer. I know I should count my blessings that I’m feeling well and I have a great job and health insurance. But I’ll still fantasize about a world in which I can just spend my days playing tennis and cooking good meals with my family all around me.
It sounds like you have a great job. 47 is very young and I don't know your situation, that is your hard discussion to make. You may never need treatment, have a long watch and wait or need treatment next week. There maybe a cure around the corner, we never know.
Going over old lab work I did have Cll for probably at least 12 or more years before diagnosis. It has been 10 years since diagnosis. So that ads up to over 20 years with Cll. I was very active until I came down with Legionnaires disease which triggered treatment. Alacabrutinib has given me a normal life.
I often wished I didn't know because knowing changed my life. I did spend quality time with my mom and family.
However, health insurance is very important for all the testing and treatments. I was lucky to be able to retire with health insurance. I would have had more income if I postponed retirement, however, we live comfortably.
Hi welcome to the family. I have worked since diagnosis in November 2015 with a few breaks for treatment and obviously Covid. I have had several conversations with my employers not always positive but once they became aware that they are obliged to make reasonable adjustments for me and that i am covered by the Equality act they have come around somewhat. I was off for four months with Sepsis a few years back and had a phased return to work slowly building back up to full time which was a good move. best wishes.
You need to get to a hospital immediately as sepsis can move quickly and be deadly. Treatment includes IV antibiotics and fluids. I’m uncertain what else is involved and hopefully I will never find out😁.
I contracted it while in my local Hospital. I was bedridden barely able to walk and unable to eat as my throat was very inflamed. I had an antibiotic drip, saline was also inserted regularly through the cannula to avoid dehydration and a food tube was inserted up my nose and down into my throat and was constantly monitored. Not the best experience of my life.
I am retired and was already when I was diagnosed. However, I worked in local government in a face to face customer service role. I think that I would have requested a move to back office because I really don't think that I would have felt safe being close to potential infections. I don't wish to sound unkind but many of my customers had, shall I say, less than acceptable personal hygiene and bless them didn't think twice about coughing and sneezing all over us. In those days we did not have the protection of desk shields etc.
MDcard, I'm still working, too. I try to only use my desk phone. I carry a disinfecting cloth if needing to use another's. If a coworker or client appears sick, coughing, sneezing, I put forth as much effort as possible to stay out of common air space. Take care of your overall health, good diet, with few cheats(I love my chocolate!), drink plenty of water, EXERCISE for sure, and work at getting good sleep and needed rest times. I do take D3, C, B, Milk Thistle, all OK with my doctor. I'm 73, W&W 4 years and counting! We CLLers have every right to pamper our bodies. 🙂 Sandra
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Fmla...cll and ft work
Need extensive dental work- any precautions for someone with CLL?
Symptoms not characteristic of CLL and worked up exhaustively. Sound familiar to anyone.
CLL 
CLL
