Hello, new to group

[SeaOtterGirl]

Hello, I've been reading posts here for a few weeks now and I really appreciate the support that is everywhere in this group. I was just diagnosed with mets to my spine and bilateral iliac bones in the past month. Still waiting for gene sequencing results but have almost completed palliative radiation to my right hip and have had my first fulvestrant injections (I'm not a fan!). I still have pain in my hip with any significant walking or stairs at all but I know the radiation effects may take a while to kick in still. I am a health care provider myself and work shifts of 13-15 hours so have been off from work due to pain with walking, as well as due to emotional upset and inability to concentrate. Curious about how folks in this group decided whether to continue working, and how that has been working out for you.

I have a mom who is close to 80 who lives a 5 hour drive from me, a 21 yr old daughter who is in college overseas (I am in the US) and an 18 yr old son who is about to graduate high school. I also have step daughters who are 22 and 19 and who are working and in college, respectively. I have an amazing husband with his own chronic illness. I have incredible siblings, inlaws, and friends all around the country. I want to spend time with them all and feel that there are no guarantees. I am already 7 years into this breast cancer "journey" (I wish I had gotten trip insurance!) and the fact that my cancer metastasized while I was on anastrazole feels very unfriendly and foreboding to me. Trying to stay positive and hopeful. But also want to be realistic.

I've worked through two prior episodes of cancer, two c-sections, long term depression/anxiety, a kid's severe mental illness, and as a health care worker during COVID. I have worked and paid into SSI for many many years and I pay for LTD insurance. Why is it so hard to decide to stop working????? Thanks for sharing your thoughts.

[fancydog]

I was an RN and deciding to leave my job was a very hard decision because a lot of my identity was tied up in that role and I loved it! But I could not stand being too fatigued to work or calling in late and putting pressure on the people that would have to try to cover for me. Going part time could not fix this in my job.

[SeaOtterGirl in reply to fancydog]

Thanks, Fancydog. I’ve been a PA for 20+ years and currently work in Trauma Surgery and that is exactly my situation. Did you try going to work after diagnosis and find it too hard or decide then and there to go out on LTD? Thanks for sharing your experience.

[fancydog in reply to SeaOtterGirl]

I had planned to keep working but it became apparent quickly that I could not work a schedule that the job required due to numerous dr appts early on, plus dealing with side effects of IV chemo.

[Nocillo]

Sorry you are having this dilemma. If it is financially possible, I would leave the job. I was to start a new job the week after my diagnosis and immediately told them I couldn’t do it. I’m still wistful about it sometimes, but the ensuing fatigue I suffered would never have permitted it anyway. The freedom to take care of yourself and travel and visit is a true luxury. The fatigue drove my decisions frequently. You would also have time to pursue hobbies and activities that are fun for you. I’m a huge proponent of enjoying life outside of work! Good luck!

[SeaOtterGirl in reply to Nocillo]

Thanks for your kind reply Nocillo. I know that only I can make this decision but I too always say that I work to live, I don’t live to work. I do enjoy my work and my patients and coworkers but there is more to life! I realize how privileged I am to even be asking this question! Best wishes!

[MettavivorDS]

I stopped working after my second metastatic recurrence. I’d been doing fine on Letrozole and Lupron for 6 years and had no evidence of disease for 5 years. Then, there was a new spot on a different bone. My husband died a few months after my new treatment started. After he died, I applied for disability. That was 2 years ago. You will know when it’s time. There’s an expedited review and approval process for social security disability when you have metastatic cancer.

[Yikes123]

Among your legal rights are the American with Disability Act and the FMLA. The former requires the employee to ask for reasonable accommodations like flextime or less lifting. Submit a written request to HR. FYI they must have a dialogue with you. It’s illegal to retaliate against an employee who asks for a reasonable accommodation.

The FMLA gives up to 12 weeks of intermittent or blocks of time to take off. It runs concurrently with the ADA.

These rights can give you time to assess your options.

Good luck.

[Yikes123 in reply to Yikes123]

PS The FMLA leave is unpaid after you use up any accrued paid leave

[Discocat]

Hello SeaOtterGirl

If you've been reading recent threads you will know that there have been some discussions about our coping mechanisms.

Although I've posted about keeping an air of normality to my life....I've also mentioned that I've made tweaks to reduce stress and complexties wherever possible.

I decided to stop work when I was diagnosed as for me that was one of the stresses I could do without. I also found I initially had a lot of brain fog and general fatigue that I think was due to the fast induced menopause....We're about the same age, I was 50 at time of diagnosis.

As I'm an interior designer my jobs involve managing many various work crews, budgeting and talking to clients....all things I found hard to do with a fuzzy head and not being able to sleep properly from the hot sweats etc.

As a creative person I still do artistic hobbies and small scale design projects for friends and family so I do still feel I have an outlet for my creativity....but I do not have the pressures of general work commitments.

Although I've found my symptoms have reduced and become more manageable I do not regret retiring. I have more time to myself and I am more relaxed....apart from the obvious culprit!!!!

It's possible to stop work but still do the parts of the job that you enjoy on a smaller scale....As a health care provider (sorry if I've got that wrong but I'm taking that from your description of work during covid that you've mentioned) you could maybe do some selective voluntary work or community projects??? Or just have more time to see all the kids and family that you've mentioned?

It's ok to adapt....it doesn't mean that your giving in...your actually giving yourself more perseverance....well at least that's how I feel myself.

Take care....there's no right or wrong here just do what you believe will make you happier in the longterm.

Love

Zoe xxx

[SeaOtterGirl]

Thanks all for your kind replies. I appreciate all of your perspectives as well as the nuts and bolts info. My husband is an HR and employment law guy so I have an in house expert 😊 I’m becoming more confident in thinking about taking time to focus on wellness as I navigate treatment and learn how to thrive as much as possible. I had great mtgs with my oncologist and with Palliative Care this week that have me in a good headspace. So glad I found this forum. 💕