Hi all - wanted to get others experience re work and having treatment. I’ve managed to work since 2020 with different oral meds & fulvestrant but now I’ve started IV, I feel full- time work is getting too much.
I definitely don’t want to stop work as I enjoy it and it keeps me sane, I don’t want to go off sick because I feel I can physically continue, I’m thinking if I reduce my days that could be the answer but then I will feel it financially….I’m in a blah place!! New normal landscape is changing 😏
N x
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Ntash01
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I’m on IV chemo too and I rest a two-three days, then I work. I think here in Italy things are different, I can stay at home as long as my NHS doctor thinks is enough and I receive full pay (money comes from health public funds)
I’m based in the UK I can go off sick and get full pay for a period of time (I think!). My BC nurse wasn’t happy that I was working during chemo so I definitely could get a sick note from onc and go off on full pay.
Hopefully, I can reduce my hours and reach a good compromise. I’ve been a long serving employee, hopefully that counts for something.
Thanks so much for replying and I hope you are doing well on your treatment.
Hey there, I'm four years into this and I "retired" this year. My second IV chemo - Trodelvy - is just too much for a full time job and I was owner of half the business. Thankfully, a nice lady bought my share of the business (no life changing $ but freedom). I do get bored and my husband is tired of me rearranging the house so I have started to volunteer a little and go visit my father in memory care more often. Also trying to read more books and stay off the internet.
My docs never said to stop working - they want me up and moving - exercising and being busy. I just finally couldn't be at work and having to use a public toilet if I felt poorly. They feel that being active keeps us going.
Like you, I would definitely have to find something else to do if I left my job. I think my BC nurse was concerned about me picking up infections- I’ve been suffering with flu like symptoms for around 4 weeks now which is not helping me at all!
For me, I’m just a naturally active person - not gym but jus my generally moving, I recently had a UTI, so I understand the ‘loo’ issue and reasons for you retiring - it was exhausting! You sound like your decision was the best for you- I am definitely leaning towards working less and try and get a balance! I’m on Taxol and have read people function well on it, so I’m trying to give it a fair chance.
I'm sorry you are faced with this difficult decision about work and also that you had to switch to IV Chemo. I hope this treatment will be very effective for you. I'm sure that being able to keep busy would be a good distraction. Here in the US many people have worked remotely since Covid and have not returned full time to the office. I don't know if it is the same in the UK. Would that be an option for you on days when you are not feeling so well and then go into the office on days when you are doing okay? I hope you can reach a compromise with your employer. Sending you hugs and prayers.
Good idea re remote, but I’m a teacher and after Covid it’s not possible as it’s not beneficial for students. I’ve actually been looking for remote opportunities elsewhere recently but I’m wondering if it’s worth starting fresh elsewhere given the circumstances. So much to think about!
Thank you for your kind words, I too am hoping IV knocks things back and they get me off it on something kinder (not sure if it works like that) at the moment I don’t have an end date, that’s hard! I do hope your treatment is going well x
Hi, it’s a difficult decision for sure , particularly if you’re in US.
I’m still on the oral drugs and working full time (40-60hours a week as it’s very busy). I was approved for full time remote work because I’m in the wheelchair. Otherwise I’d have to go to the office 3 times a weeks.
It’s really exhausting, but let me shift the stress to work topics.
I have some sick time and vacation days that I can take as needed.
Don’t want to go to the part time (money issue) and afraid of insurance and financial issues when I’ll no longer be able to work.
Unfortunately in US I’d be eligible for Medicare 2 years after applying 🥲.
Hope you can make the decision you’ll be comfortable with.
Hey Tolife…..40-60 hrs per week makes my eyes water!!! So glad your able to work from home but I’m sad by reasons that allow you to so. I’m thinking things will get worse at some point - that should really be the point I lessen my hours or just give up. At the moment I’m hanging on to my as much of my ‘old’!
I worked for 6 years after being diagnosed with MBC in 2016. For 5 of those years, I was NEAD. When a new metastatic spot appeared on an iliac bone in 2022, I stopped working. I'd been on letrozole and Lupron which worked well for 6 years. Now I'm on fulvestrant and Lupron as hormone therapy as well as Zometa to strengthen bone and and treat the met. The cancer has been stable for a year with this medication change.
After my husband died in December, 2022, I applied for disability. It's an automatic approval in the U.S. for those that apply with metastatic cancer. In my case, I'm learning how to single parent a 14 year old who misses her Dad and do not have extra energy to give an employer. It's better for my daughter that I don't work anymore.
If you're still feeling well enough to work and enjoy it, there's no reason to quit, just yet. Your quality of life and intuition will tell you when it's time to stop.
Congrats on being NEAD for that period….dream words, so sad that changed but happy your stable on your new treatment. Funny thing about your time line - I was actually thinking I want to walk away from work after 5/6 years (god willing) as I’m certain I would be ready to. But if I went through the same loss as you - I would do the same and be there 100% for my daughter, I wouldn’t have to think about that twice. So sorry for the loss of your husband 😔
Thank you so much for sharing the good and bad… I’m definitely in tune with my intuition and my body and I don’t think now is the time to quit. I pray you remain stable on your meds - after initial shock of how they administer fulvestrant, it was actually was one of my favourite meds
I am in the same place Ntash. If I continue, it is more stress, but it keeps me going. I have a purpose, people are counting on me. If I stop working, I too will feel it finanicially. I also teach and online now since the pandemic, so that makes it easier and when I am in pain, I fight to get up, because then I says I can rest before my next class. It's been nearly 10 years with my client and since I work for myself, at this stage in life, I do not think I would be able to find another job at the same rate. I am going to see what my options are next Friday with my accountant. It makes a huge difference also when you can make your appointments without conflicting with work schedule. It is normal to worry about others, but you have to think aobut yourself first. On another note, how are you feeling? Is taxol working for you? Any major side effects? Hugs
So true with our stage in life - not worth starting new! My work schedule allows me to go to my appointments- but I pay the price…. Very little admin time when on site and when off site no energy or just spending lots of time at the hospital so catching up with marking ect accumulates. I’d love to swap to a desk - might see how that would work I’d defo have more flexibility and could work remotely. I’ve sent you a PM x
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