How does anybody get any work done during this?

I found that I could work with a stage 4 diagnosis for six years, but eventually I came to a point where I realized that my focus and attention span were shot, and that I could only pay attention to things I really cared about. My last year at work was this one, with the pandemic, and it was mostly spent on FMLA leave. I applied for SSDI, and after ten months, I started to receive disability checks, and that, along with my retirement savings, are keeping me afloat for now.

I have read, don't ask me where, that micro-dosing Ritalin can help a lot with focus. Also, yoga and meditation. You're right that the young, with their energy and lack of other obligations, are often unaware of the struggles of working while handling an illness and childcare duties.

Nola, my only advice regarding work is to let the dust settle, give yourself time, and see how you really feel about working. A stage IV diagnosis can vary a lot between people: while some people are able to work for a long time with minimal time off, others are not. It really depends on what your cancer is up to, where your mets are, what your job entails, and what treatments you need to be on. At this point, if you are feeling basically well and up to it, and if working helps you, then by all means keep working!

On the other hand, if you ever reach a point where focusing your energy on family and self care becomes a higher priority, that is a natural and understandable evolution too. I made that crossover myself somewhere along the line. Unless I get back to being NED by some miracle, I do not see myself returning to work at this point, but I am happy to have the time to spend on other areas of my life. It is the right thing for me now.

It's funny that you bring up that old adage because I've considered it as well. I wish I had worked harder and made smarter moves in my career. The thing that is really bugging me is the thought that my career will end where I currently am, and I am not happy about that. But golden handcuffs... It gives us the money to save and invest and still live well here, pays my fantastic insurance so I can access US level of care, has a ton of social care interest so if I did go down to long term disability my job would be secure. But I'm not really happy with what I'm doing, and we are far from family. Then it's like we'll what if I'm a treatment outlier and then in 7 years I'm still working there? I think that would annoy me more

I always wanted to start and run my own business but got caught on what that would be. Now its something that eats away at me as the one thing I really want to achieve before I go. It doesn't have to be anything major it just has to be mine. So that is something I want to get going in the next 6 months.

But Buttons is right, give the dust time to settle and get the lay of the land, think up contingencies based on when you think you may want to retire and get up to speed on investment options.

Hi Nola,

You have received some excellent advice. First I would like to echo the others in saying don't rush into any decision. You are so new to stage IV that it is completely normal to find it incredibly hard to focus even without the ADD. You need to give yourself time to work through this early phase of appointments and medical decisions to implement a treatment plan, allowing yourself to breathe. When I was first diagnosed as stage IV I went on sick leave on the day of my first MO appointment. I was convinced that I had at most two years (Dr. Google was not particularly encouraging for those with pleural effusion - don't listen to Google). My MO told me that day that he expected me to do well for a good long time.. okay... regroup. Once I had the fluid drained from my lung and a PleurX catheter inserted to make it easier to drain on a regular basis, I realized I REALLY wanted to go back to work. It wasn't like I was spending my time at Club Med (not to mention that it was January...) - staring at four walls was not helpful.

It took me a few weeks to get back to full time as I had to negotiate the gradual return to work required through our health plan but after that I continued to work full time at a demanding job for almost four years. During that time, with the exception of appointments and scans, I logged less sick time than most of my much younger colleagues! Having said that, it did start to become more of a slog by the end of 2019. Part of that was likely due to the addition of Verzenio to my treatment plan. As others have noted, your treatment will play a role in how you feel about work depending on side effects. I was finding that I was completely exhausted by the time I reached my vacation days and then in the fall I had an issue with headaches related to bone mets in my skull and cervical spine. At that point I knew that it was time to consider scaling back my hours. More recently I received more news of progression which may lead me to go on full LTD, now in my fifth year with the diagnosis. That's still a maybe but with some other changes at work it seems like a good time.

All this to say, give yourself some time to figure it out. There are many treatments for ER+ disease that have very limited impact on our day to day lives, allowing us to liver pretty normally. Your body will tell you when you need to consider stepping away. And you will also know when your priorities have shifted to a place where work takes on less significance. (I've gotten to that place where I am losing patience with some of the "stupid" and, quite frankly, my filter is a bit broken!) I also get the income piece which is why I worked for as long as I did. While we all can likely scape by on less, there is something to be said for the freedom that a good income provides. I have been able to stress less about doing or buying what I want which provides its own piece of mind. (And your list of things you want to do sound pretty reasonable to me!)

One final comment, you noted at the beginning of this thread that you were considering moving to a company that had better insurance benefits. While I don't know the American system well, I would be cautious about making a shift until you have checked out how it will impact you. Unfortunately, once you are diagnosed it will be a pre-existing condition on any new policy and you may not be covered. Just something to be aware of.

Please take good care of yourself Nola and don't hesitate to reach out to folks if you have any questions. Sending hugs from Canada! Pat

I think that is fair, moth, though I don't necessarily think those stats aren't out of mind at any time for most of us. I agree its foolhardy to singularly believe just because someone else got years and years that I will too, but at the same time just having the balancing weight of "going to work" every day right now is helping to keep me from going completely insane with the shortened lifespan knowledge, and I can sort out what I need to do to stick the landing at the end of life. There will come a time when work will no longer serve its purpose and I will know when that is. Besides, with the pandemic it beats staring at the walls all day long!

Nola. I'm so sorry you were subjected to that. You are right - that is totally inappropriate and you need to give it to him with both barrels. Perhaps in writing? I find that is frequently the best approach as it provides a record of your concerns. I wish I had better advice regarding your current job. You're in a tough position right now and need time to wrap your head around treatment plans etc. As you said, the last thing you need is someone pressuring you for answers you don't have.

Moth, I totally understand where you are coming from with your post. Trust me, I am a pure realist and a planner so am prone to mapping out the trajectory, making decisions based on this. I know that my timelines just got a heck of a lot shorter with my recent progression. However, it's a struggle to know where we fit with imperfect and often incomplete information - we are not data points. It's tough to use the "science" when we don't know if we will be in the 80% that succumb or the 20% that carry on longer. It's particularly challenging with new treatments coming on line all the time. While, progress is not as quick as we would like, progress is being made. As an example, that study uses data up to a decade old, long before the release of the CDK inhibitors which have been shown to have a positive impact on OS (and will likely be on the list for Nola's early treatment given her HR+ status). Ultimately I feel the best we can do is to continue to carry out internal "gut checks" to assess how we are feeling and where our priorities lie at any given time.

Nola, I'm so sorry to hear what your boss said to you, and it looks like you just got your IV dx on 2/22 so it's still all very new. If your company has an HR department, I would be in there so fast your boss's head would spin. What he said to you was out of line and he needs to be reported for it.

OMG Nola. That's unbelievable. I'm so sorry you have to deal with this. I agree... don't make it easy for him! Unconscionable.

Nola, wow. Just wow. People can be such jerks.

I hope on your behalf that this comes back to bite him!