Sending hugs @rockvillemom. I hope you have an enjoyable, peaceful weekend. And I would hope that management would understand and agree to hire some temporary help to see you through this period.
194 Maybe post updates on caringbridge? It might be tougher to keep people from asking in an office, but worth a try. Hugs to you, rockvillemom.
Since my last post it has become clear that you are WAY over-stressed. You have done a lot, but you cannot single-handedly save her. You cannot work two jobs, much less deal with your parents.
I’m wondering if it might help you to call or email someone in the patient advocate/social work area in the melanoma practice at JHU and convey what you know about her situation, and tell them that you cannot handle it any longer. At least you would know that someone in a position to actually take care of things like helping her to apply for SSDI would be in the know. Then step back.
Would a temp actually be of use at work, or would it take more time than it is worth to direct them? Are there some parts of the two jobs that you could peel off for a temp or someone else to do?
Can you circulate a memo that says that you will inform everyone if there is any change in her condition, or just tell them where she is and let them visit her, send cards or flowers, whatever? Or can you just put the word out that you are finding the situation very stressful and ask people to restrain themselves from asking you how things are, despite their well-intentioned concern, etc, etc?
Eat lunch. Maybe take a break and walk outside for 10 minutes.
All the best to you.
@rockvillemom I’m so sorry. I hope you can find some peace this weekend.
Thank you so much for the support and suggestions.
She does have a CaringBridge and I have forwarded the link to anyone who asks for it. I think people at all levels of the company are trying to understand where this is going, more so than the day to day. Do I think she will come back? Do I think she is going to die? I cannot predict the future and speculating whether she is going to live or die is ghastly. I generally keep my office door open, but am now instituting do not disturb closed door mornings. Anything work related will come through email and I think this will help me stay more focused and less emotional.
Had conversation with her cousin last night and explained my limits. Emailed her a list of ideas and suggestions, including many from this thread, and indicated I have to downsize my role. She does not want visitors at this point, so I just text her and check CaringBridge and that’s it for right now. I may get more involved again depending on what happens next, but I need a break.
Not a fan of temps. My experience has been they are either not very good, or if they have potential, they leave quickly for a job offer. I think I just have to manage for the next 10 weeks with the limited help I am receiving, and then mgmt will have to make a decision about a more permanent solution. I’ll see how it goes, if I have another day like yesterday, I will wave the ehite flag.
TGIF!
An update and a question.
Her new treatment at JHU is going well, but with a real paradigm shift. There is no discussion of cure. The focus is living with advanced melanoma and bone cancer. She is receiving immunotherapy every 3 weeks with the understanding she will most likely continue this for the remainder of her life. She will be on pain mefication for the remainder of her life. She is halfway through a series of 10 radiation treatments to shrink the tumor on her spine and decrease her pain.
I’m wondering what people with more experience in dealing with cancer think about this. I’m torn. I guess this approach is more realistic, but it is also sad.
She is in pretty good spirits, focused on enjoying what she can. She is using a walker in her home and a wheelchair for medical appts. She is back living on her own in her old apartment and seems very happy about that. She sleeps in a chair, leaning forward with her arms and head on a table, which sounds awful, but at least she is sleeping.
She will have updated testing in March to see if the tumors are shrinking.
I work at a lot of companies and honestly, see a lot of resistance to temps. Often the people who would benefit the most have the most trouble accepting the idea. But I have also seen a lot of very good temps who stick with the employer for some time, and provide a lot of relief for overworked staff. I’d really, really encourage you to pursue this with your bosses.
I have often seen patients who focus on quality of life have better outcomes and actually live longer than those trying to pursue aggressive curative treatment.
I’m glad your friend is in good spirits and treatment is going well.
It is sad. But there are studies to show that most people value quality over quantity of life. And some want life no matter the cost You can’t predict who will take which position. If someone has grandkids for one extra day they’ll fight for it for example.
Their decision may never align with what YOU think would be best. It is a decision that belongs only to the patient.
It sounds like they’re continuing the best available treatment but just don’t want to sound too hopeful for a good outcome.
I have a friend with stage 4 bone cancer. I do not have a ton of information but it’s been 4 years now.
She recently asked what they thought her life span was. They couldn’t answer as there are so many different treatments and new treatments that come up. She could live with this for years more. She has one treatment and then another, rinse and repeat.
Another friend, her son has bone cancer. She’s a nurse, and said that his cancer will never be “cured” but can be managed for quite a long time. To be clear, her son is my age.
From my limited understanding, bone cancer is a little different than some other types. It’s never cured but there isn’t a finite end stage either.
I thought I’d answer @rockvillemom even though my experience is very limited.
Best wishes…some people’s beat cancer miraculously and other’s do not.
36yr old female friend is on hospice now.
35yr old male friend died last year glioblastoma.
As everyone says cancer sucks!
I’m going to view it in a positive light, living with cancer, as opposed to dying from cancer.
It has been a while since H had cancer, but I recall being suspicious of anyone who said “cure.” The serious people said “five year survival rate” and were careful not to say “cure.” A friend with stage four pancreatic cancer is being treated as though she has a chronic disease with the goal being to get her back to doing some normal life things like work.
They’re doing her a favor. Yes anything can happen but in the meantime if they can lessen her pain and help her sleep that’s a good thing. Now I hope she has a plan for down the road when living alone isn’t feasible.
I was a temp and I’ve hired temps. Looking back I was the best temp ever. Lol. I learned quickly and worked hard. The temps I had were total disasters. I’d only hire for menial big projects like stuffing envelopes, answering phones or making copies.
I know someone living with stage 4 ling cancer (nonsmoker/healthy lifestyle, btw). The tumor shrunk some but a few years later he is still taking the pill and hopefully will for years to come. He was in much better shape when diagnosed than your friend- working and running distance races well. That TV ad about “the new normal” has it right. Today cancers can become chronic diseases without being cured. Many factors determine the new lifestyle.
I suspect your friend will not work in your office again and you need to move on in the workplace- look for a permanent replacement. You can embrace any small steps in comfort/pain relief with her and still be part of her social network. It is important for her (and you) to maintain connections. New hat- friend- while discarding the old (looking for best options). Looks like she is plugged into the system and you need to embrace the situation for your own mental health.
My friend was diagnosed with an aggressive stage 4 breast cancer and given 50% or less odds of living a year. She had all the recommended treatments and is still going strong now many years later, passing her 5 year survival landmark year back.
My SisIL had an aggressive stage 4 cancer that had metastasized in many locations so it was a bit hard to figure out where it started. She was treated and really wanted to see our S graduate, so she made it to his graduation. She had a pleasant remission for a while and was able to go to movies and see those she loved, as well as all the movies nominated for academy awards. She lived 5 years and was comfortable most of it.
@rockvillemom From my POV as a person currently in treatment for cancer with immunotherapy, this is great news! There is nothing sad about it
She is far more comfortable and has a well-designed treatment plan. They are taking aggressive and likely effective steps to address the source of her pain, immunotherapy is one of the most advanced forms of treatment for metastatic cancer that there is, and side effects are most likely extremely mild in comparison to chemotherapy. No one has given up on her! What someone with advanced cancer needs is not a lot of wild and crazy talk about a “cure” while meanwhile the person is racked with pain and desperation and has no idea what is going on.
“Chemo (or immunotherapy) for life” is not that unusual. The goal is to deescalate cancer into a chronic disease. If the treatment succeeds even further and the person gets to NED status, so much the better. It’s not an all-or-nothing proposition.
With my kind of cancer, the use of Keytruda is new enough that if it works, they currently just plan to keep you on it for up to two years unless you develop some kind of intolerable or dangerous side-effect. At some point they will probably figure out when it is safe to stop, but that’s not known yet with colon cancer. (That’s just one available immunotherapy, there are several others.)
I hope that JHU has also helped her get her financial situation sorted out. Immunotherapy is even more expensive than chemo, about $11-15 thousand per infusion, every three weeks. Your company’s insurer is likely to hike their rates substantially if there are a few such high rollers on their plan.
I’m wondering if this was the actual message her original doctor was trying to convey, but failed to communicate. Studies show that doctors are bad at communicating bad prognoses. Moreover many patients want to believe their proposed treatment is curative even when it is not and the doctor never says it is.
In any case, she sounds like she is getting the right treatment now and understanding what is going on. This is great.
It is great that JHU is trying to reduce/control her pain and she’s able to get more sleep!