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Topic: Long term disability = the end?

Forum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Nov 26, 2019 04:27AM

AdrianaP wrote:

I have a very close family member who was diagnosed stage IV in 2016 with mets to bones/liver/chest wall as of now. Still on her first line of treatment but it doesn't seem to be working as well recently. She has worked full time up until this point and her career has always been very important to her - she's the kind of person who likes to be busy and challenged.

However, she's recently made the decision to leave work and go on long term disability. She does have a very stressful job and a difficult commute which I can only imagine is completely exhausting and overwhelming at times. I don't know how she's managed for this long really.

But I don't know how to feel about LTD. On the one hand, I'm happy that she won't have the stress of her job and I'm hoping that she'll have more time for self-care, to rest, to take up hobbies or do things that are important to her. On the other hand, there's a part of me that thinks this is just the beginning of the end - that now she's no longer working, she'll feel purposeless, or that disability means her health has gotten so bad that it's just sooner rather than later that she'll die.

I guess in my head I think "leaving work forever = not what most people do = death is soon."

Is this totally irrational? I haven't said any of this to her obviously and I'm trying to be supportive, but I'm scared.

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Nov 26, 2019 08:39AM ctmbsikia wrote:

It's a little irrational in the sense that you are not the person with the disease. Family and friends need to realize that the patient can still make their own decisions. The stop working = death is soon, is totally irrational. I hate that our society has people believing this when the actual truth is none of us get out alive and it's of no matter the number of years we worked or didn't work. I understand the worry and fear, but better to be positive and supportive.
There are still many treatment options for Stage IV when one stops working.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Nov 26, 2019 10:36AM illimae wrote:

I stopped working a very stressful job over a year ago. Early on I was bored and missed it but I made other things my new job, like relaxing, going to the gym, traveling. I am nowhere near the end.

To me, her decision only means that she is done compromising her health for others and she’s making herself the priority.

However you feel about it just remember that you are not her, your feelings are based on your own fears and assumptions. It’s best to be supportive and save any opinions you may have until you’re asked for them.

Also, please know that any comments that seem harsh, aren’t intended that way but what we stage IV folks deal with daily is tough on a level most can’t imagine and we just can’t spend tons of energy making everyone else feel better.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 26, 2019 01:08PM LoriCA wrote:

Have you ever heard the saying that at death, no one ever said they wished they had spent more time in the office? They wished they had spent more time with their loved ones, and doing things they enjoyed. Many of us Stage IV people make a decision to spend what time we have left with our family and friends, doing things that we enjoy. Our priorities change. If you knew you were going to die, would you want to spend the time you have left in a terrible commute and stressful job? Or would you want to spend it doing things that bring you joy so you can grab on to all the happiness that you can?

And being Stage IV can be a full time job in itself. It depends on her prognosis and what treatment she is on, but I can tell you that through June of this year I had 72 medical appointments and it wore me out. Fatigue from treatments is cumulative and after a few years it can really impact your life. Just going out for 2-3 hours can leave me wiped out for the rest of the day. I'm in good shape, it's just the fatigue that impacts my life and in talking to my other metastatic friends it's the same for all of us. Even if we're currently doing "okay", many of us just don't have the energy to live the way we used to, especially if we had been Type A Overachievers. Fatigue is the biggest complaint from all of us. She could just be reaching that point where she doesn't have the energy to do it all anymore and she's prioritizing what is most important to her. We need to focus on reducing the stress in our lives, and we want to use what energy we have to focus on the more important things in our lives.

It doesn't mean we're at the end, just that we want to live as well as possible in the time we have left, however long or short that may be.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Nov 26, 2019 01:48PM ShetlandPony wrote:

So well expressed, Lori.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Nov 27, 2019 01:58PM LoriCA wrote:

Thanks Shetland :)

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Nov 27, 2019 02:53PM - edited Nov 27, 2019 02:57PM by Olma61

My sister doesn't have cancer or other serious illness and she retired at 55, as soon as she was able to collect her pension and maintain her health insurance. She does exactly what she wants to do every day and is not motivated to do anything extra to earn money or even to do some easy online selling things that I have suggested to her. She just wants to spend her time however she likes.

But no one worries that she has one foot in the grave or that it is the "beginning of the end" for her. She is having a great time.

I actually wish I could be in her shoes and start drawing my SS benefits but my circumstances are not hers and I keep up my self employment activities, which I do enjoy, but I also need the money right now, unlike her.

Realistically, with stage 4 we have less time ahead to collect whatever benefits are coming to us, why not spend our limited time the way we choose and take whatever retirement/disability money might be coming to us while we can?

For Stage IV cancer patients, I think it is "good" for us to stay active while we are able to do so, but a full time job is not the only means of staying active and engaged with life.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Dec 1, 2019 08:19AM - edited Dec 1, 2019 08:20AM by edwards750

I agree it's her call. If it were me I would do what she's doing. Enjoy life. Work is stressful no matter what your job is when you are DX with Stage IV. Many women live multiple years with that DX but they always know it's a ticking time bomb. Still there shouldn't be expiration dates because who wants to live their life thinking the shoe will drop any day.

My sister just passed away from Stage IV BC. She had retired from her job before the DX so she and my BIL travelled and enjoyed life.

It is disheartening and frustrating that women are still dying from this insidious disease.

I am blessed to be 8 years out last August but there are no guarantees even with an early stage DX like I had.

Diane

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