Seeking advice(1)

ScottyTom

I'd like some advice and insight from those in the medical field, survivors or those who've cared for persons in chemotherapy.  My wife is stage six and of course requires 24/7 care.  I am midway through what appears likely to be a diagnosis of esophageal cancer.  Today I have a CT scan.  A PET scan is to be scheduled, then a consult with oncology.  I had an upper GI last week which found a "large" mass in my esophagus. Biopsies show cancer.  Surgeon says it looks like it is past the point of easy removal as a stage 1 but surgery may be needed after the chemo and/or radiation.  Can you tell me just how incapacitated I'm going to be?  Will there be days when I simply cannot help my wife?  Our three adult children will offer what they can in the way of help, but they will not be available full time.  Will I need to hire an aid for her and what about for myself?  Will I need someone to provide care for me that I cannot do for myself?  I contacted a local company that offers various levels of care.  Is there anything that Medicare will offer in the way of "in home" assistance for me or for my wife?  Thanks for any help.  Oh, and by the way, just call me Scott.  It's my name.

Cynbar

I'm so sorry to hear this news, this must be so upsetting when you add the challenges with your wife's care. I do have some input. After your surgery, the doctor should be able to order some visiting home care services which Medicare will pay for 100%. A nurse will come to your home and monitor your recovery and symptoms. A home health aide can be sent a couple times a week to help you with bathing if you are feeling weak. These visits will be intermittent, no one will stay for big chucks of time. Household tasks like shopping and cooking are not included. And unfortunately, Medicare will not cover care for your wife as that is considered custodial. Respite for her is something to consider. I sent my DH (stage 6) to respite  after I had a hip replacement. Everyone told me that he wouldn't understand that I couldn't do for him as usual after surgery and they were exactly right. I knew he was well cared for and I could focus on my recovery. Most places in my area were doing respite and I picked a nice memory care --- he did just fine. You could also hire private care to come into your home, there should be a choice of home care agencies in your area. Good luck as you navigate this and make the best plan for you both.

M1

Hi Scott.  Welcome to the forum but I am truly so sorry to hear about your recent diagnosis and your care dilemmas.  

I'm an internist, not a surgeon or an oncologist, but I suspect quite frankly that you may be in for a rough time, and it would be better to prepare for the worst and be pleasantly surprised if it's not as bad as expected.  My experience with scary diagnoses like this is that the sooner you can get a handle on what you're facing, the better off you will be.  Most folks find the courage necessary to face bad news, if it is bad news--but it's the uncertainly that will drive you crazy.

Esophageal cancer is a bad actor and typically does not respond particularly well to chemotherapy; that's true of most GI cancers, unfortunately.  With the combination of chemotherapy and radiation, you're likely to feel pretty lousy, and I would anticipate that you will need help yourself, and will not be able to care for your wife.  That's just the blunt truth.  And that's before any surgery is considered.  It's hard surgery to recover from; feeding tubes or even feeding by vein (what's called total parenteral nutrition/TPN may be needed).  Handling even oral secretions and saliva can be difficult because you may not be able to swallow.  

Are your children close by?  It would probably help for one or more to go with you to these upcoming appointments, so that you can be sure you get the right information, and the right questions get asked.  I hope what I've said here may help you think about what you need to ask.

I think Cynbar's suggestion about respite care for your wife may be appropriate.  If you can afford to hire a full-time caregiver for her in your home, I suspect you will need it, at the very least.  Or it may be time to talk about memory care placement, so that you can focus on your own recovery.  These are very tough choices, for sure.  

I'm glad you found this forum, as there is a whole community here ready and willing to support you.  Good luck, and please do keep us posted.  Will be rooting for you.

LadyTexan

Greetings Scott.

I am sorry to hear about what appears to be a likely diagnosis. I don't have experience with this at all. If I were in your shoes I would ask the doctors or other healthcare team members to connect you with resources, such as a social worker. I would also reach out to the American Cancer Society to see if they can shed light on what to expect. Maybe there is a cancer support group that could give you some ideas on what to expect.

What cynbar explained about Medicare is consistent with what my parents encountered following my mother's recent illness. Nurses and and other care team members came to my parent's home on a limited basis to help my mom. There were clear goals for my mom to accomplish with the care team, such as becoming safety aware, improving balance and increasing strength through PT.

That is all I know. I hope that you can locate the resources that will best help you and your wife as you pursue the care you need.

Blessings to you both.

60 falcon

Hi Scott, sorry to hear about your current problems.  I think you've already been given excellent advice.

M1 said that uncertainty would likely drive you crazy. I totally agree with that!  I've got a different kind of cancer and going through all the testing, chemo, radiation, surgery, and all the never ending labs and appointments is/was hard.  But the uncertainty and unknowns were by far the hardest for me to deal with.  Still is.  It's almost impossible, but try not to go down that rabbit hole.  It helps to have someone to talk with. 

My experiences would mean little to you since everyone handles the treatments differently and there are so many different kinds of treatments.  I second the suggestion to have someone with you at your appointments.  With all the thoughts going through your mind it'll help to have someone that'll ask the things you don't.  When you have questions, ask the docs! I found the oncology nurses to be a great help.  Being comfortable with and confident with your doctors is a huge comfort as well.  They know what they are doing and will do everything to help you get through this.  

Being a 24/7 caregiver for your wife is already incredibly difficult.  I agree that if you need treatments and surgery, you're going to need and want additional options for caring for her.  I wish you the best.

Ed1937

Scott, I don't have anything to add, but just wanted to offer my support. I hope you get things worked out for the best. Come back anytime. We'll be here for you. Sorry you have to deal with this.

CJ1961

Hello Scott, I am so sorry for your situation. I'm tentative about replying because it might sound a tad negative, but feel compelled because I'm a survivor of  20 weeks intensive chemotherapy to October last year (breast cancer), and because I am a retired GP in Australia and also have patient feedback experience with how completely variable the adverse affects can be depending on the agents used (different for different cancers, but oesophageal is aggressive and likely to have aggressive chemo if surgery is not first option) and the intent- eg curative hope versus palliation of symptoms. I'm sorry to be blunt, but your post seemed to be asking for reality feedback- and if I did not have two steadfast and loving sons , and friends who stocked my freezer, my DH (only stage 5 I think) would have to have been placed in care. It wrecked me, I was bedridden, got septicaemia as well and nearly died, needed 30 days in 5 admissions in hospital as well as the 16 day admissions for chemo, and it doesn't end after chemo, I still feel physically incapacitated and pyschologically devastated, Caring for DH and my dying Dad is near beyond me, and am needing a regular shrink, oncopsychologist and so many depression meds I rattle.

I will stop there, because the most pertinent point is that everybody reacts differently, and I started from a subzero baseline with 46 kg weight loss from recurrent Crohn's bowel obstructions they couldn't operate on due to COVID cancellation twice, then chemo. My takeaway is like M1s advice- please prepare for the worst- assemble a Cavalry, mine unexpectedly came out of the woodwork and flabbergasted me with support, and hope that you will be surprised as many people are (in chemo beds next to me same agents they left the suite and played tennis!),that it is tolerable. And ask your oncologist to be frank, mine knew my circumstances and predicted the horror that followed for me.

I wish you the very best of luck, and am very sorry for your situation, and that I cannot recommend specific supports available to you because I'm from South Australia. (((Hugs from Down Under))) Coralie.

ScottyTom

I appreciate everyone's input, even if rather foreboding.  Our kids are supportive and two work from home which means they'll be somewhat available.  I've contacted what seems to be a good in-home assistance company.  I've now informed my wife of what is going on.  She took it better than I expected her to, though she does not know the grave nature of what I'm facing.  I told her the best thing she can do to help me is to agree to being cared for.  She thinks she can still do things but she cannot.  Her ability to dress or to fix herself food etc. is about that of a two year old.  For example if she is hungry and I'm not around she will open a jar of peanut butter and dip in with her finger, or if she tries to dress herself she will sometimes pick up underpants and try to put them on over her head thinking they are a bra.  She "cleaned the kitchen" the other day and I later found a bar of soap in the toaster.  I figure our finances can afford a part time in home aid for her for about two years if we are lucky.

Just to go on, if you don't mind; I had a brother-in-law (whom I loved) who smoked for fifty years, even after dodging throat cancer he still smoked.  He never exercised, didn't go to doctors, etc.  He died peacefully in his sleep a few months back, God rest his soul.  I on the other hand have never smoked, exercised regularly my whole life, went to see the doctor and dentist every year, always sent back the mailed out stool sample kits on time, I weigh the same as I did in high school, I've had one sex partner in my whole life, and now this.  Oh well.  Maybe my facing this with as much dignity and bravery as possible will someday shape the life view of our children and grandchildren when they reflect on these days.  Thanks for all your advice and best wishes.  I may give my kids the password to this listserve so if they need advice taking care of my wife they can turn to the group for help.

Crushed

Just sending support I was an ethics advisor to Studies at the National Cancer Institute
you are no good to your wife unless you are coping adequately.  I strongly support the respite care suggestion