My husband's lymphedema continues to get worse and now the cancer is creating surface tumors on the arm that are breaking through the skin, like some horrible version of Alien, The Reality Series. He also has lymphorrhea, leaking yellow lymph. I'm changing makeshift dressings of cut-up underpads every couple of hours. They are going to irradiate the tumors next week in the hope or preventing them from bursting open (something that thankfully happened just once and while he was already at the hospital).
He is just barely mobile. If we stay absolutely on the morphine schedule, his pain is manageable, but he still has break through pain at times. He is desperately hoping to get stronger and continue with chemo. It seems increasingly unlikely to me, but I'm really lost as to where we are. He does not want to talk about hospice. He does not want to sign or even discuss a DNR.
We just continue on in our Covid quarantine cocoon. Hoping to have more days. Hoping to keep the pain in check. Hoping the end, when it comes, is gentle.
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CantChoose
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His oncologist calls him a PC unicorn. She said she's never seen this in 30 years of practice.
They did biopsy it, but I figure it's probably more for the paper they likely intend to write about him rather than any change to treatment plan. This will be the third round of radiation to the arm.
I asked this morning if he'd consider amputation and he said "maybe." I doubt it's even an option, given how weak he is. On the other hand, perhaps he could get stronger without the arm.
God, just realized what a terrible choice of words "on the other hand" is in this case. Guess I need to see humor when I can.
Sorry to hear the news CantChoose. Is your husband willing to talk about "palliative care" instead of "hospice"? From what I've heard it's better to get extra help involved sooner rather than later.
A sense of humor is vital. I immediately noticed "on the other hand" and had a bit of a giggle. Laughter stimulates the immune system, and during my recent biopsy I made as many bad jokes as I could and the doctors and nurses seemed to enjoy the break from all the usual seriousness.
Humor gets you through, even gallows humor. Sounds like your beloved is a fighter! His resistance to Hospice is part of that fighting spirit. He will know when it is time, I trust. What are _you_ doing to support you? [Virtual hug just came your way]
We do have home services coming now. They just started so it's hard to know if they will be helpful. The dressing changes in the night are what makes this super hard. He doesn't need much care, but he needs it around the clock. My adult son spells me every third night or so, and that's been getting me by.
I started a new, very intense job right at the start of the pandemic and I finally am taking vacation time this week. Hoping I can get recharged.
He wants to stay optimistic, even if that starts to spill into denial. I'm trying to give him that as long as possible.
oozing, leaking lymphedema is hard to keep up with.With my patients I have found that a box of "puppy pads" are excellent for inexpensive wrapping and absorption. I do not know if you have Job Lot where you live, but that was a good, cheap source for me when I was protecting the mattress during the "leaky times."
Optimism and Hope are critical. Denial on the other hand is counter productive and needs gentle correction.
In home hospice care can be a lifesaver for you and really ease testing etc. for your husband..a friend had this care and was much more comfortable. Her caregiver was able to take breaks, buy groceries, have lunch with a friend or whatever. Not like a hospice center, but home centered at all times...Personally I will never put my wife though this constant load. (Well I have,[twice] with dressing changes, stained sheets, etc. with leaking arm from burns, but we recovered from that episode and being a complete invalid from cancer meds). My DNR is in place and POLST (Physician's Order for Life Sustaining Care) is in my wallet and under kitchen sink for first responders. Wishing you both all the best and relief from constant pain.
This is one of the saddest posts I've ever read, and my heart goes out to you CantChoose and your husband; but Shooter1 your POLST is under kitchen sink for first responders? I can hear it now, "We need to get this guy to ER right now!" "Wait a minute, I've almost got the garbage disposal fixed." Hate mail to j-o-h-n please.
Actually in envelope taped to inside of cabinet door under sink. Dr said that is where the first responders will look for bright orange sheet with my wisher/directions on it. Could get lost on front of fridge and don't really want everybody reading it.
CantChoose.. Its tough...Love can be extremely difficult sometimes. We humans have our limitations. I feel so much respect for Wives and Nurses who do this day in and day out.The message from this situation for our fellow members is to make sure each of us have DNR and advance directives in place so our loved ones do not have go thru this tragic situation. This is an act of compassion towards people who love and care for us. We all have to leave someday...some little early.. some little later. .nothing can change this ultimate rule of nature.
The greed to live a little longer is ingrained in western society because the belief is that there is only one life. In East, the belief is that we recycle and end of this life is not THE end...we go merge with with the total and then, again take new birth. Destiny is pre determined like songs in a DVD..but it unfolds gradually.
Very sorry. Please try to get outside help from hospice. They should have resources to help both of you.
I will pray for you both tonight God will send his comfort and care.
Dear CantChoose , you chose to love . No better medicine than you. My heart breaks ,as I read his suffering and yours . I mimic your hopes . I pray for mercy and no more suffering for him.. I respect your strength love and support . I’m sorry for this brutality .
My heart breaks for you, I can feel You’re working through the steps that it won’t get better, but then the other part of you is saying maybe it will. Your husband must be so afraid if hospice comes , it must be the end My prayers to you and your husband is God will give him the peace And let him start making decisions. And God will be with you during this horrible horrible time. 🙏
My humble suggestion : If the thought of hospice care frighten him..do not use the word "hospice" or "palliative" care. Get him ample amount of analgesic (pain meds) and anti anxiety meds (such as diazepam)
Good hypnotic for sleep if needed. May consider CBD oil. Just some suggestions to think about .it's .not a prescription)
He's on 60mg morphine, Norco for breakthrough, gabapentin, dex and Ativan as needed. CBD doesn't work for him. Pot makes him horribly anxious. I'd say we have as many meds on board as we can.
So sorry to hear this news. This is a terrible turn for your both. It's such a bad time to be ill or caring for someone who is ill. Wishing you peace and healing.
You know ... yes this has taken an ugly turn and along with the holed up Covid stress it’s pretty nasty and stressful. I’m no doctor and this is just a gut instinct observation ( from some one that has peered , long and deep, over the edge once already ) ...but , yes you have that ugly skin stuff happening ( had something myself similar recently) and weakness is pretty common among many of us ....still ..... if his blood work isn’t crashing and you said he’s still mobile , if barely ... then his basic engine is functioning and my guess would be that you aren’t as close as you might think. It’s just how it seems but it seems like you may have a while left still. You might want to spend those remaining weeks and months taking advantage of the time remaining, but it just feels like you guys have a while still. Just my non medical impressions, your mileage might vary but I’ve been WAY past where you guys seem to be at this time ... it may not be as bad as things seem at the moment. I hope not and I dearly wish the best for “ both “ of you.
As an "average male" I too do not like thinking about "hospice" and a "do not resuscitate order" for myself. Makes everything so final, like signing a death warrant ... You are definitely in a sea of troubles, but you are a wonderful, devoted mate... As you may know my hobby is "humor" and if I were with your husband, I would try to make him laugh all day....
Tell him he would be lucky, if he has his right arm amputated since he could never be "sworn in" in court... and it would be difficult having to go through the rifle routine in the army. And forget about the command "order arms"....
Give him my best and tell him I can beat him in golf....
Give him my best and tell him he can beat me in golf. So, so sorry you are where you are at now. So difficult for you both. Not the vacation you wanted. I wish you well.
Do you think if you told him you needed Hospice as help for you, that he might consider it? That’s what I told my husband “that I needed help in caring for him” and somewhere to turn to when I didn’t know how to handle a situation. I am praying for both of you. You are a such a devoted partner.
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