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[Soph0571]

This message was self-deleted by its author (Soph0571) on Mon Oct 5, 2020, 09:46 AM. When the original post in a discussion thread is self-deleted, the entire discussion thread is automatically locked so new replies cannot be posted.

[Dave in VA]

1. My heart breaks for both of you.

In my very limited experience with my Father-in-law the doctors told us that is usually emotionally better if you follow their lead. Not to lie to them, but don't force anything.

Again, only one experience with this. Please remember to take care of yourself on this journey. Hard for you to take care of someone if you're not taking care of yourself.

Positive vibes and wishes for both of you.

[Eliot Rosewater]

2. Force a conversation about using chemo? If that is not an option per your comments, then

I suppose letting him believe what he wants cant harm anything.

I am NOT a mental health professional so dont take my word, clearly consulting a mental health professional would be advised.

We all need mental health help, all of us! good luck!

[Dem2theMax]

3. The people in my life have always been open about talking about things like this.

So the only thing I can think of is to gently ask him if the two of you should have a talk. No pressure, don't even mention the subject. It's the only thing I can think of. Others will come along who will have much better advice. I really feel for both of you. Sending you lots of positive thoughts.

[JoeOtterbein]

4. Take care of yourself.

Please.

[dawg day]

5. I'm so sorry, Soph-

This must be so difficult at the best of times, and twice as bad now.

Cancer therapy in itself is debilitating. Is there a chance he's responding to the treatment?
I think you need to talk to his doctor. The doctor might not be willing to talk to you without your SO, but you can probably get the SO to let you go with him to a doctor visit, and then you can ask questions.

Also, you have every right to call the doctor and explain what you are seeing, and insist that the doctor see him (and you go along).

I'd go to the doctor. There are rules, but he/she will know how to get your SO in.

[Karadeniz]

14. This was my first thought. Talk to the doctor. Losing weight is unhealthy...it was just on t.v.

In a show about Gilda Radners cancer...the doctor explained the chain reaction that weight loss starts. My husband has had a lot of different health issues over the years and he began to turn into a bean pole. I'm giving him whatever he'll eat. Ice cream, Root beer floats, fried shrimp, hamburgers and fries...whatever!

Wishing you and your friend all the best...tell him to straighten up and fly right as of now!❤

[Botany]

6. Be there for your partner.

No rights or wrongs just be there. Tell 'em it will be OK and let him/her know they are good people.

Home hospice people are amazing.

Btw this is tough duty no doubt about it and you will find the strength to do it.

[Lars39]

7. Radiation saps you.

I had 27 radiation treatments, and the only way I kept some energy was to walk as much as I could during that time frame.
It sounds like he might need physical therapy to build his endurance back up. Hugs to you both.

[Soph0571]

11. Lars that is so positive for me

Thank you!!!

[FailureToCommunicate]

24. Yes! Hard won good advice!

[Cha]

8. I'm so sorry, Soph. ❤️

I wouldn't what to do. I wish you and your SO the Best.

[Soph0571]

12. Hiya!

I just want to cry all the time. I see him struggle and bite my lip and want to yell at the universe. He is my best pal and he is struggling hard. I fear everyday that I will wake up to him dead. It sucks.

[Cha]

15. I can imagine how much it sucks.. Such an impossibly traumatic

& heartbreaking life situation.

I feel for you deeply as just having experienced my sister & best friend passing away the day after Christmas. There's so many things I want to say to her and yell them at the sky instead.

Not that it's the same.. it's just all shocking and so unbearably sad.

❤️

[LiberalLoner]

9. I'm so sorry for what you are both going through

And I hope for healing. 🙏

[niyad]

10. (((((((soph))))))). I have no sound advice to offer, just sending vibes for healing and strength

and comfort. Please take care of yourself through this, and know that your DU family is here for both of you.

[Soph0571]

13. I posted this OP cause I just needed some positive vibes tonight

I hate where we are and I know that others have it worse, but I am heart hurting and scared about what comes next personalty, and that of course does not negate from the bigger horrors that are upon us.

[handmade34]

16. all the positive I can muster

(((((((( ))))))))

I'm right there with you... my partner puts on a good face to protect me... it is difficult not knowing what each day will bring... just love him and he will know... take care of yourself as well

[msdogi]

17. Just be there for him

Talk to his doc, find out what the prognosis is without the chemo. Ask about a plan for him. You may not be married, but you are his caregiver at this point so you need information. Then talk to him.
My husband was diagnosed with stage 4 cancer last fall. His prognosis was terminal. He lost interest in food and lost a pound every day. Hospice got involved, and we were able to make him comfortable. He died a month after diagnosis.
I was always careful to include him in talks with doctors and nurses, he felt like he was a part of deciding on care.
This is just a horrible thing to deal with at any time, particularly difficult in a pandemic.
I wish you peace.

[c-rational]

18. Soph - good thoughts and vibrations to you and your SO.. There was some good advice upstream

about radiation and physical therapy.. My older brother had chemo and radiation but the latter really took his energy away. Best advice I can give is to keep your thoughts positive. Your SO may be one step ahead of you. Wishing the best for you both.

[Vdizzle]

19. What is his favorite meal that you can cook?

Cook it. And ease into the conversation if you feel you can. If not, enjoy the meal together and have great big hugs while watching Netflix. Netflix and chill.

[sinkingfeeling]

20. All you describe: weight loss, fatigue, and inability to walk to the end of a street,

could well be side effects of radiation therapy. I had Stage IV cancer in 2009 and experienced all of those during treatment.
Do not tell him of your belief that treatment isn't working. A positive attitude that one is beating the cancer is of upmost importance.
Take each day as it comes. One day at a time.

[Soph0571]

35. This is what I have decided to do

But my heart is so sore 😪

[TNNurse]

21. Radiation is exhausting

but should have no effect on weight. I think you can talk to him about talking to the doctor with you. I hated when I realized my husband and sister were talking about me. I would not eat but that was because of the chemo.

I also suggest talking to him and letting him know how it is affecting you. I find that being honest and crying in front of him is the best thing to do. He may be trying to protect you, let him know you would rather know the truth of things.

It will be hard, but it may be best for both of you. Talking to him is not going to make him sicker.

[Soph0571]

36. I get it, but we are Brits

Stiff upper lip and all that. It is hard.

[tinrobot]

22. Imagine if you don't speak up. How would you feel if the worst happened?

I know a conversation like this is difficult. And both people also need to be willing to have the conversation. He has the right to not participate. But not trying might just leave you with questions and remorse.

Perhaps talk to the doctors, gather as much information as possible, then broach the subject with your SO. It is up to him whether to respond and/or take action. But you owe it to the relationship to at least try.

Regardless, I hope he finds the resolve to pull through.

[Soph0571]

40. I told him today

He was not aware. This is so fucking hard. In life I am a tough director of multi million projects who takes NO shit. On this, I am jelly.

[mtngirl47]

23. My husband went through almost a year of chemo and radiation...

He lost so much weight and didn't like the taste of any food. He was weak and each day it just became easier for him to stay in his robe and not do anything.

The physician's assistant where we went for the radiation told me to get some weight back on him---he can't fight the cancer when he's too weak to walk down the driveway.

So here's what I did--I bought powdered Ensure and made him milk shakes--adding a banana or tablespoons of peanut butter, and ice cream with all the fat you can get! Add some ice and blend it all up and watch him drink it. I also decided that drinking lots of water would help flush out the poisons. I made him 2 shakes per day and kept an insulated water bottle filled with ice-cold water next to him all day. It took a few weeks but the pounds started to come back on. I encouraged him to do a little each day to get his stamina back.
He is 10 years cancer free now.

If the conversation is too hard---fall back on the nurturing role of the female and fix his favorite foods and the milkshakes and tell him he needs to get his strength back after the radiation.

Blessings to you both!

[FailureToCommunicate]

25. You have always been such a delightfully

roughish and wise voice on DU.
Your days now sound winsome and hellish in equal measure, but I have faith you will sort it out in your usual brilliant manner. Even if that means no good answer at all.

[Soph0571]

41. You just called me common!!!!

Norn Iron working class who is not working class anymore. I will be OK. Thing is as my SO gets sicker I get angrier at all of the shit. I am actually trying not to post too much because I am guilty of the same shit every single time. I am fucked off. I should not be worrying about our leaders inability to try an deal with covid. I should not be worried about the leader of the free world being a fucking nazi. I should not have to worry about food insecurity and public health nightmares across the world because the wealthy west is not stepping up. We live in our own secure bubble and I am privileged that we can do that. But I am fucking furious that even that bubble cannot protect my wee family and at this point in time, when that should be my only focus, these democracy stealers need my fucking attention. Just fucking sayin!

[renate]

26. Does it hurt him to eat?

Or is he having GI issues that he's not comfortable discussing with you? I have a family member whose spouse had absolutely no idea they were experiencing diarrhea every day after surgery for months! And even now that they know about it, they still have to be super assertive about getting followup appointments and tests to try to figure out what’s going on... the doctors aren’t going to pursue complications if the patients don’t make a fuss about them. (Not blaming the doctors... they have a LOT on their schedules.)

[Ponietz]

27. I don't presume to offer advice to you, dear Soph0571

But, I recommend Die Wise: A Manifesto for Sanity and Soul, by Stephen Jenkinson.


Also, I loved this from Terry Pratchett —
[link:http://

|

[NewEnglandAutumn]

28. There are so many variables.

First of all I know where you are coming from. My beloved was diagnosed with metastatic sarcoma when he was 39. The fear, shock,panic, confusion etc was almost debilitating. Somehow he has managed to make it much longer than anyone ever imagined but it has not been easy.
1) You know your partner best. Use that knowledge to try to imagine where they are coming from but don't be afraid to ask 'what do you want?'
2) Talking about all the medical, legal and personal aspects is exhausting both mentally and physically. Sometimes short frequent conversations are easier to manage.
3)I suspect you will have to push a bit to get through all the buzzing going on inside his head. How to do it depends on the individuals involved. In our case I have 2 approaches that I vary according to need. a)probe gently around the edges to get a feel for how he his feeling b)"I know you may not want to talk about this but I need to know ____". I almost always save b for when we have to make a yes or no decision.
4) Sometimes calories are more important than nutrition and it is OK.

** I hate the 'language of cancer'. It is often framed in terms of 'war' or 'battle' and that bothers me. I think it is because when we talk about people wining or losing it can feel a bit judgy as well. The subtext of winning/losing is 'if they tried harder'. Even worse if they opt to not undergo treatment then they are quitters (my mom opted to not treat and my brothers have never forgiven me for supporting her decision they feel she betrayed them by not undergoing chemo.)

[pazzyanne]

29. Love and positive thoughts on their way to you, Soph571.

My brother was diagnosed with stage 4 lung cancer. He did chemo and radiation, but all interventions were not effective. During his last hospitalization, he chose to go to hospice care in a care center because his wife could no longer care for him at home. Those weeks in hospice made his days manageable, and allowed friends and family to visit him and celebrate his life. He made plans for his young grandson (2 years old) to help him remember his grandpa through contact and gifts for the future with his only grandbaby. He was able to say goodbye in a positive manner. It was a sad but good experience for us all. Every person is different and options depend on that individual and their loved ones. Guess this is me saying that if treatment options do not provide desired outcomes, hospice was a blessing for our family.

Please take care of yourself. Talk to him, friends, and if necessary professionals. This is a hard path to walk and continue to do it by yourself. You need attention at this time, too.

In the meanwhile, sending

[KentuckyWoman]

30. I have been through similar

The only thing you control is whether or not you will go through this with him, and whether or not you also care for yourself. If you choose to walk this last mile with him, you will need support. If you can't share your thoughts with him, then you'll need someone.

Online support groups are aplenty. His oncologist, a social worker or whatever clergy you have can perhaps point you in the right direction. You'll the need the safety of being able to unload where he does not "hear" you.

All caretakers neglect self care. Especially once it gets this kind of dicey. If someone offers to help - figure out something they can do. Please be sure to get some kind of fruit and veggie every day. take a walk - even if it's just to the end of the driveway and back 19 times. Sit on the toilet or in your car and cry if you need to. Pay attention to your own medical care. Take a shower ( this tends to get neglected).

Keep a care "bible". We had a 3 ring notebook with every blessed thing in it. Calendar - Phone numbers, Advanced directives, his body donation paperwork, copies of his insurance card and ID, test results, care plan, bills, EVERYTHING. I even made a page with phone number of our friends, family and neighbors. Yes I know most now put in all in the phone but trust me, put in on paper also. When you get tired and rattled technology has a way of being a frustration.

Baby monitor with video. The new ones let you see him sleeping right there on your phone while you walk your driveway or sit online in another room to get a few min away from it. Just be sure to reset the security codes. I used an old fashioned sound only one and it helped but the fancy video kind would have been better.

He may not ever be able to talk to you about this. He's the master of his own life. The choices are his. You only only choose to go through his last days with him, or not. Do the best for him that he allows you to do if you want to support him. Make sure when it is over, that you can look into your own eyes in the mirror.

One last note ... mine really fought several years longer than he probably should. His quality of life was non existent. 4 months before his end, his regular oncologist was out and the lady filling in was somewhat brutal - and a little bit rude. But it got his attention. After weeks of teeth gnashing he faced the truth. And decided to stop the fight. If your man needs brutal, please try not to be the one to do it. Some will disagree with me, but he needs a hand to hold. Once you go brutal, he probably won't hold yours. Just my 2 cents on that score.

All my best to you.

[nuxvomica]

31. I'll give what non-medical advice I can from experience, for what it's worth

The radiation may have ruined his appetite, or the cancer, or both. With my dad, he was diagnosed late stage and had lost a lot of weight by then. He had always had a great appetite and love for food so the weight loss and anorexia were affecting his quality of life. I did some research and found that marijuana worked well in these situations to improve appetite. This was long before legalization but I knew some people and made some calls. A friend responded within an hour with an ounce of the stuff. I watched a youtube video on making "green butter" with a double boiler, one pound of butter to the ounce of marijuana. With that, I made batches of chocolate brownies from a store-bought mix. His appetite improved and he put on weight. He even enjoyed Thanksgiving and Christmas dinners with us. Though he didn't like the brownies because they tasted kind of funky, he ate one a day. They had no psychoactive effect on him. I told the doctors and home-hospice nurses and they invariably said something like, "I'm not aware that you are doing this but if you are I have no problem with it." He passed the last day of that year.

The appetite issue is important whether this is a terminal case or not because it affects the quality of life and hastens the damage to the body. Maybe it's my Sicilian-American father's influence but I feel people gotta eat. "Mangia! Mangia!" he would always say if we didn't dine with gusto as kids. It's also helpful to be able to do something, anything, to help your loved one fight the disease. I am happy I did it and my family believes it helped him. Again, I'm not a doctor and take my advice for what it's worth. I pray for strength and peace of mind for both of you.

[Maraya1969]

32. I am so sorry that you are going through this. I am not a mental health professional

either and I do not know if this is the right question but if I were in the situation I would ask my loved one if they wanted to die. I know this sounds horrible but it sounds like they just might have accepted what is and are going with it.

I had a partner for 8 years who passed away many years ago. She had adult respiratory distress syndrome and was on a ventilator for 6 weeks. She could communicate a little bit but it was always difficult. One day she just turned her head, looked at me and mouthed the words, "I love you" so clearly and perfectly that my eyes got wide and I jumped up and started talking to her and telling her how she was going to be OK and how we would take a vacation etc but she refused to look at me. Her eyes did that fluttering thing that they had done so many times before when it seemed as if she was out of it.

And then it became so clear that she was saying goodbye. And I shut up except to tell her I loved her too.

And then she died about 24 hours later.

Maybe this is not your partner's story and maybe your partner wants to live and wants another treatment. That is why I said I think you should ask. Because if that is true then you can do something about it and if the other is true you can spend your time together in a period of love and acceptance.

Whatever happens you both will be ok. I believe that.

[Xolodno]

33. Don't know what to say.

My father went straight to radiation...as the prognosis was grim. He didn't survive.

My sister had an operation and is now in chemo. She will undergo radiation afterwards....maybe.

Stage 4 vs. Stage 1.

Ultimately, talk to the doctor. Get the prognosis....they may very well be avoiding chemo due to the advanced stage.

[diva77]

34. Sending good vibes

Is your partner receiving treatment at a hospital that has social workers on staff? They work with people in similar situations all the time and might have some useful suggestions or recommended reading.

[smirkymonkey]

37. I'm so sorry to hear about what you are going through Soph!

I know it must be so difficult for you, and for him. You always seem so strong, yet it is painful to know that you are struggling so much with this. Are you able to have a private conversation with his physician? I am not sure if you have the same privacy/HIPAA type rules over there that we do here. Knowledge can remove a lot of the fear and uncertainty that you are feeling.

Do you know exactly what he has, and if so, have you researched it to find out the prognosis and what can be done to help him get stronger and healthier? It can also give you some insight to find out what he is going through, and what the recovery options are. The more you know, the less powerless you will feel. If he can't tell you, try to find out whatever you can through other means. Have you thought of a support group through the hospital or through an organization affiliated with whatever kind of cancer he has?

One thing is true, and that is that it is almost impossible to try to handle it all on your own (even if you are British). I am glad you were able to reach out to us, and I hope someone here can give you the advice that will soothe your soul, but if you can avail yourself of it, it might be helpful to find some professional support or a support group for yourself, so that you can be there for him fully. It's hard to take care of someone else when you are suffering as well.

Take care of yourself please and check in often. Please feel free to unload on us whenever you need to. Let us know how you and your partner are coming along. I wish you both all the best.

[panader0]

38. All the best to you and your guy.

[Fla Dem]

39. I am so sorry you are going through this difficult time in your life.

I have no experience to draw from to give you any advice, other than to gently talk to him whether he responds or not. Just showing you care for him. It's his journey to take. Just let him know you want to be with him on the journey.

Continue to use DU for help, support and encouragement. We're here for you.

Peace be with you and your life partner. I hope his cancer is curable and at some point you both will be in a better place.