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Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 5)

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Prostate Cancer
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Posted 11/14/2015 5:40 PM (GMT 0)
I'm also a new member, one who is in awe of the strength and compassionate spirit you all display on this thread as you deal with very difficult situations. As I read your stories, I'm touched and inspired by your courage and grace, at a time when I greatly need both. I'm in the throes of fear and anxiety about the future these days as Tom and I try to figure out the next step in his/our journey. Wishing you and yours some peace today.
Posted 11/14/2015 5:56 PM (GMT 0)
Welcome, mrs. george and Cincy...


Moon, How did the radiation to the neck lymph go?

Lisa
Posted 11/14/2015 5:57 PM (GMT 0)
Welcome Cincy. I hope you find answers here and also the support you need for your husband.

Things not good, girls. Don was in for radiation yesterday. Just one shot as the radiation onc said the cancer had spread all around his skull and so they were just focusing on the one spot giving him trouble. Her secretary had told her how angry I was at the "don't have time for email chats" remark and she apologized twice and said she is only human and I had no idea what was going on down there with the oncologists. Well I do. Most of them are disgustingly uncompassionate human beings and should retire or find themselves an alternative career.

I couldn't get help to get Don from the garage, down our pathway to the house and up two steps. I called Community Health, Palliative homecare, Driving Miss Daisy, and no one would help. The radiation oncologist called Palliative care home support at our local hospital but they could do nothing. So after an hour of phonecalls, Don called his son across town and he left work to come carry Don to the house, and then went shopping and helped me change a diaper and wash my poor guy who couldn't hold it in the car while we waited trying to find some professional help. All male neighbours at work. The system is broken. My heart is broken. I love him more than I could ever express in words.

Next week, hospice/palliative comes to do a home assessment. At least we have this happening.

Don slept all through the night as he was awake the night before in Emerge getting the blood he should have had weeks ago. He is still asleep. Today, I IV him with supportive stuff and pick up the anti-neoplastic drug from Fedex. I pulled my back so hope I can at least provide support lifting him on and off the sofa and the loo.

Oh, and the "lymph node" is as I suspected, a bony skull projection. The palliative doc had it wrong AGAIN.

Everyone give your guys extra hugs today. Sorry I haven't emailed anyone. xx
Posted 11/14/2015 6:09 PM (GMT 0)
Well, I hope the radiation dose gives Don some relief. And, palliative care can ACTUALLY get off their collective ***** and do their job for you both!! There has got to be some tricks of the trade for assisting
him on and off couches etc. Can they order/provide some alternatives? I guess you'll find out more next week. Frank and I are always keeping both of you in our thoughts. L
Posted 11/14/2015 10:24 PM (GMT 0)
Welcome Cincy - I know you're scared - I hate that "what does this mean" kind of fear. Your mind leads you to places you don't need to be spending time at but it's very difficult to stay out of.
You're in a good place to get educated along with many who have been in your position. What does Toms doc say are his options at this point?

This is my email to you - Dear Antonia, As I read your description of what you both went through yesterday trying, trying to get help for Don I felt anger at the whole messed up system and very very sad for you. I can only imagine how frustrated and painful that was. No one should be in that position. I'm believing palliative/hospice Care has to help you asap and I hope they're coming Monday - this is much needed for both of you.
I know you love Don more than words can say and you two have a great life together and all you want is more...more time, more love. I am holding you both close and sending peace to your heart. xx
Posted 11/14/2015 10:40 PM (GMT 0)
Thank you Susan. He is at present sitting watching all this nightmarish stuff about Paris, reading his photography books, breathing O2 and getting his IV. He has raised himself onto his electronic seat pad and stood up with just me supporting him lightly (for confidence I think). He walked very well from one room to another twice and was very hungry for breakfast/lunch. It is an improvement for sure. He feels weak but not nauseous. My back is fine again. The gods are smiling on us today I hope.

Carol, how is your sweetie?

Post Edited (Moonlitnight) : 11/14/2015 3:45:20 PM (GMT-7)

Posted 11/14/2015 10:49 PM (GMT 0)
They are! That is so good to hear - may it continue. Please be sure to get your much needed sleep when Don does! Bless you both
Posted 11/14/2015 10:52 PM (GMT 0)
Susan > xx I will!
Posted 11/15/2015 2:04 AM (GMT 0)
Antonia ; its quite sickening that you haven't been able to get the help that you have so needed. I just don't think anyone realizes just how quick the tables can turn with this type of cancer . I am glad that pallitive may be in the offing for you and Don . It can be anything you need it to be ! You have the control over what you want . We had no choice but have palliative because they were the ones who do the pain control. Thinking of you and sending prayers to help you as you care for Don . I know this is very hard !
Hello to new members coming here . ((( Hugs))) Sue
Posted 11/15/2015 2:18 AM (GMT 0)
Welcome to new posters. Antonia (Moon) so happy that you are finding comfort today. As for all of you, I cannot tell you how honored I am to be among you. Such wonderful women. Wow.

Hugs!

Cathy (enjoylife)
Posted 11/15/2015 2:21 AM (GMT 0)
Thank you Sue and a huge hug for you. For those who have recently joined this thread and may not have seen the Sue Saddened Wife thread, Sue lost her beloved Dave a short while ago. She was and is an incredibly strong and loving woman—always here to help and to light the way for others. xx
Posted 11/15/2015 4:21 PM (GMT 0)
Many thanks for the welcomes. Tom's doctor has suggested Lupron, without much explanation or discussion. So we're trying to get a better handle on the options available to him. I've said before that we feel as if we've been kind of sleep walking through this to this point, and it's time to wake up and be more proactive.

Sue, I'm so very sorry to hear of your loss. I truly can't imagine the heartache you're feeling at this point. From even the little I've read, it's clear you were a magnificent, loving caregiver and advocate for your husband.

I felt very angry when I read Antonia's description of the day she and her husband experienced on Friday. Although I try not to get too cynical, I feel the health care profession often lacks compassion and approaches even those with serious medical conditions, like our husbands, in a scattershot and casual manner. The fact that they won't even talk by e-mail or phone when questions arise makes me absolutely furious. I guess I'm naive, but I thought they had ethical duties to their patients that extended beyond 15 minute appointments. And the oncologist trying to make Antonia feel sympathy for her - that's rich!

Hoping all find some rest and peace today.
Posted 11/16/2015 1:59 AM (GMT 0)
Moon, may they keep smiling down on the two of you. I can't help but be amazed at your strength and determination.
Renee
Posted 11/16/2015 2:23 AM (GMT 0)
Renee, thank you so very much. Sending my very best to you for the coming week, and to Lisa, Susan, Carol, Beth, Mrs George, Cincy, Nepol, Krissy, TeamChris and of course Sue. (Did I leave anyone out? If so, you are counted in ;) ) May your men improve, even if it's just a little bit.

Don is way less puffy but still very weak. He had an IV full of "stuff" today and has asked me to get a takeout curry dinner. In a minute, we will go for a little walk around the family room and back to the sofa.
xx
Posted 11/16/2015 6:24 PM (GMT 0)
Hello all you dear women,

I have not posted recently and have just caught up with this thread. We have been in a hormone-therapy lull. And grabbing each day, knowing our turn in the box will come when it will. Nick is still in the zero club with no pain from bone mets. He gets tired easily and can't lose weight but other than THAT, he is in that "doesn't look like he is sick" phase. Our friends have even stopped inquiring about his health! But WE know. Stage 4 is Stage 4! Sleep, cancer, sleep. Keep sleeping.

Headed to South America for a31-day cruise next month. Off to Nagshead for Thanksgiving with my brothers.

My heart is with all of you. My sympathy and empathy prodigious both for those I have "known" now for 2 1/2 years and for the newbies.

Live your life. Live your life. (And ask for help when you need it!)
Posted 11/16/2015 6:42 PM (GMT 0)
Thank you Margot and enjoy your cruise. Glad Nick is still in the zero club. A miracle indeed! xx
Posted 11/17/2015 7:04 AM (GMT 0)
Good to hear from you Margot and so thrilled Nick is in the zero club, which beats the hell outta the G9 club! turn
I just know you're going to have a great time on your cruise!
Love your mantra. yeah
Beth
Posted 11/18/2015 7:46 PM (GMT 0)
Things are very bad here, I am afraid. I cancelled our family trip to the coast as he is just getting worse by the day - bowel incontinence and very weak. I have a substance that is going to trial but has shown remarkable results for PCa when combined with 2DG or metformin. However, it is very potent and can kill if given in too high a dose, even though it does not interfere with healthy cells in any way. This is some of the research we don't hear about. I don't want to give it to him in his horribly weakened state, and the MD who is helping me is unsure as well. I spent 5G on it a week ago so that's more down the drain trying to rescue my guy from this crazy disease. More to the point, I am so fearful and exhausted at this point. Every five minutes he needs something, catheter full, visit to the loo (usually too late) water, food, different food, lift me, lie me down, lift me again, find my glasses etc. The dogs are not getting out and are misbehaving and I have work to do on my main account. Little things like the roof suddenly leaking seem like major things as they all pile up. He needs care. His poor arms and hands bleed and crack constantly and are purple in colour. My poor guy. So palliative support is supposed to call "by Thursday."

Post Edited (Moonlitnight) : 11/18/2015 2:03:05 PM (GMT-7)

Posted 11/18/2015 8:05 PM (GMT 0)
Dear Antonia,
How I wish there was something, anything that I could do to help in some way. You are amazingly strong and must know that you are doing your very best. Sending love and prayers to your and your dear husband. Love, Suzanne
Posted 11/18/2015 8:30 PM (GMT 0)
Antonia, I'm so sorry to hear this sad news. I feel so badly for you and I know your heart is breaking. You are physically, emotionally and mentally worn out! I can feel it in your words and you have every reason to feel all of it. So then, on top of trying to care for Don you have work that has to be done.
It's seems an impossible task, so lets all join together and hope for Don's sake and yours they come through for you both tomorrow. A compassionate person who cares and really wants to help could do wonders for you as you definitely need help with the physically demanding things and emotional support. Hang on Antonia and know you both are in our thoughts.
We are here for you.
Sending you strength and peace and love,
Susan
Posted 11/18/2015 10:44 PM (GMT 0)
Antonia;
I hear your anguish and I know how you feel. Its the combination of everything all at once. I to grabbed at anything I could to help Dave. Is there any way of using the drug you got at the lowest dosage possible and gradually increasing it the normal level . Perhaps the body would get used to what it is getting if it was slow increased. I have said this all along I have no idea how any of you work because it is very emotionally as well as physical hard to look after our men at this stage 4. Some how you will find your second or3rd wind! Know that you are doing everything possible to look after Don ! I hope that somthing anything works for Don . Thoughts are with you with Love Sue XOXO 💗 💗 💗
Posted 11/18/2015 11:10 PM (GMT 0)
Thanks Sue, ((x)) I had thought to titrate it. I do have medical support on this one but the actual giving has to be me so that no one loses their license. My main concern is that it causes tachycardia and I don't want him to have a heart attack due to his murmur. Just going to change catheter and run out to get milk and prescription. My clients are being super but the pressure is still on. Hugs and love to all. Susan...got the EM and your message back there xxx
Posted 11/19/2015 2:33 PM (GMT 0)
Antonia, I'm praying that you and your husband dh get some help and support today. Your love and compassion for him shines through your message, as does the stress and anxiety you're experiencing. Trying to cope with a roof problem and work is just too much! I know we're all hoping to hear that palliative support becomes a reality today.
Posted 11/20/2015 1:43 AM (GMT 0)
Antonia; thinking of you and Don all day today and hoping you sre going to be getting some help. XOXO 💖
Posted 11/20/2015 2:20 AM (GMT 0)
Not getting any Sue. Called and called and then had to take him to hospital as he was falling all over and couldn't breathe. He needs BLOOD. So they took him up to palliative and are giving him some. I am making sure he comes home very soon. Miserable place.
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