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

Myman!!! It's one foot in front of the other... That is all I can do, just like everyone else on here. Having autoimmune disease/s (many, like me, tend to add to the list of afflictions as time goes on) is really just one huge annoyance in my life. Don't get one, lol, as they are as much a pain to the docs and so hard to diagnose and treat- not to mention expensive.

Just one day on the HCTZ and I lost 10 lbs in water weight and already feel less bogged down, even look less bloaty. I got some compression socks and have two different ones on to compare them, I just have to remember this if I decide to venture out today! Reality is I will be doing schoolwork as this class is hard with a LOT crammed into 8 weeks. Evidence based nursing.... I will have about a month off for the holidays so all is good.

***I posted this elsewhere but as I mentioned before I was looking into a Ladies GFMPH and I have secured us the place- My godfather's house in Cazadero, CA. It sleeps 14 but I think limiting to 10ish sounds better for a first time unless there is overwhelming response. This is for ALL caregivers past and present. I think that the healing and the friendship, understanding and respite we will enjoy together is going to be important and even if your partner has left our world I want you to know this is for you as well.

There will be no cost for the accommodation, but some may share a room if that is ok. There are 4 bedrooms and a two livingrooms with converting sofas and several other places to sleep in the lower level that has a deck and a hot tub. The place has full amenities and as a vacation home they have it set up for comfort and entertaining. They also rent this out and many weddings are held here. Its very near the ocean and serene. There is a wood sculptor across the road with a tea house/meditation room her built I will see if we can use (and get a tour of his amazing work). It is wine country so a trek to some vineyards would be in order. We can spend time at the house and do much of the cooking but please- nothing elaborate and time consuming as the men do- I want this to be relaxation and rejuvenation. Speaking of- there is a spa nearby too!

So I am looking at dates and this the hard part- as I don't want to interfere with GFMPH in April, but have to avoid the rainy season and hot summer seasons. Suggestions for dates are welcome. One which was tossed out is March 3-6, 2016. I think otherwise it may have to wait until late summer or fall... Ideas are welcome. We need to pin down a date so they reserve it for us.

Also- I created a facebook group Ladies GFMPH for this, but the response is great to have our own ladies group just because. So even if you can't attend but want to be a part of this group please let me know!

Ideas are welcome on any of this!

The El Niño is causing havoc up here in British Columbia. Flooding (not bad) and my lawn is a mud patch. What state do you live in, Beth?

I live in no CA just down the road a few hours from where Krissy is referring to for the get together. I think June would be great if it's not all booked up during that time. Our school is out mid-June, and I'm an educator.
Beth

Good Evening Ladies;
Retreat and getting to know one another sounds lovely . Just post on dates when you have a idea. I am doing a couple of trips , one this winter to Florida. Vegas in 2017 when my neice gets married.
I miss Dave so much it hurts !! I try to keep very busy and it helps keep me centered. I think when I look back I can at least feel good that there just wasn't anything that I didn't do to look after him.I threw myself completely 24/7 into caring for him as well as looking after hearth and home . I only wish a million times a day he was still here with me . The song All around the world people are praying for me , rings true as a sympathy card came from Ireland on Fri and a old freind of ours has put in for mass to be said for 10 days for Dave . I will have to put a card book togeather as there are over 80 cards of sympathy that have been received. will put the get well cards and notes that our grand children made for Dave . My grandson Sutton on a bouquet of floweres he got for me the Day Dave died said Nanna I will always be there for you! So many precious words of love ,kindness from family and freinds. Looking at pictures is hard and yet I look at them ever day .It is so true those we love never go away they are with us every day and I would never want Dave to ever not be the best part of me. Those like me who have lost their men to this atrocious disease will know this feeling .I hope with all my heart every one else doing battle is in for many years! As hard as PC is enjoy the the time togeather tell each other how much you love each other , say it with a hug , a kiss, just holding a hand . I know Dave knew just how much in love I was with him and In that I have no regrets either. For sure from the start it is the kind of cancer that affects both of you physically, mentally , and it shattered my world....Take care All battle hard, remember to breathe, look after yourselves , and take some you time 💙 XOXO 💙 💙

Sue, your words are always so raw and moving. It is as if your heart is speaking, which of course it is. You and Dave will be together forever...a TRUE love story. My card sits here with the magazines still as I can't seem to get it together. Today, I have been trying to help my sweetie off the sofa - it takes half an hour and every muscle in my body. We have cried a lot today. We haven't done this before. He looks so frail and sad and, just three years ago, he was big and strong and we were looking forward to our "retirement" and having fun together. We've been together for 30 years and he is truly the light of my life. Today I feel desperate. Our options are so limited and we have not had one break drugwise or anything else-wise. The drugs were all so destructive. Now I am praying that the radiation fellow won't look at the node and say there is no point in doing anything as the node itself is causing the speech and drainage problems. The palliative doctor is all doom and gloom, and we have a "workup" with him on Tuesday. Sue and all you ladies, it would be lovely to meet up somewhere. Hugs and love xxx

What the h#ll are you girls doing on page 3?? bumpy roads ...NEPOL

Ah, Cathy, I am so very sorry. If your sweetie will be more comfortable there, and you will not have the added burden of having to try to move him, then this is good. I have the opposite problem in a way. I cannot move Don and two nights ago he slipped in the bathroom and I couldn't get him up. He looks awful. The node at the back of his head - which is huge and as hard and solid as his skull - is blocking his face from draining so I can barely recognize him with the slurred speech. He would never go into any form of care and our daughter would be similarly horrified. So I carry on waiting for the next calamity. I am calling palliative/hospice home care tomorrow to try to sign on so he can at least have a bath and backup. He does sponge baths but I think he should have more than this and he won't allow me to do anything except empty catheters and help with diapers. So fricking sad. Today is sunny so we will go for a drive. He gets upset when I want to drive but I am scared he will pass out or something and we'll both be gone.

Radiation to the skull base and hopefully node will start this Friday. I have a "Big Gun" drug ordered - actually a very expensive chemical with very powerful studies to back it up, so that gets here next week but I fear it will be too late. The doctors can do nothing, so this is a last-ditch effort. The 3BP we tried before is not very good for reaching bone and I don't see any studies to indicate the new one will either, although it has been noted to be especially effective on PCa. Although I hold onto hope in my heart, my soul tells me a different story. I don't believe my soul has ever been wrong.

Cathy, are you able to stay in the hospice home? I know these places are supposed to be wonderful but no way will Don or my family accept that this disease has a plan that has been carefully crafted over millennia. I am selfish at times...working "full time" albeit at home, a sick dog, a house that was in reno but has been left since he was diagnosed. I long just to go for a walk in the sunshine and cry, without the fear he has slipped over while I had gone.

Love and hugs to you all. xoxo Moon

I am filled with both sadness and admiration as you ladies are so strong and caring. Your men are very, very fortunate to have you in their lives.

Moon, I'm sure you know this better than I do but hospice in many places is a service and not a building. My mother-in-law passed many years ago of lymphoma but spent her last weeks in her own home with loving care from the hospice workers who were with her almost constantly.

My prayers are with all of you.

Jim

The women here are completely awe-inspiring to a newbie like me. I would be so honored to be able to spend some time with you and will be watching for dates. Can you tell me, if there is too great a response, are there any local hotels or inns available? I would be happy to book in somewhere close by if I would be able to spend some time with you all. My thoughts and prayers for strength and peace are with you and your men - Suzanne

Thank you for the warm welcome Moon, especially in light of what you and your dear husband are now facing. My husband and I live on Long Island in New York, but we spent 15 years just outside of Toronto - so that makes us almost Canadian cousins. I am fortunate to have two sisters (one my twin) and we are very close, but as many of you know sometimes close family can't or won't hear our worries. Knowing that you are all here makes a world of difference to me. Hoping we will meet in the new year. xo

Suzanne. We are indeed "Canadian cousins" and Sue (Saddened Wife) as well. In this context though, we are all sisters, fighting for our guys.

Hugs to all this Remembrance Day.

Thank you Sue. Your voice is very healing, to me anyway, but I'm betting I speak for all of us. xx