Tagged: #TAS-120. #hand-foot syndrome
August 31, 2018 at 4:27 am #97443middlesister1Moderator
I am very sorry. My condolences are with you and your son. When Dad died a year ago, the last few days were very rough, and I still have days that I wish we could have done more to make him comfortable. I heard something yesterday which gave me a bit of comfort now over a year later, and in the future I hope it will for you too- “remember how he lived, not how he died “.
Take care of yourself,
CatherineAugust 30, 2018 at 12:10 pm #97442sfbaybreezeParticipant
Kim (and Nathan)- I wanted to say how sorry I am for your loss and extend my sincere condolences. Thank you, Kim, for openly sharing your experiences and feelings with all of us on the discussion board. I wish you and your son peace and comfort during such a sad and painful time, TillyAugust 30, 2018 at 10:22 am #97441gavinModerator
I am so very sorry indeed to hear of the passing of Rich. Please accept my sincerest condolences. You both did everything that you possibly could to help Rich fight his cancer. I wish that there was something that I could say that would help ease the pain that you feel right now. Please know that we are all here for you and my thoughts are with you and your family right now.
GavinAugust 29, 2018 at 9:36 pm #97438
I am so, so sorry to hear this sad news. Please accept my condolences and prayers for your loss.
You and Rich have contributed so much to the battle against this rare cancer. His committed participation in trials even when the going was tough, your dedication to documenting his experience for our community, your and Nathan’s unwavering support and loving care for Rich, are testament to the courage and heroism that major illnesses can bring out in all of us.
Please consider staying in touch with our community. Our thoughts will be with you in the difficult days ahead.
Regards, MaryAugust 29, 2018 at 8:28 pm #97437
Rich passed away yesterday afternoon, fighting this cancer was so hard on him and dying was no different. I had prayed when the time came he could go peacefully but, that did not happen. The last few days he was so agitated and no amount of meds could calm him down he kept saying “I’ve gotta go” and trying to get out of the bed and the labored breathing was so hard to watch. Nathan and I have lost a huge part of ourselves when we lost him, there’s a hole inside that can’t be filled and it hurts like hell but, I keep reminding myself and our son that he’s no longer in pain and we now have our own special angel in Heaven watching over us but, it still HURTS!
I want to thank everyone here for the help and info that this site has provided us with and I wish everyone effective treatments and a long happy life.August 26, 2018 at 10:42 am #97421gavinModerator
Glad to hear that you were able to get Rich home now and sorry to hear though of the initial issues with hospice care. Hopefully this is just a one off. What great care though from the pharmacist! As you say, one of the perks I guess of living in a smaller town. Here is a link on ascites for you that has a lot of info in it and I hope that it is of use to you.
You should def ask the doc about the fluid coming back quicker if you keep draining each day but my understanding is that it can come back quicker the more that it is drained. I am not an expert on this at all but my dad had it done a few times and after each time he felt a lot more comfortable once the draining was done. Speak to the doc about this Kim.
My best to you and Rich,
GavinAugust 25, 2018 at 10:14 pm #97418
It must be a relief for your family to have Rich back at home. I hope the hospice care gets better and more responsive. Super impressive story about your local pharmacy, you are lucky to have such support from your community.
Take care, regards, MaryAugust 25, 2018 at 9:24 pm #97415
We got him home finally! His ammonia levels are now higher than when I first took him in they raised the amount of medicine for that but the Dr told me at some put the medicine won’t be able to keep up and then we will have to increase his pain meds to make him comfortable.
Hospice nurse has not gotten off to a great tart. She came to the house without filling his new pain meds then asked if I would go back to the hospital pharmacy and get them filled. That’s a 1 hour drive each way for me and what I was suppose to take Rich with me he can’t be left alone and no way will I make our 11 year old take on that kind of responsibility. So I told her no, the thing is the nurses at the hospital gave her the scripts and she would of walked right by the hospital pharmacy as she left to get into her car to come to my house. Our pharmacy here in town was already closed but thankfully we live in a small town and I know the pharmacist so I called and he opened back up for us and filled them and then said if we needed anything more before Monday just call him. One of the perks of living in a small town everyone knows everyone and what they are going though. I did tell her she was getting off on the wrong foot that she was suppose to be making this easier for us not harder and if it continued I would ask for someone else. May of been harsh but you don’t mess around with someone’s pain meds when they have cancer.
They put the drain in his stomach yesterday for the ascites and I was shown how to drain it here at home, it’s pretty straight forward and easy to do and now we won’t have to drive all the way back to the hospital each day to have it done. Another 2 liters was drained off. I forgot to ask the dr that does this fluid accumulate faster when you drain everyday if it does should you then do it every other day?
Now that he’s home I pray he’s not in a lot of pain and we can get into what is now our new normal routine.August 25, 2018 at 6:14 am #97411middlesister1Moderator
I’m very sorry to hear your updates and hope they get him home soon. One thing you mentioned in a recent post that I’m sure Rich knows is not the case- by there being no treatment options or deciding that it’s time to go for quality of life, does not mean you are giving up on or don’t want him. There is nothing you could have done differently. It’s because you love and care so deeply, that we doubt ourselves. My thoughts and prayers are with you and your family.
CatherineAugust 24, 2018 at 11:00 pm #97410
My fingers are firmly crossed that you and Nathan have Rich back at home tomorrow, and that his pain control gets well figured out so he is more comfortable. Your family is dealing with a lot – I hope the hospice services help ease all the demands on you, and that there is enjoyment of a brand new school year.
Take care of yourself, I hope you can get some rest.
Regards, MaryAugust 24, 2018 at 10:42 pm #97409
Today Rich went into surgery to have a drain put in so when he comes home I can do it instead of going back to the hospital every few days, they got off another 6 liters today and it went well. He was suppose to come home today but again I noticed him not being himself at first they thought it was because of the morphine so I asked for another ammonia test and it came back even higher than when I first brought him in. He just can’t catch a break here. They increased his meds for it and then tomorrow they will test again and if all is fine he can come home. His Dr said these ammonia levels are going to be hard to keep under control that there will come a time when the meds will not be able to keep up because the liver is failing so fast so when that time comes they will stop that med and just increase his pain meds to keep him comfortable. He’s still in a lot of pain, one minute he’s fine then the next he’s double over in pain so trying to get the pain meds figured out is beginning to be a struggle but I promised him if there is nothing else I can do for him I will not let him lie there in pain!
Palliative Care nurse came in today and we agreed that Hospice Care would be our best way to go. With Palliative Care they do not come to the house to check on him, get his meds and are not on call 24/7, they are more like the person I would call at the Dr’s office and get advice if I had a problem or make appts for us, like she said she would of been the person we needed before all this happened now we are beyond what they can provide, sure wish someone would of told us about them before this I sure could of used their helped.
My biggest concern now is trying to get him home, he wants to come home so bad and Nathan and I are lost at home without him, neither one of us have a had a good nights sleep since he went in the hospital.
This is not how I wanted our summer to end and how I wanted Nathan to start his school year. Nathan is afraid Rich won’t be able to make it next Wed to his school for open house, our town just built a new Junior High School for grades 6 thru 8th and Nathan wants Rich to especially see their new Band room and uniforms and his locker this is the first year he will have a locker(I guess it’s a big deal to have a locker!) I’m praying he will at least feel up to the tour and then I’ll take him home and I’ll go back up for all the meetings and putting school supplies away.
Have a good weekend everyone not to many summer days left and snow will be here soon for us.August 23, 2018 at 12:32 pm #97402sfbaybreezeParticipant
Kim- My heart is touched by all that you are sharing. I will keep your family in my prayers, TillyAugust 23, 2018 at 9:24 am #97401
This is a lot to take on, for both you and your son. Please do not feel hesitant to reach out to family and friends who can offer support – they will want to help but may not be sure what you need at this time.
I am hoping that Rich’s condition can be stabilized and that he is more comfortable – he has been through a rough few weeks. Please stay in touch – the community is here for you.
Take care, regards, MaryAugust 23, 2018 at 12:27 am #97400
Thanks Mary for answering. So today Mayo called and said his liver numbers where to high to start a trial and his condition to weak to do a biopsy that he should stay home and enjoy time with the family. We spoke to Hospice today and tomorrow we will speak to someone from Palliative Care not really sure of the difference between the two but maybe after tomorrow I will. They took another 4 liters off his stomach so they are talking about putting in a drain so I can just drain it at home. Things seem to be going down hill fast now, wasn’t prepared for how quickly his health has deteriorated. Even though we’ve known how bad this type of cancer is you keep thinking there will be something new coming out that could help.
Of course the hardest part is our son having to witness his Dad getting sicker each day and saying to me that I have to find a Dr that will help him or another trial and me telling him his Dad just isn’t strong enough to continue that everything that could be done just hasn’t worked. It hurts to hear my husband say that he won’t be able to see our son grow up and help him to become a strong and caring man and that we only got to have 34 years of marriage and not the 50 years that we always talked about. A lot to take in a once.August 22, 2018 at 7:21 am #97394
I am so sorry that Rich’s health has taken a turn for the worse.
The question you are asking about quantity versus quality of life is a personal one for each patient. Some people do want quantity even if this means difficult treatments. Others choose differently. But this seems a question for which a patient’s views must be gently sought even when the patient is worrying about not disappointing others with the choice.
You may wish to start doing some research related to hospice resources in your area, maybe not needed immediately but this is good information to have in hand for any of us. Hospice is not about giving up – it is a medical care mode that emphasizes the patient’s comfort and well-being. Hospice can extend life in some cases, I imagine this may be because it takes away stresses on the body that come with some treatments.
Rich is a courageous fighter – I hope his stay in the hospital brings some relief to his symptoms and more information on what is causing the confusion and balance issues.
Take care, try and get some rest. Rich is so fortunate to have you by his side.
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