This blog has been, at least for me, so affirming. Trying to solve a problem, trying to make our loved ones well, or at least, extend the expiration date. Here's my question, as I count pills and put them into their daily pill box for the week, and then I separate a different grouping of pills, those for morning from the afternoon pills, especially those that must be had with food, how do you do it? I don't mean, how do you do it every single day, that I don't mind. This blog is filled with amazing fighters, I'm a fighter. What I mean is, when the person you love, just doesn't want to take all of those pills, or eat when they don't feel like eating, to exercise when they just want to sleep all of the time. My husband eats barely 500-1000 cal a day these days, he just doesn't have the taste buds and quickly reaches satiety. It is heartbreaking to see fight is no longer there.
Just to back up a bit, my husband Greg is 61, otherwise healthy, a writer, a drummer, funny, and smart. He was diagnosed May 1, 2015 with GBM, non-operable. His MGMT is methylated. He just completed his 6th cycle of Temodar, 6 more to go if he decides to continue. He last MRI continues to show about a 10% reduction in tumor size, and it has held steady for a couple of months.
So I put it out there, when the tumor has taken that part of them that fights, how do you manage? How do you cajole them to do what they don't want to do? Sadly he feels like he is living only for the next chemo treatment, or days are spent waiting for the next pill? Yes, we do try to do things, visit friends/family, travel, etc. OK, that's it, thank you for allowing me to vent.
Hello AGM,
ReplyDeleteI have lower grade oligo, only had awake brain surgery. So I can't say I am going through the same stuff as you and your husband, but it was/is hard nevertheless. Being diagnosed with such a disease at 26 years old sucks, as you imagine. I started visiting psychologist 2x per week and it really helps me. Maybe you or your husband should try it, highly recommend it. I think that we should try to maintain our mental health as much as possible also.
As for no appetite, did you maybe with try CBD&THC?
Dear Matjaz, Thanks for your response and allowing me to bitch. I'm so sorry for your diagnosis. Yes, Greg does see a psychiatrist, he has for years. As for CBD&THC, he's been on the spray since June 1 and he hates it, but he loves a little smoke at night!
DeleteExtending survival is key right now given all of the promising treatments relatively near approval decision. It is a tough fight and the historical low success rates of others can bring us all down. Finding and focusing on the promising potential solutions that are around the corner can help keep a positive fighting attitude.
ReplyDeleteYes, that is certainly my goal. I guess my point was, when you are so completely exhausted and depressed by not only your diagnosis but also the symptoms and side-effects, it is hard to focus on wellness. It can all seem very daunting.
DeleteDEAR AGM,
Deleteyou should explain your hubby that you love him very much, and you need him, this way maybe you induce him the will to live , to fight with this ugly tumor. Tell him "I love you " more often than is expected.Love is a very poverfull weapon against illness.
I agree with the above from patient's perspective!!
DeleteTotally agree from caregiver's perspective!
DeleteThank you all for your comments. We do have a loving marriage, we recently celebrated our 30 year anniversary. We easily share our love for each other. I like to say, a good marriage is like a warm soft blanket on a winter day. It is there to surround and comfort you. The hard part is getting through when he is trying hard to just to cope. He feels like he lacks purpose. Writing, which was his profession, is no longer possible. Living day-to-day, when it mostly seems to be about the monster in the room is sad and difficult. We do try and change things up, but clearly not always successfully. Travel had been a major outlet for us, but short-term memory makes feeling independent more difficult. Anyway, we'll figure it out, in our own unique way. I just needed an opportunity to vent. Thank you all.
ReplyDeleteMy heart goes out to you and my prayers are with you. I am also caring for the love of my life,my husband of 37years.He wants to live and does try so hard each day and he hates losing his independence.He's been fighting GBM for 16 months, had his second surgery 7 weeks ago and learned yesterday that the monster is already growing back. I just hate everything about this disease. Guess I'm ranting now. Bless you all.
DeleteDear Jaki, I am so very sorry, what terrible, terrible news. It is hard to watch our best friend and partner, go through this. Greg does try to stay on top of things but sometimes, too often, he just forgets or he is too sad. Good luck to you both. ~Antoinette
DeleteAGM - You see what an important topic this is by the number of comments. Thank you for bringing it up. There are no rules here. We have to make them up as we go along. We do our best and we do it with love. We do it so that no matter where the road takes us, we will have no regrets. We have given everything we had to give. I know: easy to say, not so easy to do. If you haven't read Radical Remission by Kelly A. Turner, Ph.D., you might want to check it out.
DeleteThank you Jude, I do have the book Radical Remission but I haven't gotten around to reading it yet. And thank you for your kind words, very reassuring. Friends are helpful but the community in this blog gets it.
DeleteI relate completely. I had dad taking 93 pills a day in the beginning. Now I have shortened it to maybe 30? I use dixie cups for AM and PM and grab the 5 most important at a time and push those on him. He has missed lots of them I'm afraid. It's hard. Somedays he's more cooperative than others. I don't live with him (I'm a mile away) so I run over there a few times a day. My mom is a retired RN but her brain is also injured (lyme disease) so she spaces out on things. Hang in there.
ReplyDelete