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LisaLeeM's Message Board Messages

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Happy 4th Lena. I know this hasn’t been easy for you. I’m glad your daughter is there. Congratulations to her finishing university and working! You must be very proud. I hope Pete checks in. I hope everyone continues to keep in touch. Love, Lisa
Hi everyone! So nice to “see” you all! I kind of put everything cancer related in the past to move on. Ray - I’m glad you’re able to smile a bit with memories of your Helen rather than just tears. Punky/Marge/patty - It seems like we’re all doing better than we were. I always knew that my situation would be easier than all of yours. It has been. Although I miss Gregg more than I thought I would. Get this - his daughters begged me to be at his service so I went. I am now a “yia yia” to his 7 month old grandson who looks just like him. I don’t get close enough to get burned but it’s been OK so far. Gregg will be gone a year in August. It flew by. In a sick irony, my boss who was incredibly understanding informed my team he has....throat cancer! I guess fate stepped in again because I’ve been able to offer him some tips on things I learned. His is HPV related and his odds are much better. Curable. He just finished treatment and ended up in the hospital. He’s not even 50 yet. Ex Army. I’m thinking that will work in his favor. I do think of you all and am so grateful I had you during the worst time of my life. I think of Pete, Lena, and Gigi...I hope they’re ok. For any newer members reading...we’re out here but burned out at the same time. If you post I know I’ll try and offer whatever I can. Take care of yourselves!!!
Thank you sweet Ray. I hope you are getting along alright these days. I don’t regret coming here which was what I feared - that I lost 2.5 years. No. I feel good. I wish I could have had more grace along the way but that was never going to happen. I think of each and every one of you, especially now. Sadly, we seem to need a new message thread...like retired caregivers. My heart hurts...but my chest pains disappeared. I don’t feel trapped, claustrophobic anymore. I hope Pete and Gigi are ok.
Thank you Patty. This group carried me through some really awful times. I’m grateful to you. Yeah - Gregg would still do it. You’re right about the mixed feelings. I was sad in the grocery store for no apparent reason....then I was mad reading old texts...then I was happy seeing a picture of him from the ‘80s. Oh boy! I thought I’d be off the rollercoaster.
Thanks Marge. If you do ever need some help - my calendar is clear and I have loads of experience! Your kind words are making me cry. Lol I haven’t in a few days
Well, my friends - I now join the group of “former” caregivers. Gregg ended his journey on earth 8/21/18. He is finally free of his pain. I moved him to a new house in 7/15 when he was still in a nursing home. I lived there with him hoping to help him get his strength back. A neighbor kid, 16, was a huge help and comfort to him. His absentee daughters caused me nothing but heartache during his last few weeks and now after he is gone. Soon I too will be free. All my bitterness, anger, and resentment went away and I’m grateful I did stay with him during this time. I will never forget Sunday August 19. We were watching Alaskan Bush People and I asked him if he was alright. His response was “I’m OK because you are here”. We did what I came here to do - take him to the end. I do miss him which I wasn’t sure would happen. Not necessary, but more detail if you’re curious as a caregiver. Don’t read if you’d rather not know: Gregg was in and out of the hospital since radiation ended last September. I blamed the abuse of pain medication but finally accepted a second go around with radiation was a huge factor (and if given a chance he might not have). He came home but fell from malnutrition and zero muscle. He was in ICU with possible pneumonia. I was called and told he wanted hospice (he hadn’t said anything to me). He cried being so happy to come home and not be forced to eat, drink water, or even get out of bed. It was easy for me to not fight - to not beg him to do those things. I had his oncologist see him before he signed any papers. He was home in hospice 10 days. The night before he passed he threw a fit. Writhing in pain, digging his heels into the bed, kicking, flailing. He had no pain to this point and hospice said give him meds and call them if it didn’t stop. It stopped and he was sleeping. He was in the same position in the morning (but he doesn’t move much). When hospice came she said the fit at night was a common thing before death. In typical Gregg fashion he chose the “not peaceful” way. Although I say he went peacefully in his sleep because technically he did. This man was terminal 3/1/16. He got 2+ extra years. 1 of them was so worth it for him. The second one there was not one day where he got up and did anything fun. He had some joy but I’m not sure he’d do it again. He did not die from cancer. Modern medicine killed the cancer but destroyed his ability to truly live. I do think if he was not abusing pain medication that maybe, he would have had a chance. I’ll never know. I believe in the immunotherapy drug Keytruda. I’ve heard a lot of stories of people surpassing prognosis and leading semi normal lives.
Lol I dig cheap beer and good bands! In NJ I lived a mile or so from the famous Stone Pony, where Springsteen got his start. I wish I was there right now. I wish we could all hang out there together. Drink some beer. Maybe do a few shots (and I don’t even drink except for wine once every few months)...maybe listen to the next great band (although IMO there hasn’t been good music for me since the ‘80s. Honestly I think living with Gregg actually stops a lot of chaos. The girls won’t ever visit and I won’t get emergency calls!
What I would give to hang out with all of you. If anyone heads to Florida, NJ, or up that eastern seaboard let me know! I’m so sorry for your pain Pete. You’re on my mind a lot. Keep replaying the words Misty said to you...and it will keep you going.
Hi everyone. Just thought I’d check in. Not sure where I left off. Gregg has been in/out of the hospital since September, mostly results of malnutrition. His friend living at the house had moved out along with 2 months rent. He asked his middle daughter (the stripper) and boyfriend to move in. Around that time they found rats were living at the house. The daughter/boyfriend stole about $1k from him. I was called in by the older daughter (the one who tried to get me in trouble with Dept. of children/families). We agree to move him to a house she used to rent (cheaper, more accessible). Gregg started peeing in the bed, not getting out for a week. I go to the doctor with him (first time in a long time) and blast a nurse I barely know. Either stop treating him or cut these drugs off. I’m told it’s none of my business. Really? I’m the one cleaning up the mess. Sure enough the next morning he ends up in the hospital. Nobody packs a single box to move him. I was going to my moms for an unspecified amount of to,e because I’ve had it. I get back- still not a box packed. 33 days in the hospital - and they spring discharge on me. No notice. They sent him in a cab and dropped him off on the doorstep. No voice, can’t drive, can’t feed himselff, no meds. Rats in the house, youngest daughter packed up her stuff, finally had enough, moved out. Within 5 hours of discharge he’s readmitted and they send him to rehab (nursing home). Thank goodness because it’s what he needed. The older daughter disappeared. Sure enough I’m left alone to pack, move him, unpack - while she’s away on another vacation. I paid people for help and she’s yelling how I have no right to spend his $. Really? On 4th of July I got a call from my mother that my cousin was killed in a car accident. It’s devastating for our family. Even that got no sympathy for me. I can barely walk (my own form of muscular dystrophy) and I’m ready for a nervous breakdown. Well, Medicare won’t let him stay at the nursing home. Medicaid requires you have nothing in the bank. So. I’m picking him up tomorrow. AND IM LIVING IN THE NEW HOUSE. Why? I’m sick of this. The hospitals, doctors, neighbors, daughters all call me with emergencies. They text, call, email. At this point it’s just easier. There are 2 bedrooms. The rule is the daughters are to visit with advance notice (so I can leave). DCF knows the situation and they said I can’t get in trouble (if the daughter wants to do it to me again). I’m awful to Gregg. I don’t think it’s going to change. The nursing home said there are ways around Medicaid and I can get him back in there. That’s what’s giving me some hope. I hope you are all doing well. Lisa
I’m so glad you came back to us and that you took the time to write your story. I love Misty and I love you! You have too much to share to curl up in a ball and give up. I always say I’m writing a book about my wacky situation but it would be a tragic comedy. You, my friend, could write a beautiful love story slash guide to living with cancer. None of us have met you yet you’ve given us much comfort in our darkest days. You’re a model caregiver and your Misty a true warrior! You never gave up on fighting or on each other. The love you shared is something most people wish they had. You are a young man and I think with all the love you clearly have inside - you’re here to share it. Maybe as a Big. Brother, a senior dog foster dad, a volunteer at a cancer center, a mentor for caregivers. Romantic love again? Who knows. I hope so for you one day, but until then do your house chores and keep sharing your love and light. I think of you and everyone here all the time. I wish you peace! Lisa
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