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Thread: Jim's Update

  1. #551

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    Hi Rose and Jim! Sorry about the dispensary woes! Look up "weedfinder.com" to try and locate a dispensary with what you need.

    My family is going to Portland, OR soon for a vacay. We are looking forward to sampling some products to see what effects they have on our various issues, so in my case, I am very thankful for the recreational aspect of the industry.

    As for the appetite issues...time to bring out the protein drinks! You might try some shakes made with avocado and coconut and other tropical flavors. Many times cold foods go down a lot better than warm, usually because they aren't as smelly and odors can really be offensive during chemo and that affects taste and appetite.

    Hope the next days go smoothly.

    C

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  3. #552
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((callyflower)))))) ~

    Oregon is a beautiful state. I hope that you have good weather on your vacation and that you find beneficial medicine.

    I voted for legalization, so I'm fine with it. What isn't so fine is the truckload of constraints the adult use has placed on medicinal use. MMJ dispensaries have to go through mounds of certification and licensing, and the rules and regulations are enormous. That puts a patient, such as Jim, in a difficult spot, when a dispensary upon which you've relied for 18 months shuts you out. And only because of the state's stringent regs.

    We have many avenues for finding delivery dispensaries. And we did locate one in our proximity with the items Jim needs. Like all dispensaries, a copy of the patient's rec letter or card is required prior to providing service. I sent that, and we haven't had a response. We were going to call today, but it got late, and John was on his way over to turn Jon, so we postponed it until tomorrow.

    Jim does drink a protein shake, Orgain. Completely organic and plant based, designed by a physician, who is also a cancer survivor. They are delicious. In fact, he took an Orgain shake with him to his infusion yesterday.

    Jim gets full quickly now. He did eat a rather large helping of spaghetti last night. But he didn't eat again until 3 this afternoon. And that was a bowl of soup, which he said filled him like a prime rib meal. (We are vegetarians ~ he is referring to his past.)

    Today, a 1 p.m., when the sun is directly over our home, Jim decided that he would attempt to repair a broken sprinkler in our front yard. We have a gardener to do that, who is also responsible for breaking it when he mows our yard. But no. Jim had to do it.

    After 20 minutes, he came into the house, huffing and puffing, sweating, his back aching from bending, and his knees hurting from kneeling on the curb! I was about ready to get the O2 concentrator, but he insisted that he'd be fine if he rested.

    Once he recovered, I told Jim in no uncertain terms that he must stop trying to do things that are overexerting. And stop going out in the sun in mid-day, you Englishman! Early morning or evening, yes.

    He said that he feels useless.

    I responded, "You are NOT useless. You are Jon's dad and my husband, and you're here. With us. That is all we need. You spent 24 years working on our home and taking care of all of our odds and ends, like this sprinkler. You're done. You can't do it anymore without risking your health and your life. We have someone we pay to care for our yard, and he can fix the sprinkler. And we have a plumber to replace our toilets. And we'll hire someone to do our floors, and all of the other stuff we need to get done. You have one job: kick cancer. That's the biggest project you've ever tackled, and you need all of your energy to do it. And you have to save yourself for Jon, because I need you to be able to help me pull him up in bed every night. You are useful. In a different way now."

    He coughed up a few traces of blood last night, but none today so far, thankfully.

    When John arrived, he asked Jim, as always, "How are you feeling today?" And I nudged Jim and told him to tell John about the sprinkler. John said, "Bud, why didn't you tell me? I'll take care of it. You don't need to be worrying about that kind of stuff."

    Once we were finished, I walked John to his car and showed him the sprinkler, and he went into our garage and found the old sprinkler and said, "I love to wander around Home Depot. I'll get this replacement and fix it for you this weekend."

    God always knows when to place an angel in our lives.

    Prayers for safe travels for your family and a fun adventure on your vacation!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  5. #553

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    Thanks Rose. I have been busy planning every second of our too short vacation. Planning to see the falls, eat at many food carts and go ziplining through the forest in WA. I am also going to have my "daith" pierced to see if it will help my migraines. I am not confident in the piercers in TX. Oregon seems to regulate stuff like that better.

    Yes, there seem to be many snags in the cannabis industry. Always too much red tape. Still, having options is a good thing, and those in legal states are very fortunate. I know 3 people right now, including a 96 year old woman on hospice, who are literally begging for legalization here as opioids do not agree with them and they are in pain. It breaks my heart as I know there are many more like them.

    Jim must be incredibly frustrated, as well as scared. It's frightening when our bodies' functions do not match with our minds' desires to "do." Please continue to assure him that he is not alone and that simply "being" is a wonderful thing and more than enough!

    Here's hoping for a peaceful weekend.

    C

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  7. #554
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    Hi Rose! Ah, that is so frustrating and so man-like of Jim to want (need) to repair the sprinkler in order to feel useful. You know, I do understand that, I really do. It is very difficult for all of us to simply sit back and receive care (and of course Jim is still caring you and Jon!!!) but you know what I mean. Not doing the chores he used to. I remember Jim absolutely needing to clean out (I mean WASH) the inside of the garage when I came home from the hospital with Nicholas as a baby. LOL That was his way of showing he cared. Every time I catch up on your news Rose, I say a prayer of thanks for John. I'm so glad that he's in your life - he is a blessing in so many ways. And I am sure that he is such a diplomat with Jim too, knowing that Jim feels badly about not being able to fix the sprinkler at any time of the day. Not much new around here except that Nick got sick with a cold a couple of weeks ago and then Jim and I caught it. It's taken till now to go away and now we both feel fine, but it's been almost 10 days which is a long time for a bad cold. Daisy, our new puppy is growing! She is adorable and she makes us laugh all the time. Luckily, she's sleeping through the night now (well, for the last couple of nights anyway). We brought her to the cottage up north and discovered the joys of digging a hole in the beach and barking at waves. She had so much fun. All is well around my hacienda - I send you my love and a very big hug. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  9. #555
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    callyflower~

    Your vacation plans sound like lots of fun, although ziplining would scare the wits out of me (fear of heights). I had to look up “daith!” I learned something new from you again! I hope it helps quell your migraines.

    A 96 year old hospice patient should get whatever she wants. Ack! You know that Big Pharma isn’t happy at all about states legalizing MJ or MMJ. They’d much prefer people being addicted to opioids, and thanks to them we have an opioid crisis in our country.

    John, who will be 50 this year, is convinced now that he wants to take CBD oil. He takes meds for hypertension and high cholesterol. He loves steak, eggs, and salt. Of course, I’ve been gently encouraging him to cut back on all of those things. So, I’m ordering the CBD oil, which we take, for him, and I’m hoping that he has good results. I know that I feel better, and Jim’s overall condition for a Stage IV cancer patient is incredible. I think everyone, regardless of health issues, would benefit from CBD oil.

    Cancer has changed our lives in so many ways, and one of the hardest changes for Jim is going from a “Can-Do” to a “Can’t Do Much” Man.

    For years, Jim did all of the grocery shopping and ran all of the errands. I was grateful to be at home with Michael and Jon, doing my work in our home and for our “business.” Jim really enjoyed shopping, being out and about, interacting with people. He misses that now.

    He is overcome with tremendous guilt, when he is reclined on his futon nest watching me clean, do laundry, cook, etc. Sometimes he tells Dr. K and his nurses, “Rose won’t let me do anything!” And that’s not accurate, because I caution him about overdoing and put the kibosh on things, which I know are beyond his stamina level now. That’s my responsibility as his loving wife and caretaker.

    After the sprinkler incident, he realized that I’m right. He basically lays on the futon either snoozing or watching TV (World Cup and Ascot Races these days), only goes outside for a moment to take out trash or go to an appointment. He gets zero exercise. But, how does he exercise, when he is utterly fatigued? My morning walks give me more energy than when I have to skip them. I think I’ll try breaking out the Qigong video to see if we could do that together when he’s awake.

    Jim knows that “just being” is wonderful and nothing short of a miracle given where he was a year ago. We’ll get through it day by day, the only way possible!

    Donna ~

    I’m so sorry that you all battled colds! Ugh! But I’m happy to hear that you’re well now, and they didn’t develop into anything more than a persistent cold.

    Yes, John is diplomatic and understanding. He often reminds me that Jim is a man, and men are stubborn, and “we like to be in charge and fix everything.” John sees both sides and supports each of us as we find our path.

    How dear that your Jim washed the garage for Nick’s homecoming! Aww … Was he expecting Nick to be spending a lot of time in the garage as an infant? That is just so sweet. And you’re right that men tend to do whatever they can think of to be a helper.

    I want to see Daisy digging and barking at waves!!! Quite often Jim and I talk about how much we miss our Bonnie lass and wish we could have another dog. But, we are realistic and know that this is out of the question. I do not have extra energy to care for a dog.

    If you have any photos of Daisy, please post them. I live vicariously!

    Thank you all for your love, prayers, healing, positive energy, and for walking beside us on our journey. We love you, and you are all in our prayers.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  11. #556
    Distinguished Community Member Jeanie Z's Avatar
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    :) Rose I wonder if there is not a group who could put together your tables and CD rack. Like the Elks, Kiwanis, Jaycees, Habitat for Humanity, etc. Many groups do volunteer to help those in need of assistance.

    My Mother called the high school principal of the school near her and the principal sent a student to help her. Another time she sent a teacher and it was free.

    Did John ask his nephew to help? I wish I lived close as I am very mechanical and I could do it for you.

    Tell Jim and Jon hello and you try to get some rest. You are all in my prayers. With love, Jeanie :)

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  13. #557
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    callyflower~

    Your vacation plans sound like lots of fun, although ziplining would scare the wits out of me (fear of heights). I had to look up “daith!” I learned something new from you again! I hope it helps quell your migraines.

    A 96 year old hospice patient should get whatever she wants. Ack! You know that Big Pharma isn’t happy at all about states legalizing MJ or MMJ. They’d much prefer people being addicted to opioids, and thanks to them we have an opioid crisis in our country.

    John, who will be 50 this year, is convinced now that he wants to take CBD oil. He takes meds for hypertension and high cholesterol. He loves steak, eggs, and salt. Of course, I’ve been gently encouraging him to cut back on all of those things. So, I’m ordering the CBD oil, which we take, for him, and I’m hoping that he has good results. I know that I feel better, and Jim’s overall condition for a Stage IV cancer patient is incredible. I think everyone, regardless of health issues, would benefit from CBD oil.

    Cancer has changed our lives in so many ways, and one of the hardest changes for Jim is going from a “Can-Do” to a “Can’t Do Much” Man.

    For years, Jim did all of the grocery shopping and ran all of the errands. I was grateful to be at home with Michael and Jon, doing my work in our home and for our “business.” Jim really enjoyed shopping, being out and about, interacting with people. He misses that now.

    He is overcome with tremendous guilt, when he is reclined on his futon nest watching me clean, do laundry, cook, etc. Sometimes he tells Dr. K and his nurses, “Rose won’t let me do anything!” And that’s not accurate, because I caution him about overdoing and put the kibosh on things, which I know are beyond his stamina level now. That’s my responsibility as his loving wife and caretaker.

    After the sprinkler incident, he realized that I’m right. He basically lays on the futon either snoozing or watching TV (World Cup and Ascot Races these days), only goes outside for a moment to take out trash or go to an appointment. He gets zero exercise. But, how does he exercise, when he is utterly fatigued? My morning walks give me more energy than when I have to skip them. I think I’ll try breaking out the Qigong video to see if we could do that together when he’s awake.

    Jim knows that “just being” is wonderful and nothing short of a miracle given where he was a year ago. We’ll get through it day by day, the only way possible!

    Donna ~

    I’m so sorry that you all battled colds! Ugh! But I’m happy to hear that you’re well now, and they didn’t develop into anything more than a persistent cold.

    Yes, John is diplomatic and understanding. He often reminds me that Jim is a man, and men are stubborn, and “we like to be in charge and fix everything.” John sees both sides and supports each of us as we find our path.

    How dear that your Jim washed the garage for Nick’s homecoming! Aww … Was he expecting Nick to be spending a lot of time in the garage as an infant? That is just so sweet. And you’re right that men tend to do whatever they can think of to be a helper.

    I want to see Daisy digging and barking at waves!!! Quite often Jim and I talk about how much we miss our Bonnie lass and wish we could have another dog. But, we are realistic and know that this is out of the question. I do not have extra energy to care for a dog.

    If you have any photos of Daisy, please post them. I live vicariously!

    Thank you all for your love, prayers, healing, positive energy, and for walking beside us on our journey. We love you, and you are all in our prayers.

    Love & Light,



    Rose
    Hi Rose,
    Glad Jim is still doing well. As I observed in my friend when they had a stroke and a few of my other male friends with injuries, doing nothing is a huge bruise on a man's self worth. It would be good if you could find some things he could do to help you that are either within his ability level or something more mental so that is brain stays in good shape(inactivity make brain cells get lazy I'm told) and he still gets the feeling of being needed. I often have to go to more lengths to help people feel needed when they are being cared for. I make them feel needed in simple ways like asking for advice etc as I'm sure I have talked about before. As for exercise with fatigue a few people with fatigue tell me they feel better if they push past the very beginning of the fatigue and then rest when they get to the next stage of fatigue because it increases the stamina. I imagine some gentle dance or walking could be the best thing.
    Last edited by funnylegs4; Yesterday at 02:09 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  15. #558
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    IMG_6118.jpgIMG_6118.jpg This is Daisy at the golf course for brunch, Rose! She was a big hit and now has her own styrofoam water dish with 'Daisy' marked on it :) She slept through the night last night (yay!) and is growing very quickly. She gets into mischief but she makes us laugh all the time too. I had a long chat with Nick on the phone this afternoon and Jim went to see him this morning. He's fine and planning his 30th birthday party (end of August)! I can't believe that my baby is going to turn 30!!! His birthday list is quite impressive - a new Ipad, new MacBook Pro, two new Liverpool kits (home and away), a 4K cable box, a night in a downtown Ottawa hotel and of course World Cup tickets for 2026 for the matches in Montreal. Not hoping for much!!! And that's just today's list! Anyway, never say never is my boy's motto, or you could say 'dream big' LOL. Sending you and everyone here on CN2 much love, xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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