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Thread: Jim's Journey

  1. #191
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    Default Today's Appointment

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    It sounds like J is receiving good care, and all the needed tests are being done. That is good news.

    Aww… thank you for saying that you miss Jonathan. I wish you, and everyone here, could have met him. Like Michael, he was filled with joy and exuded love and sweetness. I guarantee you that he would have flirted with you!

    Virginia ~

    You are so right that it gets harder before it gets better. Most of the grieving parents I’ve met through the years acknowledge the 6th month mark as the beginning of their most intense grieving. That, and the second year of grieving, are the most difficult periods. We have to live through all of the “Firsts” ~ first Christmas, birthday, etc. without our loved one. When those are all done, we now have to adjust and adapt to our physical loss and “new normal.”

    TODAY’S APPOINTMENT

    Jim was taken in almost immediately upon our arrival by Jane, the lead technician. She was lovely and allowed me to tag along. She showed us the dressing room, where Jim would change into a gown for treatment. Then, she took us into the treatment room, so that I could see the machine and the entire set up.

    Jim sat down on the scan table, as another technician attended to him. Jane walked me out to the corridor to direct me to the lobby. I asked her to excuse me for a second, as I ran back to Jim, kissed him, and told him I love him.

    Scheduling

    Jane then told me that Jim was scheduled for 9:30 a.m. tomorrow and for the remaining 14 days of treatment. I had just learned in the morning from the call confirming that Jim didn’t have any diet restrictions or need port numbing that Jim was scheduled for treatment beginning tomorrow. We didn’t expect it until next week, and I was hoping to buy our car this week.

    I told her that Jim couldn’t handle a morning appointment, as he is up all night going to the bathroom thanks to Lasix, and he only sleeps a couple of hours at a time. He needs the morning to nap, if possible. He goes to the bathroom frequently. He needs to eat breakfast, take his meds, etc.

    Plus, we are depending upon John for transportation, and he works and cannot commit to 9:30 every day for 3 weeks. He finishes at 2:00, so any time after that works for him. On the way home, John told us that he’d already asked his daughter if she could transport us, should he have a scheduling conflict. She gets out of school at 1:30, because she’s a varsity athlete, while her classmates get out at 3:30. She said yes.

    Jane explained that they are extremely busy, and she wasn’t sure how she could juggle the schedule. But she told me that she would confer with Dr. S and the lead therapist to find a way to accommodate us.

    My Meeting with Dr. S

    On my way to the lobby, I saw Dr. S standing at the reception desk. I greeted him and told him that we were hoping to work out the scheduling for Jim’s treatment. He said, “Let’s go in here and talk instead of in the corridor,” as he guided me into an exam room.

    We sat down, and he looked at me with concern, “You seem quite stressed. Let’s talk.”

    “I am stressed. My husband has Stage IV cancer, and this is his third year on this journey. Our oldest son passed in April, our youngest son in 2003. I’m not a young woman. I fear losing my husband. Life has been rather difficult for us. This isn’t new for me. I’ve been stressed all of my life.”

    By the end of our 10 minute conversation, he essentially knew our life story. He sat looking straight into my eyes, listening to every word, processing it, maybe even trying to imagine it. He realized that I know a few things about medical issues from caring for our boys. He treated me with respect and care.

    “We have a wonderful counselor here, who is just so compassionate and understanding. If you would like to meet with him, I will gladly give you a referral.”

    I thanked him and told him that I have a wonderful support group of dear friends, who have seen me through decades of crises. “That’s great! I’m so glad you do. But just let me know if you want to chat with the counselor. We need to take care of you too.”

    “How much time will these treatments buy Jim?”

    “Oh, I can’t answer that question. It’s not a cure, but it will shrink the tumor, and the goal is to reduce his pain. When estimates are made, they’re done on a median, so half will live longer, and half will not live as long.”

    He paused. “I prefer to talk about living life, while we’re here, every day. Say the things you want to say. Do the things you want to do. Make sure that all of your affairs are in order and organized. Live the best way you can for as long as you have. However long it may be, and no one can accurately predict that.”

    For a young man, Dr. S is quite wise, thoughtful, and he is on his way to being a spectacular physician.

    I felt blessed today, and so grateful that Dr. S is Jim’s rad onc. He promised us that he wasn’t going anywhere. I pray that is true.

    And, I know that our Precious Angels placed him in my path at that moment. There are no coincidences. I need to tell our story, and Dr. S needed to hear it. He will take that with him on his journey as a physician. It’s a learning experience for him too.

    I apologized for taking up his time, which should be with his patients. “No, not a problem. I’m glad we had this time to talk. I will see what I can do to work out viable appointment times for Jim. We will try our best.”

    About 15 minutes later, Jim was done. It went well, and his only discomfort was in his neck. We’ll see how he feels tomorrow.

    John picked up Pane Mediterranean bread for Jim at the store, which Jim requested after John said he’d go to the store, while waiting for us. For lunch we had veggie bacon, lettuce, tomato, and avocado sandwiches on the bread. Jim enjoyed every bite.

    TREATMENT APPOINTMENTS

    We are taking tomorrow off and starting Thursday and Friday at 2:30. The following weeks will be at 3:30, every weekday for 2 weeks, then 3 days the 3rd week.

    I’m dreading this Thursday and Friday, as winds with 50 mph gusts are predicted, and that is quite unpleasant when you’re outside.

    THE CAR

    My plan is to call the Toyota dealer tomorrow and ask someone to walk me through the Express Service buying process. Maybe if I can buy it tomorrow, I can have it delivered on Saturday, and John could be here to help me with it.

    Buying a car is one of the biggest purchases we make as a society, next to housing. And, I don’t know a thing about it, and during this super stressful time, I’m buying a car.

    I’m guessing most psychologists/counselors would argue that this is the wrong time for me to be doing this. But we need a car.

    On the one hand, I just want to get it done to cross off of my list. On the other hand, I have trepidation about doing this by myself. I’m going to tackle it with a phone call to the dealer. If I get flustered or lost, I will call John.

    That’s all the news up to the minute.

    Thank you all so very much for your love, prayers, support, and constant friendship. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  3. #192
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    ((((((Hugs to All)))))) ~

    I didn't get a chance to call the Toyota dealership today. Jim didn't sleep well during the night, so he napped for most of the morning, and he woke up around noon.

    I can't talk on the phone, when Jim is sleeping, as it will disturb him. The same was true with Jonathan, which is why I can't have phone chats with friends. It's enough of a challenge to find those moments, when I can call medical people or make other vitally necessary phone calls.

    My biggest task today was laundry. All my jeans, then several tops, then Jim's fleece shirts. Done. I had to unload and load up the dishwasher. Then, it was time to start getting tonight's meal ready: baby red potatoes, washed, peeled, chopped, fresh green beans, snapped, baby carrots all steamed with sweet onion, garlic and mushrooms. With our fairly new Cuisinart steamer, I can steam them all at once in about 20 minutes.

    Jim wanted to take another nap this afternoon, but he couldn't seem to fall asleep. He doesn't seem anxious, but maybe subconsciously, he is anxious about the treatment starting tomorrow. We'll explore that later this evening after dinner.

    Last night, Jim held my hands and said, "I'm so sorry we had to lose Jon for you to be with me. But I am so grateful that you are with me now, for all of these treatments and appointments, and the hospital, and everywhere. I feel so much better with you there by my side."

    "So do I. Beside you is where I want to be and will always be."

    It is bittersweet. But our love for each other and our children transcends all obstacles, and we work together to find our way every day. Like our children, we soldier on.

    No time, brain cells or energy to buy a car today.

    We are running low on groceries, and by Saturday, I will need to order from Instacart. I can't add that to a treatment day, regardless of the time of the appointment. The appointment alone is enough stress. I need to be super vigilant for Jim ensuring that he's up to each day's task of treatment.

    That leaves Sunday, probably like Saturday, a busy day at a car dealership, so how much over the phone or on line help might I receive?

    And, of course, Monday through Friday next week, we have radiation treatments at 3:30 in the afternoon.

    Every time we go to the hospital or medical facility, we take off our clothes, which I take straight to the laundry in the garage. John's mom taught me this lesson years ago. She was a nurse in a hospital, and when she came home from her shift, she stripped off all of her clothes, put them in the laundry, and took a shower. We used to, and we still should, shower, but we don't.

    So, that means I'll be doing laundry every day, when Jim isn't napping, to keep up with our going to treatment wardrobes. I also have to cook and clean the house during this time.

    When am I going to be able to buy the car?

    I keep going to the website looking at it, watching the video about the Express process, reading Yelp reviews, trying to determine whether we need any "add ons..."

    Is it too much to ask that our giant van magically turns into a RAV4 over night?

    If only it was as easy as Instacart.

    Thank you all for your love, prayers, and continuing support. We love you and pray for you and your loved ones every day.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #193
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    ((((((Hugs to All)))))) ~

    Jim was taken in immediately after signing in. They're on a tight schedule, so no delays.

    I walked to the large corridor in front, bought an Aquafina, texted a friend, set up the iPad, then decided to close up to go check on Jim. I turned around, and there he was! It was about 18 minutes altogether, with taking off his shirt, lining him up, zapping him, putting his shirt back on, and Jim walking out of the office to me in the corridor.

    Out of breath, Jim said, "Some lady wants to talk to us, well to me, but I want her to talk to us. Something about diet."

    So we walked back to the office, where the dietician was holding the door open for us, then we walked back down to the area where Jim had his treatment to her office. Jim was gasping.

    I asked her why we were meeting with her, and she introduced herself as the dietician for the cancer unit.

    I was tending to Jim, asking him if he needed his inhaler. He declined. Then, I said to her, "He's out of breath, because he's walked too much, and he had a rough night and day on the toilet. What would you like to tell us, so I can get him home and comfortable?"

    "Do you have any dietary concerns? What's your weight? Have you lost/gained weight?"

    Jim said, "I weigh 170 pounds today."

    "Much of that is water. His normal weight is about 155-160." I would guess that he has about 20 lbs of water weight, but I won't tell Jim that. I mean, the paracentesis resulted in 2.5 liters of fluid, and he was still full. I told her that Jim has Ascites, and he had paracentesis, didn't work, next question.

    We explained that we are vegetarians, and Jim emphasized that we eat organic food mostly. I explained that we avoid berries, because he has low WBC, and the vinegar wash didn't work for us. He's content with packed organic diced peaches and pears for his cereal. I should have told her that he also eats 1/4 c raisins, 4 prunes, half a banana on his Cascadian Farms Honey Oat Crunch cereal. But Jim was exhausted, and I wanted to call John to pick us up.

    I took her card and thanked her, and I assured her that I am feeding Jim well and understand nutrition. I forget to mention Orgain too. Oh well.

    So, then the long walk for Jim back to the main corridor to call and then look for John. He was exhausted.

    I know that she meant well, and I'm sure that many of her patients need her counseling on nutrition. But, we aren't among those patients.

    I was trained by an outstanding dietician/nutritionist, who cared for Jonathan in ICU and loved him, me, Jim, and we loved her. She is no longer with the hospital. I also learned a tremendous amount from parents of children with GTubes and adults with GTubes, particularly with regard to blenderized diets.

    He's not losing weight and gaining fluid, because of his diet. He only has so much room for food and liquid. It's a delicate balance. He is drinking his Orgain shakes again, which is fluid, of course, so he cuts down a little on his water. He needs the protein.

    While we waited for John to arrive, we watched out the corridor windows, which face the drop off and valet service entrance, as 4 paramedics carrying full packs walked in. I noticed a city police officer sort of patrolling the corridor prior to our visit with the dietician, and she opened the door for the paramedics. A few minutes later, an ambulance pulled up. All traffic ceased after the paramedics arrived. No drop offs, no pick ups.

    I spotted John walking up from the parking garage, and we went out to meet him on the sidewalk. He said that there is an emergency, so access was blocked, and he had to park in the garage.

    John took the satchel from Jim, and Jim started walking at a fast pace ahead of me and John to get to the car. We caught up to him, and I told him to slow down. He said he just needed to sit down, relax and get out of there.

    On the drive home, we chatted with John about his daughter's big game tonight. It's like high school volleyball playoffs, which start countywide now. Our opponent has home court advantage, because their record is better than ours. John's daughter is the absolute star of their team. It is nerve-wracking for the parents, but John agreed with me, when I said, "All we can do is our best. Just try. That's our best."

    This is what I used to say to Jonathan and Michael. And did they ever try and do their best every time!

    His daughter will be transporting us tomorrow. He said that she'll probably find a Starbucks nearby and get a coffee, while she waits the full 18 minutes for our call. It could be less tomorrow. I pray that we win tonight (I say "we", because I attended the same high school she attends). We will be prepared for a congratulatory speech or a consolation speech.

    I once again told John that I didn't have a chance to buy the car, and he said, "Rose, please stop torturing yourself over the car. We have you and Jim covered, and we're here for you. If you get a car, that's great for you, but it isn't necessary for us. Right now, let's just get Jim to and from these first appointments, and don't worry about the rest. We're here. I understand."

    Jim thanked John for reassuring me and said that I'm getting "stressed over buying the car. We want to do it, of course, but not if it's going to add to Rose's stress." John agreed.

    Of course, my stress adds to Jim's stress, and he doesn't need any stress beyond what he already has. So, the car may be tabled, while we get through this radiation treatment process. Which is, of course, the whole reason why I wanted to get a car for us, so John wouldn't have to transport us.

    Now, it's time to find out whether Jim has an appetite. It was 100 degrees here today, and his day was stressful. He was on and off of the toilet so many times, I can't even count. Nor can he.

    Thank you all for your love, prayers, and support. Please also pray for Californians, who are being affected by the fires throughout the state. Thank you. We love you and pray for you and your loved ones always.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #194
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    Dear Rose,
    I am getting caught up on your news today. I am surprised how quick the treatments are. I am not surprised by the dietician and the long walk - people who work in hospitals have no clue about patient experience... it always surprises me, but that is the way it is. I am so happy again and again about John's kindness and generosity. I'm so glad too that his daughter is learning this from her father. I hope she won her game! My dear, I know it's hard, but perhaps the fates are telling you that now is not the right time to buy a new car. The extra stress is just toxic right now. I am reminded of my friend Eva Kittay's concept of 'doulia'. She means that when we are intensively looking after someone we love, we need the same care that is naturally offered to a new mother. We care for the new mother because we instinctively know that her first job is looking after her baby. It's the same with you and Jim. You need everyone to take care of needs that you would normally manage right now so you can focus on Jim. That's why it's the right thing for John and his daughter to drive you to appointments. I hug you, Rose! I wish all the best outcomes for the treatments for Jim. Thinking of you both always and of course of your sweet sons. 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. #195
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    Default Friday Treatment Cancelled

    ((((((Donna)))))) ~

    Thank you for your hugs, wisdom, love and enduring friendship.

    John is truly wonderful, and a blessing to us. He is beside us all of the way. We are family.


    TREATMENT CANCELLED

    Yesterday, I texted John to let him know that Jim would not be going in for his treatment. Of course, John is deeply concerned about Jim and me, and he said he'd text his daughter to cancel her picking us up to save me the time, while I addressed other matters.

    Jim didn't sleep Thursday night. He was in pain and on/off the toilet constantly. When I went to bed, he was curled up ready to go to sleep. Unfortunately, I slept while he suffered. He didn't call me or tell me he needed me. So, I slept. Of course, I feel guilty.

    First thing at 6 a.m. yesterday, I gave him a breathing treatment and a Tylenol with Codeine. His pain was excruciating all across his shoulders, neck, back, down to his waist, and on his side where his tumor is located.

    After a brief nap, he thought he could manage breakfast and asked for eggs on toast with one veggie sausage. I prepared our breakfast, and as he smelled the food cooking, he became nauseous. So, I grabbed the basin for him, while I turned off everything on the stove.

    His pain was severe, and he could barely move. I gave him a THC capsule, and he rested and napped briefly. Then, it was off to the bathroom.

    Little to no urine output, so it was time for Lasix. Jim's gut is enormous. It's tight. The gut drainage did nothing to help him. We had to try it, but it was fruitless, and just one more thing for Jim to endure. As he did, with humor, a smile and kindness.

    You know, when the dietician called us in for a consult Thursday, Jim insisted on carrying the satchel and opening doors for us and letting us go first. As we were leaving, I said to the dietician, "No matter what, Jim is a gentleman. He doesn't put himself first."

    She smiled, "He's a keeper."

    "Yes, he is." And then my heart sank. He's a keeper. But he has Stage IV cancer, and I may not be able to keep him much longer. He is suffering. I don't know how much he can take, nor do I want him to do anything to make him feel worse. I didn't say that, but I thought it.

    CALLING IN THE CANCELLATION

    The receptionist seemed befuddled as I told her who I am, and that I was calling for my husband, and gave his full name. She asked who Jim's doctor is, then called Jim by a different name, which happens to be the name of my former spouse oddly. I repeated Jim's name, and she found him on the computer and verified his birthday with me.

    When I told her that Jim was in excruciating pain, she said, "Are you taking him to ER?"

    "No." Why would I do that? Okay, I'm sure it depends upon the patient, but I don't think he needs that. And he hasn't.

    "Does he need pain medication?" I'd already told her that he took Codeine, and it was helping moderately, but not enough for him to be able to manage treatment.

    This woman has met us several times, every time we've gone into rad onc, she's at the desk, unless this was a new person.

    She said that she'd inform Dr. S, and I wondered what patient name she'd give Jim and what she'd tell him about Jim's pain.

    I didn't hear back from Dr. S., so I'm sure that he was too busy to respond.

    WHY THIS PAIN HAPPENED

    Jim described the way the techs helped him off of "the board" Thursday, using a sheet beneath him to lift him up. The sheet was not taut enough and slipped, so they pulled him up by his left arm (the side of his tumor), and sat him on the side of the table.

    They were in a hurry, because rad onc is like a drive thru burger joint now. In and Out.

    Everyone we see in the rad onc waiting room is a Baby Boomer. When I or we sit in the corridor, we see an endless stream of Baby Boomers and older patients walking in and out. Far too many of them have cancer. And our medical facility is not equipped to handle this influx of cancer patients.

    They are stressed, they don't have enough equipment to meet the demand, they work until 6 or 7 p.m. after their hours, and they make mistakes. They get flustered, they're tired, and they rush and don't think before they pull the arm of a patient on the side of his tumor, which they just zapped.

    With all of their experience, they don't stop to think about how fragile their patients are. That is dangerous, and clearly not helpful to Jim, who needs this radiation to keep living for awhile longer.

    TODAY

    Jim managed to get a few hours of sleep last night, and today, he is basically pain-free. Just a twinge with his rib. He said this is the best he’s felt in “months.” I think that may be an exaggeration, because he has had some good days in between all of the not so good days.

    He ate a smaller serving of his morning cereal/fruit feast. Later he had an Amy’s pot pie. He made his espresso (decaf), while relaxing and watching movies.

    Yesterday, as I was cleaning and doing laundry, Jim offered that I don't need to accompany him to every treatment appointment, which would give me more time to get the things done around the house, which need to be done. I am torn, because I want to be with him, to help him, and to know what is happening to him. On the other hand, I do need more time to catch up on cleaning and laundry.

    Jim said this after returning from a bathroom trip and finding me splayed on his bed trying to open the shutters next to his bed and swiffer the dust on the sill. There is no clearance between the bed and the windows, so it is a feat perfect for Simone Biles. Dust is piling up. I have to do something about it. I gather that Simone is busy these days.

    Thank you, Donna, and all of our dear friends, for your love, prayers, hugs, support, and compassion. We pray for you and all of your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  11. #196
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    Rose, so sorry Jim could not keep his Friday appointment. I am so hoping he will be able to keep all the rest of them and get maximum benefit. I can see where tugging on that side would hurt him. I expect he needs to tell them on every visit not to pull on him on that side.

    Glad he is feeling better today.

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  13. #197
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    Ohhh dear, Rose. I am so sorry that Jim had a terrible night and missed his treatment. I am so very sorry that he was in pain. Happy though, that he is feeling better after a rest. Why do the hospital staff have to hurry and cause injury?! This makes me crazy - Would they do this with a newborn baby? Because that is how delicate Jim is now. Jim's and your experiences remind me of this piece that my friend and cancer patient Sue Robins wrote about her treatment: In my large mom purse, I carry around my high expectations for health care experiences. Being the mama bear of a kid of a disability has taught me a lot over the past 13 years. Now I’ve become a patient myself. Clinically, I know next to nothing about breast cancer, but I do know a boatload about compassion, respect, kindness and dignity.
    I know the little things mean a lot. I know it takes only a minute to ask ‘what matters to you?’ I know that patients should have information shared with them in a way that they understand. I know the value of a kind touch and a gentle gesture. I know that hospital processes strip away dignity from already vulnerable patients. I know that what is a big deal for patients is often not a big deal to staff. I know that health care inflicts trauma on patients and that staff and physicians should be working hard to minimize that trauma with every single encounter. Most of all, I know that health care professions are intended to be healing professions, and I’m always disappointed when I bear witness to the contrary.
    I had the notion that cancer patients were treated well. I think my tumour has been treated very well – and for that I am extremely grateful. I am also thankful to live in Canada, where inpatient hospital costs are publicly funded, and except for the ‘me not-working part’, our family won’t slowly bleed into bankruptcy like my American friends. The one thing I’m not sure about is if I’ve been treated as well as my tumour.
    Last Tuesday, I had a partial mastectomy, another biopsy and a lymph node removed. So many strange encounters happened that day and I’m not planning on shutting up about best practice in patient and family centred care any time soon. I still believe that the only way change will happen is if we keep speaking up to tell our stories.
    My husband and I arrived at the hospital at my appointed time, 6:30 am. The receptionist looked up at me and said sharply, ‘we don’t open until 6:45 – take a number and sit down.’
    Like I was ordering deli meat, I took a number and dutifully sat down in the crowded, dirty waiting room. Posters were tacked up slightly askew on the walls and the fear was palpable in that little windowless room. We were mostly women waiting for breast cancer surgery – some alone, some like me, lucky enough to have a partner by their side.
    ‘Number 51’ they called. I stood up and followed the technician into the treatment room. I know they knew my name, and being referred to as a number set an uncomfortable tone for the rest of the long day.
    Later, in a curtained pod pre-surgery, the nurse was assembling the equipment to start my IV. ‘Can my husband come in now? I need him to hold my hand while the IV is started,’ I asked, a confession of my needle fear. ‘No,’ she said, not making eye contact with me. ‘He can come in after.’
    I shrunk back into my stretcher, afraid to make a fuss, hot tears forming in my eyes. The IV poke hurt, as did the tourniquet, and I had nobody to hold my hand.
    Later, in radiology, wires were inserted in two places in my breast while I’m squished in a mammogram machine. This practice, done while I’m wide awake, is nothing short of barbaric. I hadn’t slept or eaten and was already whacked out with fear. My ears start ringing, my vision blurred, I couldn’t breathe and I knew I was going to pass out. The radiologist and tech stopped and gave me a break before I hit the floor.
    ‘I’m sorry for being such a baby,’ I said, very Canadian in my apology. Later, the Internet tells me that up to 50% of women feel faint during this procedure. Why doesn’t anybody tell me that so I can be prepared? Why isn’t there standard sedation? I feel grateful that my nurse friends coached me and I knew to ask for an order for sedation at pre-admission clinic. But the little Ativan doesn’t help much with my horror at more needles jammed into my breast and the sight of black wires coming out of my body.
    I had counselled my husband on the drive to the hospital to ask the surgeon to talk to him afterwards so he can find out how my surgery went. ‘Okay,’ he says, strong, assertive and protective.
    The conversation with the surgeon goes like this:
    Mike: ‘Can you come and tell me how it goes after Sue’s surgery?’
    Surgeon: LAUGHS and says, ‘Oh no, I’m too busy to do that. There’s a follow up appointment in a couple of weeks.’
    (It has been six days and I’m still not sure how my surgery went. I don’t know how to get this sticky glue from the tape off me. I am bruised and scarred. I have blue dye seemingly permanently tattooed in my skin. My armpit is numb. My steri-strips are coming off. My hand has swollen up. I’m still really sore).*
    Back from surgery, the nurse is eager to get me up walking so they can discharge me. I’m in a hospital gown. ‘Can she have a robe?’ my daughter asks, helping me out of bed. ‘No, just tie up the gown,’ the nurse responds. No? I’m cold and shivering and I have no clothes under the thin fabric gown. My daughter shakes her head at the nurse, goes to the supply cart, digs around for a robe and gently places it around my shoulders. My girl walks with me, pushing my IV pole while I shuffle to the washroom.
    Another missed opportunity for a simple kindness. What is particularly awful to me is that I know to ask for what I need. My family is not afraid to speak up. But we were all dismissed, disregarded and not listened to in the smallest but most significant ways. I saw many people in the waiting room – what of the woman who was alone? Or the older lady who didn’t speak English? Or the woman there for a double mastectomy, her sad husband by her side?
    This is random but relevant: Cleveland Clinic has released another great video about the patient experience. I’d add to their concept of ‘words matter’ that ‘actions matter’ too.
    I am very fortunate that my dear daughter (a second year nursing student) stayed with me for the past ten days to be my caregiver. She distracted me, kept me company, fed me, looked after her little brother, drove me around and removed my dressings. Before she left, she gave me a list of Ella Rules to consider. Rule number ten said: Ignore stupid things – let yourself be upset but then let yourself move past it. This is sage advice from a 20 year old who has always been wise beyond her years.
    I am not ungrateful for treatment, but I don’t feel grateful for my care. I do promise to go into every new health encounter with an open mind. As Ella advises, I will endeavor to either politely respond to or shake off negative experiences. For my own mental health, I can’t stew in this darkness. I need to stay in the moment and look for the light.
    I’m not Number 51. My name is Sue. I’m a writer, speaker, mom of three, wife to Mike, advocate, friend to many. I like sushi, baths, books and yoga and I happen to have Invasive Ductal Carcinoma. Please treat me as well as you are treating my tumour – for I’m a real, live and still-breathing person too.
    *note: I have an appointment with my family doctor today and I know she will take care of me. This experience has compounded my philosophy about the importance of primary care, even when you are in cancer care and surrounded by a bunch of specialists. Family physicians and family practice matters.
    **edited to add: My family doctor fixed my ratty dressing, printed off the surgeon’s report, explained the contents of the report to me and then gave me a hug. THIS is what I choose to remember.

    Extreme kindness is so important and people looking after Jim in the hospital need to take the time it takes to treat him gently. And to support you! I hope sometimes someone brings you a cup of tea while you are waiting for Jim. I there is a hug at the end too, for you. 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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  15. #198
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you for checking in with us. Jim has had another good day, and he feels like he will be strong enough to have radiation tomorrow. I texted John, and he's on board to pick us up at 3:15 for the 3:30 appointment.

    I am continuously cautioning Jim about his movements. He forgets and stretches or turns in a way that could cause strain on his back and his left side. Even when he uses his right arm, he is straining his back to a certain extent. He often says, "It didn't hurt when I did it." No, but it might later.

    How is your jaw? Healing prayers on the way for you.

    Donna ~

    Thank you for sharing Sue's story. I'm so sorry that she has had to endure such poor care.

    I will say that Jim's experience was unusual, based upon his previous care for his brain neoplasm in December 2017. The problem is that there are too many patients, not enough equipment, and not enough staff. That is why they rushed with Jim.

    This is one of the reasons why I feel that I need to accompany Jim to these appointments. I know that I can't be in the room, when he has the treatment, but I can be there before and after it. If he's okay after a few treatments this week, I may take a break and try to buy a car.

    I know. I know. But it would be so much easier if I could transport Jim. We will see, and we will take it as it comes, one day at a time.

    Thank you all for your love, prayers, support, and walking beside us. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  17. #199
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    Hi dear Rose,
    I am glad that Jim is feeling better but I hope he stays that way after having his next treatment. I am glad that you are with him too - what a blessing for you to be with him. It must be so scary for you both. I just wish the technicians took time to make sure that Jim is taken care of - I sometimes wonder if they realize how fragile their patients are!
    Rose, your love for Jim and his for you are such an inspiration to me and I know to everyone else here too. This beautiful poem by Pablo Neruda reminded me of you and Jim. One Hundred Love Sonnets By Pablo Neruda More Pablo Neruda

    I don’t love you as if you were a rose of salt, topaz,
    or arrow of carnations that propagate fire:
    I love you as one loves certain obscure things,
    secretly, between the shadow and the soul.

    I love you as the plant that doesn’t bloom but carries
    the light of those flowers, hidden, within itself,
    and thanks to your love the tight aroma that arose
    from the earth lives dimly in my body.

    I love you without knowing how, or when, or from where,
    I love you directly without problems or pride:
    I love you like this because I don’t know any other way to love,
    except in this form in which I am not nor are you,
    so close that your hand upon my chest is mine,
    so close that your eyes close with my dreams.

    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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  19. #200
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Donna ~

    Thank you so much for Neruda’s wonderful poem. I will share it with Jim after the football game. He’d be happy to turn off the game for me for a few minutes, but I’d prefer him to read it, when he’s quiet and more in the mood.

    Today was an interesting experience.

    PAIN

    When Jim woke up about 5:30 this morning, he was in severe pain. I gave him a Tylenol with Codeine, and he was able to go to sleep. He even slept through me putting on my shoes in the living room, and leaving for and coming home from my walk.

    When he woke up at about 9:00, his pain was better, but still there. I gave him his steroids, CBD and THC. He took another nap, and his pain was minimal and tolerable. He was determined to go for treatment today.

    TRANSPORTATION

    John texted that he’d forgotten that he and his daughter had teeth cleaning appointments at 4:00, and our appointment was at 3:30. We thought that Jim might go in quickly and be done by 3:50, and we’d wait until John finished his appointment, maybe 45 minutes. Jim didn’t want to do that. "I want to come home as soon as we can after the appointment,” Jim said. “Let’s take the van.”

    So, I prepared myself for helping to get Jim in and out of the van without hurting him.

    About 2 p.m. John called to say that he talked to the dentist, rearranged appointments, and that he would pick us up, and his daughter would bring us home. It worked out perfectly, and we didn’t have to go in the van.

    THE PEOPLE WE MET

    The Twins and Dad

    As we approached the rad onc hard-to-open doors, we spotted a young man sitting in the oversized chairs in the corridor with two babies in their carriers on the floor at his feet.

    Jim and I are attracted to babies, puppies, kittens, bunnies, like they’re magnets, and we’re lead.

    We walked over, and I said to the man,”Twins?” He nodded yes. Of course.

    Two absolutely adorable little boys, with their binkies and their rattles, and their tiny toes and hands. We talked to the boys, and they looked up at us with wonder and smiles. We congratulated the man and wished them long healthy, happy lives. He thanked us sincerely.

    Golly, I wonder who might have been involved in that encounter? Hmmm … Yep, if you’re thinking what I’m thinking, you’re right. Jonathan and Michael must have had something to do with our meeting these precious twins, facing each other in their carriers, with their tiny toes touching each other’s tiny toes.

    Lisa, A Married Couple, and Us

    We checked in, and as always we smiled at everyone in the room. Jim always says, “Hi Folks!” and waves to everyone. For Jim, this is the cancer version of a pub. Everywhere I’ve been with him, this is how he approaches the situation and the patients and loved ones. We’re all in this together. I know your pain, and you know mine.

    Lisa

    We sat in front of a trembling, frightened woman, probably in her 40s. Rail thin. A walker in front of her. She had been there at 3:00, and it was nearing 3:30 now.

    Jim looked at her and asked, “Are you in pain, hon?” She nodded yes, and he said, “It will be all right. What are you here to have done?”

    “I’m having a mask made for my face, and I’m so scared,” she cried.

    Jim then told her that he had a brain tumor in 2017 and wore a mask for 10 treatments. “It wasn’t fun, but it wasn’t terrible. And I don’t have cancer in my brain anymore. It’s scary at first, but you’ll adjust to it, and they are very nice here. I know it’s all strange. But you will be all right.”

    At that point, Jane popped her head out the door to call Jim in for his treatment.

    Jim said, “She has been here since 3:00 waiting, and she’s frightened and nervous. Please take her first. Please.”

    Jane turned to Lisa and said, “I’m so sorry. But you’re scheduled for 2 different machines. I need the machine I’m using for him, and your machine is being washed down for you. Do you want some water? A warm blanket? I’m so sorry. I’ll make sure your technician knows that you need to get in right away. What can I do for you?”

    Lisa thanked her and began crying. She thanked Jim and told him to go ahead. So, he did, and he assured her again, “Everything is going to be all right. I’ll be thinking of you.”

    At this point, Lisa was sobbing, so I moved over to her side, and put my hand on her shoulder, gently caressing her. In her tears, she said she’d lost both of her parents, her son is serving in the Marines in Okinawa, she has a daughter and a granddaugher, and she’s been through so much in just 2 months, and she doesn’t want to die, and she can’t die, because she’s needed …

    I comforted her and told her that tears are healing and necessary. "Stop holding them in, honey, because you’re trying to protect your loved ones. You have to cry, you need to cry, you deserve to cry.”

    The lady on the other side of the waiting room, whose husband had been called in before Lisa, came over with tissues. She said, “I’m so sorry for what you’re going through, dear. This is very hard, I know. I’m praying for you.”

    Then she went back to the other side of the waiting room, crying. I continued to comfort and calm Lisa by asking her about her family, and she said her husband was “no good,” so “my son became my protector, my strength …”

    “Your hero,” I said.

    “Yes, my hero, and it’s so hard on him to not be here now with me. I have to get better, I have to beat this.”

    “Right now, what are you afraid of?”

    “The mask.”

    “Okay, let’s focus on that now, and put the rest aside. One thing at a time, okay? Okay. Jim had a mask, he even brought it home. It’s in our garage in a bag. It looks like a hockey goalie’s mask. It’s actually quite humorous.”

    She smiled, “Really?”

    "Yes. It helps so much to look at things with a sense of humor, when all around you is falling apart. You can save it for future Halloween parties. Trust me.”

    I asked Lisa if she had anyone to lean on, and she told me that she has a boyfriend, who dropped her off, and will be back to pick her up. I told her that I was very glad that she had a loving boyfriend.

    By then Lisa was finally called in, and she was calmer now, and maybe for the first time in her 2 month journey realized that she isn’t alone.

    The Tissue Lady

    So, I walked over to her side, sat down and asked her if she was okay. She nodded, as she wiped her eyes, tears just flowing like a faucet. “I had to walk back here, because I knew that I would start crying, and that wouldn’t help her. And I’m a caregiver, so I know better.”

    I said, “I’m a caregiver too, which is why you and I just took care of her.”

    She didn’t know what Lisa meant about “the mask,” so I explained it to her.

    Her husband also has lung cancer, but had his lung removed. Now, he has tumors in other locations and a heart issue, which he’d never had previously. We talked about chemo, immunotherapy ...

    She asked me what kind of caregiving I’ve done, and I told her in two sentences about Jonathan and Michael, and more tears from her. “I’m so sorry,” she wept, “I can’t imagine how hard this must be for you now with your husband, after losing your sons. Oh my.”

    Lisa’s Boyfriend

    Then, in walked Lisa’s boyfriend, and the Tissue Lady (I never got her name) called to him, “She just went in a few minutes ago.”

    “Oh, okay, I’ll just text her to let her know I’m here.”

    “She probably won’t have her phone with her, and she may not be able to move if they’ve started the measuring,” I said.

    He smiled, “I’m going to text her anyway, so she knows I’m here.”

    He talked over the chairs, as Tissue Lady asked him questions, and then joined us sitting across from us. He shared that she had tumors on her tonsils. Her PCP thought it was her ears, as she’d blown an ear drum last year. She went to an ENT, but he didn’t check her tonsils. Finally, her boyfriend asked her if she still had her tonsils, and she said yes. That led them on the path to finding out that she has cancer. It’s been about 2 months.

    She was losing weight and fainting. Finally, she went to our hospital’s ER, and a CT scan revealed tumors on her tonsils.

    He assured us that Lisa has a great support network, and “I’m the weak link, because I don’t know anything about medical stuff.”

    “But you love her and are here for her,” I smiled. “That’s not a weak link. That’s the strongest link we have.”

    Then, I told Tissue Lady and Lisa’s Boyfriend about our wonderful nursing service and encouraged them to use only that service, should it become necessary. Tissue Lady agreed and said that her husband is now on palliative care.

    Jim appeared, and I waved to him, as I’d moved to the other side of the waiting room. It’s a pretty small room. I stood up, shook their hands, told them they’d be in our prayers, and “We’re going to be here everyday for about 3 weeks, so we may see each other again.”

    IN THE CORRIDOR WAITING FOR JOHN’S DAUGHTER


    As a gentleman approached behind me, Jim sitting across from me, smiled, and said, “Hey! How are you doing? Is everything going okay for you?”

    I turned, and the gentleman had a prosthetic arm with a claw rather than a hand.

    He grinned, “Yes, everything is going pretty well. I’m learning how to use it, and it’s working really well. I like this one, because I can grab and lift things, and I can open bottles of water. I have another one with a hand, but the hand is just for show, like when I go to church.”

    Jim commented on how well he used his arm, and he said, “Well, I only have one arm, so I have to make this one work.”

    I shook my head in amazement. “You have two arms, as far as I can see.”

    “You know, you’re right. Thanks!”

    Friendly parting with “take care” and “see you again” and I just looked at Jim. We didn’t have to say a thing. We just knew what we were both thinking and feeling.

    I told him about Lisa, the Tissue Lady, and Lisa’s Boyfriend, while we waited for John’s daughter.

    The next person we saw was Mark, the CT scan tech, who treated us so well and just loves Jim. He was on his lunch break! He stopped to tell Jim that he was looking good, asking how he was feeling, acknowledged me, and said we were in his prayers always.

    When Jim had his CT scan, and I told Mark about Jonathan, Mark was crestfallen. “Jim talked about Jon all of the time, and you. I’m so sorry.” He had tears welling.

    It seems no matter what time we are there, Mark walks by. Hmmm …

    OUR CANCER COMMUNITY

    We are part of a community now. A fellowship of those suffering, and those dedicated to healing and caring for them.

    Jim and I greet everyone with a smile, and those smiles are most often returned. If you’re in a medical facility, it’s likely not for a good reason. When you come to this medical complex, you have a problem and are seeing a specialist, having a test, or an infusion. And when someone smiles at you, it’s hard not to smile back. And even if you don’t smile back, someone you don’t know smiled at you with understanding and compassion.

    We also talk to other patients, when we feel they might be receptive, or as with Lisa, when she needed help. Alone, afraid, and there we were, probably her parents’ age, with a lifetime of experience in caring for others.

    The first thing I said as I approached Tissue Lady was “Cancer sucks!”

    She nodded in agreement as she wiped her tears.

    We are all in this together, so let’s reach out and support each other. Today, I felt like we established a mini support group, and everyone of us walked away with a new perspective and feeling understood and accepted. And Loved.

    And none of this would have happened, if we all hadn’t needed it to happen. We all needed something today, and we found it in each other.

    It reminds me of all of the days, weeks, months we spent in the hospital with Jonathan and Michael through the years, and how many friends I made in ICU, and the incredible stories they all had to tell, and how they touched my life.

    Many times, people are uncomfortable with reaching out to each other in these situations, but Jim and I are not those people. I’ve spent 50 years in this environment, and Jim has had 27 years in hospitals, doctor’s offices, ICU, step down, ER, you name it, and now about 4 years on his own journey. That is probably atypical.

    We know how comforting it is when someone understands your pain and fear and reaches out to comfort and reassure you. We know how good it feels when someone cares about you, shows an interest in you, loves you.

    So, in every way that we are able, we will continue to be supportive of every patient and their loved ones, who we meet, and thankful for the medical professionals, who work tirelessly to treat and care for us.

    Thank you all for reading this very long post, and for your love, prayers, and unending support. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 10-29-2019 at 10:23 AM.
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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