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My Husband, My Life, My Love, My Family, My Cancer

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Comments

  • sondraf
    sondraf Member Posts: 1,679

    My great uncle is almost 90 and is the last of a set of five brothers, the baby of his generation. There is no one left to talk to about how things were or popular music, or people they once knew. Ten or fifteen years ago he would meet up with all of his buddies for coffee and chat most days and now they are all dying or have died. The only person left is his psycho ex wife, but really, the family only had them divorce a few years ago to protect certain assets for him (a very very very long story and she has mental health issues for very very very specific reasons). But with no one to talk to they sort of drifted back together. The last time I spoke to him he mentioned just wanting to die at this point as all he does is medical appointments for his back and its painful and there is little QoL, but I wonder if part of it as well is feeling like there isn't a place for him anymore in this world.

    Woke up to the news that the Pfizer vaccine has been approved for the UK. Let's see what happens now I guess, and how political its going to get.

    Karen -I am sorry to see you are in pain and can't take a lot of painkiller types. Ibuprofen does the trick for me, so I hate it when they ALL say 'take paracetemol' because its practically useless. Naproxen works but makes me feel really ill so I avoid that too. I hope they can get it under control for you soon - were you still considering going private?

  • mara51506
    mara51506 Member Posts: 6,469

    Karen, I am so sorry about your pain as well. I don't find paracetamol useful except for headaches and cold. I take advil as needed. Mostly with food. Hope you have some relief soon.

  • micmel
    micmel Member Posts: 10,054

    I always go back to my medical marijuana in addition to Percocet 5 mgs. Lowest mg. As long as I have food I’m ok. I hope they find something for your pain. It nags at you and it gets to the point to where you just want to scream.

  • mara51506
    mara51506 Member Posts: 6,469

    One rant I have as someone who lives on side streets that are not plowed first, when they bother to do it, why can't they put sand down. If I did not have anti slip soles, I would have fallen for sure. I forgot my cleats. Made it but felt uncomfortable. Should be better going home.

  • micmel
    micmel Member Posts: 10,054

    I have issues walking on uneven surfaces. I never understood why, but neuropathy is the culprit. I don’t like walking in the snow.

  • mara51506
    mara51506 Member Posts: 6,469

    After my infusion, I will stick to main streets for the most part. When I walk after lunch, I will remember the cleats.

  • micmel
    micmel Member Posts: 10,054

    Be careful Mara. Hope you’re feeling ok after Infusion!

  • illimae
    illimae Member Posts: 5,724

    I’ve got the same trouble with my walking due to neuropathy. I seem to walk more on the outside edge of my feet, balance is not great and I have to be careful and deliberate when walking. I’ve always been a foot dragger too and opted stumble or trip because I don’t pick up my feet. Fortunately, I found some trail running shoes for the mountain, to handle the rocks and slope of the land better. Here’s a pic, they’re great and have super grippy tread.

    image

  • mara51506
    mara51506 Member Posts: 6,469

    Those shoes look great Mae, should help a lot. I really didn't slip and slide but I will stick to main streets so there is more stability. My vibram soles are great.

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Mae..do those shoes feel okay with Xeloda feet? I am looking for new hiking shoes, but have burning on outside of feet. Are they true to size?

  • mara51506
    mara51506 Member Posts: 6,469

    Mel, I feel fine, should be better going home. Thank you so much. Just bored with all the waiting.

  • mara51506
    mara51506 Member Posts: 6,469

    Well finally got home after a LONG day. I did walk both ways, it did have a lot of icy patches, my boots did not slide around a whole bunch but I did not try to do fast unless I saw dry pavement. Way home, I took it up main streets for quite a while. Only had an issue where the curb curved down but still did not slide out of control. I swear, if you do have to walk around in the winter, vibram soles are the way to go. I have also gained a fair amount of weight so I need to address that issue with less peanut butter. Smaller portions too.

    Feeling little tired but everything fine in my appt. Heart still healthy so continued Herceptin, will have MRI on brain this Friday. Not too nervous but always welcome pocket jumpers. Next walk around my place, I will put cleats on shoes. The sun was beautiful though and that made the walking easier after treatment.


  • illimae
    illimae Member Posts: 5,724

    Sandibeach, so far I’ve been lucky to avoid Xeloda feet and they are comfortable and very flexible. The grey cammo are more flexible than the black (I got both) but the elastic around the ankle can feel tight sometimes. The black ones are a bit less flexible but the ankle is like any other sneaker. Both have the same super grippy tread. I didn’t stumble or slide on a single rock while wearing them.

  • illimae
    illimae Member Posts: 5,724

    Mara, I missed your post. In your pocket for the MRI, mine was rescheduled, so waiting for it right now.

    Gamma knife to one spot on Friday, if it’s still there, it’s possible the new combo already got it but not very likely. Gamma knife is using the mask this time. Yay, no screws to the forehead.

  • micmel
    micmel Member Posts: 10,054

    those look great Mae. I showed my DH. He agreed. Good choice. I may have to get them. I have grey sneakers that are light. I'm a feet dragger as well. I'm just plain clumsy. No other way to put it. Maybe they will help.
    of course showing up for pocket duty

  • illimae
    illimae Member Posts: 5,724

    FYI, this is how flexible the grey are, the black are less so but still very forgiving.

    image

  • micmel
    micmel Member Posts: 10,054

    That is what I call flexible!!!! Wow

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719

    Mae - loving the shoes! Is it not worth noting that we celebrate something like ‘ no screws to the forehead’? You are a Star ⭐️ missus!

  • mara51506
    mara51506 Member Posts: 6,469

    I love that there will be no screws to the forehead this time Mae. I was fearful of that with the whole brain radiation, the mask was uncomfortable while they made it and molded it, but it was fine. The freakiest time mask wise was when we were mapping for my craniotomy and I was masked into an MRI and then had the head cage around. Luckily I was able to just fall asleep. The MRI sounds are peaceful to me now. I also love your shoes. Mine kept me on my feet to an from the hospital over slippery areas. If I walk in the morning, I will add cleats though as obviously sun melted some of the snow and it will freeze. We will see, if not outdoors, will at least use the treadmill.

    Karen you are so right, we will celebrate that but it is definitely worth noting. Hope you are feeling less pain today my fellow Scot.


  • candy-678
    candy-678 Member Posts: 4,168

    Mara- Pocket duty Friday for MRI.

    Mae- Pocket duty for Gamma Knife Friday.

    Just reading along. Day about over here-- 5pm. Nothing new here.

  • mara51506
    mara51506 Member Posts: 6,469

    Mae, I will be in your pocket, did not realize that my scan and your treatment are on the same day.

    Candy, sometimes nothing new is not a bad thing.

    I did go out with DB and SIL this evening. I must say, daytime walking would be a much safer proposition. My whole sidewalk and drive in front of my building and in front of a few houses was a sheet of ice. I will have to wear traction cleats outside on Friday morning when I leave for the hospital since it will not be light out yet. I am glad for the early appt but not stoked about the walking on hard ice. My new boots/walking shoes are amazing because even though the ice had frozen up, I did not slide out of control. I just took wee, quick steps and got up the stairs which were mostly clear.

  • mara51506
    mara51506 Member Posts: 6,469

    Mel, I was a foot dragger earlier this year when I fell by tripping over the sidewalk paver. Then I tripped at home over the slight rise between living room to kitchen area. I put my step bench there to avoid tripping as it is impossible to miss. I used the right leg which was the weaker one to step up on the bench. Has helped to strengthen my foot and I can consciously lift it so much easier now, even when walking tired. I am thankful that happened so I could fix my leg.


  • micmel
    micmel Member Posts: 10,054

    I shuffle. I don’t like walking distances. Bothers my spine. As long as I am sitting in my chair , I am fine. But I’m so envious of the way you walk. It’s inspiring my friend.

  • Rosie24
    Rosie24 Member Posts: 1,026

    Mae and Mara, pocket duty for Friday! Fingers crossed while I’m in your pockets

  • tanya_djamila
    tanya_djamila Member Posts: 1,537

    Good evening living room loungers.

    Moth I think booboo is using methadon for pain. MM works well for me for pain. They come in capsules now, edibles, wax, and of course vape or actual smoking. I take capsules and finally found a day and night combination. Hope you find relief, manageable SE’s and something to smash that cancer.

    Mel please consider reducing to 100. It may be all you need for a better QOL.

    I’m in your pockets Mae and Mara for Friday. Candy I think yours are in the 21st right? I’ll be there. My MRI is Dec 9th.

    I got a $7000 bill from hospital for my pain management surgery so now I have that headache to figure out or pay or tear my scraggly ibrance hair out. That price is after Medicare part b and my insurance paid. Mae so glad you were able to stop your appt before the nightmare no coverage.

    Karen sorry to hear you’re in pain. I hope you find relief soon.

    Sondra that’s some story about your great uncle. Wow it’s really a tough place to be in

    Mae rose shoes look comfy and I have a nasty fall under my belt from dragging my numb feet around too

    Waving hello to everyone. I missed a day bc I got my flu shot yesterday. Group hug 🤗 and good night.

    Tanya

  • micmel
    micmel Member Posts: 10,054

    I should be tired , I didn’t have a nap today. My friends funeral is on my mind. Especially since I couldn’t get there because of covid. My one good friend went and she said it was hard to distance. I still feel like sometimes such shit happens. No rhyme or reason. Just Bam. Something terrible happens to good people (BooBoo. My sweet friend). It’s days like this I really wish I knew there was a god. I just have such trouble believing one being. I think when our song is over and we’re done dancing life, we just sleep with no conscious anything ever again. I struggle with these things. Sorry if it bothers anyone.,,, just another wrestling match for me. And my mind that never stops

  • illimae
    illimae Member Posts: 5,724

    Mel, no bother. I think you all know I’m not a believer, so I have no struggle there but I do understand where you are coming from. No idea what, if anything comes after death but I hope my brain fires off dreams or memories to ease me out, I’d love to see and play with all my dogs again, that would be an awesome “afterlife” scenario.

  • micmel
    micmel Member Posts: 10,054

    I feel the same way. I want to see my Tag again. That’s what I’d love. I wouldn’t be upset if I got to see my dad again. But I just think it’s too much to think one person can be so much. Plus all the mean hate and harm ones cause others. Meaningless cancer in kids. Why! ? They have done nothing but be born. It’s infuriating sometimes when bad things just keep happening with no good anymore. At least I have to strain to find some.

  • booboo1
    booboo1 Member Posts: 1,196

    Mae, Mara,

    Reporting for pocket duty. I’ll bring Cinnamon buns with icing on top. Been craving that for some reason.

    Karen, I am using Methodone for pain (5mgs) along with 5 mg. of Oxycodone. I was skeptical, but decided to try it. It’s working pretty well. I only need 2 Oxys a day now. I am very scared of that drug due to an overdose several years ago. Anyway, maybe something to ask your MO about.

    Mel, it’s ok to struggle with the spiritual side. We all think about what comes after we close our eyes for the last time. Keep looking for the answers. I think it’s part of our journey. Hugs girl.


  • mara51506
    mara51506 Member Posts: 6,469

    Laurie, I have been craving them myself to be honest. I will happily eat them.

    Mel, I often wonder if I will get to see my Mom after I pass away and have decided to believe I will. If I do not and just disappear than it will be similar to sleeping at night where overall we are not there unless a dream when we are near wakefulness. If there is nothing, it is no different than us not being there in past time. We won't know enough. I plan to believe it to my dying day to see people and pets I have lost. It will make the fear go away. No one knows for sure.