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Thread: Cancer- the six letter word that changed my life.

  1. #91
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    seaofgladness

    As I sit and read your heartfelt story of strength and love between you and your husband and feel like sadly I'm following in your shadow. Its incredibly hard and truly unfair to watch the love of your life struggle to complete the simplest tasks. My husband has been my guiding light for the past 18 years. He's protected me and taken care of me since the first day we met, now it's my turn to repay him for his kindness and fight for him! I tell family and friends that the sliver lining during this tragedy is the depth of love and renewed relationship that I have been able to experience with my husband. It's a gift that has more meaning than any I've ever received.

    Please know that you are stronger then you realize! I pray that you continue to experience cherished moments with your husband!
    Keeping you both in my prayers!

  2. #92
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    Thank you for your prayers and support. And of course answering my many questions.
    Today was a ok day. Right now the challenge is having him have a BM everyday or every other day. He drinks smoothies now and havenít really eaten much other than yogurt. This morning we have a heart to heart. He was concerned his family would be mean to me once he is gone. We had two miscarriages and he thinks his mom will blame me. Itís how old school people from a village minded area are I guess. Then he fears his dad will say how I have not completed my board exams and got a license to practice medicine and how he thought he was marrying his son to a doctor. Anyhow I expect such things from his family because we kinda got married without the full support of his folks. Hubs kinda just did what he wanted to do when it came to marrying me.
    Anyway I told him to not worry about it. Of course itís gonna hurt when they say such things right after I lose you but Iím hoping they wonít. Who knows.
    Itís true that the silver lining in this is knowing how deep your relationship was. I mean we have always been very much like friends and open with each other and it makes me sad that his only worry is me. How Iíll be alone and how everyone has someone even the parents and I would have no one. I tell him how Iím ok. Iím independent and somehow even though we were married for 11 years he never allowed me to be completely dependent on him and so I am capable of handling things.
    Today he has gotten a bit more weaker, he still cracks jokes. When we were taking off his Tshirt before bed and my dad was helping me he goes ď no no dad will see my tattooĒ Iím like whatcha talking about you donít have a tattoo! He goes Iím just joking lol. Iím like ok silly itís time to sleep.
    He is sweet and a big kid with a big heart. It was hard when he kept saying, I just want 10 more years with you. I didnít know how to respond to that. I told him even if he didnít do anything but sit on a recliner and I had to bath and dress and care for him Iíd happily do it if t meant Iíd have him. He is like whatís the use of having me around like that. I said well at least Iíd have you and you wouldnít be gone. We have some hard talks. Idk how I manage to not cry and have heart wrenching conversations. He keeps telling me to not cry in front of him cuz he canít handle it. I have kept that promise so far. Idk how long. I feel myself cracking when I see couples now. I think soon I wouldnít have that. Gosh this is hard but itís ok. I keep telling myself I have had the chance to be loved and cared for and I know what that is like. And Iíll cherish that and the memories that come with it. And make a few memories now.

  3. #93
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    Hello everyone, been a few days since I posted and so much has happened.
    His hospice bath aides would not come to just transfer him when he needs a bath and bathroom. They wanted to do just sponge bath even though he could stand on his own and needs help with balance and coordination once he is up.
    Initially we were all upset with the hospice people and thinking the bath aides were just lazy since all they had to do was transfer and I was doing all the actual bathing and dressing him up. Anyway long story short, they stopped coming Wednesday and we have noticed that he is in fact weak. We tried bedside commode and also had a PT friend come and show us the sliding board and hoyer lift and all.
    My back has been hurting since yesterday from trying to help him up from bed to wheelchair and today after the bath itís been even harder.
    At this rate I think by next week it will be sponge bath and diapers.
    How did you all handle the last few weeks? How was the sponge bath experience?
    He keeps asking me why he isnít dying yet. Itís been three weeks in hospice already! I think he just doesnít want to be a burden to anyone so wants to just go fast. The worst is that he is fully aware and conscious of all things so itís just being awake and seeing people struggle to give you a bath or bathroom break. He keeps telling us, ď please donít throw me outĒ. Itís so sad to hear him say that Cuz it means he must think at some point if he becomes too much we would just check him in at a facility and leave. Iím sure people at this stage have many fears that are not just about the disease or their own death but about how the ending will be. I am going to try to keep him using the shower bench and toilet for this week and then talk about sponge bath and bedside commode or diaper.
    Bedside commode on sliding board from wheelchair was hard. Once he sits it was hard taking off the shorts and then after wiping putting it all on without knocking anything over.
    To give him as much dignity and much sense of independence is what I wana do and I hope I can do it without hurting myself or anyone else. And itís hard cuz I canít express my back pain or tiredness without him feeling bad that he is the cause of it. This is just a sucky situation in general I think. Hope things donít get too horrible.

  4. #94
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    You don't need the diapers once he becomes bedridden, they would be a lot of extra work in terms of lifting.

    You can't do the lifting alone. We had three adults and it was still hard. You'll wreck your back. I have a friend whose back is still wrecked from caring for her husband and he's been gone 15 years.

    About all I can say about this stage is that it was hell, but that looking back at it there are things I do treasure, weirdly. We used to eat dinner in her room every night; we had a table set up there and if she was doing well she'd eat at the table with us, and days that weren't going so well we'd eat at the table and she'd eat at a bed-tray I made for her.

    If the commode is set right next to the bed, if he has enough strength remaining in his arms and coordination he can swing himself into it without using his legs at all. But if he's lost coordination and muscle control and finds it hard to manage, a bed pan is less trouble. Describe the situation exactly to the folks at the medical supply store to get the best one; they don't cost very much. Or simply describe the whole bathroom situation and ask how they would recommend handling it. In my experience they're very knowledgeable people and not at all out to make a sale.

    See if you can get one of those back braces that people have for heavy lifting work... I've never tried one but it might help.

    Clothing becomes difficult at this point and for management purposes, the less the better, especially once bed-ridden-- We went with a very short flannel nightgown with long sleeves that I had, and also with flannel shirts but those didn't work as well.
    Last edited by GBMsibling; 10-15-2017 at 12:32 PM.

  5. #95
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    Hey everyone

    Today has been a ok day. He has not used hoyer lift of sponge bath yet. We still help him to the toilet and have a bench bath.
    Sometimes I wonder how long we can do this but I think as long as it doesnít hurt anyone and as long as we can will try to help him keep his dignity.
    At times even now I canít believe this has happened. I still clearly remember the day we went in thinking his neck pain was a pinched nerve. I still remember the cloths he was wearing. Itís so unreal. Today he was talking about all the things he didnít get to do for me, his parents and my parents. But I told him how although he didnít get do all these materialistic things he did do a lot for all of us and he did leave his mark. There are going to me lots of things with evidence of his touch and skills on it.
    He often blames the chemo and wonders why we even took it and says itís the chemo that messed up his walking.
    He never even got Temodar after his first dose and had just 6 avastin infusions.
    I think itís just a hard place to be in kind of just waiting for the end with no plans for the future. I try to have him try to enjoy the now. But I donít know what he goes through. Itís easy for me to say stuff.

    He is afraid he will be unconscious like on the recliner or middle of the shower or something. Iím assuming itís usually not waking up after sleep? How long did your loved ones go without any further treatment before being unconscious?

    He is looking forward to leaving this earth soon cuz he doesnít wanna be a burden but Iím thankful he is here one more day.

    Never in my life did I think this would happen to me but here it is. Unreal.

  6. #96
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    My sister went about two weeks between her last Avastin infusion and losing consciousness, but that's just her; it's pretty unpredictable. After she lost consciousness, though, she lived six weeks, which is really unusual. I think a week or at most two is more common, but again there's no saying.

    It's good that you're able to talk to each other about what's happening. I think that's too hard for most people.

 

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