Cancer/illnesses, and caregiver, support thread

[gnalan]

Rough night last night. I was watching TV and the left side of my face went numb and droopy, my left arm went numb and tingly, and I was getting confused. I started freaking out thinking I either had a stroke, or was having one, and ended up going to the emergency room. All the tests they were able to run came back normal, except my blood work which showed my potassium was low.

Thankfully the numbness and confusion went away, and my arm and face went back to normal, but I spent 4 hours in the ER. I'm glad it wasn't a stroke, or anything else that serious, but I was scared that it was.

They gave me some potassium while I was there to help bring it back into normal range, and then sent me home. So far today I'm feeling ok, and I've already talked with my family doctor today too to work on getting more lab work done to see if I need to be put on a potassium supplement.

I just saw another doctor on the 18th, and I'm still waiting on a call back from them to schedule surgery.

I've put myself last for so long, and put off getting my own health checked out trying to take care of everyone else, and now I'm trying to put more focus on what I need to have done. I probably could have prevented a lot of the things I'm dealing with now, and the surgeries I'm going to end up needing, if I would have paid more attention to myself. I have a really hard time putting myself first, but I'm going to have to change that especially after the scare I had last night. I can't ignore my problems anymore and just expect them to disappear. They haven't disappeared yet, and my health issues are only getting worse.

[gnalan]

My fiance got fitted for a scooter on Friday. Still not sure how we're going to transport if from place to place, or how to get it into the house yet either.

I don't want to get rid of my Volvo, and she told me she has a hard time getting in and out of it and that she doesn't feel safe in it. I know they make things to put on a trailer hitch to hold scooters, but I don't have a trailer hitch to put one on. I'm not sure what to do.

I was hoping her health was turning around and she'd start getting better after her surgeries, and after getting rid of her thyroid cancer, but, unfortunately, it hasn't worked out that way. It's rough watching her go downhill as fast as she is, and there's nothing I can do to help besides be there for her.

Her CHF isn't getting any better, and she's out of breath just walking from one room to the next. Now she's afraid her kidneys are starting to fail again, since she told me last night that she's starting to feel the way she did the last time she ended up in the hospital with kidney failure. When she did come home she had a catheter bag, which I didn't mind emptying when it needed it, but I didn't like when it was red and full of blood clots. Blood doesn't bother me, it just scared me and her both because we didn't know what to do.

She's got so much going on, health wise, that her quality of life isn't what it used to be. We haven't gone out on a date in at least a year and a half, so we try to find things to do at home. She usually ends up falling asleep if we're watching a movie, or sitting and talking, or sometimes when we're just trying to make plans to do something. That doesn't bother me as much as it does her, and I keep telling her it's ok. She doesn't sleep at night very well at all, and when she does she has trouble breathing and wakes up coughing/choking throughout the night, so if she's able to sleep ok during the day I just let her sleep.

I don't want to lose her, and I'm not giving up on her, but sometimes it seems like we're both trying to find different ways to annoy each other so that we will split up. I know she's afraid of what's going to happen, so I don't know if she's trying to keep me from getting hurt, or I'm trying to keep myself from getting hurt, or something completely different.

We feel like an old married couple that's been together for 40 years. We fight and bicker with each other all the time, and then keep going on like nothing happened. If that isn't true love I don't know what is.

[gnalan]

Been awhile since I've been on here, or posted anything on the site.

My fiance is contemplating a major surgery, with major risks involved, and has been pretty depressed by it. She knows she needs to do something if she wants to get healthy, and her doctors keep telling her she could die if she doesn't. I don't really know what to say to her, or how to help her, but I'm trying to be as supportive as I can.

My health has been up and down, and now I'm on more meds to try to help. Nothing major like what she's dealing with, but nothing minor either.

Life has been tough this past year, ever since the quarantine started, and trying to get back to normal life has been difficult for both of us. I can't wait for the pandemic, the required masks, and curfew, to be over with.

Hopefully 2021 will be a better year.

I hope everyone here is doing well, and your families too.

[gnalan]

As much as I hate to, I posted my car up for sale in the classifieds. My fiance isn't able to get in and out of it as easily anymore since her mobility has gotten worse along with the neuropathy in her legs and feet.

They're still having trouble bringing her TSH levels down too ever since she had her thyroidectomy. They've increased her meds, changed them, and have even tried different combinations, but it's still too high. Hopefully they can figure something out that will work for her.

She's still working out the details on her other surgery that she needs, and the physical/mental/emotional toll that it's causing her hasn't been helping anything. With everything going on it's been pretty rough on us both.

Right now she can barely move around, and with her CHF it makes walking even more difficult. She has a power chair to help her get around now, but it's not doing too much to help her since I have no way of taking it anywhere. That's why she asked me if I could find a different vehicle that is easier to get in and out of, plus has a trailer hitch on it to carry her power chair with us.

[volvolugnut]

I am sorry to hear both of you continue to have health issues. I am at a loss to suggest anything helpful.
I assume you will use the trailer receiver hitch for a power chair rack.
volvolugnut

[gnalan]

Yes, that's what the hitch would be for. We also talked about a minivan that's wheelchair accessible that she could ride in/out of, plus it would also be helpful for my dad and his wheelchair. I'm not sure if the wheelchair accessible minivan requires any special license to drive, or auto insurance for it.

[gnalan]

My fiance was admitted to the hospital yesterday, and her BUN and Creatinine levels are extremely high. She's been through kidney failure before and was able to recover from it, so I'm hoping she can do it again. If not, the next step would be a kidney transplant.

She's been through hell and back with all of her health issues, and as soon as she starts feeling ok again something else happens. She's only 32, she shouldn't have as many health issues as she does. She's had so many surgeries that I've lost count. She had thyroid cancer, which luckily they found by accident, and they were able to remove her thyroid and stop the cancer from spreading. She has CHF, so she's not able to walk very far without getting short of breath. With all of her other health issues, and the pain she's always in, when she's alone she cries. She thinks she's a burden to everyone, and doesn't like that she has to ask for help with everything. She can't even stand up by herself. I've told her many times that she's not a burden, and I haven't been able to get her to think that she isn't. I love her more than anything, and it breaks my heart to hear say the things she does.

I just wish they could fix all of her health issues so she could enjoy life again. I honestly don't remember the last time I saw her smile. She puts on a fake smile every now and then, but it's not the same. As much as she tries to hide how she's feeling, all it takes is one look into her eyes to see what she's really feeling.

[gnalan]

Sorry I haven't been on here to update in awhile.

My fiance ended up coming home on the 16th. Her kidney function went back to normal, thankfully, but they're still keeping an eye on everything.

She now has a home health nurse that comes out twice a week to check on how she's doing, plus a physical therapist and an occupational therapist that come out twice a week. They're hoping to get her up and moving around a little easier. Right now she's having a hard time just walking to the bathroom and back before she's short of breath.

We still don't know what stage her heart failure is in, but we know it's diastolic heart failure now. The right side of her heart is thickening and not working like it's supposed to be. I don't remember what the percentage was on her discharge paperwork, or if it was listed on there, but one of the first things she handed me was a booklet on living with heart failure. I know some people can live a long time with heart failure, depending on how soon it's found and what the treatment plan is, so I'm trying to look at the positive side of things.

I'll try to keep everyone updated when I know more. You've all been great, and we appreciate the support and the prayers. Thank you all.

[gnalan]

Her kidneys are back to normal, and she's not retaining water as bad as she was. She still isn't able to do much, unfortunately, and she usually stays up all night and then sleeps most of the day. I think she likes her time alone at night, which is fine. I'm ok with whatever makes her feel comfortable. I'd rather see her happy doing what she wants to do, since she isn't able to go out and do as much as she used to do, than to see her miserable trying to make me happy. We still spend time together when we're both awake, which we both enjoy, and we haven't given up on each other. She has a great team of doctors, so she's in good hands.

I'm still hanging in there too. I decided to keep my Volvo as well. A few more things left to fix, and then hopefully I can find a nice trailer hitch for it (assuming they make one for the S60). I found a 2 inch lift kit, https://crosscountryperformance.com/pro ... p2-chassis, but I'm not sure if I'll have any drivability issues. Has anyone tried to lift their S60, or any other P2 chassis, with a kit like this? I still need to find a safe way to get the car a little higher up off of the ground so she's able to get in and out of it a lot easier.

[gnalan]

I partially tore part of my right quadricep around my knee. I've been in pain before, but nothing at all like this. I start physical therapy this week, which I'm hoping does something to help without completely tearing the muscle. I can't straighten my knee out all the way, and even with my leg stretched out as far as I can comfortably go the back of my knee is about 3 inches above the bed. My left knee is already banged up, and has been for far too long, so it's been tough just walking/moving around. Even moving in bed causes so much pain that I wake up crying from it.

I ordered a bunch of parts before I messed my knee/leg up, so I haven't been able to do anything with it. Even driving is a challenge right now. I can't do a panic stop if I had to, so I've been driving slow and easy so I hopefully won't need to slam on the brakes.

It's been almost a month, and I'm not sure anything's healed up yet. My knee is still swollen, along with my thigh, just the way it's been since I first noticed I even hurt myself. I still don't know what I did, or how I did it, so I don't know what to avoid in the future.

My fiance is still doing about the same as she was. Thankfully she has more than just me that can help her, because I can't do most of what she needs help with right now.